autism and epilepsy

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hoovfour

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My 19 year old son had autism and epilepsy. He has had epilepsy since he was 14. He is also non verbal which makes it even harder. He has been on trileptal for 5 years, he tolerates it well, but it has not completely stopped his seizures, we added vimpat for 2 years recently, again it didn't completely stop his seizures in fact it helped at first then as we increased it , it seemed to increase his seizures. He did tolerate it well. We took him off of Vimpat this spring and tried depakote. That was a disaster! he became so aggressive and irritated ( completely unlike his normal personality) took him off and then recently we tried topamax- same reaction as depakote- total personality change! this is getting so frustating- these side effects are as bad as a seizure! We are leaning towards lamictal- but want to give him a break for a month or two before we start something new. Its really hard because he is non verbal and cannot tell us exactly what he feels. Anyone out there have experience with autism and epilepsy meds? I feel they react differently
thanks
 
I have not had experience with the two. Your son can learn sign language and/or use the computer to express how he feels.

Did you try to be his teacher when he was a child? I taught mine after they came home from school. The schools have failed miserbably, in my opinion for even normal students.

Try to teach him how to use the keyboard to express how he feels. Can he hear? If he can, you are in a great position to be his teacher. Make it simple and fun. Use what he likes and teach him to spell those. Try, I love you, several times telling him each time what he is typing. Then show him each time what he typed. Be patient. Do it only a few times a day until he learns those three words and can type them on his own.

Welcome to CWE. This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.
 
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Sorry you have to watch your son go through that. :(. I hope you're able to find a medicine that controls his seizures and doesn't change his personality. ***hugs***

(Ruth, her son is 19. I know you're just trying to be helpful but I'm sure she knows all about sign language, using keyboards and other methods to help him be able to talk and better communicate. As a mom I bet she's tried everything. He's autistic. Autistic people are all different with different abilities.)
 
Hoovfour,

I don't have autism, but I do have experience with epilepsy & many AEDs. I've been on some of the meds you've listed. Topamax is also known as Dopemax, causing a person to be soooo spaced out and feeling like one is in a far out time/space. Trileptal caused me to have a low sodium level, so I had to be taken off.

And here is some info from an epileptologist @ NYU on the subject(s) of Epilepsy with Autism:
http://www.webmd.com/epilepsy/news/20110419/treatment-resistant-epilepsy-linked-autism
Treatment-Resistant Epilepsy Linked to Autism
Study Shows Epilepsy in People With Autism Is Often Hard to Treat

April 19, 2011 -- Epilepsy that is difficult to treat may be more common in those with autism than previously believed, new research suggests.

"In general, we knew prior to this study that people with autism have significantly elevated rates of epilepsy," says researcher Orrin Devinsky, MD, professor of neurology, neurosurgery, and psychiatry at the New York University School of Medicine. Devinsky is also director of the NYU Comprehensive Epilepsy Center.

In his new research, he found that epilepsy in autism is often treatment-resistant. ''Among those with autism who have epilepsy, in many cases it is difficult to control with medication,'' he says. In the small study, about 55% of those with sufficient data available had treatment-resistant epilepsy, he tells WebMD.

The research is published online in the journal Epilepsia.
Click to expand...
 
Hi hoofour, I am sure you have tried everything. I am sorry if I sounded like you didn't. :hugs:
 
hoovfour said:
My 19 year old son had autism and epilepsy. He has had epilepsy since he was 14. He is also non verbal which makes it even harder. He has been on trileptal for 5 years, he tolerates it well, but it has not completely stopped his seizures, we added vimpat for 2 years recently, again it didn't completely stop his seizures in fact it helped at first then as we increased it , it seemed to increase his seizures. He did tolerate it well. We took him off of Vimpat this spring and tried depakote. That was a disaster! he became so aggressive and irritated ( completely unlike his normal personality) took him off and then recently we tried topamax- same reaction as depakote- total personality change! this is getting so frustating- these side effects are as bad as a seizure! We are leaning towards lamictal- but want to give him a break for a month or two before we start something new. Its really hard because he is non verbal and cannot tell us exactly what he feels. Anyone out there have experience with autism and epilepsy meds? I feel they react differently
thanks
Click to expand...

