Autism and epilepsy/seizure disorder

[rakowskidp]

Thanks for sharing such extensive background on your son's condition. I find these explanations to be incredibly helpful, as they add personal experience to the more clinical research I've been doing.

Now...to your child:

1) I agree that magnesium may be helpful -- we started Jon on a nighttime dose last October, which immediately gave him better sleep, as well as better seizure control.

Is there a particular form that's more helpful or easily tolerated than any other?

2) A "clean" EEG doesn't mean that the unresponsive episodes you are seeing are not absence seizures, unless he happened to have one while hooked up to the EEG. In fact, they really DO sound like absence seizures to me.

I'm inclined to agree after what happened on Saturday. During lunch, with food in his mouth, he froze. His elbows were on the table, hands pointed upward, eyes as wide as saucers. He was unresponsive for nearly a minute. This was much clearer than the behavior I described earlier in this thread. Unfortunately, something went wrong with my wife's iPhone and we were unable to capture any video. I really, really wanted to show it to the doctor. We'll have to be more vigilant next time.

3) I don't think the head jerking behavior is seizures -- I think it's probably autistic -- but in our case, it developed when Jon's seizures were really frequent -- so there must be a relationship.

I agree. At the same time, it looks like he's unable to control it at all, so I guess I'd describe it as a tic rather than a self-stim.

4) I recommend putting a baby monitor in your child's room so you monitor night-time seizures (if he makes auditory sounds during a seizure). This is what we did, until Jon's seizures got really bad, then one of us slept in his room for a few months (most of his seizures were nocturnal). We've now rearranged the house a little, and moved our bed and Jon's bed into one big room, so he sleeps in the room with us for now. If he continues seizure free, he'll get booted back to his own room with the baby monitor.

I will add a baby monitor to his room. I'll just have to find a way to keep him and his siblings from playing with it Fortunately, his seizures have all occurred shortly before bedtime or early in the afternoon, so we're normally awake and with him at the time. But it couldn't hurt to monitor him while sleeping.

Thanks, donnajane, for sharing so much about your son's experiences and the medical care he's received. Your explanations have also been quite helpful in providing a few points of comparison.

 

[Andrew]

Hi all,

I'd just like to share these links regarding B6, Mg and Autism.

http://legacy.autism.com/treatable/supplement/b6studies.htm

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

http://legacy.autism.com/ari/editorials/ed_vitb6.htm

I've been using vitamin B6 for over 42 years to control my rare type of seizures (many different types including Status Epilepticus).

http://www.coping-with-epilepsy.com/forums/f23/40-years-vitamin-b6-11674/

In 2005 Dyslexia was diagnosed and in 2011 I was diagnosed with Asperger's Syndrome.

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

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

Regards

Andrew

 

[KarenB]

We use chelated Magnesium, which is what our pharmacist recommended. I think Magnesium is usually well tolerated, as long as you stay within proper limits. You'll want to ask your doctor for an appropriate dose, or, you can research online the recommended dosage and upper tolerable limits for a your child's age and weight.

When your child has an episode, if you're unable to capture it on the phone, then write down exactly what happened (like you just did above), and take this when you visit the doc next. I've found that doctors are better readers than listeners. Whenever we have a visit with the neurologist, I type up everything -- recent symptoms, questions, etc. Have to keep it fairly brief -- 1 to 2 pages.

I think our Jon's head jerking thing can be controlled -- I've been trying to train him out of doing it, and if I take my finger and tap on the back of his head and say, "No! Don't do that!" - I can usually get him to stop (it might take a couple times of doing it). Right now he's sitting across the room from me and doing it, and I'm just verbally reprimanding him, and he's listening, and still doing it, but not as violently.

Ha ha!! Funny about keeping the baby monitor from getting played with. I remember putting one in my Mom's room when she was dying from cancer, so I could hear her if she was in pain during the night (needing more morphine), but I didn't want her to know it was there, because she never wanted to put anyone to any trouble with getting up at night. So...we just put it on the bookcase on the other side of her room, and she never noticed it was there, but it still picked up every little cough or rustle or little groan she made.

 

[donnajane]

Hi Andrew,
You said you had a rare type of seziures. Would you mind me asking what they are. My little man 27months old has got all of his specilaists wondering what is going on. They know something is not right as they have seen the video's, looked at the photo's, read our seziue journal and his journal from Child Care but so far can't work it out. So as soon as i see the term rare I always enquire as even the Dr's say one day we/they will hopefully work this out and the information may come from an unexpected place........
Thanks
Donna

 

[Andrew]

Hi Donna,

On my previous post I have included a link to my story entitled '40 years on vitamin b6'.

Hope this helps,

Regards,

Andrew

 

[rakowskidp]

When your child has an episode, if you're unable to capture it on the phone, then write down exactly what happened (like you just did above), and take this when you visit the doc next. I've found that doctors are better readers than listeners. Whenever we have a visit with the neurologist, I type up everything -- recent symptoms, questions, etc. Have to keep it fairly brief -- 1 to 2 pages.

I've been doing exactly that. We've been tracking his episodes in Evernote, which syncs to both of our phones and laptops. But we have to discipline ourselves to write descriptions immediately following his seizures or we forget vital details.

 

[donnajane]

Thank you so much for the link. One thing which I read in your links was low body temperature. That is one thing which has been confusing his specialists as my little mans body temp is often 35.2, sometimes lower, sometimes almost normal but more often than not low. Thankfully his Paed has also been getting the low readings with him so she has added into the "mix" as she calls it to help work out a diagnosis.
He has been having his seziure's since very young, he's 27 months old now.
Thanks again.
Donna

 

[jimj]

We use chelated Magnesium, which is what our pharmacist recommended. I think Magnesium is usually well tolerated, as long as you stay within proper limits. You'll want to ask your doctor for an appropriate dose, or, you can research online the recommended dosage and upper tolerable limits for a your child's age and weight.

Would you mind sharing your son's age, weight and dose?

 

[KarenB]

He's 9 years old, weighs about 48 pounds, and because of his small size, he is still getting the dose more appropriate for a child of 8 (about 120 mg/day).

http://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

The tolerable upper limits are actually lower than the recommended dietary allowances -- it's best to get magnesium through foods (can't overdose that way); however, Jon doesn't eat many of the foods that are high in magnesium because he can't eat grains on the ketogenic diet.