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excituexkat - 8/5/2008 1:56:45 PM
My Email: skoolscool123@lvivs.com

Comments:
Hi Everybody, Glad to be the newest member here. I've been watching for a while and gotten good information. Thanks. I wanted some input here and I think that there are some good opinions going around. Honestly, I need to drop a few pounds. I'm four months past having my second baby and the weight just won't come off. Does any body have any tips to shed the baggage?

James Smith - 7/16/2008 12:43:07 AM
My Email: jamessmith222222@bimgir.net

Comments:
I found what I think must be a breakthrough in forex trading I've found a system that automatically trades for you and makes money, and lots of it. Is anybody following this thing.

James Smith - 7/10/2008 5:09:59 PM
My Email: jamessmith222222@bimgir.net

Comments:
I found what I think must be a breakthrough in forex trading I've found a system that automatically trades for you and makes money, and lots of it. Is anybody following this thing.

becky dyment - 6/15/2008 7:40:16 PM
My Email: bbbecki78@comcast.net

Comments:
My beautiful ten month old baby boy was diagnosed with a seizure disorder at 4 months. He is developmentally delayed and gets weekly PT and OT. He is currently on phenobarb and Topomax. He usually does well on those but occasinally has break through seizures and dosages keep increasing.

Rene Estaniel - 6/4/2008 7:02:05 AM
My Email: renestaniel@msn.com

Comments:
My child mary 2 1/2 years old was diagnosed with epilepsy. yesterday she started on 10mg topamax. we are so new to this. our child has after effects akin to a stroke. she has a "stroke gait" and has limited use of her right hand. I was going through your stories and I can't find (I still have a ways to go though) any one with a story like mine. Id like to join the group too. I have to say that I am not computer savy so i am begging your indulgence - what do I do now or next?

mvs raman - 3/12/2008 3:48:18 AM
My Email: mv_sundararaman@yahoo.com

Comments:
Hello doctor- Just wanted to clear few doubts. My would-be daughter-in-law had epilepsy when she was 5-6 years old. She has been on medication since & her parents say its cured. 1. Is she ok for married life? 2. Is it hereditary? can she have normal children? 3. what precautions do we have to take in case she gets married to our family- i.e diet or travel restrictions etc. thankyou MVS Raman

Carolyn Markmann - 11/16/2007 2:32:02 PM
My Email: carolyn.1977@hotmail.com

Comments:
Thanks for this site. I wish I had found it a year ago when our daughter was diagnosed with IS. The hardest part of this journey is not knowing where we're going to end up. Her seizures have now changed to complex partials and is taking Topomax, good to read up on how it affected other children. We're on wait list for Austism screening now too.

morganusvitus - 4/5/2007 7:10:42 AM
My Email: morganusvitus@web.de

Comments:
The site looks great ! Thanks for all your help ( past, present and future !)

DoniBee - 11/10/2006 1:15:14 AM
My Email: donibscott@sbcglobal.net

Comments:
Hope is the key to surviving all this! I am here to reassure as many of you as I can. I have not had a seizure in years now. I am one of the lucky ones who "grew out of them". I have had marriage, children, held jobs, driven and now am 54 years old. Many of us DO survive and do so quite well. The wonderful man I live with is 42 and had his first seizure 9/8/05. He has petit mal and grand mal and was diagnosed with small brain abnormalities that caused the issues. We had been together for 6 years by then. God must have known he would need someone who understood. As for children. My daughter was diagnosed with Grossmotor dysfunctia at birth. Her braindamage was a result of my toxemia and gestational diabetes, and heart trouble. My heart stopped and they jump started me. LOL To all you wonderful parents, who are seeking so hard! There is hope. She is now partially through college, becoming a psychologist. She is a mother with a 2 year old and a fine husband who supports her every effort. There is HOPE!

Farooq Zaidi - 10/12/2006 1:21:43 PM
My Email: farooqzaidi@yahoo.com

Comments:
I heard in the news and also got lot information on the web that Fish oil which contains DHA and OMEGA helps to reduce the spells and seizures. Can you include that in your treatment category so we can guage how many kids are getting better Thanks Farooq

y satya - 9/7/2006 5:28:16 AM
My Email: ysrinivas@hblnife.com

Comments:
satya is being represented here by her dad.she is a low birth weight full term baby. her mother ervous during pregnancy , she is vegetarian and non smoker,non alcohalic.her birth weight was

Geraldine Cataldo - 7/8/2006 1:25:20 PM
My Email: eoghancat@aol.com

Comments:
Just found this site through a Yahoo Group and I am very happy with it. I know that it is terrible that we find comfort when we find out that some other child has the same diagnoses as our own child. my son was diagnosed in nov 2005 with IS and with a recent EEG a slow spike wave was noticed which means that his seizure type is changing to LGS. It is really hard when you know that something is not right with your child and none of the Doctors belive you . My little man has been having startles since he was about 3 weeks old but these reflexes ar common in children with brain damage which my son has due to a stroke in-utero.Thanks sooo much for having this site.It shows that we are not alone.

monique rodas - 7/6/2006 3:52:30 PM
My Email: pbsnob33414@yahoo.com

Comments:
I am so glad for this website. I have a 9 year old daughter who has "Benign Occipital Epilepsy" and she was diagnosed at age 3 1/2.She is one her 4th medication (lamitical 100mg 2x day) but it has kept her seizure free for 1 1/2 years now. I just found out(last week) that my 12 year old daughter is now having "absence seizures". I am still in a state of shock...I just can't belive it!! Her peditrician tried to tell me that she ws "ignoring me" and "to wait until this fall and talk with her teachers about her attitude??" I had to get kinda "loud" with her and pretty much demand an EEG. I got the EEg on monday and was called Wed. with the results. It was "abnormal" and "showing partial" "absence seizures". I have to take my daughter back to Vanderbilt Childrens Hospital on July 20,2006 to see what the Noerologists has to say about this and what kind of drugs he will be putting her on. My daughter will just mid-conversation "stare" into space and after about 10 seconds she comes back?? and she always says "OK"?? She has no idea that she just "zoned out" and when you try to tell her she gets very defensive...so this should be just a wonderful,pleasent experience!! (LOL) I am still so upset that this doctor tried to blow me off. If I did not stand my ground and demand the EEG I would never have proof that she is not "just ignoring me" If you want to e-mail me please do so. I am in Clarksville, Tennessee. Have a great day everybody :)

lydia - 6/20/2006 3:12:43 PM
My Email: www.bethsgem@hotmail.com

Comments:
Well I was wondering what kind of sezures I have well when I have them I have my eyes starring usaully to the left and I shake and droll alot and i'm usaully in a fight before that. WELL THATS IT! PLEASE RETURN THIS MESSAGE! Oh and my warning is my left I getting really small. WELL THANKS!!!

annie - 6/2/2006 10:47:39 PM
My Email: anni_be@yahoo.com.au

Comments:
Hi, Ihave a 3year old nephew with Lennox Gastaut Syndrome and am researching information and contacts for my brother. His family live on the north coast of New South Wales, Australia. If there is anyone else in this area who has a child (or teen or adult)with LGS in their care, and would like to make contact with us to exchange information and/or experiences, we would be gratefull and excited to hear from you. Even if not in the area! If in the local area perhaps we can organise some sort of support group...? Regards and good wishes to all... annie

yvonne - 5/24/2006 1:25:48 AM
My Email: jherriot@bordernet.coma.u

Comments:
I have a 14 month old daughter with down syndrome and infantile spasms. she is otherwise healthy and happy. We would like to know if anyone has been able to control spasms without medication. Their side effects seem too much of a risk and not necessarily always help anyway. Diet and nutrician seem to play a major role also. Thank you Yvonne(Australia)

sydney - 5/19/2006 2:38:37 PM
My Email: vernedog2001!yahoo.com

Comments:
Hi. This website is so helpful and sincere!! Since we all have to get throught this the best way we can, at least we can know that we are NOT all alone in it. My son is Logan and he is 22 months old. He has had 4 seizures in 5 1/2 months and we will be doing an MRI in the near future. Good Luck to all of you and your families!!! my email is vernedog2001@yahoo.com

Shannon - 5/7/2006 12:03:24 PM
My Email: il_mom79@yahoo.com

Comments:
This web site has really helped me look more at the personal side of epilepsy not just what dr.'s tell us or what we read in reports and textbook type analysis of these specified diseases I think it is a great thing and I hope that in the future this web site will no longer have to be in use that medical technology will find a cure-all for epilepsy and we will no longer have to watch our children become so helpless during these episodes.

Lisa Curran - 4/22/2006 6:12:28 PM
My Email: lcurran@persona.ca

Comments:
I think this web site is grate!! I have three children who have epilepsy, and I hope I can get in contact with some of the families. I also welcome anyone who would like to get in contact with me. My oldest child is 7, and my other two are 3 years old.

Nikia Brown - 4/3/2006 8:55:02 AM
My Email: nikiabrown@optoline.net

Comments:
Hello All, I have not been on this website in a long time, however following my son's last pediatric neurology appointment I could not resist. In taking him to a new neurologist they informed us that he will continue to require medication for seizures that seem to have appeared from what we would consider "no where" and that he probably got seizures while I was pregnant. We have been searching for answers and I am hoping those on this site can relate.. Two years ago, the previous neurologist told us that he would probably come off the medication in a few years, once he passed puberty..now this doctor is telling us something different...do I take him again to see another one? We were all so excited about the possibility that he would not have to remain on meds for the rest of his life, however I think he was more disappointed then anyone. I told him not to worry that he would be okay..and that it was not a bad thing..given the fact that we nearly lost him that terrible day nearly 10 years ago...

Jennifer Reid - 3/28/2006 11:24:28 AM
My Email: jennifer_reid_574@hotmail.com

Comments:
Thank you for making such a useful site. Besides having Parker's story on it, I have come here many times just to look up information. I started by reading ALL of the Infantile Spasm stories. Now, everytime we are offered a new drug I come here to check the comments. I have even met with a parent who found my story and am planning on meeting another one. Thank you so much!

Devika - 3/3/2006 6:34:02 AM
My Email: Rehana_Roberts@yahoo.com

Comments:
Thank you so much for creating this website.If it wasn't for the information I got here along with statistics I would have never learn about other AED.In St.Kitts there are no nuerologists nor eeg mri etc. I found out about vigabatrin on this website and I really think it is helping Rehana.She is still having seizures somedays but I think after weaning other AED she will be okay.My daughter would have stayed on clonazepam and sodium valproate the rest of her life.That is what happened to children here with similar symptoms.So thanks once again for this wonderful site.

Val C. - 2/19/2006 9:24:19 PM
My Email: duckycc@webtv.net

Comments:
Hello- I just wanted to say that this site makes me feel as if we are not alone! I have been unable, until now, to find a site that is about children w/seizures and the family dynamics. Our son is 2.5 yrs- and was dx in early December w/epilepsy. It has been difficult on my husband and I, especially since his twin sister was stillborn. We are VERY over-protective of him. I am so happy to find this site with others in the same situation, unfortuately though. I would love to be able to to hook uo with someone that is in kind of the same situation. I believe he has been having seizures since he was a month old, but it is just now being addressed. He was on Keppra- but he became a very moody, mad, upset child. He is now on Lamictal, 10 mgs 2x a day. He has been seizure free for aprox 3 weeks now. But, we are always thinking, is he going to have another when we are in the middle of the Mall, or when we leave hin with the babysitter? If anyone would like to hook up via e-mail as a type of support, please send me an e-mail. Thanks- Val

T. Falvey - 2/18/2006 1:52:58 PM
My Email: idahocountry@hotmail.com

Comments:
My son was just diagnosed with congenital CMV. He contracted it in my 6th or 7th month of pregnancy. He has severe brain calcifications and brain atrophy. He just had his first seizure a couple weeks ago thats how we found out about his condition. We are still in shock since our little baby boy seems soo healthy. The prognosis is not good and this site really helped me to understand seizures and to count my blessings. It could be much worse. I just wish that there was more info out there about CMV. Its still somewhat a mystery to me.

Nancy Swager - 2/15/2006 8:48:53 AM
My Email: nancy.swager@cingular.com

Comments:
I just found out about the Katie Beckett program. I am so relieved that my son and daughter-in-law will get the help they need for their son. My grandson, Dakota, is 11 months old. His seizures began at 4 months. He has been in the hospital numerous times, and the cause is still unknown. It has been suggested that a fever could possibly trigger them. Some of his earlier seizures would last 30 to 60+ minutes. His medications have been adjusted and he has not been to the emergency room in a couple of months now.

Bernard - 1/29/2006 8:59:17 AM
My URL: http://www.coping-with-epilepsy.com/forum/

Comments:
What a great collection of personal stories. My wife was diagnosed with epilepsy as a child. There is a history of it in her family. I'm hoping that our two boys will be seizure free (so far, so good), but if they do end up being diagnosed with epilepsy, I'll add their story to the site.

