Autism & Epilepsy & General Epilepsy Experiences

Blonde Angel

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If there is other parents out there who have the bonus of Epilepsy & Autism ..I would love to hear from you..

I am also keen to hear from those who have experienced side effects from Tegretol & Keppra..& how you dealt with the issues.:hugs:
I aim to break the ice with the combination of Epilepsy & Autism management.

History is full of stories od parents doing superhuman things when it's their flesh & blood.
When there's challenging stuff..I think we all underestimate ourselves in our ability to cope.

When it's your child you "just do it".

I do believe that there's variations in Autism in pacific challenges, but if you have a child that's verbal you should count your lucky stars as its half a battle over.

And if you've got autism, & a kid thats nonverbal well with the added stuff of epilepsy well it's a combination of challenges.

I decided early on that disability wouldn't run our life.
And is it hard?
The best resource is experience from others who have walked in your shoes.

Technology is leading the way for children with special needs & it's important to keep up to date what's available in the communication needs.

It's all changing so much very quickly & I urge you to never give up.
The love that kids with Autism feel in their families may take forms that our eyes are unable to see.
it's the little things that mean so much remember that.
There's always hope:
don't give up.
Symptoms & Treatment

We have a triple-whammy: Autism, Epilepsy & Down Syndrome
Jonathan is 11.

1. Seizures: tonic-clonic, tonic, and gelastic. Currently well-controlled. They've been pretty horrible in past.
2. Non-verbal: he was speaking in phrases and sentence up until age 5, then gradually lost most of his spoken language. He says maybe 1 to 5 words a day now.
3. Low cognitive level. His skills are basically those of a child between age 1 and 2.
4. Behaviors:
a. Aggression (slapping, scratching, pinching) - mostly when he's in pain, or when he's frustrated that he can't communicate his needs, and also when he gets overstimulated
b. Pica - eating non-food items. He goes through occasional phases where he gets really OC -- and can't walk through living room without picking lint up off the floor and popping in mouth
c. No sense of danger - will stand up on furniture (and often fall)
d. Throwing/pushing items off surfaces - like coffee or end tables
5. Easily agitated or overstimulated by stimuli like bright lights, loud or sudden noises, etc.
6. Inflammatory Bowel Disease - chronic diarrhea
7. Poor sleep

1. For epilepsy
a. Ketogenic diet (this helps with autism and IBD as well)
b. Zonegran - very low dose of 25 mg
c. Fish oil
d. Magnesium - also helps with autism, like agitation and sleep issues
e. Mozart - listens to classical music daily - helps reduce epileptic spikes and also calming and helpful for cognition

2. For autism
a. Guanfacine (Tenex) this is actually a blood pressure med, but it helps "take the edge off" of stimuli - so Jon can get through day without meltdowns
b. Probiotics - we started giving this for his IBD diarrhea; however, it had the happy effect of making him much calmer and happier, reducing aggression, and improving cognition.
c. Sensory diet (a lot of time at school and home tending to sensory needs) - swinging, going for walks, going for rides in stroller, trampoline, massage, joint compression, hugs, weighted blanket, compression vest, etc.
d. Behavior therapy - (home and school)
e. Music therapy
f. Occupational therapy and physical therapy
g. Speech therapy and use of PECs system to communicate choices
h. Because Jon tends to get out of bed at night and wander around getting into trouble, he has a special bed (Pedicraft) with mesh sides where he gets zipped in at night. All the surfaces are either padded or mesh, so safe if he has a seizure - he can't fall out, and can't hit head on hard surface
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If there is other parents out there who have the bonus of Epilepsy & Autism ..I would love to hear from you..

I am also keen to hear from those who have experienced side effects from Tegretol & Keppra..& how you dealt with the issues.:hugs:

I became highly toxic on tegretol; convulsed in my sleep with heart stoppage and then getting aspiration pneumonia --nearly died from this several times.
Eventually, I decided to make myself as safe as possible, and weaned off the tegretol. Choosing to live with uncontrolled seizures was safer for me personally, which I did for some years until learning to control the seizures without drugs.

At the time (1980s) no internet resources were available, but what I've learned since is there may be ways to reduce or minimize the many side effects of the drugs.

