epilepsy and autism

Thanks, Connie!

Tkasp, you're welcome! Thanks for your post.

Seizures and autism may go together, but in my family it's in two different children. My older daughter has autism. My younger daughter has a mitochondrial disease that manifests with seizures, which we have only partially controlled.

Things are a little complicated at my house sometimes.

My son has been diagnosed with Autism and Landau Kleffner Syndrome..I often wonder if he only has Autism with seizures and not the L.K.S. He was delayed in being diagnosed with Autism, that is why they are thinking L.K.S., but, he doesn't have night seizures, only day time ones and it seems like the meds are constantly cycling. He will go 5 weeks without one, then start right back up again. He is LOADED with meds right now and I hate it.
Anyone have any thoughts??
Amanda

Hi Boog's Mom.

I'm so sorry to hear about all the difficulties you and your son are going through right now.

Just to let you know, it definitely takes experts to distinguish Landau-Kleffner syndrome from autism. Shinnar et al. describe it in their 2001 Pediatric Neurology article, "Language Regression in Childhood,":

"The Landau-Kleffner syndrome or acquired epileptic aphasia is a childhood epilepsy syndrome in which children with previously acquired language undergo a regression of language in association with either clinical seizures or an epileptiform EEG or both."

Autism can also involve loss of language skills and/or seizures. What is most important as you work with the team evaluating your child is to ask questions. Sometimes professionals forget to slow down and share their reasoning with you - how did they come to a certain diagnosis? What was their own mental process, as they looked at your child's profile and behaviors? You should definitely feel empowered to ask them to slow down and explain what they saw and why it led them to make the diagnosis they did, as well as how they then went on to propose a certain treatment.

Another thing to keep in mind whenever you deal with medical or mental health professionals is what specific field they are in. Each discipline has its own "lens." That is, a neurologist may approach a problem from one angle (maybe focusing on the child's EEG), a psychiatrist from another (maybe focusing on the child's behavior). Autism is so complex, in all its aspects, it almost forces parents to be able to shift their own perspectives, trying to see what's going on from all of these angles at once, and to encourage the professionals working with them to do the same.

It seems as if it's been a while since anyone posted on this topic. I have only recently found this very promising site.

We discovered our son having a grand mal seizure upon waking when he was 17. He's 19 now and we have been seeing a biomed expert recommended by our internist. We have also seen an epileptologist and 2 nuerologists who seem to know very little about an autism/epilepsy connection. Since the first seizure he had a few more and then, after switching to a slightly different supplement protocol he began having a nocturnal seizure every 6 or 8 weeks. He has very low zinc and pyruvate levels and it seems to be tied in with glutamate (the first two seemed connected to having eaten food with msg).

He is mildly on the spectrum, maybe aspergers, very bright and the biomed protocol has done wonders for the spectrum issues but I'm fearing it's not enough for the seizures. How i wish there were a source of information that brought these two areas together in a more meaningful way. It's frustrating and the anxiety is overwhelming. We are thinking of putting him on lamictal but I'm very nervous about that. If autism is in part an inability to detox i cant see how putting such strong pharmaceuticals into his already taxed system could be a good thing.

I'd greatly appreciate any advice, encouragement or direction.

Worn out,
F.

Hi FrancineL, and welcome to IAN.

I'm so sorry to hear that your son and family must cope not just with an autism spectrum disorder, but with seizures as well.

It has long been known that epilepsy (which is defined as two unprovoked seizures) occurs with greater frequency in individuals on the autism spectrum than in the general population. Researchers continue to explore the connection. A new article, "The Role of Epilepsy and Epileptiform EEGs in Autism Spectrum Disorders," discusses this. The authors say it is long past time there was more treatment guidance, and propose a research agenda.

See: http://www.ncbi.nlm.nih.gov/pubmed/19218886?dopt=abstract

Of course, the frustrating thing is having to make decisions in the here and now before research has provided more guidance. (That is a frustration very familiar to any parent of a child on the autism spectrum, and is one reason IAN exists: to accelerate deperately needed research.)

The authors of the paper above said, with regard to treatment: "Treatment of children with autism and epilepsy is guided by the principles of treating childhood epilepsy. Anti-epileptic drugs (AEDs) are chosen based on seizure type and clinicians strive for maximum seizure control with minimum side effects. The practicalities of certain treatment choices are very important in ASD. Factors such as available formulations (liquid vs. tablets vs. capsules), dosing schedules, need for blood monitoring, and, most importantly, behavioral side effects must be considered. It is important to note that treating epilepsy does not usually have a major impact on the autism symptomatology. Some children may show improvements in cognition, communication, or behavior, but the autism diagnosis does not change."

The good news there is that they are not reporting that autism symptoms worsen as a result of treatments provided for epilepsy.

