Alternative treatments for a non-verbal kid

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I apologize in advance if I'm unclear, but I'm having trouble figuring out exactly how to put this thought in words.

Our son is 14, severely autistic, non-verbal, incontinent, and recently diagnosed (December 2012) with epilepsy. He's currently on 2250 mg of keppra (750 mg in the morning, afternoon and at bedtime), and is still having tonic-clonics. He's had 6 so far, and on average, they're occurring once every 30 days (though the last two have been 20 and 27 days apart respectively). I believe he's also having absence or complex-partial seizures, but our neuro has been labelling these events as autism-related sensory-avoidance techniques, partially because of his experiece with treating other kids on the autism spectrum, and partially due to a 48-hour EEG that he reported as "normal" (though my research tends to indicate that this is practically meaningless).

I've read a lot about the promise of the ketogenic diet as well as neurofeedback, but just don't see how either of these plans would work with a child like mine. Are we limited to medication and/or surgical treatments?

My concerns with the diet are entirely related to his sensory issues. I simply don't think he'd eat the types of foods required on this diet.

And regarding neurofeedback, I don't think he has the intellectual capacity to perform whatever tasks are associated with it.

So, are we stuck with the medication game? Because quite frankly, I'm getting tired of simply increasing and/or switching medications and waiting 30-ish days to see if they've helped. It doesn't help that we have to evaluate his behavior to determine whether the medications are having undesireable side effects. If he could just TELL us what he's feelling, this would be at least a little bit easier.

So, what say ye?
 

Nakamova

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It might still be worth looking into neurofeedback. A practitioner may be able to design a protocol that works with your child. And the LENS Neurofeedback system is a passive one, with sessions lasting about 5 minutes.

http://www.trainyourbraincenter.com/1/306/lens_system.asp
http://www.tandfonline.com/doi/abs/10.1300/J184v06n04_05#.UZOgjhwxUcM
http://www.centerforbrain.com/condi...ism-case-examples/family-finds-a-normal-life/
This is good to know. I'll look into the LENS system. Thanks!

EDIT: I'm looking at the third link, because it specifically mentions autism spectrum disorders. I couldn't read past the part where the young man developed speech and language after ABA. Didn't work for us, and now we're so deeply in debt that we can't see the light at the end of the tunnel. Everything related to autism is SO expensive and often not covered by insurance.
 
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Just read this: "The first order of business was to do a qEEG (quantitative EEG) on Kavan, which mapped the electrical activity in Kavan’s brain and indicated where the brain was working less efficiently or dysfunctionally."

How is a qEEG different from the EEGs he's already done?

Our neuro indicated that there were no abnormalities in the EEG. I wonder how that applies to the type of mapping they need to perform before designing a neurofeedback program?
 

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It's worth discussing with the LENS practitioner. I think with the qEEG they look for areas of overactivity and underactivity -- not necessarily definitive seizure activity -- so it might still be of use.
 
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It's worth discussing with the LENS practitioner. I think with the qEEG they look for areas of overactivity and underactivity -- not necessarily definitive seizure activity -- so it might still be of use.
Fortunately, the first link points to the website of a provider that's only about 20 minutes from where I live! I'm asking friends in the autism community if they know anything about him.
 

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I hope they can help. Keep us posted!
 
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I hope they can help. Keep us posted!
Ask, and ye shall receive ;)

I've just gotten back to my office after an appointment with the epileptologist. He believes Jake is having complex partials based on what I described to him For example: last night, while taking a bath, he raised his arms such that his hands were about level with his shoulders, tilted his head back, closed his eyes, and became unresponsive for about 30-45 seconds. This happens anywhere from 1-5 times per day, 4-5 days per week, without any apparent trigger.

We spoke briefly about the ketogenic diet, and while he's supportive of it in general, he thinks it'll be too difficult to maintain in our case (and I agree). Our doc has seen some of his patients improve significantly on a modified Atkins plan, and I think that would be significantly easier to maintain.

We didn't talk about neurofeedback, but I've pretty much ruled that out in our case. The clinic in Berkley, Michigan was heavy on anecdotes and light on scientific evidence on the effectiveness of LENS. I found lots of good material on regular neurofeedback, but that's not appropriate for Jake as a result of his serious receptive/expressive language issues.

Doc mentioned VNS, but I'm not considering it.

