5 year old with epileptic spasms - any advice?

[camsmom]

Hi!

My name is Jen and I live in LA with my husband, my 5 year old son and my 4 month old daughter.

My son has been diagnosed with epileptic spasms at 4.5 years old. They are similar to infantile spasms but occur later in life, not in infancy. He also has slow spike-and-wave in sleep seizures and discharges thorugh the day. He was originally diagnosed with autism as he has behaviors on the spectrum. He is currently on Depakote, Zonisamide and Topamax.


I am just seeing if there are any other parents out there who have experience with this. He currently is seen by pediatric neurologists at UCLA but they don't have much information for us other than we need to aggressively treat his seizures and keep monitoring them to see if they evolve into Lennox Gastaut. If anyone has any suggestions - medication or otherwise, I would greatly apprecate it.

Thanks!

[Nakamova]

Hi camsmom --

Welcome to the site. You might want to check out the forum here called "The Nursery" where there are posts by parents of children with epilepsy. Some parents have found that there's a nutritional component to their child's illness -- I don't know if that might be the case for you but you can search for info on that and other topics using the tab at the top.

Best,
Nakamova

[RobinN]

Hi Camsmom - Hugs to you. It was hard enough to have my baby have her first seizure at the age of 14. I can't imagine at the age of 4.5.
Have you ever had a consultation with a DAN doctor? There are a few here in the LA area.
Another doctor that seems to be very knowledgeable in the area of autism, seizures, and whole body health is http://www.drhirani.com/
I am in near Pasadena, and have to work within our HMO. Luckily we seem to be on a new path with some interesting results.

[camsmom]

Thank you!

[Meetz1064]

camsmom! You might also consider getting in touch with another one of the supermods, DutchMom. You could send her a private message, if you'd like.

She is the mother of a child with Lennox-Gastaut Syndrome, and also works on another E forum for E children and their families, and has some excellent resources as well.

Welcome to CWE, btw. I'm an E patient myself, with an Asperger's kid, so I do understand where you're coming from as well--in a slightly different way. I'm sure you're going to find that there's a lot of information here, and tons of people to meet at this dinner party, so please enjoy yourself. Mr B has built us an AWESOME home here.

Take care!

Meetz

[Dutch mom]

Welcome to CWE Camsmom.

My 10,5 year old (special needs) son has Lennox Gastaut syndrome caused by brain damage wich makes him complex handicapped. His first seizures occured at age 1,5, he started out with absences and myoclonics in his sleep. anti-epileptic drugs didn't help to control his seizures and at age 3 he was diagnosed with Lennox-Gastaut Syndrome based on the typical slow wave and spikes pattern on his EEG and further development of his epilepsy with complex partials, atonic (head)drop seizures and tonic 'stiff cramps'. We've tried valporate, orfiril, topamax, ethymal, zarontin, lamictal, keppra, phenobarbital, felbamate mixed with clonazepam and clobazam. Nothing helped to control his seizures (but he sure suffered from many of the side effects.)

At age 5 we started out on the (classical) ketogenic diet and within 2 weeks we saw a significant seizure reduction. Before he had 10-100 seizures a day, now he was seizure free most of the time. After 6 month on the diet his EEG was improved > 70% (before starting on the ketogenic diet his EEG was showing epileptic activitiy 90-99% of time.) Since age 6 he is free of all anti-epileptic drugs and benzo's. He's not seizure free on the ketogenic diet, we have periods with no or rare seizures and periods with breakthrough seizures, tonic-clonics and tonics most of the time, most times breakthrougt seizures are related to inadequate ketosis. It's not easy to maintain this very strict diet for such a long period but we do our best, there are not many alternatives. One of them might be rufinamide (Inovelon), one of the new meds specially used for Lennox-Gastaut Syndrome. For infantile spasms there is a new one too: Galaloxone, wich seems to be succesful in controlling IS. It still is experimental.

I'm one of the moderators and founders of a Dutch parental support group for parents who all have kids with a difficult to control type of epilepsy & developmental delays or are diagnosed with one of the known epilepsy syndromes (IS, Lennox-Gastaut Syndrome, Dravet's, Doose, ESES, Landau Kleffner, Aicardi, Othahara.) We've about 160 members/families who do a great job supporting eachother on our forum and 'live' (we do organize anual family meeting days.) www.sos-mies.nl (in Dutch.)

You might want to take a look at these websites/forums:

www.matthewsfriends.org (recommended forum ketogenic diet)

My son's story (in English) you'll find here: http://site.matthewsfriends.org/inde...e=joni-s-story

http://infantilespasms.com/forum/ (recommended forum Infantile spasms)

http://www.lgsfoundation.org/ (Lennox Gastaut Foundation)

http://www.epilepsy.com/epilepsy/medicine_rufinamide (Rufinamide for Lennox-Gastaut Syndrome)

http://www.kidsepilepsy.com/ (database, lots of info there)

[Dutch mom]

Hi Camsmom,

I noticed you've joined the IS forum. I do hope you'll find more experiences and usefull information there.

[sharondemartino]

Hi I am new to this site and just read your post. My now 13 year old son was diagnosed with epilepsy spasms at age 12 in Feb this year. I have also found a site called The Infantile Spasms Community which has been informative although having older children with this condition is extremely rare im told. Cheers Sharon

[Andrew]

Hi All,

You may be interested in the following URLs:

http://www.indianpediatrics.net/july...ly-633-638.htm

Also:

http://faculty.washington.edu/sgospe...ine/index.html

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

Regards

Andy

[Dutch mom]

Hi Andrew,

My son's epilepsy sure is not caused bij pyridoxine deficiency.

[sharondemartino]

i did mention this to my neurologist and he was like thats clutching at straws ,but he wrote me out a slip for a metabolic urine screen . thanks