3 year old unusual epilepsy

[Jane823]

My 3 year old has had very small seizures each morning before breakfast.  They seem to be tied to her blood sugar levels.  Her eyes will roll for a few seconds while sitting upright and her head will drop momentarily, but then she is back.  After she has eaten she no longer has any problems.  At other times in the day, before a snack when she is hungry, she also may get these little seizures.  She had a normal MRI and her EEG showed "generalized activity".  She is not on any medication.  I am wondering if there is something going on with her metabolism?  Is there a way to better regulate her blood sugar and prevent seizures all together?  another note, we think she also has a gluten allergy.  I removed all forms of gluten from her diet for one month.  Although I didn't see an improvement in her seizures, when we started eating wheat last week she developed typical gluten rashes.  Could there be a connection?  I once wondered if her gluten allergy caused her to be low on B6, which is key in regulating glucose, which might be affecting her seizures?  One last symptom, when she is having problems with her seizures she sometimes pulls at her throat and complains that its bothering her.  Thyroid?

Thank you for your thoughts.

[Abhijeet Deshmukh, MD]

Hello.

You have brought forward a very important issue. There is a definite association between gluten allergy (Celiac disease) and epilepsy. And you explanation of how gluten sensitivity affects vitamin B6 and subsequently causes hypoglycemia, is also appropriate.

Glucose is essential for the neurons as their nutrition. If the nerve cells do not get glucose even for a short period, they start functioning differently. There are abnormal signals created and it may lead to seizures.

I hope the gluten free diet will help your child grow out of the seizures.

Regards

[Jane823]

Is there any thoughts you can give me on staying on the gluten free diet and when I might see some improvement in her seizures.  We were gluten free for one month and I saw no change in her epilepsy.  Is there a way to find out if her epilepsy is linked to her gluten alergy (allergy)?

Also, did you have any thoughts about the discomfort in her throat when she is feeling like she might seize?

Thank you very much for your response.

[Abhijeet Deshmukh, MD]

Hi.

We are not yet convinced that her seizures are due to gluten sensitivity. But it will help if you continue giving her gluten free diet. Currently, there are tests which can diagnose celiac disease, or gluten sensitivity. These tests can be correlated to EEG findings and clinical symptoms. These are genetic tests and can be done at specialized laboratories.

Your daughter's seizures are most likely to be atonic seizures. The discomfort in her throat could actually be due to loss of muscle tone during an episode. There are quite a few voluntary muscles in and around the throat. A sudden loss of tone in these muscles may produce such a symptom. I am not able to explain to you the mechanism of it. This is just a hypothesis. This is a rare symptom.

Regards

[jjb419]

Hi there. I have a 4 y/o with epilepsy.
I have gotten to know other parents that have children with celiacs and epilepsy. Some have seen good results w/ gluten free ... some not, in terms of seizures I mean.
When you mentioned low blood sugar possibly being linked, I had wondered if perhaps a low glycemic diet might help.
My daughters seizures are faily well controlled with the low glycemic index treatment for epilepsy.
I am NOT suggested you try LGIT at all without a trained epi, but perhaps the basic low glycemic diet might help keep the sugar from the ups and downs.

[Jane823]

Thank you so much for taking the time to respond to my question.  I went to a neurologist today and he didn't have any options for me besides medication.  Her seizures seem so tied to her blood glucose levels that I can't help but wonder if there is another option for her.
The only time she has seizures is first thing in the morning before she has eaten something.  Other times throughout the day she is fine as long as she doesn't go more than 3 or 4 hours without a snack.
I was wondering if you could give any information on parents you know who have children with celiac disease and epilepsy.  Do they have any internet sites they know of.  I am looking for more information that might substantiate a possible connection.  Is your daughter on the ketogenic diet?
I am wondering if there is any professional (homeopathic dr perhaps) that would could support my desire to look into finding out if there is another way to help her besides medication, although I am not ruling that out as yet.

Thanks again for your comment

[jjb419]

Here are two great sites for parent support (these parents are really informed):
http://www.epilepsyfoundation.org/efforums/forum/categories.cfm?catid=2&flcache=8519786&entercat=y

http://brain.hastypastry.net/forums/forumdisplay.php?f=115

There are parents on both forums familiar with the gluten free diets and know  alot more than I do.
I believe there is also a mom on that first group that said her child also had sz in the morning and she wondered if it was sugar related.

As far as your neuro saying the the only there he could do for your son was meds, well .... lots of neuros do that.
I think when dealing with ped epilepsy, it is good to find an epileptologist ... a neuro that specializes in epilepsy.

My daughter is on a modified ketogenic diet called Low Glycemic Index Treatment, it is not as strict as keto and allows for more carbs and protein. LGIT is different than the low glycemic diet you hear about for wt loss. In general Low Glycemic foods help to keep blood sugar even and helps to prevent those highs and lows. The treatment for epilepsy is like keto in that it is low carb and limits carbs, but of the carbs allowed, they must be low glycemic and again ... must be done only through a trained doctor (blood work needs to be done frequently).

Here is another link to a site called Matthews Friends:
http://site.matthewsfriends.org/

Matthews Friends is a site primarily about keto and related diets, but there is also an online parent forum and I believe there are also kids there that have gluten sensitivity.
On the Matthews Friends site, you can find a good article on LGIT as well as a slide show on LGIT.

As far as homeopathic docs ... be careful there. We went down that route and one of the homepathic remedies triggered a huge status seizure in my daughter. Status seizures mean prolonged and require emergency intervention.
If you do decide to go that route ... try and find a DAN! doc. they really seem to understand celiacs. There are many MDs that are now DAN!s.

I think finding a good GI doc and/or allergist that understands and has an interest in celiacs might be a good idea.

In any case, those links to parent groups might help you find other parents that are dealing with both epilepsy  and celiacs.

I think it is great that you are trying to figure the big picture.

[jjb419]

I have been reading a book by one of the leading epilepsy authroties, Dr Panayiotopoulos. The book is on epilepsy syndromes. He has a chart in the book that lists illnesses and condtions that cause or are related to epileptic seizures.
Celiacs is one of them.
I found this link you might be interested in:
http://jccglutenfree.googlepages.com/seizuresepilepsy

There are tons of articles listed on that site on celiacs & seizures.

[Jane823]

I can't tell you how much your thoughts and references to sites and info mean to me.  I really needed the help and they also help me feel like I'm not alone in this.  

Thankyou so much.  I'll look at your sites.