Adderall - 12/8/2005 8:07:37 AM
My Email: Adderall@yahoo.com

Comments:
Found your site in google, and it has a lot of usefull information. Thanx.

Laura - 11/28/2005 2:57:59 PM
My Email: LKinmont@mywebnet.com

Comments:
Thank you for such a great site. It is so helpful to know that we are not alone! My 5 year old son, Matthew has been diagnosied with LGS just two months ago, in Sept.2005. It has been a rocky 6 months, but what else can a parent do but go on? I hope that we can help one another get through tough times. Thank you!

robyn chaney - 11/9/2005 4:52:01 PM
My Email: whisperinu@msn.com

Comments:
my daughter hanna has tonic seizures. she is two years old and is on Topamax. since she started this medication two weeks ago she hasn't had any more seizures, i am glad i found this site i have learned alot from it and other peoples stories.

Nakyla Lando - 11/8/2005 2:02:07 PM
My Email: dannyboy4ea@aol.com.

Comments:
My daughhter Nakyla had lead poising back in 2002 till 2003.She is currently on Diastat5mg for seizure lasting more than 3-4min./Phenabarbitol 2x a day. Nakyla is doing a little better now.She is 3 years old.

Keri Kennedy - 10/18/2005 4:26:22 PM
My Email: kerivkennedy@nc.rr.com

Comments:
This site was referred to me by another mother, and i must say I can not be more grateful! This site is exactly what my husband and I were looking for. Real information from real parents on what the seizures are like and what medications work and what don't and why. My 4 month old daughter has been diagnosed with partial seizures and is currently on Tegretol. Her doctor wants her to partipate in a clinical trial for Keppra. My husband and I were looking for life examples of how other kids have reacted to it, not what a textbook says should happen. After all as parents we know that our kids "haven't read the manual" and never behave as expected.

LisaGann - 10/8/2005 8:22:55 AM
My Email: lisagann@bellsouth.net

Comments:
I tried to update Gardner's story but it keeps saying an error has occurred..so I'll update here for now. Gardner went to the doctor Wednesday, they took blood to test kidney function and depakote levels. His depakote levels were to low, that's why he's been having these smaller seizures. so they upped his depakote, he now takes 2 in A.M. and still 2 at P.M. So far we haven't had anymore seizures since Sept. 20, 2005 Praise the good Lord! I pray for each one of you who is going through this with your children, I know as a parent it can be tough. My strength comes from Jesus Christ! My prayer to each of you is that his strength, peace, love and joy surround you always in Jesus name. God bless!!!

Lisa - 10/2/2005 9:16:15 PM
My Email: lisagann@bellsouth.net

Comments:
Hey guys, Gardner goes to the Doctor Wednesday for his check-up and check liver. He currently just goes to family doctor..I think I'm gonna ask him to send Gardner to a specialist, to treat his epilepsy. He has had 2 seizures in the last 3 weeks. They were not big ones, but still I think it would give me more peace of mind. Gardner did a drawing for the expressions of Hope contest. I'll share more about it later. Please pray I make the right decisions concerning my son and his epilepsy. God Bless each of you. I personally Thank each of you for posting your stories. It has truly helped me. I pray for each one of you who is going through this journey with your children, may God strengthen each one and help you to make the right decisions also. May God's peace surround each one of you in Jesus name I pray!!!! Lisa

lisa - 9/30/2005 1:35:59 PM
My Email: lmcblake@yahoo.co.uk

Comments:
A message for Kay and Jade from Port Orange, USA: Hi, my names lisa and I've just read your heartbreaking story and am lost for words. I can only imagine what pain you go through every time Jade has another seizure and pray to God that you find some answers soon. I hope maybe our story may give you some hope. my little boy (Daniel) started with IS when he was 5 months old but thank God after trying a few different meds (Vigabatrin, ACTH, sodium valporate)we managed to control the seizures and have done since 3/2/05, (after 2 months). We also found out after an MRI scan that he appeared to have had a neo natal stroke when he was born which explains his weak right side. So with the development delay from the seizures and his physical disabilities he is a little behind others but considering what he has been through in his short life he is a little miracle. You must be so confussed, lonely, sad, and wonder 'why?' but just look at your beautiful little girl and know she is going to get better, she sounds like such a little fighter that I really believe that. God bless and if you need anything please get in touch, Love lisa and daniel, UK

Jesica Eluskie - 9/22/2005 6:49:54 PM
My Email: jessicaeluskie@hotmail.com

Comments:
My stepson Justin who is 15 has generalized epilepsy and was diagnosed at 6 months old. He has been on all the med's out there and nothing really seems to help. We have recently met with a neurosurgeon about the vagus nerve stimulator but, very scared of that procedure. It is so nice to read these stories knowing that we are not alone. Justin is home with me full time and I am home schooling him in between doctor visits. Behavior has always been an issue with him and so has eating. I want to thank everyone who shared their story and will soon share ours. Jessica Eluskie

Vu Thi Hai Nhu - 9/12/2005 8:44:34 AM
My Email: nhu.vt@pg.com

Comments:
Dear Rob, Thank you very much to create the very useful website for us. I read hundreds webpage about epilepsy, and very glad to find this web, this is the most useful web I read on epilepsy because it talk about many real cases & specially for children, the format of the story is easy to read & learn about the case. From this we can understand more the medications, side affect, new treatment technique, Learn more about how to invole in the treatment and how to take care the baby with epilepsy. Thank you very much again Nhu

Lisa - 8/31/2005 8:57:31 AM
My Email: crazy4god316@yahoo.com

Comments:
I want each of you to know you are in my prayers. Thanks for this site I know it has helped many. I have learned much since Gardner had his seizure much I didn't know. I know several people who suffer from this disease. I just wanted to let you all know I'm praying and lifting each of you and your families up to God in heaven in Jesus name. God Bless you all!!! Peace to each of you!!!

Beth Myers - 8/26/2005 1:14:05 PM
My Email: bones67779@aol.com

Comments:
My son Willima was diagnosed with IS on June 8th, 2005. He was strated on zonegran but we quickly travelled to Canada to get vigabatrin (as suggested by our neurologist). He is now seizure free (08/26/05) and it took 4 weeks at optimal dose on vigab to accomplish this. He is at 1000mg 2x a day (additionally 200mg B6 2x) and he weighs 22lbs. (I can't convert into kilos!) I am hoping to add to the William's story to the web page. Thanks!

Lisa - 8/26/2005 7:21:24 AM
My Email: lisagann@bellsouth.net

Comments:
My son had his first and only seizure to date in May,2005. Praise God he hasn't had another. I took him to the ER. They said it was probably dyhydration but to follow up with his regular doctor before the week was out. His doctor ordered a EEG which showed abnormalties on oneside. He was diagnosed with Partial seizure disorder and put on Depekote. And a Cat scan with contrast was ordered. It was normal. His seizure started out as a simple and turned into a complex. He said he just felt strange at first(he is 10) And then his chest was tight and he tried to call to a friend for help but all he could do was make gutteral noises. It started on one side he fell to the ground and it moved into the other side also, he was jerking, legs arms and head. He could not see but he never lost consciencness and his hearing was inhanced he could hear his friends footsteps in the grass as he went for help. It was pretty scary for him and his friends..time they got to my house they were all crying and really upsset his friends told me they thought he was dying on them. I told Gardner(my son) no matter what happens remember what you go through your never alone God is right there with you. As a Mom this has been tough cause he's had to go through things and I could not be right with him such as test.... But I know Jesus walks with my son and that gives me great comfort.

Michael Stevens - 8/2/2005 8:15:59 AM
My Email: stevensm@cput.ac.za

Comments:
Hi everyone... I have a 3 1/2 yr old boy who had fever convulsion due to constamt year infections (he had about 10 consvulsions). After an operation to put grommets in his years, he was fine untill he got his 1st convulsion without a temperature. (he had 4 or 5 to date) He is on Epilum (4ml x2 daily) The say that the fever convulsions could have caused the epilepsy. Do you have the same problem? Contact me please. My prayers are with you all.

Rayleen - 7/16/2005 5:39:53 AM
My Email: dudee28@yahoo.com

Comments:
I have a nine month old daughter, Kaya, who at birth was oxygen deprived and having seizures. For a month she was on phenobarb and medazolan. Her diagnosis of cerebal palsy was a devastating blow, but 10 weeks ago epilepsy was diagnosed to. She was started on vigabatrin and the seizures stopped within 4 days. This was an answer to prayers. But after six weeks of no seizures Kaya became ill (cold and ear infection) and the seizures started to come through again, and have continued to get more and more. They are slightly different, in that they look like startles (previous seizures looked like curling or going in to the foetal position). So now we are looking at starting Kaya on ACTH, which I am finding quite daunting. Steroids, the word just throws out so many negative thoughts. Still reading some of the stories on this site has given me a boost of hope and a sense of "I'm not alone". Thank you for that

DAVID - 6/26/2005 3:42:03 PM
My Email: davidswift67@blueyonder.co.uk

Comments:
MY DAUGHTER MELISSA IS NOW 15 MONTHS OLD, SHE HAS HAD SEIZURES FROM 5 WEEKS OLD AND CONTINUES TO HAVE THEM EVERY 14 TO 21 DAYS, THEY CAN BE SIMPLE PARTIAL OR TONIC CLONIC,WE STILL DONT KNOW THE UNDERLYING CAUSE BUT REMAIN POSITIVE WHILE SHE MAKES SLOW PROGRESS IN HER DEVELOPMENT, YOU HAVE TO BE STRONG AND TRY TO LIVE YOUR LIVES AS NORMAL AS POSIBLE AND NEVER BE AFRAID TO ASK FOR HELP.

lisa - 6/14/2005 5:33:19 AM
My Email: lmcblake@yahoo.co.uk

Comments:
Hi everyone, I know how hard this time is for you all and your families and hope maybe our story may offer some comfort. My baby,Daniel (dx infantile spasms-5 months)has been seizure free for 4 months now and as you can imagine this feels like a miracle to us. Hope and pray he carries on doing well and that your little ones do too. Lisa x

kathy stohs - 6/7/2005 4:36:09 PM
My Email: kat121064@yahoo.com

Comments:
Just looking for information my 8 year old was diagnosed with epilepsy today

melinda - 5/30/2005 7:04:08 PM
My Email: childers1970@hotmail.com

Comments:
My Daughter Brittany Was Diagnosted With epilepsy/partial seizures. She has been to the emergency room/DRS. She has went thru many tests and some progress comes then when we think things get better she starts having seizures again and more often. She is currently taking KEPPERA,and 2 times a day. Her grades are suffering except with special ed. gives her extra chances to get answers right with help even on tests at school. Sincerely Worried Mother. HELP!

Diane Logan - 4/29/2005 12:21:43 AM
My Email: diane_lgn@yahoo.com

Comments:
My son,Terry Logan has been diagnosed with Post-Traumatic Non-Convulsive Seizures. He is now being treated and has to begin undergoing mutiple tests. He is taking Tegretol. My son is only 3yrs. old. I am a frightened and concerned single parent of two. If there is anything I need to know about this medication and/or his cndition please e-mail me. Thank you, Diane Logan

paula potratz - 4/21/2005 4:54:38 PM
My Email: ashara98@aol.com

Comments:
just found this site. it is unbelievable.keep up on what you are doing. it is much appreciated.

Rita - 4/13/2005 8:55:59 PM
My Email: rittiesue@yahoo.com

Comments:
My neice which is 15 has had 2 episodes that has not been diagnosed but I feel may be epilepsy. She starts feeling weak, her left arm goes numb then progressing up her neck to her face. She drools at times when this is happening along with her tongue feeling thick. She also develops tunnel vision and can't hear. After these episodes, she is very weak and has a severe headache. All tests that have been run, have come back normal. Does this sound like epilepsy?

ASaba Owerri - 3/16/2005 5:43:13 AM
My Email: homeboy@yahoo.com

Comments:
I love this page IT LOOKS REALLY NICE VERY MUCH INTERESTING. KEEP UP THE WONDERFUL GOOD WORK

Mark Davis - 3/8/2005 10:58:16 AM
My URL: http://www.abcmedicalservices.co.uk
My Email: info@abcmedicalservices.co.uk

Comments:
A very interesting and informative website. Well done!

lisa - 2/21/2005 1:46:33 PM
My Email: lmcblake@yahoo.co.uk

Comments:
Hi everyone, just another short update for anyone interested or new to this! Our little boy Daniel(read his story under infantile spasms) has been seizure free for nearly 3 weeks... We can hardly believe it he is such a miracle. Laughing/smiling/shouting all the time. He is now making eye contact, fixing and following and enjoying life. When dan was first diagnosed with West syndrome (IS) we were so shocked and devastated that we could not see a light at the end of the dark tunnel but now we have been lucky enough to see a ray of light and realise how lucky we are. Even through the regular nightly wakings, ear infections and teething(he got his first tooth last week) I still feel so blessed and lucky to have daniel and hope and pray that he continues to progress well. I also hope that by writing this i may give some comfort to other families who's little one's have recently been diagnosed with epilepsy. It seems so unfair that our little angels have to go through this and my heart goes out to anyone who is suffering with their babies. When Daniel was diagnosed with infantile spasms the prognosis was not good and even now the doctors are very caustious about the future, but i feel positive and i think that can help a great deal. If i can help anyone in any way please contact me lisa x

Marg Strehlrer - 2/20/2005 4:33:54 AM
My Email: margie1692@yahoo.com.au

Comments:
My daughter Shaniya was diagnosed with absent seizures in November 2004 she had just turned four DOB 7/11/2000.Luckily she has only had the one fit and is now on Epilium 5mls twice a day. I worry alot about her, so it is great to be able to correspond with other parents or children..