So, we're going forward with 2000 mg of keppra split into 3 doses (750/500/750), and ramping up to 900 mg of trileptal over 3 weeks (300 at night, then 300 morning and night, then 300 morning, afternoon and night).

We also considered vimpat and lamictal, but I want to do more research on both of those first.

EDIT: we're also going to start B-6 supplementation.
 
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Andrew

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Kamiyama et al: long-term verbal IQ improvements seen with B6 In related research, M. Kamiyama and colleagues followed up on a previous study showing that vitamin B6 improved verbal IQ (VIQ) scores in children with pervasive developmental disorders and hypersensitivity to sound.
http://www.autism.com/ari/newsletter/203/page5.pdf

Also See:​




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

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rakowskidp,

Thanks for the update. And best of luck with the Modified Atkins and keppra/trileptal combo. I hope with one or both you see significant improvements in your son's seizure control. I know quite a few members are curious about how effective the Modified Atkins can be, so feel free to post in the Diets subforum with any progress reports or concerns.
 
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rakowskidp,

Thanks for the update. And best of luck with the Modified Atkins and keppra/trileptal combo. I hope with one or both you see significant improvements in your son's seizure control. I know quite a few members are curious about how effective the Modified Atkins can be, so feel free to post in the Diets subforum with any progress reports or concerns.
We're off trileptal now. He's been getting aggressive with staff at school, and is on the verge of being kicked off the school bus because he won't stay in his seat while the bus is in motion. I'm completely unconvinced that this aggressive streak has anything to do with trileptal, but the doc wants to remain on the safe side. So we're incrementally increasing keppra until we reach a daily dose of 3000 mg.

I'm not sure the modified Atkins will work for him, either. It seems significantly easier than ketogenic, but still, there are too many restrictions for a kid with his sensory issues. Like the ketogenic, it's built around too many foods he simply will not eat due to sensory issues. So, for now, it's medication and... medication.

We're incredibly frustrated right now. Nothing seems to be giong very well. He seems always on the verge of seizures - like he's always experiencing an aura (a partial seizure, right?) or always in prodrome. He's pushing us to the very limits of patience at home, and his medical team to the limits of their knowledge as well. I can't imagine what it's like being locked up in his head with no way to express his thoughts, and this apparently constant sensation of near-seizing knocking around inside his skull.

Not to mention, this is causing behavioral changes in his 3 siblings, notably his youngest brother, who has grown aggressive when not getting his way (presumably in imitation of his brother's aggression).

There must be a light at the end of this tunnel. Right now, I just can't see it.
 

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So they don't think the Keppra is responsible for the aggression? Given its reputation, that would seem to be a reasonable guess.
 
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So they don't think the Keppra is responsible for the aggression? Given its reputation, that would seem to be a reasonable guess.
I thought so, too, but he's been on the same dose of keppra for a few weeks and the raging is a new thing.
 

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Side effects can come and go. Since it's only been a few weeks on the keppra, I don't think you can rule it out entirely. But you never know with these meds; it's all trial-and-error, with an awful lot of error.
 

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Hi rakowskidp,

Our 9 year old son is on the Ketogenic diet -- has been for about 2 1/2 years now - along with Zonegran.

He is also non-verbal (as a result of the seizures -- he was verbal until age 5), still not completely potty trained, and has autistic traits (he also has Down Syndrome). His seizures started at age 1 with tonic-clonics, about a month apart. Most of his EEGs (he's had at least a dozen) have been clear, but 2 EEGs have shown temporal lobe spikes (mostly right side). Seizures were eventually controlled with Topomax for several years, and then he relapsed, and things got pretty bad until he went on the Ketogenic diet. After 6 weeks, he became seizure free, and stayed seizure free for 1 year. Then he had a bad illness and had a seizure relapse, and it took awhile to get that turned around, but he's now been seizure free again for 5 months. And, he's starting to talk again!!

Meds he's been on that didn't work: Keppra (also caused depression and rage and seizures got worse), Trileptal (horrible -- super hyperactive, maniac behavior, aggressive, and didn't stop seizures), Lamictal (allergic), Depakote (damaged his liver), Clonazapam (nice side effect on autism, but didn't work on seizures, plus highly addicting), Diazepam, and Frezium.

So, none of these meds worked but the Ketogenic diet did. And also Zonegran.

The Ketogenic diet has lots of different options for fat sources that should fit in with your sons eating preferences and sensory motor issues. What types of food textures, tastes does he not like, and what kinds of foods does he like? With that info, I can point you in the direction of some meal plans that might work for your son.