Some disorders exist in which abnormal neurotransmitter levels can cause seizures and some of those same neurotransmitter deficits can cause autism. Has your son by chance had his neurotransmitter levels measured at any point? This generally needs to be done via spinal tap, which may not be something you see appropriate for your son at this point but I did want to make the suggestion. I am not autistic but in an effort to try to link seizures I have with other medical issues I have one of my specialists decided to measure several neurotransmitter levels and it turned out a few were below normal. Interestingly the ones that were low are some of the same ones that cause autism in some individuals, but in my case there is suspicion that they may be causing my other symptoms (including seizures).

I also wanted to mention this because of your comment that you are feeling like your son is more greatly influenced by medication side effects. Again just to use my case as an example: I was initially treated only with anti-seizure medications but it made some of the symptoms worse. When it was discovered that some neurotransmitter levels were too low it made sense because one of the AEDs I was on was further altering one of the already low neurotransmitter levels.
 
Hi hoovfour,

Here is a brief part of my story.

I had my first seizure when I was two weeks old. I was given all the Antiepileptic Drugs that were available at that time. None of them had any positive effects on all the different types of seizures that I was experiencing. Vitamin B6 was administered when I was five months old and my severe seizures ceased within days. My condition was given the name 'Pyridoxine Dependent Epilepsy'. This all happened in 1970-71. I experienced occasional 'breakthrough' seizures as was growing and gaining weight. I used vitamin B6 only, on a daily bases, until I was 19. I was still experiencing a visual aura (seeing colours) almost every day. At the age of 15 I was, again given antiepileptic drugs (a therapeutic drug trial). My B6 was reduced and the seizures returned. The side effects (many different ones) were so bad I was unable to continue with my education. Towards the end of the therapeutic drug trial my B6 was returned to the dosage of what it had been. The seizures ceased again but the aura remained. At the age of 19, after doing my own research into the eight B vitamins, with my specialists consent, I started taking a multi B complex tablet with my B6. Again, within days, the aura which I had experienced almost every day, ceased.

In 2005, at the age of 34, I received an official diagnoses of Dyslexia.

In 2011, at the age of 40, I was officially diagnosed with Asperger's Syndrome (an Autistic spectrum condition). Again, it was because of my own research into my rare condition that my assessment for Asperger's Syndrome took place.

It has recently been diagnosed, via genetic research which included my parents and myself, that I have a condition known as 'PNPO Deficiency'.

I continue to experience 'Absence' type seizures.

Here are a selection of URL's that you may find interesting regarding Autism and Epilepsy:

http://www.autism.org.uk/asperger

http://www.autism.org.uk/living-with-autism/strategies-and-approaches/biomedical-interventions/vitamin-b6.aspx

http://www.autism.com/ari/newsletter/203/page5.pdf

https://www.youtube.com/watch?v=GPhV9SyVmwA (taken from the British Dyslexia Association website: http://www.bdadyslexia.org.uk/about-dyslexia.html).

http://www.ncbi.nlm.nih.gov/gene/55163

In some older individuals, behavioral features typical of either obsessive-compulsive disorder or autistic spectrum disorder have been reported.
Click to expand...
Taken from the following URL:

http://memo.cgu.edu.tw/cgmj/3301/330101.pdf

Regards,

Andy
 
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thanks for the replies...I am calling his neuro this week to ask about vitamin B6. Right now we are thinking of either Lamictal or Zonegran, but I am really nervous to start either one at this point. He is really happy right now, but not seizure free. It's really hard to decide when to start a new med, because it is a big risk and you just don't know how he will react. Right now my family is so burned out from all of this, we want to wait a bit. The side effects from Topamax and Depakote were way worse than his seizures!
 