Carol B ( London) - 2/7/2005 7:15:31 AM
My Email: carol@bassimac.freeserve.co.uk

Comments:
Greetings from London. UPDATE JANUARY 2005 My son is 17 now and still on Carbamarzepine tablets. He has been 'seizure free' for 2 Years exaclty since he started on CARBAMAZEPINE. He is still under the hospital and is doing fine. This website is one of the best I've seen on 'Epilepsy in children'. For those of you whose children are experiencing side effects of their drugs - remember this - in many cases - Side effects of the drugs often settle down . . . Please perservere if you can . . . This website is so wondeful - I like the idea that you can search according to a childs age, location and even medication they're on. It was /is consoling to know that others are experiencing the same worries as I was when my son aged 15 was diagnosed with Grand Mal Epilepsy in December 2002.He had had 4 seizures in 19 days . . . . The doctors thought this excessive and really we had no option but to agree to him taking Anti -convulsant tablets. How upset we all felt an otherwise healthy 15 year old on regular medication ? ? He was started on medication in January 2003(Carbemazepine currently 200mg in morning and 400mg at night). The side effects of the drug concerned me at the beginning - sleepiness, short term memory loss, moodiness ( tho wasn't sure if this was just being a teenager ! ). I found out that often in the beginning of children taking their medication - it can take a while for the drug to settle. After some weeks on it, it didnt seem right that he was still having muscle twitching, unsteadiness, light headedness etc so the Hospital Consultant thought perhaps the medication was too strong. His tablet was reduced from two in the morning and two at night to only one in the morning and two at night. This was the best thing that could have happened. The side effects decreased ( he is just a little sleepy at times) and he has had no further seizures. I am so glad we perservered through it all . . .and hope your readers can do the same. Its not always wise to change medication if reducing the amount slightly reduces the side effects . . .though I do understand this does not work for everyone. Regards to all that are coming to terms with their childs epilepsy diagnosis . . . UPDATE February 2004. My son is now aged 16 years. he has been seizure-free since he started on medication. He takes it regulary (still CARBAMAZEPINE morning and night) . . . . and most side effects are gone. Carol B

Amanda Perry - 2/6/2005 6:11:30 PM
My Email: sassygrl2026@yahoo.com

Comments:
I would just like to say thank you to all of the parents out there who have shared their heart wrenching stories about their children to help the rest of us understand our own childrens' epilepsy better. I hope that some day soon I will have enough courage to write about my son's epilepsy without sobbing, so that I may be able to help others too. Your stories have touched my heart and made me realize that my family isn't the only family going through this. THANK YOU!!!!! Maybe someday soon there will be an easier, more effective way to treat these disorders. The "hit and miss" tecnique for finding the right medicine is killing us. We just want the seizures to stop. Is that really too much to ask? Little children do not deserve to go through any of this. All we can do is to continue with high hopes, and prayers.

lisa - 2/6/2005 1:32:01 PM
My Email: lmcblake@yahoo.co.uk

Comments:
Just an update on Daniels' progress. After being diagnosed with west syndrome on 17/12/04 we have lived with infantile spasms for the past 6 or so weeks. Trying different medications and living with the nasty side effects have been really difficult, not to mention those eeg's with the horrible contraption they wire them up with (wouldn't you think something a bit more child and parent friendly would have been invented by now?) At the moment Daniel is being weened of Vigabatrin which did nothing for his seizures (this was disappointing because i really thought this was going to help him). He is now taking Epilum and ACTH injections as well as pyridoxine. The side effects of the ACTH (a steroid) are awful, Daniel is really irritable and hard to consol and not sleeping at all. However one good thing to happen (and we're trying not to get to excited) is that Daniel has not had a seizure for the past 68 hours!!! It's so difficult to see your darling little babies going through such an awful time and you would do anything to stop the seizures (usualy between 4-8 per day lasting 5 mins). And now they seem to have stopped I hardly want to believe it just in case they start again. has anyone else experienced this feeling? I was talking to another mother of an 18 month old boy whose seizures stopped on his 1st birthday and she told me that his seizures stopped for 8 weeks and then came back and they were gutted). It's so difficult because there seems to be so little to be happy about at the moment but i really hope this is a good sign... Hope this might give a little bit of comfort to any parents who may be new to this, in particular those who have west syndrome. I can remember those first few weeks all to clearly, when everything seemed so bleak and all the doctors we came in contact with seemed to look at us with pity (I thought 'what do they know that we don't'). But now a few weeks down the line and i can apprecite how lucky we are to have Daniel at all, he's such a gorgeous little angel and even though we might not get many smiles at the moment I know he can and will do it again, just as soon as he feel a bit better. I anyone would like to contact me I would be happy to chat. lisa (uk)

steve - 2/3/2005 10:26:29 AM
My Email: steven-fred@uiowa.edu

Comments:
I just want to warn all the parents out there of what they are facing and what there children are going thru. Im 23 and still have seizures, even though I had a surgery done. Jr high and Hs school was very hard for me with them. I know all people have seizures differently but they all affect our lives the same way. We feel like we lost control of our life. Parents, you have to show how much responibility the children still have, and how much decisions can effect them( surgeries, medications, other). More power they have the more positive they are.

stephanie - 1/28/2005 5:48:13 PM
My Email: teacherathome78@msn.com

Comments:
I am a mother to an 8 year old boy who seems to have many difficulties. He was born with a hole in his heart, asthma, exzema and shortly before he turned 2 was diagnosed with Autism. Last year at the age of 7, our long lost tests came back from genetics and he has Cowden's Disease. To top all this off, in December he passed out at school and we took him to the hospital. After an EEg they have informed us that he has benign rolandic epilepsy. Does anyone have any advice to give to me about the epilepsy??? After all my previous research, I am growing weary. Thanks for listening. Stephanie Mom to Connor

Mary G. - 1/26/2005 9:11:18 AM
My Email: mgill7144@comcast.net

Comments:
Hi. I am in desperate need of information. My son is nine..complicated history. But, the last 6 months for sure he has been experiencing "seizures". MRI did not detect anything. A 45 minute EEG dectected squat.He just had a 24 hr EEG done. I am disappointed. I was supposed to log everything down. I was the one doing a lot of the foot work at the hospital, like adjusting the vidoe camera...that was "my job". But, I did not know I was supposed to write all odd behavoir down..until it was basicaly too late. So, they say he is not having any seizures. I noticed on the vidoe screen that there were seizure events that were being picked up. What are those. I can not find any info on that. The neurologist and his collegues that I have met are a joke. My son has been diagnosed with adhd, ocd,a mood disorder and a learning disability. There is much more to this...can not write it all. But, I really need help...need to know what seizure episodes are. Help Please, Mary G.

tammy - 1/22/2005 11:12:37 PM
My Email: angel_wolf_76@yahoo.copm

Comments:
I have a friend of mine she has a one month old daughter. She was 6wks early at dilivery. Now she has been having seizurs and one of tham her daughter went compleatly stiff if any body has any information i can give her please e-mail me. Thank you Tammy

georgina - 1/22/2005 4:20:25 AM
My Email: johnyb@kooee.com.au

Comments:
thank you so very much for your site. It has provided me with much useful information about other families whose children have Infantile Spasms. Our son was diagnosed with IS when he was 5 1/2 months old in April 2004. He has had setbacks, but continues to go forward, we are currently weaning him off his medication, so far so good. He has learned to walk, picks objets up, tries to feed himself, joins in with his brother and sister for playtime, its just so beautiful to see. I pray by his bed every night and thank god for his existance, despite his IS he is a delighful little man. Thanks again and to all with epilepsy affecting our lives, be stong, and god bess our beautiful childern.

Linda - 1/19/2005 11:34:22 AM
My Email: llamalady@leaco.net

Comments:
My 3 year old grandson has just been diagnosed with epilepsy, his Mom and I are very upset about this and want as much info as possible and a support group........thank you very much. what did we do without computers???????? lol

Martha - 1/12/2005 11:14:27 AM
My Email: condemarta@latinmail.com

Comments:
Hello, I just wanted to say you have a very informative site which really made me think, Thanks !

Cathy - 1/9/2005 11:48:45 PM
My Email: cathyscissors@hotmail.com

Comments:
My daughter Sydney, just turned 10. She has had seizures since birth. She suffered blood loss during labor which resulted in brain damage. Sydney has been on Phenobarbital for 10 years. The medication controls her seizures, but every 2 years her doctor wants to take her off. And every two years she has a seizure or seizures which last up to two hours and results in a three day hospital stay. And we end up putting her back on medication. She had problems with her fine and gross motor skills, attentiveness, tracking, behavior, emotions, and many other side effects to numerous to list. Her doctor saids that the effects are caused my her brain damage not her medication. I don't know how she acts without the Phenobarbital, because she has never been off it long enough. But I think alot of her problems is the medication. But what do you do? The meds work. What is the lesser of two evils. PLEASE COMMENT

Tiffany - 1/8/2005 6:46:57 PM

Comments:
My son was diagnoised with Infantile spasms back in july 2004. He was treated with ACTH and his spasms stopped and his EEG was normal the doctors said that he should start to develope but he never did he started to have spasms again on christmas day 2004 we saw doctors on january 4th 2005 he had another EEG on january 7th 2005 the doctors called and said that the spasms were back and he has to be put back on ACTH next week. He is 10mo. old and is like a newborn. We are heart broken because he is our first child and the doctors said after the spasms stopped the first time he would develope and catch I was worried that he never did but the doctors just wouldn't listen. thank you for listing to me it is good to get my sons storie out there My sons name is Monty and he was born march 19 2004 he was developing normaly till he was 3mo old then we noticed a spasm but the doctors didn't listen to me when I called they thought I was a nervous mother till he did the spasms right in front of the doctor non stop

annalivia van lammeren - 1/7/2005 6:13:57 AM
My Email: annalivia@big pond .com

Comments:
Hi I was directed to this site by Angel Mae Sapia's mum who I was chatting with on another site. Although my son doesn't suffer from Epilepsy he is how ever Autistic By talking with Angel's mum I came to realize just how special our children are and how strong I have become and that I give thanks everyday for him. My prayers are with all the special parents and children. Great site.

Fred - 1/4/2005 9:42:03 PM
My URL: http://www.smartresolution.com

Comments:
My brother is epileptic and it is a horrible disease. I just hope that more studies will be made to help them. Can't wait to see him get better and get back with his life.

Carol Bassi - 12/31/2004 6:32:17 PM
My Email: carol@bassimac.freeserve.co.uk

Comments:
Hi I wanted to send my support in a form of an email to Lisa from Cheshire, UK who has added a comment in the previous guest book enty to this one. Lisa your email address is incorrect. Can you contact me so I can email you? My email address in here. Thanks Carol

Lisa (Cheshire, England) - 12/28/2004 2:25:03 PM
My Email: lblake01@hotmail.com

Comments:
Our 5 month old son has been having infantile spasms since 11/12/04. We have been told he has 'West Syndrome' but do not know if there is a cause for this yet. He has been taking Prednisolon since 17/12/04 and has has one eeg at alder hey with another one booked for 4/12/05. We have cried and cried and searched for answers but feel so helpless. All we want to do is make this terrible thing go away. our baby Daniel is so gorgeous and it is heartbreaking to see him going through this. If there is anyone with similar stories i would really appreciate your comments or advice. Are there happy endings? Is surgery the answer? We would do anything to get our happy little baby back.

Tara - 12/17/2004 12:23:06 PM
My Email: p_tshelburne@sbcglobal.net

Comments:
Our now two year old son was diagnosed with multi siezures in Sept. 2004 c/o sleep deprived EEG and ever since he has been on Tegrotal 5cc/100mg 3xdaily. This is what our last doctor put him on and since seeing her we've moved over 400 miles and has to change doctors. Last month around Thanksgiving he had another sleep deprived EEG since the Tegrotal wasn't controlling the focal or tonic seizures. His doctor put him on Kappra that we started Thanksgiving Day a week later he began to get mean and the next week when we went up on the dose for the 2nd time, he was playing with his 8month old brother and then suddenly he begin beating his head into the ground!! This finally got the doctor to change the medicine once again. He his now taking Tegrotal 5cc/100mg 3xdaily along with Zonagran 25mg pills 2xdaily. I was wondering if I should be worried that his doctor is over medicating him. If so what should I do? Please help, he is no longer the same kid!!!