For instance, my son can't really handle raw veggies -- he has trouble chewing them properly, and he also has Inflamatory Bowel issues. He also has some fine motor issues, so it's hard for him to eat soups and foods that are a little runny. But we've been able to work out the diet for him with foods that he likes and that he can eat.

You might also want to go check out these websites -- they're both for parents of kids and teens on the diets (and also some adults on the MAD), and they have medical research articles, lots of recipes and also both have a fantastic forum. The Charlie Foundation forum has a great lady named Beth, who's a nutritionist and has worked with the Keto diet for over a decade -- she can answer just about any question you might have, as can many of the parents.
http://www.charliefoundation.org/
http://www.matthewsfriends.org/
 
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The Ketogenic diet has lots of different options for fat sources that should fit in with your sons eating preferences and sensory motor issues. What types of food textures, tastes does he not like, and what kinds of foods does he like? With that info, I can point you in the direction of some meal plans that might work for your son.
Karen,

Thanks for sharing all of those resources, and your personal experience as well!

Jacob won't eat anything that's soft or creamy in texture (mayo, eggs, mashed potatoes, pudding, yogurt, etc.), and eats practically no vegetables and only a few fruits. He absolutely hates milk and most other dairy products, except for a little bit of cheese on a sandwich.

He eats meat (hamburger and chicken mainly), fruits (particularly apples, oranges, grapes and berries, but definitely not bananas due to texture issues), bread, pasta with sauce, a few cereals, and potatoes (as long as they're not mashed!).
 
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I should also note that he's been mostly seizure-free since May 11, thank God! There have been a few occasions on which I've observed short complex-partials and absence seizures, but not to the extent we saw in early to mid May. But I'm concerned because he's already on 3000 mg of keppra daily (split into morning, afternoon and evening doses) and we had lots of problems with both trileptal and topamax (both caused hyper-aggression and crying spells, if I remember correctly -for some reason, my notebook doesn't have the details about what happened on topamax). He tolerates keppra rather well - no kepprage, for example - but he can't go any higher, if I understand correctly.
 

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Well, if he's tolerating Keppra, and it seems to be helping the seizures, that's great. I believe that with Keppra there's actually no upper limit -- the only upper limits are determined by whether the med starts causing negative side effects (generally on personality and mood). Unlike most other seizure meds that can cause serious damage to liver, kidneys, etc., Keppra is pretty "safe." That's one of the reasons doctors like to use it.

So...no mushy foods...that would make it difficult but not impossible to sneak in fat with the Ketogenic diet...dairy isn't used much on the diet except you can use cream, butter and cheese, but milk is too high in carbs anyway...I could see a meal with something like Jimmy Dean sausage patties and fruit (most berries and star fruit are low carb), and we'd need to sneak in some fat somewhere. Would he like something like a root beer float? You could use sugar-free root beer with a dollop of cream (but maybe he wouldn't like the cream). Does no mushy foods include ice cream? That's one of the things we do -- make our own ice cream from straight cream -- even sneak in a little oil or butter -- mix it all up, add a little sweetener and flavoring and stick in the freezer for 15 minutes. Jon gets that for "dessert."

The Charlie Foundation has lots of recipes for things like breads and muffins that are made with coconut flour or flaxseed meal or flour made from ground nuts (almonds, macademias, etc.). You can sneak a lot of fat into a muffin -- the "flour" itself is high fat, and then you can use oil in the mix, and then once it's baked, put a pat of butter on. I haven't tried these myself, because I'm not much of a baker, but that's what a lot of parents use as a sort of meal base -- they make big batches, then freeze them. That might work for your guy, if he likes breads and rolls and muffin kind of things. You might want to go over to their site and scroll through the recipes.
 
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Hello Karen!

I apologize for not responding sooner. We have been exceptionally busy lately. At the moment, I am at the hospital with Jake. He had a seizure after dinner and this was very different from previous ones. This time, he just dropped and hit his head on the kitchen counter on the way down. Last Sunday, he had a complex partial and I was able to capture it on video, and last Monday, he had a tonic-clonic at school.

So we are naturally worried about our son and don't know where we will go from here. Needless to say, these incidents have increased my desire to consider dietary interventions.

Thanks for your interest and please pray for us!
 

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Oh dear, so sorry for Jake. Hope he's doing OK, and you can find the best path of treatment. Praying!!
 
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