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?

Hi Lorie,
Welcome to the forum! I'm so sorry to hear that your daughter has seizures (sz.) I started having sz. when I was 10 yrs. old from a scar on the right temporal lobe of my brain. I've had 2 brain surgeries to help reduce my sz. but just like your daughter I have sz. every month when the hormones are changing and I've tried 13 different sz. meds but nothing will stop the sz.
When I was your daughter age it was really hard for me because of my going through puberty and all the hormones changing as I grew. What causes the sz. is the estrogen level gets high causing excitment in the nervous system while the progesterone level goes down and progesterone helps calm the nerves. You might want to try and put your daughter on the ketogenic diet it works great for kids and some adults stopping or reducing sz. The diet is high in fat but low in protein and carbs. I've been on the diet and it has worked great for me. Another thing you can do is put your daughter on vitamin B12 once a day it has done wonders reducing sz. for me.
Make sure you keep a calendar and write down what time of day/night your daughter had any sz. along with a description of the sz. by doing this he Dr. will be able to see a pattern as to what time of day/night your daughter is more likely to have sz. or what days of the month. Also I've seen many neuros over the yrs. and I found I was better of seeing an Epileptologist (Dr. specializing in epilepsy) and going to an Epilepsy Center. These Drs. are way ahead of any neuros. I ever saw in the past 35 yrs. and I'm on a lot less sz. med (AED's). Here's wishing you and your daughter the best of luck and May God Bless You Both!

Sue

I'm seconding what Sue said ... The best thing you can do for your daughter - especially at this "changing age" - is see an epi specialist. The best place to find one of those is a university hospital.
I didn't do that until two years ago and I've been astonished by the great treatment and kind attention I've received.

Please let us know how things are going and know that we're wishing you the best.

I answered your post on community feedback, but will copy it over here:
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. There is a ton of mainstream medicine literature about this, but our neurologists are just not very aware because celiac disease is considered primarily a GI disease. It has only recently been realized how often it occurs with neurological symptoms rather than GI symptoms.
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 attack, 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!! I've personally known several who fall into this category. 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

Since you are considering 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 of six months or more. The blood tests are good, but not perfect, and there are many who test negative but respond to the diet. You can find much more about testing in The Gluten File on the Diagnostic Testing pages.

Cara