Anne - 12/13/2004 3:26:19 AM

Comments:
I had my first seizure in 2000. I was 11. It was during the summer holidays. I am now 15 and I have had 10 seizure.

joe - 11/7/2004 8:47:18 AM
My Email: spammy_joe2@gmx.net

Comments:
nice page

Melinda - 10/23/2004 7:55:03 AM
My Email: matbanditsmom37@aol.com

Comments:
My son Derek is now 13, he had his 1st seizure (that we know about), in 2002. We were on vacation in Chicago. Since it was his first and he was taking cold medication, we left the hospital with no answers. He had his 2nd seizure this last August 2004(both while he was sleeping). Again we left the ER with no answers. It took almost 2 months to get an MRI and sleep deprived EEG. Everything was normal. While having family pictures taken last Sunday (10/17/2004) he fell to the ground and had the worst seizure we have ever seen. The ER put him on Dilantin but his DR has since changed the meds and dosage. We now walk on egg shells every minute waiting for the next one. No need to say that Derek is upset because we wont let him alone for a minute. We need to find out why this happens and to find a solution.

SHANNON OLSON - 10/7/2004 8:27:15 AM
My Email: shannonolson914@yahoo.com

Comments:
My son is 13 month old. 4 weeks ago he woke up from his nap having seizures on his left side. The diagnosis was Encephelitis. He was in the PICU for 3 weeks and they had a hard time controlling the seizures in his left hand. He is now on Phenobarb and Topamax. He has not had any seizure activity for a week so hopefully this med will work. It is very hard to stop the seizures, he will have to go back to the hospital if they start again as Phosphenetoyne is the only thing that will stop the hand seizure. He is still unable to move his left side, he starts PT and OT this week. He seems so irritable and will not sleep at night. Is this from the meds?? Will it get better once his body gets adjusted to teh meds? Is there anyone else out there who has had the same illness?? please email me at shannonolson914@yahoo.com

Kathy - 9/26/2004 9:47:11 AM
My Email: queen123@comcast.net

Comments:
My son Benjamin turned five in June. He started havings seizures at the age of 10 months. He is a regular customer at Childrens Hospital Boston. He is going in this week for long term monitoring because they have tried just about every seizure medication in the past five years and nothing keeps them under control. So now they are going to see if is a candidate for either the vagus nerve stimulator or possible brain surgery. Benjamin doesn't normally break through his meds unless he starts to run a temp of 99. Once he breaks through he will cluster. I have to call Childrens and they will have me give him his rectal diastat once he breaks through that we have to call an ambulance. He just was in Childrens last month it took about 2 and half week s to get the seizures back under control. He has been on Tegtatol, Topamax, Trileptal. Depakote, Dilantin, Clonopin, Adavan and Phenobarbital. He currently is on Pheno, Topamax and Lamectal. I remember when he first started having seizures at 10 months old and his first trip to Childrens. When we got out I had brought him to his pediatrician and he said that most children only require to be one medication to control the seizures. I asked him what about just removing the part of the brain that the seizures are coming from he said that's last resort. They only consider that if there backs are up against the wall. Well here we are 5 years later and our backs are up against the wall. He cannot take Dilantin, Clonopin or Adavan because it causes him to have more seizures and he hallucinates. Tonight and tommorrow morning I have to cut his doses more than half just so he will have seizures for all the tests they have to do this week. Well when we get home next week I will let everyone know how we made out. Kathy

Carol B ( London) - 9/25/2004 5:48:20 PM
My Email: carol@bassimac.freeserve.co.uk

Comments:
Greetings from London. This website is one of the best I've seen on 'Epilepsy in children'. For those of you whose children are experiencing side effects of their drugs rememebr this in many cases - Side effects of the drugs often settle down . . .Please perservere if you can . . . This website is so wondeful - I like the idea that you can search according to a childs age, location and even medication they're on. It was /is consoling to know that others are experiencing the same worries as I was when my son aged 15 was diagnosed with Grand Mal Epilepsy in December 2002.He had had 4 seizures in 19 days . . . . The doctors thought this excessive and really we had no option but to agree to him taking Anti -convulsant tablets. How upset we all felt an otherwise healthy 15 year old on regular medication ? ? He was started on medication in January 2003(Carbemazepine currently 200mg in morning and 400mg at night). The side effects of the drug concerned me at the beginning - sleepiness, short term memory loss, moodiness ( tho wasn't sure if this was just being a teenager ! ). I found out that often in the beginning of children taking their medication - it can take a while for the drug to settle. After some weeks on it, it didnt seem right that he was still having muscle twitching, unsteadiness, light headedness etc so the Hospital Consultant thought perhaps the medication was too strong. His tablet was reduced from two in the morning and two at night to only one in the morning and two at night. This was the best thing that could have happened. The side effects decreased ( he is just a little sleepy at times) and he has had no further seizures. I am so glad we perservered through it all . . .and hope your readers can do the same. Its not always wise to change medication if reducing the amount slightly reduces the side effects . . .though I do understand this does not work for everyone. Regards to all that are coming to terms with their childs epilepsy diagnosis . . . UPDATE February 2004. My son is now aged 16 years. he has been seizure-free since he started on medication. He takes it regulary (still CARBAMAZEPINE morning and night) . . . . and most side effects are gone. UPDATE September 2004 My son is almost 17 now and still on Carbamarzepine tablets. He has been 'seizure free' for 20 months now. He is still under the hospital and is doing fine.Carol B

shelley bishop - 9/10/2004 6:26:36 PM
My Email: sabrjb@hotmail.com

Comments:
Hi my name is shelley bishop, my son ryan is 5yrs of age. Ryan first suffered grand mal siezures when he was 2yrs old he had 3 within 5hrs of each one. We went into hospital but ryan was given no medication, the following day he became very ill with dirrohea and vomiting. Three months went by and know siezures until one week he had two. This time the doctors put him on Epilim at 2mls twice daily, ryan went onto be siezure free for alomost two years with slow increases up to 4mls of Epilim. WE took him of his medication after 22 months of no siezures and then just 7 weeks after he suffered again 3 grand mals in a mater of a week. He is now currently on 5mls Epilim twice daily and has been siezure free since the 13th February 2004, have seen the paediatrician and he is going to do a ECG or is it EEG? on ryan next year to see if that can tell us anything. So all in all we are very lucky compared to most however it is still there.

Emma Giles - 8/29/2004 2:58:19 PM
My Email: emma_giles@hotmail.com

Comments:
I an currently in my final year of teacher training and have to write an 8000 word dissertation. I would like to focus on epilepsy in the under 5's amd hoped this site would be useful in helping me with my research. I may need to contact parents whose children have epilepsy as part of my research. Is this possible and can you help me identify a key question for me to research. Thank you Emma Giles.

Iren - 8/29/2004 2:40:53 PM
My Email: bjoernra@online.no

Comments:
Hello! It is now nearly a year since I wrote in your guestbook. Kim have had a unbelievable progress. He took Orfiril Long 150 mg. But in may 04 it wss impossible to make him take his medisine. So we keept trying. We changed medicine to Lamictal. He is now acting nearly as a normal boy. He is a year behind other kids his age. He is doing very well. I have also got a new e-mail adress since last time. I love to hear from anyone of you. Iren.

Jazmine - 8/12/2004 1:32:43 PM
My Email: mozki@tamoslala.com

Comments:
Loved your site

jordi - 8/7/2004 2:50:12 PM
My Email: jordijorba@dpaiberica.com

Comments:
cool site

sneha - 8/4/2004 9:53:44 PM
My Email: sneharambekar@redifmail.com

Comments:
i want to know if it is fully curable or not.My son,11 years is facing it once in a month

Lisa Wells, RN - 7/18/2004 4:56:00 PM
My URL: http://www.hgh-pro.com

Comments:
You have a very nice site. I am a registered nurse who has worked with children and infants in the NICU and PICU for many years and the work was always very rewarding for me. I sustained a back injury in 1997 so I can no longer do the same physical work and I miss it. I loved taking care of the kids and getting to know them. I consider each and every one very special.

Julie - 7/17/2004 12:29:05 PM
My Email: jbirr@nephinc.com

Comments:
Just added a new story. Her seizures have changed this Spring and I am so nervous and upset by the unknown factors of it all. This week's 3 day EEG was hard on both of us, as well as her older sister who had to stay with relatives. I did remind my self during the 3.5 days that many at this site know fully what it is like. Thanks for the connection!

Spice - 7/5/2004 11:08:30 AM
My Email: spice@shol.com

Comments:
My family went thru a very tramatic 2 years when my daughter at 4 months of age began having seizures. We went from DR. to DR. Nothing looked positive, tryed lots of medications. Sometimes they would appear to work for a bit, then back to the same old stuff. So many ups and downs as many of you are going thru now. Sierra had 3-7 seizures daily. She didn't use her hands until she was 14 months old. Not even to hold toys. She didn't crawl when babies usually crawl. I just remember searching the web for information and nothing looked hopeful. Seemed every story I read had a gloomy ending. I want to let u know that Sierra is no longer having seisures. She had Brain Surgery preformed at Childrens Hospital in Pittsburg Aug. 2, 2002. They removed 20% of her brain. Very tramatic experience! But She has had many therapists to help her recovery. She now appears to be a "normal" 3 year old. She can run and play with them all. There were times I thought she would never walk. I thought she would be in a wheelchair for life. I am writing this to let you know that I THINK alot of the stories on the internet are negative because once a child makes a full recovery, alot of people just want to try an go on with a normal life. They are so busy, and alot of the Stories with miraculous endings are never told. So don't give up hope, I think there are lots of stories like mine... They just aren't being written. Sierra is MY MIRACLE. They do happen.

Jodie - 6/3/2004 6:17:33 AM
My Email: juicyjods@yahoo.com

Comments:
it is good to be able to read stories of other people with children with epilepsy. when i get full details of my sons condition i will be adding his story to your site.

Micha� Lesniewski - 6/2/2004 3:33:07 PM
My URL: http://olalesniewska.w.interia.pl
My Email: m.l.fox@wp.pl

Comments:
Hello My name is Micha� ,my douther Ola has West Syndrom.She has 3 years old.We looking to friends.

Holly Shaw - 5/28/2004 9:08:13 PM
My Email: shaw.holly@comcast.net

Comments:
Daisy my little 3yr old just seems to get a little deeper into this world. But nothing like you all. Good Luck to us all and god bless.

Patrick - 5/24/2004 1:14:36 PM
My Email: patrick.halcomb@capgemini.com

Comments:
My daughter age 10 has just been diagnosed. Brain seizures causing headache and nausea. She is taking small amounts (12.5 mg) of Lamictal twice daily. Hoping to learn more about how to help keep her active life in motion.

Aba Guyman - 5/20/2004 10:36:47 AM
My Email: mumu19@aol.com

Comments:
Nice site, I lost my school father to epeiplepsy.

Jill Clowater - 5/4/2004 3:34:36 PM
My Email: a_clowater@hotmail.com

Comments:
This web page was very helpful.

Michele - 4/18/2004 5:36:28 PM
My Email: playfullbear@yahoo.com

Comments:
Wonderful site! I am a pediatric nurse, who became very involved with epilepsy when a very special boy was diagnosed with it. Danny Jr. lost his battle with epilepsy at the age of 3. He is missed a great deal!! He is educating many in our area through "Rocking 4 Epilepsy",which his parents started in his memory.

Rilla Beal - 4/14/2004 5:15:29 PM
My Email: rillabeal@earthlink.com

Comments:
I am doing reshearch on Epilepsy There is so much information but not very much help I will be praying for all that have epilepsy.

martin - 4/14/2004 8:43:24 AM
My URL: http://www.liebeliebe.at
My Email: martin32@gmx.net

Comments:
nice homepage!!! well done! martin! nice greetings from the other side of the atlantic ocean!

Lindsay Middleton - 4/10/2004 6:31:29 AM
My URL: http://www.freeserve.co.uk
My Email: Lindsaymid_01@yahoo.co.uk

Comments:
Hi Rob I am fine and so are my friends who's stories are on the website. I don't visit as often now because I have found a couple of exciting rollercoaster websites that I have a look at. I am now only visiting the site about once a month or once every two months. My visit to the website will now be on 15/5/04.

Sang Le - 3/26/2004 1:21:57 PM
My Email: tigonyeu@yahoo.com

Comments:
I love this website, It bring alot of information about the seizure.. I think the informations is really helpful for a lots of parents who have baby also that has the same type problems.

j - 3/11/2004 6:56:02 AM
My Email: jc4evr219@yahoo.com

Comments:
This is a great website that I will recommend to my cousin.