You might want to make an extesive list of side effects, nutrients depleted, effects on homocystine, metabolism, sodium levels, interactions, cognitive effects, kidney, liver, long term efffects, anything that comes to you.
With some drugs you can replace nutrients depleted with supplements, but this might not be ok with other drugs.

With the list, you can then begin looking for ways to minimize or eliminate the side effects.

For other issues recently, I contacted the manufacturer of my med and spoke to their medical officer (I think most drug companies have them). This person was helpful in looking at ways I could more safely take a med, like change the timing, or determining if it was safe for me to take the med at all.

Hope this is useful to you.
The idea of contacting the medical officer of a drug company about how to counteract side effects of one of their drugs with a good exchange resulting is a completely new and wonderful idea for me!And I will pass it along.
No experience w/ Tegretol. Keppra had horrible side effects, but since it didn't help the seizures, we just weaned off of it as quickly as possible. However, Jon's now on Zonegran, which does work, but comes with ghastly side effects. When he was on a higher dose, we just tried to deal with the side effects as best as possible, but once he gained good seizure control, we gradually reduced the dosage over the past 2 years. At the very low dose he's on now, the side effects are something we can live with.
I've never tried keppra but for me tegretol was a living hell. Nausea, headache, sleepiness, kind of like the worst hangover ever but it never goes away.
Past meds
Frisium, was good for a little while, but seizure increased..Sodium Valproate( zombied her), Tegretol, Keppra made her nuts not happy and destroyed quality of life. Went funny also with a med called Catapres , used for blood pressure control but can be used to help in " calming the behaviour", also made her nuts.
Now on Trileptal 600 mg twice daily , but am very wary with understanding side effects and what it means in the long term . Also, on Monofeme and Microlut for menstruation management.
On low FODMAP diet which follows dietary guidelines for irritable bowels.
On supervised nutrition prescription by a Dr who specialises in Nutrional medicine, which involve usage of hair analysis and oral chelation therapies.
Treatments involve the uses if the following:
Chlorella, coral calcium, sodium selenite, chromium colloid, taurine, fish oil capsules, Pedionine iodine drops, silica gel, lactobac, magnesium, Zymin, B12 and am now using coconut water to alleviate any possible migraines that she gets at times.
Aloe Vera juice and silver colloid can be used for IBS of diarrhoea.
Will consider coconut oil in the future, but I don't want to introduce anything too soon.
OT us useful for general and behavioural sensory plans, gross and fine motor, how play can be used for interaction. Play is child's work.
Speech is used for initiating augmenting the communication device, teaching stuff like power words, " eat, more, stop, finish etc" trying to teach 4 feelings for her future
1. Happy, 2. Sad, 3. Sick, and 4. Sore.
Importance of Floortime intensive interaction to engage and communicate, don't underestimate songs..use songs with action and a good tune.. Music and dance therapy is really being promoted as positives to engage and relax.
Social inclusion is important life skills and to teach as much independence so she will not be prompt dependant . Don't hide from the world, get them used to doing things in small doses like movies, bowling, eating out in casual places... Try to use other kids as role models they can do more than adults sometimes. Some schools get kids from mainstream to attend the special ed or schools and have an older buddy system set up weekly to promote appropriate rapport with their peers.
I employ a carer that's also a behaviour therapist, behaviour therapy aims to teach skills to be appropriate and learn more efficiently eg redirection is used to draw the child away before the situation escalates.
The main difficulties about Autism is that anxiety appears more often in people with ASD.
1. Difficulties with social understanding
2. Difficulties in communication
3. Difficulties in generalisation
4. Difficulties with the sensory environment.

