Personal info Child

Epilepsy info

Medications used (in chronological order)

  1. Valproic Acid (Depakene, Epival, Sodium Valproate, Orfi)

  2. Carbamazepine (Tegretol, Carbatrol)

  3. Divalproex (Depakote, Depakote Sprinkles, Epilim)

  4. Topiramate (Topamax)

  5. Levetiracetam (Keppra)

Alternative Treatments (in chronological order)

  1. Multi vitamins

  2. Folic Acid

Personal Notes

Our daughter was diagnosed with epilepsy on november 25 2002 after a brief say in the hospital. On that Saterday she had the first seizure that we had ever noticed and had to be rushed to the hospital by ambulance. Before this happened we didn't eaven know what epilepsy was or that it ran in our family (on my husbands side) The people who had it have since past away and other family members are reluctent to talk much about it. Our daughter seems to be handeling her diagnosis quite well for a child of her age. We as parents were a little stunded but would rather have this diagnosis then some thing that is not so treatable. her seizures seem to be under control for now we have not noticed any since she started the meds. we have however noticed that she seems to want to eat alot more and does have some behavior problems since on this medication.
1/03 Katrina had a recent EEG the results came back normal the meds must be working at this time. She also just had a CAT scan because she was experiancing headaches in one side of her head the results of that were normal with no problems.
2/03 we saw a new nero today and after some more testing (24 hour eeg) hopefully they will come up with the right diagnosis at this time the doctor feels that Katrina has Benign Rolandic Epilepsy.
3/03 After haveing a video eeg done we still have no answer as to what type of epilepsy our daughter has but she did have her medication switched. The eeg came back normal for three days straight.
3/03 the doctor called tonight to say that Katrina had had a seizure while she was in the hospital during the night when she was sleeping. He said that it was a genrelized seizure and not a partial one as he had origianaly thought that she was having. He told us that the tegretol was not a good med for this type of seizure and put her back on the valproic acid.
10/30/03 - We started seeing a new Nero yesteday because ours is moving. We really like the new one. outside of him telling us that our daughter may have ADHD he told us all the same things that the old nero told us. Changed her med to Depecote Sprinkels. Waiting to see how it works on her.
11/28/04 - We saw the nero on 11/23/04 and I informed him that at school the day before Katrina had had some episodes that looked like seizures. She will be haveing a new 72 hour EEG during the week between Christmas and New Years. We will also be taking her to see a pediatric GI doctor to find out if she has some intestinal problems. She is constantly complaining that her belly hurts. Will update when we get more info.
7/20/05 we saw the nero on thursday we are starting the weaning process if all goes well Katrina will be off the medication by the second week in September.
8/2/05 Wean didnt go well and katrina had a seizure. we will be staying on the medication for a while.
12/21/05 Katrina had a cluster of seizure that lasted for 45min. to an hour today. had to be takin to the hospital by ambulance. She will now go back up on the dosing of medication to 250mg in the am and 250mg in the pm. We were at 125 mg and 250 mg it was theriputic at that level but not hight enough to control her seizures. We will see how this works she will be seeing the nero right after the new year.
1/30/06 We saw the nero today he said that when Katrina went to the hospital her med level was 70 she has to have a level of 100 to maintain seizure control. He said that she will be on the meds for two to four more years befor we can try to take her off the meds again. We were also informed that she is borderline adhd and may have to look into medicating her for this in the summer once we know that we have her seizures under control.
7/31/06 After a day of what the nero thinks may be aborted seizures He decided to up the doseage of meds that she is taking at night to 375mg. He said if this doesn't work she will have to have another 72 hour eeg.
9/24/06- Since the start of the new school year Katrina has not been doing well. She stated fifth grade this year in the middle school. The first day of school she had three seizures. She has had five seizures total in the past three weeks. We are do to see the nero on October 19th and hope that we can get this worked out because at this time she is spending more time in the nurses office then she is in class.
8/27/07- We are on the last day of of a 72 hour EEG, My daughter who is now 11 has been having these episodes that present themselfs oneday every 28 to 30 days. They always start with her waking up in the morning not feeling right she will get scared and mumbel that she feels like she is going to be sick though she never throws up she just feels like she is going to, then she will seem a little disoriented and will fall asleep for 20 min to a half hour. She will wake up and be ok for a little while and then it will happen again. She will have up to six of these in that day and then she will be fine for another 28-30 days befor it happens again. I hope this EEG gives us some info to help her.
1/3/08 Well this year has started off not so great Katrina woke up this morning having partial seizures. On November 19, 2007 she started taking Keppra to control them and it was working no seizures till today. Took her for bloodwork this morning and spoke to the nero we will be upping the dose of Keppra at night from 500mg to 750 mg hopefully this will work.
4/14/08 We had some more educational test done and recently found out that Katrina has some sensory disfunction. She will be working with an OT at school once a week for 30 min to help her with this. At this point she has been seizure free for 4 monthes with no med changes. We are keeping our fingers crossed.
8/18/2009 Saw the nero on the 17th at this point Katrina has been seizure free since Jan08. We have till Jan 2010 to go then we will start removing her from the Depakote at a rate of 1 pill a month till she is taking none. Then we will try to remove her from the Keppra. We had blood work done today to check med levels and the other norms when you are on medication. As far as school Katrina did great last year ending the year with a 91.6 over all average. She was in the 7th grade in a 15-1 class, there was 8 children in her class total. She has a great group of teachers and one of the best counselers a student cuold ask for. This year comming up she wil be in a 15-1 one class. Alt PE, and continue to receive OT. We are looking forward to another great year.
1/12/10 Well at this point we go to the nero tomarrow our daughter has now been compleatly seizure free on medication for two years as of Jan 2, 2010. We are going to look into weaning her off all medication I am looking for some input from other parents who have been through this process and how things have went for you. Some info on my Daughter She is now 13 years old, had first grand mal when she was 6 years. She at this time takes Depakote and Keppra to control her seizures. We will look to remove the Depakote first over the next six months and then the Keppra. We are scared for her because we relly do not want her to have anothe seizure but we also know that she would love not to have to take medication every day for the rest of her life. Please ane input that you can give would be great.Decided not to wean till the summer.
6/28/10 Have started the weaning process we will take her off the depakote first over the next 6 weeks then we will admit her to the hospital and hook her up for VEEG monitoring to take her off the Keppra. Keeping our fingers crossed that all goes well.

Contact info

For additional information, please send e-mail to Bridget (BEAN1175@MSN.com)