Carol B (London) - 2/18/2004 7:12:26 AM
My Email: carol@bassimac.freeserve.co.uk

Comments:
Side effects of drugs often settle down . . .Please perservere if you can . . . Greetings from London. This website is one of the best I've seen on 'Epilepsy in children'. I like the fact that you can search according to childs age, location and even medication they're on. It was /is consoling to know that others are experiencing the same worries as I was when my son aged 15 was diagnosed with Grand Mal Epilepsy in December 2002.He had had 4 seizures in 19 days . . . . The doctors thought this excessive and really we had no option but to agree to him taking Anti -convulsant tablets. How upset we all felt an otherwise healthy 15 year old on regular medication ? ? He was started on medication in January 2003(Carbemazepine currently 200mg in morning and 400mg at night). The side effects of the drug concerned me at the beginning - sleepiness, short term memory loss, moodiness ( tho wasn't sure if this was just being a teenager ! ). I found out that often in the beginning of children taking their medication - it can take a while for the drug to settle. After some weeks on it, it didnt seem right that he was still having muscle twitching, unsteadiness, light headedness etc so the Hospital Consultant thought perhaps the medication was too strong. His tablet was reduced from two in the morning and two at night to only one in the morning and two at night. This was the best thing that could have happened. The side effects decreased ( he is just a little sleepy at times) and he has had no further seizures. I am so glad we perservered through it all . . .and hope your readers can do the same. Its not always wise to change medication if reducing the amount slightly reduces the side effects . . .though I do understand this does not work for everyone. Regards to all that are coming to terms with their childs epilepsy diagnosis . . . UPDATE February 2004. My son is now aged 16 years. he has been seizure-free since he started on medication. He takes it regulary (still CARBAMAZEPINE morning and night) . . . . and most side effects are gone. Carol B

Taylor - 2/9/2004 5:33:10 PM
My Email: NYCHIC@SC.RR.COM

Comments:
Is anyones child on Lamictal? If so, is any child eperiencing extreme regression? My daughter Taylor is 6 years old and on Lamictal for almost a year now. She has went from great progress and so smart to a backwards leap back to 3 years old. Her doctor says her changes are not from the medicine. My instincts tell me different. I dont know what to do. My daughter is slipping away and it all began after starting the lamictal. Can anyone please share any information or experiences on the medication Lamictal? Thank You. Wanda

Bernadette - 1/15/2004 2:40:46 PM
My Email: buntymadhouse@fsmail.net

Comments:
I am a happily married mum of five kids ranging in ages of 8 up to 16, in 2002 my youngest child had his first seizure it took until summer 2003 to finally decide it was epilepsy he started medication in octtober 2003 following his first tonic colonic seizure, I had grown up with my elder sister suffering from severe epilepsy but nothing prepared me for the fear and guilt I felt over my sons epilepsy, your various web information has help me and my family a lot and thank you for all the hard work you put into your information.

Lindsay Middleton - 1/4/2004 12:45:59 PM
My URL: http://www.freeserve.co.uk
My Email: Lindsaymid_01@yahoo.co.uk

Comments:
I have added some more stories and now I visit the site everytime I am on the internet. The story about Kinsey Rob is very touching to me. My friend who's story is on the site had 2 tonic clonic fits last month and it was very worrying for me and his friends at college. If anybody wants to send me an e mail I would be very gratefull.

nancy cabrera - 1/2/2004 2:09:43 PM
My Email: jeannette814@aol.com

Comments:
I'm swo glad that kinsey is doing well her pictures are awesome i sure miss her alot hope to see you soon love you guys nancy

Iren - 12/21/2003 2:05:54 PM
My Email: bjoern.iren@c2i.net

Comments:
Hello! Thank you for a very informative web-site. My son have started treatment for epilepsy, two months ago, because his neurologist tought he may have epilepsy(Landau-Kleffner Syndrome)LKS. He is a lot better, (if you think small steps), so the Dr. confirmed epilepsy, but can not say LKS. I have read so much about this on the web that I am nearly 100% sure that it is LKS. He has nearly all the signs that is typical for LKS, exsept for pickyness about food, typical EEG-reading, and serius seizure. He may had them during sleep, because his sleep was very uncalm. And after 6 weeks on Orfiril long 150 mg. He sleeps very good most nights, and hisspeach is very much better. I hope there is somone with an LKS- child who want to write with me. Here in Norway there are very few cases whith LKS. I have not been able to come in contact with somone yet. My son is borne at 26.08.00. I hope I hear from you soon. Thank you.

elise strong - 12/8/2003 11:06:09 AM
My Email: elisestrong@yahoo.com

Comments:
My son had his first drop seizures at the age of 2. We began trileptal and his drop seizures ended, but he seemed tired and cranky and began having "head drops" (myoclonic) and absence seizures. He is currently on lamictal which isn't helping. Our Doc is suggesting depakote or zonegran. Does anyone have a strong opinion about these drugs? Does anyone have a child with a similar situation? thank you so much. elisestrong@yahoo.com

Carrie - 12/5/2003 2:40:23 PM
My Email: carriejachimczyk@hotmail.com

Comments:
My 2 year old son has Downs Syndrome. Last year he was also disgnosed with LGS Syndrome and put on 3 anticonvulsants (topamax, klonopin and zarontin - none of which completely stopped his seizures). We recently took Danny off all gluten products (wheat, barley, rye, etc.) and his seizures went away. Celiac disease is severely underdiagnosed in the US. It can cause neurological problems in children. Hopefully this info can be of some help.

wanda - 12/4/2003 8:36:28 PM
My Email: nychic@sc.rr.com

Comments:
My daughter is 6 and has epilepsy. She has had epilepsy for 5 years now and less than a year ago she was put on lomictol. I notice a change in behavior and in her personality. Does anyone show the same changes with their child on this medication? If so please e-mail me and share your story....Thanks

Francesca Bjurstrom - 12/1/2003 9:45:18 PM
My Email: fbjurstrom@att.net

Comments:
My friend sent me this website link. My son who was born this past July(2003) starting to have seizures. The cause is unknown. This website has been truly helpful to see that other parents and individuals are going through the same thing. Please keep sharing your stories and progress:)

Adrian Cavazos - 11/21/2003 6:02:52 AM

Comments:
What I meant was that I have a friend named Samantha. Her full name is Samantha Jo Alexander. She does not have Epilepsy. When I read the story about your Samantha,The one with Epilepsy, she is the second Samantha that I know and that I read about. I want to meet your Samantha. Your Samantha will always have a Special place in my Heart. I am really, really sorry your Samantha died, I am really sorry to hear and to read that. MAY SHE REST IN PEACE.

Adrian Cavazos - 11/20/2003 7:53:07 PM

Comments:
I have a kind friend named Samantha also. When I saw the story about Samantha, my heart went out to her. My friend's full name is Samantha Jo Alexander.When I looked up Samantha,I was really moved by Samantha's Epilepsy.

Renee - 11/20/2003 4:02:33 AM
My Email: zakiafahey@earthlink.net

Comments:
Hi, I have three beautiful children, two of whom have epilepsy, inherited from their Dad. We struggle with medications and school issues. My daughter (age 8) has also recently been diagnosed with sleep disorder. Thank you for your website!

Dawn - 11/17/2003 4:41:48 PM
My Email: dj.cameron@zoom.co.uk

Comments:
Hi our daughter Nicole is 5 with all seizure types, low muscle tone,Sensory Intergration Dsyfunction & severe learning problems. We would love to hear from anyone that has a child with these symptoms as we have no diagnosis yet. We think her MMR had something to do with it. Lennoux Gastaut syndrome and Polymorphous have been mentioned. Many thanks.

laura - 11/17/2003 12:22:56 PM
My Email: satans_second_child@hotmail.com

Comments:
hey my names laura i know how u feel for kids with epilepsy because i have had it for like my wholife which is 16 years............ anyway i really like this website and it helps people understand

Lindsay Middleton - 11/13/2003 6:48:53 AM
My URL: http://www.freeserve.co.uk
My Email: Lindsaymid_01@yahoo.co.uk

Comments:
I have put another child's story onto the website. I haven't been on the site for ages.

Barb - 11/10/2003 6:18:54 PM
My Email: morganbmm@aol.com

Comments:
My son,age 11 Just starting having seizures in July. It has been very hard for him to understand as well as myself and the family. We do not know what caused them to start and I think that is almost as bad as the seizure itself. Thank you for having this website. It helps knowing that you are not alone in this.

Rebekah - 10/30/2003 3:23:45 PM
My Email: ssconcierge@sundancesquare

Comments:
I am eighteen and have been diagnosed with Juvenile Myoclonic Epilepsy. It is also called JME. The types of sizures I have are absence and grand mal.I haven't had epilepsy for long. I was diagnosed the last week in may of this year. I was driving home from school and I don't know what happened next, but my car and our fence were wrecked. My parents took me to the doctor and I was told about my JME. I have had so far about three grand mal sizures and about six absence sizures. I am taking 1000mg of keppra a day.

Beverly Christian - 10/26/2003 1:58:52 PM
My Email: bchristian30@yahoo.com

Comments:
I have a step-daughter who has been diagnosed with partial seizure epilepsy. I would love to talk to others who have dealt with this and let me know what has worked best in this situation. We have a very hard time dealing with it due to the fact that she lives with her mother and all visits to the doctor are given to us after the fact. We have never seen her have a seizure,neither has anyone else except her mother,even the doctor says there is only an abnormalty in a neuron small but detectible, nothing major, but know that there are some abnormalties, but we were also told that she would be off the medication by the end of this school year. She has now been put on a third medicine in the last year. We feel that the medication is the problem and that she could function better if we knew how to deal with the problems caused by all this. Help us please.

TVREDDY - 10/19/2003 6:17:32 PM
My Email: venu61@indiatimes.com

Comments:
My son 11 years old had first epilectic seizure on 18/9/03 when he fell down in the bathroom in the early hours at 5: 00 Hrs.The seizure lasted for about 20 seconds in which he lost consciousness and body parts became stiffened.After throwing some water on the face he regained consciousness .EEG & MRI was taken after consulting a neuro physician.While EEG was normal MRI showed a very mild prominence of temporal horn .He was advised to take Eptoin 150 mg daily ( Phenytoin)which he is being presently taking.Again today at the early hours of4: 00 Hrs he had symptoms of seizure when he got up to go to Toilet.As I was with him in the toilet I could prevent any fall .He had nausea and vommiting sensation . I will be grateful if any body can advise on the treatment of the problem as we are very much worried as nobody in our near relatives has any such kind of problem.

Kerstin Schulz - 10/19/2003 3:49:19 AM
My Email: Kerstin-Schulz-@t-online.de

Comments:
Our son Vincent had his first seizure in the age of 8, now he`s 13 the situation became much better by taking Keppra and Lamictal. Meanwhile there are nomore big seizures, only if he sleeps longer he has tonic seizures (5-7 seconds) in the moment of waking. He is normal in progress and would love to spend 2 or 3 weeks in UK (like many other pupils in his class do). As parents we are afraid to send him by a commercial exchange programm and would prefer to find guestparents who are able to deal with this type of situation, with children in the same age that would like to visit in exchange Germany. If you know interested families, please let me know.

Rose - 10/16/2003 10:01:39 AM
My Email: JoyMcfarland@elvis.com

Comments:
Diagnosed on June 6 2003 at age 5 having seizures. Swinging of arms, dialated pupils, violanted jerks or kicks legs. Bites pillow with teeth. Saliva runs down her both. Had Strep B at birth. Also has a developmental delay. She is otherwise a happy child. Loves to play and enjoys school.

Lisa Jane Davies - 10/12/2003 5:44:20 AM
My Email: Curlymops45@hotmail.com

Comments:
My daughter, Chloe, is 4 on 28th October and had Severe Myoclonic Epilepsy in Infancy (Dravet's Syndrome), with possitive SNN1a gene mutation. I have read some of the stories and my heart goes out to all the families.

Beth - 10/8/2003 7:27:28 PM
My Email: tbpie@aol.com

Comments:
I have a 4 year old son who was recently diagnosed with epilepsy. He has had generalized tonic-clonic seizures and was put on Trileptal but we started have some behavior problems at home and in preschool. HAs anyone else experienced behavior problems with Trileptal? We are now trying Keppra. Has anyone had experiences with ADHD along with epilepsy? I would love to hear from anyone with advice!

Julie Cooper - 10/6/2003 1:59:08 PM
My Email: juliecooper@gwelmor.freeserve.co.uk

Comments:
Brilliant website,thanks for all the help for myself and my daughter Hazel aged 13 years.We both have Epilepsy.I have had Tonic Clonic for 16 years,Hazel has had Complex partial epilepsy for 8 years.