I aim to provide structure, improve her communication skills, reduce demands when the going gets tough, provide breaks and try to encourage her to use her own coping skills like she goes retreating with her pile of pillows in a quite area.. She comes back to the rest of us when she's ready.. If shes tired you can forget about trying to engage with her..if I'm tired I would be cranky too. :)
Make it less confusing, confronting, make everyday interaction enjoyable.
But life is not always a routine, we've all had the unexpected happen, so I do try to do stuff differently to learn to adapt to change.
Autism or not, we all need some routine but we also need to adapt and cope with the unexpected... Same principle..
I initially came on this forum to try and get people's experiences in the feel of what it means to have seizure, to understand what my girl may be feeling.
But I also had this dark cloud wondering over side effects and drug interactions, reading some people's experiences just makes me want to learn , research and advocate more to make it work for an innocent 12 yr old girl that doesn't need Tegretol make her nuts, interfere with her periods and make her miserable.
If she's not happy I'm not happy.
Simple as that.
I thought what you said about social interaction compelling. Jon is now in a school that is exclusively special needs children, and so his interaction with non-disabled peers is limited. I think this has a negative impact on his spoken language, as well as knowing how to properly interact with other children. We were at the zoo on Friday, and he was having more fun watching (and interacting a little bit, although not exactly appropriately) the other children than he did watching the animals. The highlight of the evening was when we were at the sea lion display - observing from underwater, and the sea lion was having great fun entertaining the children - swimming back and forth as they ran to follow him, and then jumping flips out the the water - he was really showing off and all the kids were loving it, and Jon got to join in on the fun. A rare and happy moment.
My girl has been the the same school sice she was 3 yrs doing the early intervention stuff. It's a special school that has students with similar disability like my girl, and there's a varied spectrum of kids with Autism who some are verbal. The other students include kids with genetic disability and varied severity of those with Cerebral Palsy. Some are in wheel. chairs.
Is a smallish school that have some very dedicated staff and some have family with disability. Those staff who live with disability do have that spark and insight that the rest do have empathy but they" don't walk in the shoes" day in day out. Not critisizing but it's like if a teacher has no kids, they really won't get the understanding of in the in/ out of caring nurturing kids 24/7. Hoever I've met some amazing teachers.
Even in mainstream education wher my boys are ( I choose to put them in separate classes to learn independently ) there's kids with some special needs like Aspergers , ADD, mild Downs Syndrome etc and I have to say my boys are very tolerant with these they understand the life with their big sister.
In saying all that , yes I get that being in a special school has its limitations in socialising with neurotypical kids..
What is the importance of play Karen??
Do kids just play for the fun of it? There's more to it.. It's vital for basic human physical, emotional, mental, social and spiritual development. Play is child's work we've all rote learned nursery rhymes and it's actually when you think closely... It's the beginnings of our language development. All that nursery rhymes have repetition in their songs to learn.

Yeah, the kids with profound disabilities are the ones most likely to be deprived of opportunities to play or engage in leisure pursuits.
My girls school is fortunate to be located right next door to a primary mainstream school, there's been various programs to get some of these kids to the special school and vice versa to promote interactions.. Some small steps for inclusion.
My child needs to see interactions by others in play, turn taking, the spontaneous stuff, not always structure and planned.
I'm very big on fitness stuff, she attends a weekly hydrotherapy pool swimming lesson, does tons of trike riding at school, does once weekly small group gym with a mix of special needs and neurotypical kids.. Needs to be smallish groups for her to cope. Power walking the park and takes the carers dogs for a walk with her brothers and 1 carer.
The question evey parent needs to think with a child that has severe disability is what is the child going to be doing when they leave school? If my girl still has epilepsy, it's going to limit her work stuff options.. So life skills, community inclusion, leisure, play and recreation activities needs to top that last of priorities.
The main disadvantages of special schools is the fact that yes, my girl is learning some crappy negative behaviours that she obviously see some students do. But like anything I can't put her in a plastic bubble. Like kids they learn the good and bad, I'm sure if she was verbal she would pick up some bad words, that some kids who are verbal will parrot...
But she's happy there, she's not a morning person.. She would get lost in mainstream.
We were fortunate enough to have Jon in mainstream preschool and kindergarten. He was higher functioning then (verbal and appropriate interactions with peers), and the seizures and autism hadn't really taken over. He learned a lot during that time, developmentally. He hasn't really learned much at school since being put into a special needs school -- except for bad habits, like temper tantrums. The only skills he's learned is the PECs system and some self-help and developmental skills that I've taught him at home. But, as you said, he'd get lost in mainstream now -- the cognitive gap between him and his peers is huge. His school is good about tending to his sensory needs. Basically, we just try to get through the day.
Somehow, there's got to be a place for these kids and parents/ carers have to sometimes make tough decisions to try and go in the right direction.
Life has to go on.
Autism and GI Dsorders

The link between GI disorders and seizures is now pretty strong as well.

Autism and GI Disorders

"Understandably, the pain and discomfort caused by GI symptoms can worsen behavior and even trigger regression in persons with autism spectrum disorder (ASD). This may be particularly true of nonverbal persons who have difficulty expressing their distress."