As for whether medications may help...it is possible that they might. Parents are often reluctant to give their child medications, understandably, and that seems even more so for anything that effects the brain, from anti-seizure meds to antidepressants. One thing it is important to remember is that you can always try a medication and then stop it if you observe any negative side-effects. It is also important to keep in mind that there is some trial and error involved to find what works best, as un-fun as that process may be. Ultimately, you will need to consult with your medical team to decide if, when, and what to try. If you do decide to try medication, what may be most important is having a team that you know will be available if you have any concerns at all during the process.

I had a few siezures as a child. My mother has diagnosed epilepsy, her sister (my maternal aunt) has medication controlled epilepsy, and I have a 1st cousin on my mother's side of the family who has had seizures as an adult. There is definately a trend toward epilepsy on my mother's side of the family.

I'd like to see the research eligibility on IAN extended to biological grandparents as well. Having biological footprint over more than one generation is important in the medical history questionaires used on IAN, to get a better overall perspective of the family medical history.

MarineMom02, we so agree! We have wanted to extend IAN Research to include another generation: grandparents. We are unfortunately not able to fund doing that in IAN Research at the moment because it would require a huge software overhaul. For now, we are working on a "Grandparents of Children with Autism Spectrum Disorders" survey that will appear on IAN Community, separate from IAN Research. This is a way we hope to give grandparents a voice even if we can't include them in IAN Research right now. I hope this will be ready by the summer of 2009. We have been working on it for over a year.

I understand the large software and server issues that adding another generation would create. Perhaps consider including a Family History questionaire that could be answered by the biological parent that looks at a variety of medical history of the family, not just psychological illnesses.

Most of us know our family history for genetically predisposed conditions so maybe just adding that as a survey, could assist until the funding is available to include them in the study.

A good idea to include it on the community site, but even better to be able to tie that history to children who we are completing research for onsite.

Hello,
I have just discovered IAN, what an incredible resource/initiative! My son is 14 and has autism and epilepsy. MRI scans of his brain have identified a damaged area(caused at birth due to asphyxia) which appears responsible for the complex partial seizures he experiences. He also has occasional generalised seizures and lots of partial seizures (aura's). He is currently on Tegretol (carbamazepine) and Topamax (topirimate) - not sure if these are the same drug names used in USA ?(We're in Australia). He's been on Tegretol for some years and has had no side affects. He commenced Topamax about 18 months ago and initially experienced very heightened anxiety and increased stuttering/word loss. This went on for about 5 months and I wanted to stop this AED but was encouraged to persist by my son's neurologist and paediatrician. The symptoms have now settled and the combination of the two drugs are providing fairly good seizure control. I have often wondered about the autism/epilepsy diagnosis and whether there was a link. I have also been interested to read other posts regarding nocturnal seizures. My son has always woken through the night, appearing confused and not responsive. We've never been quite sure if this is seizure activity or the after-effects of a dream (and so far have not pursued a sleeping EEG although this is still being considered.) My son also has an intellectual disability (in the moderate range) and mild cerebral palsy. Anyhow, I look forward to reading further posts on this wonderful site.

Hi Tranquility, and welcome to IAN.

So many families are coping with seizures in addition to autism spectrum disorders (ASDs). There is so much more we need to know about them and how they are related. One thing we hope to do at IAN is include seizures/epilepsy in an extensive "comorbidities" survey. This survey will ask about a long list of issues or conditions that frequently co-occur with ASD. Our intent is to help researchers gain insight into which conditions occur how often...and in what type of individuals. Are there variations based on type of ASD (autism, Asperger's), developmental history, or any other factors? Do certain co-occurring conditions seem more frequent in certain "subtypes" of ASD? What clues does that knoweledge provide about causation, or potential ideal treatments?

(We are in the process of applying for a grant to fund the comorbidities survey right now.)

My 17 month old grandaughter bangs her head on the mattress constantly as she sleeps. This can go on for hours, almost all night. Her pediatrician says, it is normal.??????

Hi mcuebas, and welcome to IAN.

I'm so sorry to hear about your family's worries about your granddaughter.

In the past, pediatricians have mostly advised parents not to worry, because all children do develop differently, and some are slower than others. However, they are now being urged to take a family's concerns more seriously - not to dismiss them, but to ask questions -- or so said the president-elect of the American Academy of Pediatrics (AAP) at the recent Autism Society of America (ASA) family conference.

Of course, I do not know the exact situation for your family, but I can say in general: It is OK to go back to the pediatrician and say again, "We feel something is not right here. How many other children do this?" It is also OK to say, "We really will not be at peace until our child is seen by a specialist, such as a developmental pediatrician." One thing it might help to do is be ready with answers to other questions the pediatrician might have. For example, if there are concerns about autism, you might look at the "first signs" listed on the website by the same name, and be ready to discuss these with the doctor. If the head banging is the only issue, the doctor might counsel one thing. If there are other signs that are also worrisome, he might counsel something else.

You can find the First Signs site here: http://www.firstsigns.org/

I hope very much that your granddaughter is just displaying a little quirkiness, and that further discussion or evaluation will show no need for concern. If there is any concern, however, please do know that there are many resources to help your family, and many other families walking the same road.