Please read, I think my 10 yo son might be having seizures

[rachael18xoxo]

Hi everyone,
my daughter found this site looking for some info on seizures. I noticed while looking around that you are all so genuinely caring and supportive, not to mention very knowledgeable. So I thought I would ask for some advice about my son.
He is 10 yo and has Autism (as well as my youngest son, age 5) I have heard over the years and read many studies that epilepsy is very common in Autistic children, one in four will develop epilepsy in some form. I just have a gut feeling he may be having seizures.
Two years ago he had something wierd happen. He was outside riding his bike in our driveway (we live in the country, so just a hard packed dirt road) He came in crying because he said he woke up on the ground, but he didnt fall off of his bike. He had several cuts and scrapes and was scared because he didnt know what happened.
We took him to his pediatrician, who we love, and he sent him in for an EEG a few days later. Normal EEG, and we wrote it off as strange but something we would keep an eye on. He seemed fine for the past two years, nothing I can think of that would really alarm me as far as possible seizures. His behaviour has become worse over the past two years, more self injury and meltdowns. But we are thinking we are seeing an increase because he is getting older and a little more moody. Ahh teens. Iv been through three girls, working on my 4th one.
For the past month my son has been suddenly saying he doesnt feel good and goes and lays on the couch. He says he feels like his body is going in circles, like your body would do if you were using a hula hoop. He said it makes him feel really dizzy and sick. He lies on the couch, and he can hold a conversation with us, but he has a far away look in his eyes. Like he does when he is really sleepy. This happens about 3 times a day. There is no set time that it happens, and we cant see any patterns. We do not notice any jerkiing of arms or legs, no odd movements, no odd eye movements either.
Could this be seizures? If so, what type? Where do I start to have him tested and what types of tests should I ask for? Iv heard EEG's arent necessarily foolproof in detecting seizures, maybe the one he had a few years ago missed something?
Anyway, thanks so much for helping us, I look forward to your opinions!

[Nakamova]

Hi rachael, welcome!

About 1 in 4 kids with autism develop seizure disorders, often right around the age of your son, so you're right to be concerned. And you're right that the more subtle seizure disorders don't always show up on an EEG. The best thing to do is to write down any unusual behaviors and ask for a referral to a pediatric neurologist. Some of the potential signs of a seizure disorder include ones you mention: Behavior problems such as aggression, self-injury, and tantrums. Others include stalling academically or falling behind behaviorally or cognitively.

The attacks of dizziness with a spinning sensation and nausea could be seizure-related, but they can also be caused by diseases of the inner ear, so you might want to rule those out first.

"Gut feelings'" often turn out to be correct. You're his mom, you're used to being alert to subtle changes, so don't feel shy about talking to his doctors and pushing for answers.

Best,
Nakamova

[rachael18xoxo]

You are so knowledgeable and thanks so much for your reply. I am relieved to hear someone tell me Im not crazy. Thats what the doctors told me for two years when I brought up concerns with his development and they said "oh hes a boy, they act differently than your girls probably did growing up." I kept at it and finally, at age 5, he was officially diagnosed. All that to say I will pursue this and I feel validated that there might be a problem. I already have a pen and paper ready to record these episodes he is having. Thanks so much!

[Nakamova]

Good luck, and let us know how things turn out!

[Bernard]

... Could this be seizures? If so, what type? Where do I start to have him tested and what types of tests should I ask for? Iv heard EEG's arent necessarily foolproof in detecting seizures, maybe the one he had a few years ago missed something? ...

1. Possibly
2. Complex Partial or Tonic Clonic both involve loss of (or impaired) consciousness which is prevalent in missing time episodes
3. EEG is the most common initial test to see if there is abnormal activity happening. CT scan / MRI can look for lesions, tumors, etc., but don't catch epileptic activity in otherwise normal brains
4. video EEG or 24 hour EEG (ambulatory EEG) might give a better picture as they monitor over a longer period of time

More info:

Epilepsy 101 - Part FAQ, Part tips and advice

[RobinN]

rachael - welcome to CWE

Have you come across in your research any info on the connection between the health of the gut and autism?
Do you also notice when he is ill, that his symptoms or behavior actually improves?

[rachael18xoxo]

Rachael,
my daughters name is spelled the same as yours Yes I have looked into the gluten/casein free diets for my autistic boys. We did try it for a month and we didnt see any differences. My youngest sons lactose problem did go away though due to no milk.
I have heard that for many autistic kids their behaviors improve when they are sick. My boys are almost never sick but when they are I see more meltdowns due to them not feeling good.
My son just had another episode 30 min ago. I kept asking him what he was feeling and he always answered "I dont know" over and over again. His eyes really scare me, its like he isnt there and he keeps his eyes half closed for the 10 min or so that he is lying down. I watched him closely and didnt see any odd eye or limb movements at all. Dr. appt next week.