Therapy options for epileptic and autistic toddler

[greymatter]

Hello Forum, I am writing here to hear other peoples experiences and advice. My now 3 year old son is autistic and epileptic. He a focal epilepsy with daily generalized clonic, myoclonic and astatic seizures. He had infantile spasms just after birth for 4 month and then his absences started at 14 month after an inoculation, might be coincidence. We have tried 6 AEDs already and he had high dose IV steroids as well. As he is Gluten, Casein and Fructose intolerant and we follow a special diet (GF/CF). His epilepsy seems refractory to AEDs. At present he is on Levetiracetam, Valproic Acid and Oxcabacepin. The Oxcabazepin is still being increased and both the Cortison as well as the OXcabacepin have improoved his EEG. The Keppra is supposed to be reduced soon as it seems to not help anymore. Doctors have said that we still have the option for the VNS or the ketogenic diet. Also we would like to try Hyperbaric Oxygen Therapy. Does anyone here have experience with either VNS, HBOT or Ketogenic Diet for a toddler (he does not toddle - he can not walk or talk yet). Thank you.

 

[epileric]

Welcome Greymatter

There's a lot of parents here & at least one that has an autistic child. She should be by within the day.

I'm so glad you have a doctor that is aware of what is helping & what isn't. I was on valproic acid for decades with tegretol & Mysoline. One day the neurologist took me off the mysoline & valproic acid cold turkey. I'd expected a rise in seizures but it made no difference in my seizures. I was upset I hadn't been taken off of them earlier.

In the meantime, make yourself at home-someone should be by with coffee soon (mine's not so great). You might want to check out the nursery http://www.coping-with-epilepsy.com/forums/f42/ to hear more experiences with kids.

 

[Rae1889]

:cheers:
I make some pretty good coffee. I hope you like it strong.

You are not the only parent with an autistic child or one with epilepsy so don't worry, your not alone. Someone will be able to answer some questions better. lots of people (including adults) are on the GF/CF and there are a few kids on the ketogenic diet too. so hopefuly someone will step in soon.

 

[Nakamova]

Hi Greymatter, welcome to CWE.

You can search for info on specific topics using the Search tab at the top. I hope you feel free to explore the site. It sounds like you and your son have been through a lot of different treatments. I hope you're able to find one that helps.

Best,
Nakamova

 

[hootie]

Welcome, greymatter!

I have a son that is 10 (going on 11 in March...Yikes!). He regressed into autism at 1.5 years old. He was just diagnosed with E (absence seizures) in October or November of '09. I think the seizures started some time last year late summer or early fall. He had an EEG when he was 3 years old and no seizures were detected at that time (24 hour EEG). His 48 hour EEG this last Fall indicated 130+ seizures in that time frame. I only saw 2 actual seizures.

My son has been GF/CF, soy, egg, peanut, nut, corn, and rice-free for a while. He has other food and environmental allergies as well so I "know" about being "free". AAAK!!! Is your son soy-free? Soy has some similar proteins as casein. Some kids need to eliminate this as well (besides which, soy is not really good for you, unless fermented).

We do a "biomedical" approach (vitamins, minerals and other supplements) to manage his autism. I have seen some positives with this approach. We see a well-known Defeat Autism Now! doctor in the Chicagoland area. We also use homeopathy (like cures like) which does wonders in acute situations and helps slightly with his chronic (autism, allergies) issues.

Do you use any vitamins, minerals, supplementation for your child? It might be a good idea to find a doc to manage his case on this front. I can give you some recommendations if you are interested.

We have tried HBOT. He did almost 120 sessions (about 40 sessions each summer for three years in a row). EXPENSIVE!!! But, I did not really see any lasting progress. I know it works for some kids, though.

My son is on Depakote (1/2 dose). We just started using Neurofeedback for him in hopes that it will decrease his seizure activity so we can get him off the meds ASAP. Click on the NEUROFEEDBACK word at the top of the page in the box with all the words. Here you will find tons of posts and find the people on this list that are using NFB. It might be helpful to try something like this before considering surgery.

 

[dennis100]

Hi greymatter, As far as the VNS goes, you should not even consider that as an option for your child until everything else has failed. The VNS can cause some very nasty side effects. With your child not speaking yet it would only make matters worse because he would be unable to explain any discomfort or pain he is experiencing with the device.