Jennifer - 10/3/2003 5:43:49 PM
My Email: mmgwife@adelphia.net

Comments:
my daughter is 3 years old and has had epilepsy since july 2002. she is on depakote and phenabarbetol but her depakote levels are very low lately and her seizures are getting worse. i want to take her to the hospital but our vehicle broke down and i cant find a way to get there. (the hospital she needs is 300 miles away) ive been searching for something i can do to help her until we can get her to the hospital. if you have any ideas please email me.

L*arua - 10/2/2003 2:23:24 PM

Comments:
i think this website is gr8 i luved visitin and i think its important that people should understand what epilepsy is and how it affects people

christy Brents - 10/1/2003 9:45:04 AM

Comments:
I have epilepsy since i was 13 i am 25 now but i know it is very hard for those to deal with this type of situation b/c i cant drive and i need to get around alot so it is hard . but you know you always find out ways to work things out . most people have had epilepsy all there lives so i guess that makes me lucky but i still have limitations too we all do in life but you need to live day to day and dont take life for granted b/c you never know when if youll see tommorrow i know i almost didnt . but think positive and make others feel happy about themselves and then you will know youve helped someone it males me feel better i now work with special kids and i love my job . so just keep smiling god still loves you no matter what you think. god bless

John - 10/1/2003 7:43:59 AM
My Email: john_banks_4@hotmail.com

Comments:
Our Daughter Nicole 4.6mths is an non identical twin to her sister Liz. Nicole had her first Seizure, just after she was 1yr. We felt that M.M.R might of caused this. We were later told that Nicole had, had a cystic leison on her Brain. Nicole had apparently had a stroke prior to birth,but nicole had no problems before her 1st year.She has been on Sodium Valporate as well Rectal Valium. Nicole has gone backwards in progress, as she is continually having minute seizure.Our only hope as we have been told is for her to have the damaged part of her Brain Removed, as it is causing problems for the normal part.Any replies Welcome Thanks

chelsea - 9/20/2003 4:11:15 AM
My Email: balla1@btopenworld.com

Comments:
my daughter as epilepsey and is photosensative i was looking through you information and found it very good thankyou

Jaymee - 9/18/2003 12:09:29 PM
My Email: baby_blue_159@hotmail.com

Comments:
Hey everyone out there.I just wanted to guys to know that as a child i did have epilepsy and yes it is extremly scary, but i grew out of it and i believe that you all will have the chance.I had it for about 7 years. I am very happy that i found this web site cause i found out that im not alone and that there is other people out there with eilepsy. thxs

Sabrina Dusek - 9/15/2003 2:31:48 PM
My Email: sabrina.dusek@humble.k12.tx.us

Comments:
My daughter is 6 years old and has had seziures since she was 9 months old. I just feel it is really good to have support and be able to communicate with other that know how you feel and what you go through day after day.

Sharon Cruikshank - 9/12/2003 12:07:04 PM
My Email: saharpe@attglobal.net

Comments:
My son Jason (story on this site) has just been diagnosed (by me, thanks to this site) with Infantile Spasms. He has had them for 4 months. He has severe brain damage from a cranila bleed a 5 weeks of age. Now he probably has more brain damage from the seizures, but at least we know what they are now and have started treatment (Vigabatrin).

talitha mandic - 9/7/2003 7:20:16 PM
My Email: perfect_pop_princess@hotmail.com

Comments:
hey this is a great website to see other children and families and their fight against apilepsyme not knowing realy what epilepsy was untill my school entered a website comp this site is da bomb keep up the good work love ya tilly

Susan Allder - 9/7/2003 4:04:40 PM
My Email: sbayley1@yahoo.com

Comments:
I've just found out that my beautiful daughter of 5mths has epilepsy. This is a very hard time for her dad and myself. I'm just looking for some support and somebody to talk to. And to let me know what to do in this hard time for me and my family.

Tammy Milstead - 9/6/2003 9:16:18 PM
My Email: wlv1026@aol.com

Comments:
I don't know where to begin. My son Logan is almost 3 years old. He had his first seizure when he was 4 months old. He was put on phenobarbital and was seizure free until September 4, 2003. His Dr. took him off of the pheno. and he was off of it for 2 months. I haven't stopped crying yet. I don't know what to do. I just want to know why these doctors can tell what they are, and give medication to control them, but can't tell why they happen.

Claudette - 9/5/2003 3:54:21 PM
My Email: candsheight@ns.sympatico.ca

Comments:
HI , I have really enjoyed finding this site. It makes me feel that I am not along. My sone is almost 5 years old. He had Left Frontal lobe Seizures. He was just switched to Trileptal ( 1200mg/day)last week. He had siezures when he was 4 months old , was put on Phenobarb for 3 months then went siezure free for 4 years. Just this march he had a full body siezure, and we have been on a roller coaster ever since. If there is anyone who reads this and their child is on this new medication in please feel free to email me so we may chat. Thanks so much!!! :)

christoph1998 - 8/27/2003 9:40:04 AM
My URL: http://groups.yahoo.com/group/christoph1998/
My Email: christoph1998@yahoo.com

Comments:
Hello all, This is a Open letter to all that I know. I would lke to invite everybody to my new group for peope that are takning Strattera. Other people might have taken this drug and had sid efficts and I would like to talk and chat with them and see if I can learn about how this drug has effeceted them. To see if they have taken any other A.D.D drugs. I will get new members soon. I think that this group will be great soon. Question are any one that you know know taking Strattera.

pam - 8/27/2003 7:30:50 AM
My Email: bobbys_girL_31535@yahoo.com

Comments:
My daughter Jade was diagnosed with epilepsy in March 2003. The information and comments from this web site have been very helpful. I thank you very much. She has developed some new problems associated with her epilepsy or her medication, we are unknown. She is having alot of learning disabilities. If any parent has any information, please email me.

Wanda - 8/26/2003 7:46:47 PM
My Email: nychic@sc.rr.com

Comments:
HI, MY DAUGHTER TAYLOR IS 1 MONTH SHY OF 6 YEARS OLD AND HAS HAD EPILEPSY SINCE 13 MONTHS OLD...SHE HAS GRAND-MAL SEIZURES. SHE HAS BEEN ON SEVERAL DIFFERENT MEDICATIONS BUT NOW THE DOCTOR IS TRYING HER ON LOMICTOL, SO FAR SHE IS STILL HAVING SEIZURES BUT THE DOCTOR SAYS ONCE HER LOMICTOL LEVEL INCREASES IT SHOULD HELP HER. SO FOR NOW I JUST WAIT AND PRAY...YOU WOULD THINK AFTER 5 YEARS NOW OF HER HAVING EPILEPSY I WOULD BE USED TO IT BY NOW BUT DEFINETELY NOT, EACH SEIZURE I WITNESS HER HAVING IS LIKE THE FIRST TIME TO ME, MY FEARS ONLY INCREASE MORE AND MORE..BUT I STILL HAVE HOPE AND HAVENT GIVEN UP YET.. IF ANYONE HAS ANY COMMENTS PLEASE FEEL TO E-MAIL ME,THANK YOU.

Liane Diaz - 8/18/2003 3:20:10 PM
My Email: www.diazmart@aol.com

Comments:
I have a five year old daughter and they keep telling me that she has breath holding spells, but it happens when something scares her by surprise or when she falls and hurts herself, then she holds her breath and doesn't come to for a few minutes and her eyes roll back, her arms are stiff, this last episode she urinated and never did that before like she lost total body function. please someone help me. The doctor keeps saying it's breath holding and i know it's not, she doesn't do this to get attention, it happens like i said when something takes her by surprise or she gets hurt and then it happens thank you

Tina Bear - 8/10/2003 11:54:35 AM
My Email: TinaSBear@msn.com

Comments:
My Son Johnathan, was just diagnosed with generalized epilepsy. He is 13. He had his fourth seizure today August 10, 2003. This one felt like it lasted forever. I tried to count but watched him instead. Eyes were open and teeth clenched, lots of jerky movements with his left arm. He is very tired and is throwing up 1 hour after the seizure, everything he does he says is so hard to do, he apologized for being such a burden and all I reassured him that he is not but all I wanted to do was cry.

Miranda - 8/6/2003 11:03:29 PM
My Email: bbopmum@aol.com

Comments:
I really enjoyed visiting the site.

Collin Wetherell - 8/2/2003 12:46:11 PM
My Email: Chrissylinn@comcast.net

Comments:
I have a 1 yr old son with Infatile Spasms. He has had them since he was 4 months old. My husband and I took it really hard, cause we had no idea what he had and why did this happen, when we first found out. Collin has been on ACTH, that was really hard giving your own child a shot. Now he's on Vigabritin and Topomax. It seems to be working, but then there are days that we will go 3 weeks without any then one day 20 seizures. So it goes up and down, like a rollicoaster. We had to increase the medicine again this week, so now we will just wait and see. It's very hard to see your child go through something like this, when u just want to fix it..and u can't !!!It's all in God's Hands...But there is one thing that i would like to tell parents out there, that when everytime your child smiles at you, remember that it's magic!!!! It gets me going day by day....This website is really great, for all of us to talk about our problems and to email each other, if we need someone to talk to...Cause nobody really knows what we are going through, until they really go through it...And boy it's tuff...Collin is my pride and joy. And we will do anything to make him keep smiling....(MAGIC!!!!) God bless you all...and your beautiful children too...email us anytime... :-)

collin wetherell - 8/2/2003 12:26:31 PM
My Email: chrissylinn@comcast.net

Comments:
hello

Latisha - 8/2/2003 6:06:07 AM
My Email: latisha_miller@yahoo.com

Comments:
I have an 10 yr old son who has epilepsy and it affects his learning his attitude and his weight.He's on 5 different medications and nothing is seeming to work. I'm glad to have found this group just knowning I'm not alone is very helpful within it's self.

Mari Costante - 7/26/2003 3:38:02 PM
My Email: Costante1759@charter.net

Comments:
Just wanted to thank everyone for letting me share there experiences on epilepsy. Im glad there is people to talk to on this issue.Its hard to talk to someone especially when they never been through it.Thanks for the support.

John Adrian Villegas - 7/21/2003 5:55:12 AM
My Email: rizzacvillegas@hotmail.com

Comments:
He had seizures when he was 2 years old, he's 9 years old now. Depakene is his medication.

Tamara Smith - 7/20/2003 12:01:11 AM

Comments:
I just want to thank the people behind this site. It has been very helpful to me and supportive as well.

tonya - 7/19/2003 6:28:25 PM
My Email: laird63@msn.com

Comments:
Hello I am the mother of a 5 year old daughter who has epilepsy. she was diagnosed with it 3 years ago. she has grand mal seizures and takes a medicine called lamictal 3 times a day. I have noticed since she started kindergarden she does not learn as fast as the other kids in her class.could this be from so much medicine? any one else with this problem? email me at laird63@msn.com

Virginia - 7/8/2003 1:54:57 PM
My Email: solis0119@hotmail.com

Comments:
I have a 5 week old son who has been having seizures since he was born. He was a full term baby, born by c-section because his cord was around his neck. Other than the siezures he is very healthy. He was in the hospital for a week after he was born and then went home on phenobarbital. He did great for about 3 weeks then start seizing again and has not stopped since. They added Trileptal on top of the phenobarb and he still siezes about every 20 minutes, all day, all night. Still no diagnosis. If anyone has any comments or advice for me I would be greatful. Virignia

elishia - 7/8/2003 12:14:51 PM
My Email: candi_coated314@yahoo.com

Comments:
i have a 6mo old daughter that has jsut been recently diagnosed with epilepsy and i dont know why. the only thing that i know is that she came out shaking and all of the doctors told me that it was normal. but she contiuned these spells for 2 months straight she even did not have a bowel movement for 3 weeks of her little life which last from age 3 wks to 6wks. both EEG's were abnormal and the last doctor told me she does have epilepsy. i am so scared because i dont know what damaged has caused her since then and she seems normal. recently she has stopped most of the shaking now her hands feet and lips turn purple and blue. she has started on trileptal but while we were out to eat yesterday her lips turned purple for about 2 mins and her body stiffened bust she was very respondant during then....SOmeone please help if you have any idea what is going on with my daughter!!!!! desperate mom

carolina holness - 6/26/2003 5:27:57 PM
My Email: kllrmom@hotmail.com

Comments:
I have a daughter that just began having seizures. She is about 3 months into her menses and is 11 y.o. She was a 26 week gestation baby w/no seizures, but suffered a head bump about 2 months ago. Neurology has put her on Topamax and has had no more seizures, but she is on 15mg/day. She had one G.M. seizure and another of just body shaking type. I am trying to link up with others that may be in same type of boat...we do not have a diagnosis as of yet as MRI has not been read. She is going into 6th grade and reads and comprehends @ 8th grade level. I am leary of the meds...she says she does not feel sparky anymore. I would like to touch base with others that may feel they are in similar situation.

