Personal info Child

name: Finnian James Cataldo
sex: Male
date of birth: 1/27/2005
city: Bronx
country: United States

Epilepsy info

primary diagnosis: Lennox-Gastaut Syndrome
additional: Cerebral Palsy,Cortical Visiual Impairment With Optic nerve atrophy,microcephaly,asthma,reflux,showing signs of Lennox-gastaut syndrome with multiple seizure types.
cause: Ventricularmeglamey caused by in-utero stroke
date diagnosed: Sept 4 2005
type(s) of seizures: myoclonic spams,tonic spams,absent seizures,drop seizures.
frequency of seizures: myoclonic 3-5 per day,tonic 2-3 per day,absent seizures 5+ per day drop attacts stopped.
additional health issues: Reflux with myoclonic seizures ans asthma and cronic constapation. Born with congenital cataracts very far sighted.Cataracts removed now wears contact lenses

Medications used (in chronological order)

Phenobarbital
- still being used: No
- effectiveness: Positive
- max. dose: 28mg twice daily
- positive effect: stopped seizures in the begining
- side effects: very sleepy,very withdrawn.
- comments: since pheno has been stopped he has done a 360 in development interacts now and starting to babble
Vigabatrin (Sabril)
- still being used: Yes
- effectiveness: Positive
- max. dose: 750mg am- 1000mg pm
- positive effect: stopped myoclonic spams in 3 days
- side effects: none noticed so far he gets his eyes checked every 6 mths by a retinal specialist
- comments: we have reached the max dose and spams are back
Topiramate (Topamax)
- still being used: No
- effectiveness: Positive
- max. dose: 45mg 3 times daily
- positive effect: seemed to stop all seizures
- side effects: feeding not great lost weight.
- comments: weaned on topamax & weaned off pheno really chanded his personality He is more with it now interacts starting to become verbal.
Levetiracetam (Keppra)
- still being used: Yes
- effectiveness: Unknown
- max. dose: 5mg x2 daily
- positive effect: just put on this drug 7/12/2006
- side effects: none yet. After we hit the max dose he started biting his hands.We have reduced and now are in the process of weaning.I guess being on it this long it doesn't work any more
- comments: he was put on this to hopefully stop his myoclonic spams seems to be losing effects on his seizures
Zonisamide (Zonegran)
- still being used: No
- effectiveness: Positive
- max. dose: 75mg 2x daily
- positive effect: Reduced seizures
- comments: It seems to have stopped the spasms but we have noticed more head drops and rapid eye blinking.He has gained weight
Lamotrigine (Lamictal)
- still being used: No
- effectiveness: Negative
- side effects: His seizures increased
Oxcarbazepine (Trileptal)
- still being used: No
- effectiveness: Negative
- side effects: We were only 2 months on this drug it did nothing as far as seizure control
Banzel
- still being used: Yes
- effectiveness: Positive
- max. dose: 350mg am and 400mg pm
- positive effect: It has made him more alert and he is trying his best to talk. He is making more sounds.His seizures are not as bad.
- side effects: Tummy upset for about 2 weeks when he started on it but none sisce
- comments: I do like this drug we haven't seen any side effects other than the tummy upset when he first started it

Alternative Treatments (in chronological order)

Ketogenic Diet
- details: We started him on this Dec '07 and by day 4 he was not having any more head drops. We are using the liquid form of this diet the soy based version
- still being used: Yes
- effectiveness: Positive
- positive effect: Head drops stopped which was great as he was havign them every 3-4 mins while awake
- side effects: Some constipation and an increase in his reflux but once we adjusted his reflux meds there was a huge improvment
- comments: Normally they only leave you on this diet for 2 years but we have passed the 2 year mark and he is still on it. We see a huge change in him since we started him on the diet

Personal Notes

Our wee man arrived 1/27/05 screaming his head off which was great as we had found out at 32 weeks pregnant something had happened to him diagnosed with right ventricularmeglamey. We met with a neuro surgoen before he was born ant he expained everything the good and the bad of what might be wrong or might not be wrong with our wee man. I can not thank him enough for that. So every thing that has happened to our Finnian is not a surprise but the seizures thats a diffrent story.
Finnian startled very easily and often got stiff. The startles were down played to him just being a jumpy baby and the stiffness got labled reflux.In july of 05 at 6mths old his eye docton asked if he had seizures and I said no the the vision lady asked and so did the OT. So when we went to the neuro a week later told him everyone suspected seizure activity but I didn't see any (Ithought he would shake all over and foam from the mouth). So he set up an appointment for an overnite EEG it was set for Sept 21. Finnian had 2 grand mal seizures on sept 4 at my brothers house. We rushed him to the hospital and had him on an EEG for 3 days he was put on pheno and they went away for about 4 weeks. At this stage I had looked up about seizures and knew what the could look like. In now he was diagnosed with Infantile spams and started on Sabril along with the pheno.
This was great every thing went away he started to smile and come along but this year that sll stopped and we went back for another EEG and they discovered that he is having multiple seizures types and also has a slow spike wave which indacates Lennox-Gastaut syndrome. Even through all this I wouldn't change anything he is a vital part of our family and loved very much by his parents and big brother and big sister and a large family.
Wow its been along time since I up dated his information.We are sitll having seizures. His drop seizures have stopped since we started the Keto Diet but the other typs of seizures still happen. We are going to a movement disorder doctor as they believe he has a movement disorder probably some form of Dystonia.He is doing good over all he will be having second hip surgery. The first one went great. Hopefully when he is all healed from this one we will be able to get him taking steps with a walker. Well thats our goal. He will be starting Kindergarten in September. Seems like yesterday he started his first year of Pre-k.

Contact info

For additional information, please send e-mail to Geraldine (eoghancat@aol.com)