Hi
I'm also a mum to a nonverbal daughter aged 11 & I do understand the frustration in what you are going through... :)

All medicines have side effects I found sodium valproate, tegretol & keppra awful as they all had increases in agitation, keeping, weight & bowel issues.

Its going to be a process where you will need to flexible with the medications, try & trial it. Don't get put off by other peoples experiences, yes it's important to be informed of side effects, but what didn't work for others may just work for your Son.

We are currently using a vantage lite communication device that will hopefully encourage my Daughter to express "pain, happy, sad" & try to get her to point at whats bugging her...easy said than done .. As she's not easy to motivate.

She is currently on Trileptal, still has some seizures, but it's more controlled.

All the best.
 
Just another thing..
Is your Son on any anti anxiety meds? The reason I ask that is because the Tegretol & clonidine was making her go nuts mentally.

Check drug interactions.
 
my son has been on clonidine for many years to help with sleep. He mainly takes it in the pm. When he is just on trileptal with clonidine, I am not seeing problems. But maybe the clonidine and other meds might cause something..I will ask my doctor about that.
still thinking about zonegran or lamictal. My son normally has a very laid back and easy nature and it just seems these drugs change his personality in a bad way!
 
Not sure if you do this also, as I have the challenge of having a child not verbal, I keep a diary if any negatives in behaviour & what drug & dosagechanges. The Tegretol was fine until the dose was increased.

I have a rule that if the side effects outweigh the drug benefits its better to find something else.
 
thanks! I keep a very detailed diary! it helps so much! I totally agree with you about side effects. They aren't worth it if they are really bad. Worse than a seizure if you ask me
 
double dose~

hi hoovfour~
I take lamictal, an it works ok, my husband is Aspergerain (its in the realm of autism, his brother DOES have autism,) any how, I find that lamictal is good(still on it) an those you have tried, ive tried, hated them... blonde is right that's how we did it. I was diagnosed at 12.. do you use sign language it would be VERY helpful ~ V
 
Hi! I have a 22 year old daughter with autism and she is non-verbal as well. We have tried all these meds too. Right now, she is on trileptal and Topamax. We are in the process of adding Onfi so that I can get her off the Topamax. It gave her kidney stones :( I have always had trouble with medications making her aggressive. It is so hard and I know exactly how you feel! Lamictal made my daughter very aggressive as well as vimpat and keppra. Her seizures are not controlled and finding a balance between seizure control and behaviors has always been a challenge.
 
has anyone here tried sabril? i'm on it as of now an I just thought maybe some of you would be interested...
~V
 
I've been on

so many of the meds I can agree with most of your statements about the side effects. And they're a pain for someone like me who CAN say what they want, easily. I'm currently on Lamictal, Tegretol, Klonopin and Topomax.

I detest....Depakote and Keppra are the top 2. After that, well....there's a list.

However, I would say this:

Quite often I have found that the pharmacy is a much better source of information in regards to interactions between meds than the doctors are. Some doctors are totally oblivious (Yes, I know they shouldn't be....but they are...) I used the same pharmacy for 27 years (before I moved), and they told me more about my meds than my doctors did.

Other sources for help: www.drugs.com and www.rxlist.com Both sites will allow you to check it there is an interaction--and severity possibilities--for the meds that you're concerned about.
 
The bottom line is this: You have to be assertive & do the research.
Just as in any profession, there is good & rotten Docs, but when there is a nonverbal child with Autism to try & figure out what works for them its damn hard.

When you see your child in pain & uncomfortable it really breaks my heart & you need to be super organized & plan the next step.

Drs are legalized drug pushers & yes but you can get contradictory information from Pharmacy & Docs at times
 
@ Pbaker..
I have been informed that Kidney stones can be painful I definately would think you would of had an awful time with your daughter. :(

Every drug has their side effects & people with special needs kids need to be very vigilant about this. Sometimes there will not be easy answers & you have to move on what works.
 
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