Shelly - 6/26/2003 12:59:43 AM
My Email: sah1868@yahoo.com

Comments:
I have a 3 year old son who has been diagnosed with Partial Epilepsy and is taking Tegretol. His daycare provider is claiming that he has become more agressive since being on this drug-I say it is him coming into himself (we bypassed the terrible 2 stage). Has anyone heard of this-I can find nothing. Also what is the likely hood that he will develop ADHD? I have seen a lot about this and it concerns me. Thank you!

Dereke and Artiana - 6/23/2003 4:38:36 PM
My Email: yolandaupton@aol.com

Comments:
Dereke is my 2 year old son and he had a seizure at the age of 21 months old due to a high fever, it has been almost 5 months and I thank the good lord that he hasn't had another seizure. Artiana is my niece she is 7 months old and we think that she has been haveing seizures since 3 months but we are not sure we go for a eeg this friday. God Bless you All

Linda - 6/23/2003 12:17:38 PM
My Email: crabbycake521@hotmail.com

Comments:
Hi there, I have a 7 year old who has been experiencing status seizures since 3 months old. I just came across this site today. I can't believe after all the research I have done on the net that I did not find it sooner. In any event, this is a most amazing site and I commend the "creator" for a job well done.

Brian Arcella - 6/20/2003 10:50:55 PM
My Email: serpent6@bellatlantic.net

Comments:
My son Dominick who is 9 months old and truley the greatest jpy I have ever experienced in my entire life has been diagnosed with Infantile Spasm's Dominick was born with Downs Syndrome. That doesn't seem to have slowed him down one bit. By all accounts he doesn't have all of the classic signs of a downs kid and he does remarkably well with all of his early intervention programs. At age 4 months Dominick under went open heart surgery for a VSD (Ventricular Septal Defect) He came through the surgery like a champ. Thanks to the skilled hands of Dr. Thomas Spray of C.H.O.P. The morning of his day surgery for an un-desended testicle I was holding him in my arms just before he went in to surgery and my wife and I both noticed a "shudder" the doctors assured us it was probably just because he was cold. Wrong, he continued these episodes for another few weeks when we decided to take him to his pediatrician and she recomended we go see a neuroligist(Dr. Dorathy Pietrucha). We videotaped him for he and she had him admitted the following Monday. After his EEG came back she was very concerned and rightfully so he was having seizures about every 20 secounds. After a battery of tests and consoltations she decided to put him on ACTH. Today was his 3rd injection and he seems like he starting to get back to his old self. Baby talking a mile a minute. Although the seizures are still happening he does seem to be improving. We are under house quarantine for 2 weeks because his auto-imune system is low so his Dr. doesn't want to take any unnecessary chances. Needless to say his mom and I are both worried sick over this and finding this website that has actual kids and parents and their experiences is a wonderful thing. Neither of us are medical professionals so we don't understand fully what other sites are trying to say. Here we can deal with other mom's and dad's Thanks for beiing here for us.

Jesse Lalor - 6/16/2003 12:45:53 PM
My Email: rhonal@dol.ie

Comments:
Hi, I'm Jesse, I have epliepsy. I am eight years old and I have had it since I was 5. It's really weird because I get tickles in my leg. I have to take tablets every day but it's ok, it doesn't effect me when I'm playing. I love singing and dancing. Bye Bye for now xxxxxxxxxxxxxx

gabriel - 6/11/2003 1:21:34 PM
My Email: amandhill@yahoo.com

Comments:
I am Gabriel's mother. He is currently having between 20 to 40 seisures per day. He was diagnosed with epilepsy on september 13, 2001. He started carbamazepine. He did not have any more seizures for 9 months. Then we decided he was doing so well we would wheen him off the medication. Big mistake he had 15 seizures in a week. We put him back on the medication. About 3 months later he collapsed in the living room. I took him the ER. they said take him to have his level checked. No one informed me before that day that he needed frequent level checks. They said he level was okay but raised the dose anyway because of the break through seizures. This started the constant changes of medicine. His seisures continued to worsen and increase in number.Until we ended up in the hospital for over a month.At the worst point he was having so many seisures in a day he could hardle catch his breath in between. I was scared he was goin into a coma.We went home with him still having 20 + a day. We got them down to about 4 to 6 a week. But, that didn't last even a month. We are back to 20+ a day. We cannot get him stable with the dilantin he goes from one extreme to the other. We have been to the hospital 2 to 3 times a week for level checks. I am concerned abut the long term effects of this constant seizure activity. I have quit my job to stay at home and take care of him. I don't know what we are going to do if we cann't get this under control. Any one who has any ideas or comments on how to help him get through this e- mail me or mail to: Amanda Hill 15517 hwy 5; Cabot, AR 72023.

Lisa Hatch - 6/9/2003 3:03:40 PM
My Email: jacers1@excite.com

Comments:
I've got epilepsy. But the type of epilepsy that I've got is called Juvenile Myoclonic Epilepsy, I was diagnosed almost 5 years ago. I'm currently taking Depakote, and previously I was taking dilantin.

liz forbes - 6/9/2003 9:43:17 AM
My Email: liz_forbes2@yahoo.co.uk

Comments:
I never knew that there was this kind of information support, my son is 6 years old and he has complex partial epilepsy ,it has been a hard 2 years

Carol B - 5/23/2003 5:42:01 PM
My Email: carol@bassimac.freeserve.co.uk

Comments:
Side effects of drugs often settle down . . .Please perservere if you can . . . Greetings from London. This website is one of the best I've seen on 'Epilepsy in children'. I like the fact that you can search according to childs age, location and even medication they're on. It was /is consoling to know that others are experiencing the same worries as I was when my son aged 15 was diagnosed with Grand Mal Epilepsy in December 2002(just 5 months ago). He had had 4 seizures in 19 days . . . . The doctors thought this excessive and really we had no option but to agree to him taking Anti -convulsant tablets. How upset we all felt an otherwise healthy 15 year old on regular medication ? ? He was started on medication in January 2003(Carbemazepine currently 200mg in morning and 400mg at night). The side effects of the drug concerned me at the beginning - sleepiness, short term memory loss, moodiness ( tho wasn't sure if this was just being a teenager ! ). I found out that often in the beginning of children taking their medication - it can take a while for the drug to settle. After some weeks on it, it didnt seem right that he was still having muscle twitching, unsteadiness, light headedness etc so the Hospital Consultant thought perhaps the medication was too strong. His tablet was reduced from two in the morning and two at night to only one in the morning and two at night. This was the best thing that could have happened. The side effects decreased ( he is just a little sleepy at times) and he has had no further seizures. I am so glad we perservered through it all . . .and hope your readers can do the same. Its not always wise to change medication if reducing the amount slightly reduces the side effects . . .though I do understand this does not work for everyone. Regards to all that are coming to terms with their childs epilepsy diagnosis . . . Carol B

stephanie - 5/22/2003 6:00:05 AM
My Email: steph_hottie4202005@yahoo.com

Comments:
i have granmal seizures and they are not cool at all they suck

ARIEL MEILE - 5/21/2003 10:11:17 PM
My Email: SGOULD@TGRSOLUTION.NET

Comments:
HI,MY NAME IS SHERRY I AM ARIELS MOTHER SHE IS 11 YEARS OLD SHE HAS EPILEPSY,SHE HAS HAD THIS SENCE 2 YEARS OLD.HER FIRST SEIZURE PUT HER IN A COMA FOR 2 DAYS,WE HAD LOST HER THREW THIS SEIZURE 3 TIMES,IT WAS A NIGHT MARE,,IN THE PAST 9 YEARS IT SEEMED THE MEDICANES SHE IS ON CONTROLED THE SEIZURES.SHE HAS HAD A FEW BAD TIMES WHERE SHE WAS TAKEN TO THE ER FOR SEIZURES BUT THEY SEEMED TO BE CONTROLED,TILL THIS LAST FEW WEEKS,SHE HAD A EEG TODAY IT WAS VERY UPSETTING TO KNOW HER SEIZURES ARE GETTING WORSE,I HAVE BEEN NOTICEING ALOT OF JERKING IN HER SLEEP,BUT I REALLY DIDNT THINK IT WAS THAT BIG OF DEAL.I HAD TOLD HER FAMILEY DOCTOR ABOUT IT AN SHE DIDNT THINK IT WAS SO INPORTANT,BUT IT IS,NOT ONLY IS MY DAUGHTER HAVING ABSENT SEIZURES SHE IS ALSO HAVING PETITMAL,ANMYOCLONIC,WHICH IS UPSETING,I AM ASKING IF YOU HAVE A CHILD WITH EPILEPSY,TAKE YOUR CHILD TO A DOCTOR THAT TREATS EPILEPSY,NOT JUST A FAMILEY PRATICES,IF I HAD DID WHAT MY FAMILEY DOCTOR WANTED I WOULD KNOW HOW SERIOUSE HER SEIZURES ARE,HER EEG SHOWED SEIZURES CONSTANTLY,IT WAS THE WORSE EEG SHE HAS HAD IN 8 YEARS,I AM CONCERNED THAT SHE MAY BE AT THE AGE WHERE SHE IS GOING TO START HER PERIOD,WHICH IM THINKING THIS COULD BE CAUSEING ALL THE SEIZURES HER RESANTLY,BUT THATS MY APPION I WILL KNOW WHEN SHE GOSE TO THE DOCTORS NEXT WEEK WHICH IS A PEDIATRIC NEUROLOGEST,ANY INFO YOU HAVE ON THIS WOULD HELP.SHERRY GOULD.

Cathy Rice - 5/21/2003 1:42:48 PM
My Email: crice318@yahoo.com

Comments:
My name is Cathy and my son had a seizure back on Dec. 26th none since then but his Nero. Dr. has put him on Depakote. He is doing fine but has had some hair loss which is minimal. He has also, speech problems along with some learning disabilites, not bad. The Dr. wants him to go to the EMU unit at the very good hospital for further testing to see if the Learning Disabilities are from seizures that we don't see. Has anyone done this procedure? I would be a day with med and one without. They want to watch everything he does and to monitor him. Thanks, Cathy a also very concerned mom....

Wanda Williams - 5/16/2003 12:34:45 PM
My Email: wwilli01@jpshealthnetwork.org

Comments:
I have just found out that my grandson at nine months has epilespy. I would like all the information that can tell me how, why, and what to do. You can mail it to: Wanda Williams, 5729 Oakleaf Dr. Fort Worth Texas 76132. thank you.

Debbie - 5/16/2003 7:23:30 AM
My Email: packd@ohiou.edu

Comments:
My daughter was diagnosed with epilepsy last June and we are still not getting any answers for the pressure in the left side of her head behind her eye and she is now having nose bleeds. 2-3 a week. We are desperate for some answers. She is also complaining of this loud tone in her ears at times. Has anyone out there expereinced any of these symptoms? Please help!!! Desperate MOM!!

Katryna - 5/13/2003 5:57:31 PM
My Email: buttshank_05@hotmail.com

Comments:
My brother had grand mal seizures last April and in June...They don't know what has caused them...The doctor's think that it was because of puberty..They have put him on depakote and he has been fine ever since...I thank the people that have made this site because they have given me an understanding about what the side effects are to this medicine...I am doing a research paper on epilepsy and am going to use this medicine and its side effects to help me get a good grade...Thanks again...You really helped me!

adriene - 5/11/2003 1:09:49 PM
My Email: adriene2@yahoo.com

Comments:
hi. my son was just diagnoised with epilepsy on april 28, 2003 and he has about 2 seizures a day. he is only 19 months old. i am so scared. i have delt with this with my mom but it is different. please anyone give my suggestions or help it will gladly be of help.

Dustie - 5/6/2003 12:37:53 AM
My Email: PRISSIE540@aol.com

Comments:
Thank you Rob for this site. Hope your daughters' hip surgery went well? My prayers go out to all of you.

Ashlee French - 4/28/2003 11:12:31 AM
My Email: afrench15@hotmail.com

Comments:
This site is very helpful to me, because my brother has epilepsy and this site helps me understand him. Thanks so much for running this site, it's a huge help to me and i am sure many others.

Stacey - 4/23/2003 9:57:09 PM
My Email: StaceySakacsi@hotmail.com

Comments:
My Goddaughter suffers from seizures of an Unknown orgin. She is currenlty on Tegertol and is going to start a new drug within the week. She has baffled doctors for 2 1/2 yrs now. She cannot go outside in the sun, if she does she starts siezing. If any one has a child with this simalar disorder please contact me. Thank you.

lexi royster - 4/21/2003 11:50:19 AM
My Email: guthriezoo.net

Comments:
why have epilepsy my life is awful.think before you talk don't make fun its wrong

Missi - 4/8/2003 8:05:19 PM
My Email: royal_froggie@hotmail.com

Comments:
Hey i'm doing a research paper on epilepsy and i came across this site in my research. Best of Luck to everyone.