The full article is on the Autism Speaks page:
The link between GI disorders and seizures is now pretty strong as well.

Autism and GI Disorders

"Understandably, the pain and discomfort caused by GI symptoms can worsen behavior and even trigger regression in persons with autism spectrum disorder (ASD). This may be particularly true of nonverbal persons who have difficulty expressing their distress."

The full article is on the Autism Speaks page:
My GS has such horrible GI problems. It is painful to watch. He does have a GI doctor that specializes in kids with special needs. Thankfully at least for now, no seizures.
My GS has such horrible GI problems. It is painful to watch. He does have a GI doctor that specializes in kids with special needs. Thankfully at least for now, no seizures.

You and anyone who is not familiar with it may want to check out the Gottschall Autism Center

You may find a lot of information there as well as treatment options.
what we do for GI issues (mostly diarrhea)

Jon has chronic Inflammatory Bowel Disease. Some of his drugs (like the Zonegran he's on now) make it worse. Bad flare-ups of his IBD seem to be correlated with seizures coming out of remission or getting worse.

We've sort of figured out a few things that seem to work quite well for keeping his gut happy.
1) Ketogenic diet - he went on this because of his seizures, but his IBD was much improved in his first year - perhaps because of the elimination of sugar and grains.
2) In addition to the Keto diet, we incorporated some of the principles of the Specific Carb diet and the Anti-inflammation diet. We took out most dairy (except for cheddar cheese) and use easier digested fats like olive oil, MCT oil, flaxseed meal, olives, etc. We try to use anti-inflammatory veggies like carrots and onion and garlic as much as possible. At one point he fasted for 1 day (to let his gut rest) - and then he ate just chicken and carrots and olive oil for several days. We then gradually added in other foods, one at a time, to see how he reacted to them. If he got diarrhea (or hives or pimples around his mouth) they were taken out of his diet (we usually will trial again in about 6 months).
3) Supplements that help IBD: zinc (being careful not to give too much, as can lead to copper depletion and neurological symptoms), probiotics, pancreatic enzymes
4) When he has a flare-up I simmer chicken bones/joints for a couple hours to make nice bone broth that is soothing to the gut
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What ever the GI symptoms whether it's constipation or diarrhoea, it's both very uncomfortable for those who have these issues.
My girl has never been constipated but I have had feed back from other parents who do go through the dramas of having a child that's fussy with foods even colour, textures due to their sensory issues .
Constipation has its own dramas, with pain, discomfort in abdominal area and I've seen a 6 yr old boy on the spectrum that has a very distended hard tummy who is clearly in pain.

It's not easy but one has to try to fix the gut issues.
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I'm becoming increasingly convinced that gut issues might be driving a lot of the other symptoms in autism. For instance, when Jon went back on probiotics this summer (Kid's Culturelle powder - Lactobacillus G), not only did it clear up his diarrhea, but within 2 weeks, we saw an amazing change in his demeanor. He was far less agitated, much calmer, far less repetitive actions. I'd had a meeting with his teacher in May (when he was having the diarrhea but before probiotics), and she said it was like he was "disappearing into autism world" -- he was so fixated on stimming that she couldn't get him to do do anything or look at anything -- no matter what she did -- brushing protocol, lotion rubs, joint compressions, long walks, his tumbleform chair, etc. -- all the tricks she had up her sleeve to bring Jon into the real world weren't working. After a couple weeks on probiotics, she started sending home enthusiastic notes, "Jon had the best day ever!" She said he was focused and doing tasks that he'd never done before.
Karen, I cannot remember if I have mentioned that I was diagnosed with pernicious anemia which was caused by the zonisamide? I am taking massive B12 and am still slowly weaning off the zonisamide [under a doctor's care]. VERY cautious. The doctor brought up the fact that the ketogenic diet is counter indicated by the zonisamide instructions.I had ignored that and was on a high fat diet in the last six months I was on the Zonisamide. Now, on eliminating most fat, my gut symptoms, along with frequent urination, has calmed down.
I am mentioning this as one more piece of information for your extaordinarily complicated understanding of Jon's situation. I feel so sure that you are right about the importance of the gut health to autism symptoms as well as to seizures.
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