 

[epileric]

There are also some alternative treatments you might like to try. I know some people have had success with the Neurofeedback. I"m sure your child might like that when he's a bit older as they are often similar to a video game.

http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

 

[Dutch mom]

Your son probably is a good candidate to try the ketogenic diet. I know many parents who have young kids, babies and toddlers on the diet or who have tried the diet. In general young kids have less problems to adjust to the food pattern.

In about 50% of the kids with refractory E. the ketogenic diet helps to establish significant (50-90%) seizure reduction and some of them even get seizure free, which is a far more better succes % compared to the chance med number 6 or 7 will help (5-10 %.)

You'll find several discussions about kids on the KD in the Nursery on CWE.

www.matthewsfriends.org is a very usefull resource. You can join the MF members forum, the parents there know all about the KD and allways give great support.

 

[greymatter]

Thank you for your reply. I favour the ketogenic diet over our other options. Do you think it makes sense to get rid of Keppra before starting the diet? My son seems to have slight side effects from the mix of 3 meds. Also it seems like Keppra was not helping anymore. He used to be on mono therapy with Keppra.
Your son has been on the diet for more than 5 years? Is he doing fine with it? Does he have side effects from the diet?

 

[Dutch mom]

My special needs son is on the classical ketogenic diet (ratio 4:1) for over 5,5 years now. He has Lennox Gastaut syndrome caused by braindamage (history of severe hypoglcaemia within 2 days after birth.) He developped seizures at age 1,5, at age 3 he suffered all types of seizures you can think of, all day and night long. His EEG was showing epileptic activity 90-99% of time. He has tried 10 different meds in several combinations and they all didn't help a bit. Only gave him all kinds of side effects.

He started on the diet at age 5 while he was using Topamax and clobazam. Ethymal was weaned off before he could start on the diet because of the calories in the sweetners.
I'm convinced it's best to wean off meds that don't work and/or interact with the diet negative before starting on the diet.

The diet was succesful within 1,5 week. It was amazing, his usual seizure pattern changed immediately and we saw a seizure reduction of 75%, even while he wasn't in adequate state of ketosis yet.

We have finetuned the diet in about six months, we had to reduce calories and weaned off topamax (because of high risk to kidney stones combined with the diet.) After 6 months on the diet he had a 90% seizure reduction and his EEG was disturbed for less than 30%, an amazing improvement considering he has LGS.

In the next year we weaned off clobazam (pffft, a difficult and long term traject with a lot of breakthrough seizures.) and for the next 3 years we had a boy with only incidental seizures, only breakthrough seizures in periods of illness or inadequate ketosis.

Since 2008 we've had more and more trouble maintaining ketosis, we had to adjust and adjust the diet, and at this moment he has (too) many seizures (absences, 'big stiff cramp' tonics and tc's.) As a side effect he has developped constipation. But he still is far better than he was before the diet so we still are busy finding the status quo again. Each time we try to wean of the diet a bit, seizures increase bad, showing the diet still is working for him.

I do fear the day the diet won't work anymore as my worst nightmare. He is resistant to all AEDs so we don't have any alternatives. He's not a candidate for surgery or VNS. One thing is for sure: he won't be seizure free, it's our task to do our best to reduce his seizures as much as possible and for now, the diet still is helping us to do so.

In my experience the diet is a way to help him myself, a succesfull way which feels GREAT, we (his dad and I) are the ones ajusting, finetuning, calculating, cooking, shopping for meals, ingredients and supplements. Only occasionally we consult his keto dietist. On meds it was the other way around: his neurologist was the one deciding, trying meds, calculating, ajusting and was pulling all strings.

The diet is not easy to manage. It's very a restrictive diet and it has to be calculated (individual diet and each meal or snack) very precise. The diet does take a lot of effort and commitment in the first 6 month for both kid and parents. But kids as well as parents do get used to it and in time you both won't know any better. When effective, the diet is worth all effort, that's for sure!

p.s I saw Matthews Friends is ajusting their website right now (forum is accesible.) I do hope it will be online soon, there's a lot of information there. Worthwhile to check out later.