[Lorie RG White]

Hello. My name is Lorie and my daughter has had a seizure disorder since she was 1 year old. She has a calcium deposit on the left side of her brain. Although medication has kept her "full-blown" seizures at bay, she continues to struggle with "episodes" with every bit of growing that she does. She is 10 years old now and is up to 6 pills per day. Her DR is looking into changing her meds and that is still a work in progress. Can anybody tell me what other options she might have?

[Chemar]

Hi Lorie and welcome to NeuroTalk

I am going to copy your post to our Epilepsy forum and also to our Children's Health forum as I think you will get more answers there....
here it is on Epilepsy http://neurotalk.psychcentral.com/sh...ad.php?t=23812

and here is the link on the Children's health forum http://neurotalk.psychcentral.com/sh...ad.php?t=23813

[Darlene]

Lorie,

Hello and welcome to NeuroTalk. It is great to see that you have come aboard.

What medicines is are your daughter on? I have had epilepsy since I was about 10 (and that was a long time ago, as my son-in-law calls me the old one). I have been on a lot of different ones.

Looking forward to seeing you around. If you prefer just send me an e-mail.

Darlene

Here is a for her.

[jccgf]

Hi Lorie,

Have you ever heard of or considered having your daughter tested for gluten (found in wheat, barley, rye) sensitivity/ celiac disease? Celiac disease is an autoimmune disease that is associated with gastrointestinal, neurological, skin, and other disease. It is possible that neurological symptoms are the only symptom of celiac disease (without the more classic GI symptoms) and it is possible to have gluten sensitivity causing seizures and other symptoms without testing positive for celiac disease. You should be able to search the Epilepsy and Children's Health forums with a keyword gluten and pull up some past discussions.

It is possible that dietary changes could improve her seizure control if she is gluten sensitive.

Here is a link with lots of information about seizures that are related to celiac disease/ gluten sensitivity.
http://jccglutenfree.googlepages.com/seizuresepilepsy

My own daughter has a history of seizures that we ultimately found related to a B6 deficiency and gluten sensitivity. You can read about our story here.

You will read that seizures related to celiac disease can be caused directly by immunological factors, and nutritional factors (deficiencies of vitamin B6, B12, folic acid, and others can cause seizures), and that the calcium deposits you mention may be a clue.

Sometimes people with celiac disease have a poor response to medication because the medication is not being absorbed properly. A red flag for malabsorption would be if it requires more medication than typical to reach therapuetic levels.

The response to the diet is variable, but there are cases of complete resolution of seizures. Some people find they are also sensitive to other foods, and may need to removed cow's milk or soy to gain seizure control. This is something you need to explore on your own because it just isn't on the radar screen of most neurologists yet, despite the connection between celiac disease and seizures being well documented in medical literature for decades.

This is a good overview article about celiac disease, which has a small section on seizures.
Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD

If you are looking for other options, I hope you will consider testing for gluten sensitivity/celiac disease, and perhaps even if the tests come back negative... a dietary trial. The tests are good, but not perfect. You can find much more about testing in The Gluten File on the Diagnostic Testing pages.

Cara