Carol Sixsmith - 4/7/2003 7:43:35 PM
My Email: csixnuts@mailcity.com

Comments:
Thankyou For allowing us to chronicle and network with others about our children who are the most important people in our lives. You make it easy and helpful in our difficult times. Sincerely Carol Sixsmith, bobcaygeon Ontario

Elda - 3/29/2003 7:31:36 AM
My Email: eld06@yahoo.com

Comments:
My daughter is 5 year old. Between 6 months to 2 years of age:first convultion/fever. After 2 years till now (5 years): she show the forehead(she has a communication problem) then she begins to stare like being absent/ she gets an epileptic(uncontrolled muscle movements) like situation/then apnoe.We have to assist her with a respiratory balloon and RUSH to the hospital.(about 4 times a month) This situation repeats over and over. We are desperate. We went to Holland without results. Test: MRI-CT scan- EEG- ECG-Lumbal puncture Medications: First year, Depakene From six months ago: Tegretol Feb'03: twice a day Tegretol @ 10ml twice a day Depakene @ 12.5 ml three times a day Topamax @ 2 ml. Who knows this situations and can provide help. We will apreciate this. DESPERATE MOM in Curacao Neth.Antilles

Patricia - 3/24/2003 4:53:28 PM
My Email: pat-mar@rogers.com

Comments:
I am doing a report on epilepsy and sports participation. I was wondering if anyone has any info, knows good books or websites on this or if they have any information based on their experiences on this topic. I have not found any information showing that physical activity can lower the frequency of seizures or provide significant benefits. I appreciate your help and I think this website is fantastic.

Lori - 3/22/2003 3:32:43 PM
My Email: lori_oneil@hotmail.com

Comments:
Excellent website!! Daughter Courtney dx w/ epilepsy Jan'00, has cortical dysplasia. She has been on Tegretol ever since and has not had a seizure since. Would love to hear from anyone that has a child having seizures due to cortical dysplasia.

Shana - 3/20/2003 3:36:28 PM
My Email: shana424@hotmail.com

Comments:
i'd just like to say for all of you, you amaze me. i had to teach a little boy with epilepsy for a couple weeks this summer, and it was hard and scary. I'm now studying epilepsy and hope to provide some info to my school. please email me with any info that would help. shana424@hotmail.com

Sandy Johnson - 3/15/2003 6:51:44 PM
My Email: sandyjohnson966@msn.com

Comments:
My seizures since 12/23/02 4 year old daughter just began a seizure conditopn since 12/23/02. She is taking Deprakote 250 mg twice a day but nods often and falls at times.

Domenico - 3/13/2003 2:31:50 PM
My Email: domenico@soundcitycorp.com

Comments:
I am new to this group, but I am a member of the HHUGS group which is a Support Share Group for parents with children with Hypothalamic Hamartoma, a benign brain lesion. It is a big help, as this group is, in helping to cope and deal with day to day situations as well as posting any new surgial procedure. Our ultimate goal for us as parents is to find a cure for our children. GOD BLESS ALL

Oxmo the Oxymoron - 3/11/2003 12:17:17 PM
My Email: sillyoxmo@yahoo.com

Comments:
Writing a report for my biology class, thanks for the info! I'm also looking for info on absence seizures and the aura some people get before a seizure. Also, can some people see things or hear voices during one? Information would be greatly appreciated

Patty - 3/10/2003 11:09:41 AM
My Email: pdevine1@charter.net

Comments:
My daughter was diagnosed last Nov. with absence seizures. The med. worked for the absence, but now we believe she also is having simple partial seizures. Her neuro. says she can't have that kind because she has generalized seizures and can't have both. He should read all the stories here. She's having another EEG tomorrow. I am seeing another neuro. in April.

Bridget - 3/7/2003 7:04:02 AM
My Email: BEAN1175@MSN.com

Comments:
I just wanted to say what a great sight this is. Everyone here is such a great help and so willing to talk. They have helped me through alot with my daughter who is 6 as we are trying to find out what kind of epilepsy she has. thank you for a great place to post questions and concerns with others going through the same thing.

Amanda - 3/4/2003 3:01:38 PM
My Email: millymollymandy3@hotmail.com

Comments:
I am so glad i found this web-site! My son has not yet been diagnosed with epilepsy but has collapsed and fainted on the floor, four times in the past four years. There doesn't seem to be any explanation and we are waiting to see what our GP will say, as the most recent attack was today. If anyone would like to e-mail me with advice or stories etc i would love to hear from you. God bless all the children.

Cathy R - 2/27/2003 9:09:46 AM
My Email: crice318@yahoo.com

Comments:
My name is Cathy and my 7 year old son had his first seizure on Dec. 26th after being normal sick the weekend before Christmas. Been through all the tests and he has been put on Depakote. I am working with the Ped and a Child Nero. My question is my son has a thing now and right before the seizure with having to look at the sunlight when in the car. I video tapped it while he was doing it in the car. He never goes into a seizure and he talks with me. Bus driver says he was doing it before the 1st seizure. His eyes goes upwards and stares for a few seconds or more. Has anyone ever experienced this with the sun thing? I showed the video to Dr. and says it looks like a seizure but wasn't sure. He's getting back to me after consulting with others. It scares me to pieces. Can anyone help? crice318@yahoo.com

Annemarie Hoenselaar - 2/26/2003 3:56:37 AM
My Email: annemariehoenselaar@hotmail.com

Comments:
Hello, My name is Annemarie and I am from Holland. I have a son who is now 11 months old. He has been diagnosed IS. i am searching for parents who have a child with IS. An older child. And the child is doing very well. No delays and he is goging to an normal primary school etc. Thank you very much, Annemarie

Lucinda Wilson - 2/25/2003 3:58:34 AM
My Email: lulupops@hotmail.com

Comments:
Thanks very much for this web site I'm a carer for people of all ages with epilepsy and it really gets me thinking. Thanks again as it has really answered some of my questions

Sharon Ashley - 2/24/2003 7:30:05 PM
My Email: kdsharon@msn.com

Comments:
Thank you for making this website available to parents like myself who need support in this area. My Daughter, who is 4 years old, had a Gran-mal seizure 2 months ago And I feel like I'm going crazy, She's been fine(she is taking Tegretol 2 times a day)After 3 days in the hospital and so many tests,just about everything was ruled out as the cause of her seizure. Not knowing what the cause of or what will be the cause of the seizure is leaves me feeling like I'm going mad.

Tristan J. - 2/24/2003 8:34:05 AM
My Email: Markemark

Comments:
My sister Karsti has epilepsy and I would like to learn more about it. If any one has some info please contact me. Thank you very much. I pray for everyone who has this. I wish sometimes I could take this away from my sister. She is almost 11 years old and we found this out when she was only 9. Please give me any info ASAP. Thank you

Tristan J. - 2/24/2003 8:26:47 AM
My Email: Markemark

Comments:
My sister Karsti has epilepsy and I would like to learn more about it. If any one has some info please contact me. Thank you very much. Tristan J.

Stephanie - 2/23/2003 2:33:15 PM
My Email: zochs@pacbell.net

Comments:
My son Nathan has been having local seizres since he was 3 1/2 months old, he is not almost 9 months. We cannot find a medication to help the seizures. We are currently on Topamax and that has helped the length of seizures.

Ann Gay - 2/20/2003 8:18:37 AM
My Email: amgvaca@yahoo.com

Comments:
Am very greatful for this site. Our daughter is 4 years old and has been diagnosed with epilepsy. She had been seizure free for 1 yr on Lamictal and came off the med in January. She was seizure free for one month and has just started back on Lamictal for "absence" seizures. I'm hoping we can get her on a lower maintenance dose than before. This site is EXTREMELY helpful to us. Thank you and blessings to you and your loved ones.

Shilo Hansen - 2/18/2003 3:25:45 PM
My Email: shione1977@yahoo.com

Comments:
hi, my son is six and has absence seizures. was found in summer of 2002. Am still going through some rough times but getting there a little at a time. Your site has helped me see that there is hope out there for a better tomorrow for my son. Thank You.

Lizette - 2/17/2003 6:14:19 AM
My Email: lizbren@spiderweb.com.au

Comments:
Thank you to all the wonderful people for sharing your story. I am hoping that we don't have a story to share,(I'm not willing to admit until the drs say it- sunds silly I guess) but knowing there are others out there going through what we think we are experiencing it makes it easier to accept and face

Lindsey Wood - 2/14/2003 9:35:08 PM
My Email: my_bud_2004@yahoo.com

Comments:
I am 18 years old and I have Epilepsy and Cerebal Palsy.I have a touch times running and walking. See my right leg is shorter then my left leg. Plus my right side is much weaker than my left side.

ghufran naveed - 2/10/2003 1:55:22 AM
My Email: loving_guess@hotmail.com

Comments:
its a informative site and i am really very happy to be online with this site. i want to make you clear that you people must pay attention towards pakistan because in pakistan # of patients are increasing suffered by epilepdy. i am also a patient of this killer disease and i want to know the latest research on it so i m writing you becuase please send me ur latest news about epilepsy so i can be a normal moving person in my society.

clare - 2/9/2003 3:26:15 PM
My Email: clare.dametish.virgin.net

Comments:
Having just read some stories about children with Infantile Spasms it has given me hope for my daughter, and it was lovely to read about other children with this condition, i.m not on my own... If anyone would like to contact me on my e.mail address about their child with I.S i would be very pleased to talk thanks clare

Susan - 2/6/2003 7:57:43 PM
My Email: suze64us@yahoo.com

Comments:
Thank you Rob for this site. I recently updated my son's information (Alex S. Tacoma, Washington), and when I first found your site a couple of years age, it helped me tremendously. I found the firsthand information from people that had gone through what we were, to be very helpful. My son, who at one time had on average 50-60 seizures per day, is now controlled with the ketogenic diet. This is not to say that Alex has no problems, he still cannot sit up or stand on his own, or communicate verbally. . .but. . .one day. . .you never know. I just know that as so many other parents that I've read about, that we hope and pray for our angel and all of the others out there like him! Good thoughts to all who come to this site. May God bless.

Tracey - 2/3/2003 3:22:59 PM
My URL: http://www.jordanstime.com
My Email: traciemill@msn.com

Comments:
I have to say what a wonderful site, for all those parents out there who are caring for children who suffer from seizures. I lost my son Jordan 6 years ago, he was born with the cord around his neck 3x and was blue, was left with brain damage. He suffered every type of seizure, sometimes having a 100 seizures a day. Spent months at a time in hospital on Clonazepam, which is supposed to help, but in truth didn't. I haven't read anything on this site as yet about "Vagal Nerve Stimulator" my son was about to get this ( a small valve inserted) in to his chest where you could try and control seizures before their on-set. Sadly he passed before given this opportunity. Jordan was tried on nearly all the medications and finally we found one that worked "Lamotrogene", the change in him was amazing!! Going from having 100's to none. The last few months of his life were a blessing, he wasn't suffering and was even managing to smile. My heart goes out to all the parents that are going through this, you feel so helpless, and it can make you angry. I used to be very angry at the Doctor's I couldn't understand why they couldn't help. The brain is a very complex organ, which is largely not understood. But please remember the love and caring and understanding you are giving your children - "They KNow" xxxx

Tracey - 2/3/2003 3:22:23 PM
My URL: http://www.jordanstime.com
My Email: traciemill@msn.com

Comments:
I have to say what a wonderful site, for all those parents out there who are caring for children who suffer from seizures. I lost my son Jordan 6 years ago, he was born with the cord around his neck 3x and was blue, was left with brain damage. He suffered every type of seizure, sometimes having a 100 seizures a day. Spent months at a time in hospital on Clonazepam, which is supposed to help, but in truth didn't. I haven't read anything on this site as yet about "Vagal Nerve Stimulator" my son was about to get this ( a small valve inserted) in to his chest where you could try and control seizures before their on-set. Sadly he passed before given this opportunity. Jordan was tried on nearly all the medications and finally we found one that worked "Lamotrogene", the change in him was amazing!! Going from having 100's to none. The last few months of his life were a blessing, he wasn't suffering and was even managing to smile. My heart goes out to all the parents that are going through this, you feel so helpless, and it can make you angry. I used to be very angry at the Doctor's I couldn't understand why they couldn't help. The brain is a very complex organ, which is largely not understood. But please remember the love and caring and understanding you are giving your children - "They KNow" xxxx

Renee - 2/2/2003 1:32:28 PM
My Email: melreneecitn@msn.com

Comments:
My daughter Shania was diagnosed on Thurs.Jan.30th with epilepsy. She has Complex Partial seizures and is being treated with Tegretol. I am frustrated, confused,and very sad. I am so glad I found this site. I am praying for healing and a better understanding and words of encouragement. Also I am hear to help anyone else.God says,"Where two or more are joined together,There He is in the midst."

J.Brown - 1/29/2003 11:59:17 AM
My Email: bubblegirl0505@yahoo.com

Comments:
I was diagnosed with epilepsy in April and I am touched by this web site and I give sympathy to the parents of this children on the dedication page.<