New and in need of answers

[Rehl]

Hi, My son is 17. When he was 14 he had a grand mal seizure in school. He has autism as well. When I look for answers from the professionals all I hear is "what did you expect, he has autism". I was told that I don't really won't to know why he had the seizure because it would be bad news. I do want to know why if that is possible which I know is not always the case. After three years being seizure free the doc wanted to tapper him off the meds. I did and he had a second seizure in the process. That was in June. Now back on the full dose of meds he is once again seizure free, for now. Is there anyone else here dealing with seizures and autism? My son had high blood sugar readings the first time and low the second. I was wondering if that means anything. Also he has low potassium...something there just prior to the first seizure its not a side effect from the meds. He takes Trileptal. Thanks for listening.
Tracy
NJ

[skillefer]

Hi Rehl! Welcome to CWE. We're a really friendly group, so feel free to ask questions, chime in , or vent in the padded room. Now, as for your two questions...First, yes, we do have some members who have children with autism who have seizures. I don't remember off the top of my head who they are, but I'm sure they'll be writing to you. As for the second question, yes...blood sugar levels can trigger seizures. I know this first hand. I have hypoglycemia as well as seizures. My blood level dropped down to 60 and caused me to have a seizure. That was how I found out that I was hypoglycemic. My mother's family also has a history of diabetes, so I try to be careful. If you think that hypglycemia might be triggering some of the seizures, try making sure that your son eats 6 times a day. Make sure that if he a carb (breads, pasta, potatoes, rice, anything with sugar in it) that he also has a serving of protein. When I say eat 6 times a day, I don't mean a whole dinner plate full. I'm talking about the amount that would fit on a dessert plate. Also, try getting rid of any processed foods (chips and snack foods in particular) in his diet, as well as weaning him off of any caffeine he might consume (coffee, tea, chocolate, cocoa, energy drinks...).

Just curious....you said your sons first seizure was when he was 14.....did the doctor's ever stop to consider that it was hormone induced? Some people see seizure activity at the onset of puberty and then outgrow them as they get older.

There is a higher incidence of seizures in people with Autism, but I think that you're right in wanting to know if anything else could have caused the seizures. Keep badgering his doctors. And if they won't talk to you, look for another neurologist. Just know that you might not find a reason. Some of us never know exactly why we have seizures. Whereas others can point specifically to high fevers while they were infants, head injuries, or other conditions. Also, try keeping a journal with everything he eats and drinks (when and how much), how much sleep he gets, any stress he might be under. Think back to the last seizures he had....what was he doing those days? Where did he have the seizures? Did he get enough sleep the night before? Looking back and seeing everything written out, you might notice a pattern. This will help you and the doctor figure out if there's anything in particular that triggers his seizures. Things such as flickering or strobe lights, hyperventilating, eating certain foods, household chemicals, etc... I hope this helped. Check out the Epilepsy 101 link in my signature. It gives some great basic information about seizures.

[Bernard]

Hi Tracy, welcome to the forum.

... I was told that I don't really won't to know why he had the seizure because it would be bad news.

What an ignorant, pompous and negligent (IMO) thing to say! Fortunately, you can learn a lot about seizure disorders on the internet. I hope you find some answers here at CWE.

[Rehl]

thank you so much for all the information. Im so concerned about this Im feeling the stress myself. One thing that I recall from the first seizure is that he had Benadryl while waiting for the school bus. I long thought that this may be why the seizure happened until the second one. The first one happened in school so I did not have much to go on. Oh, yes, he also had very little sleep the night before because he was starting high school the next day (thats when he had his seizure...first day of high school). The second one he just finished a breakfast of two waffles with syrup and a glass of OJ. I believe he slept fine that night but after that meal his blood sugar was 63 (test taken at hospital about 20 minutes after the seizure and 40 minutes after eating). Both seizures happened about two hours after waking up. I will start that journal. Sounds like good advice. My son has trouble communicating so that also has been difficult.

[RobinN]

Hi Rehl - Welcome
My daughter had her first seizure at the age of 14 as well. Though she does not have autism, she has a brother on the spectrum. Rebecca had speech issues as a child, and so for those reasons I have followed certain alternative therapies that are being considered in the autistic community as well.

Many are finding noticable improvement in autistic behavour and seizure control, just from making nutritional changes.
Stan Kurtz
Dana's View
I too have seen an improvement in health, and seizure control from making these changes, along with other alternative therapies. See Rebecca's story below.

Increasing meds isn't always the answer. It might buy you some time, but it was not the best choice for my daughter.

[RobinN]

Benedryl was a horrible "medication" for my asperger son. He was literally climbing the walls for hours.

[skillefer]

Oh boy! Definitely put your son on a low carb diet. Orange juice is loaded with sugar, as were the waffles and syrup. Your son might be hypoglycemic. It soundls like what happens is that he eats lots of starches or sugary things, his blood sugar skyrockets, and then in about 1-2 hours it crashes. Which triggers the seizure. If he has to have bready stuff, make sure it's whole grain. Whose grains take longer to digest. Try to avoid sugar, syrups, jelly, honey (yes, honey....it's higher in sugar than sugar) ketchup, and other stuff like that. See if that doesn't help.

[dfwtexas]

Welcome to the group!
I know one of my triggers is lack of sleep. The last 2 seizures I had were after a bad night and little sleep.