Mjwill intro

[mjwill]

Hi all,

I am back on this website to hopefully to help others get through the tough times that we experienced. This website was definitely helpful to us.

Our daughter, Stella, developed absence seizures about 2 months before her 5th birthday. Within a week, we had figured out from our own research online that she was probably having absence seizures. We visited a neurologist, had the EEG diagnostic tests, and it was confirmed. She had already had spinal surgery for syringomyelia when she was 4 months old, so we thought it might be related to that. She had an MRI and all looked normal. We then learned about the available treatments for absence seizures and the choice (drugs) was incredibly depressing.

After figuring out that there was really no definitive evidence that having these seizures produced long-term risks to the brain, we decided to hold off on using drugs and look into other possible treatments. During this period, we had to make sure she wasn't ever on high playground equipment, riding bikes, or any other activity that a 5-10 second seizure would put her at risk of an accident.

We began to research what environmental triggers had ever been anecdotally or scientifically linked to seizures. The overwhelming conclusion was food. So, we put Stella on the GARD diet. We didn't see any improvement for the first month. The frequency of her seizures seemed to just cycle between good days (less than 10 seizures) and bad days (over 50 seizures). However, this cycling actually would give us moments of hope that something was working and that helped us stay on our goal of not going to plan B (drugs).

Our pediatrician suggested that we give Stella a blood test (Immunolabs) to measure for food sensitivities/allergies. She had told us of another family who took the test and after following the diet changes their boy's autism symptoms improved dramatically. So, Stella's results listed about 15 foods that she should avoid, including gluten, dairy, corn, soy, various nuts, and a few other items. We immediately eliminated these foods from her diet. About two weeks later we consulted a pediatrician who was an allergy specialist, and we had Stella tested using the skin prick allergy test. Many of the same foods that we had already started to eliminate came up as allergens on this test as well.

Well, to cut this story short (I might add more later), Stella followed this "elimination-4 day rotation" diet very strictly with absolutely no "cheating." She was resistant at various times as their was a learning process in finding the right foods, preparing the foods in a way that they were still tasty, but she was a trooper and didn't complain very much. After about 2 months we started to see consistent improvement, finally observing her last seizure on March 18 of 2008. We had mini-celebrations at the 1 week seizure-free stage, 1-month, 50 days, 100 days, and finally 365 days. She is still following the diet yet we have slowly reintroduced some of the things on her original "do not eat" list, such as eggs and soy. The last foods we will probably ever reintroduce would be gluten (wheat) and casein (dairy), as these seem to be the most potent food allergens from other people's stories.

So, that's our story and I hope it inspires others to try the same and I wish you all strength and patience.

Best, Matt

[skillefer]

Hi Matt! Welcome to CWE. That is fantastic news! I'm glad to hear that your little one is doing well now. I look forward to reading what you have to share.

[RobinN]

I too want to get some support as I study the rotation of foods. It is something that I have read about, yet not yet tried. I am stuck with giving similar foods for breakfast and lunch. I need to break the habits.

[Meetz1064]

That is SOOO cool to hear, Matt! Congratulations!!

[RobinN]

I am curious why you would ever reintroduce the most "potent" of foods, if these might trigger a seizure. I am going to ask for these tests as well. I haver read many times they are the tests that are most helpful in determining what to stay away from. I need this, for others to believe this is a problem. Are they fail safe tests?

[mjwill]

Hi Robin, that is a good question. So, if we did reintroduce all foods eventually, it would be based on the assumption that her original reactions to it were something that she would "grow" out of, although that is a mystery. As you probably know, kids that have absence seizures do grow out of them typically somewhere around 10-14 yrs of age. My theory is that some of this might be due to growing out of the allergies. If Stella actually has something like celiac, than reintroducing gluten at any age would probably just bring back the seizures (and other symptoms probably).

[RobinN]

I am just going on the information that I am reading at other sites, and it seems that these are simply not necessarily good ingredients to put in our bodies. Dogtor J makes the point that if the symptom isn't seizures, it would manifest as something else. I also believe as some do, that it does not have to be "celiac" but just gluten sensitivity. It takes so long to get gluten out of the system. Rebecca is still not 100% compliant. She is now taking a digestive enzyme that we are seeing if that will make up the difference.

[mjwill]

Right, I totally agree. Everybody would be better off without gluten. As to your earlier question about those allergy tests, I am sure they are not fail-safe but more helpful than not in my opinion. With Immunolabs, you can ask that they run duplicates of the blood samples for no extra charge. However, they only do this if you ask, at least this is what I read somewhere. We didn't get duplicates ran for Stella but I always wish we had.

[RobinN]

What do you mean by duplicates? That you get a duplicate report? Or is it a whole second test, to see if there are discrepancies? How were you able to use that particular lab? I doubt our HMO would approve it, they use LabCorp. I can pay for the test out of pocket but I try to get as much covered as I can. Are they a lab that specializes in this type of test?

[mjwill]

It is a second test, so two samples get run and I would assume they wouldn't come out exactly the same, but the fact that they offer this service suggests the test is pretty valid. Things might have changed as well, I would suggest just calling them about this.

Our HMO did not cover the test, that was a bummer. It is expensive, it was $600 when we did it. BetterHealthUSA.com is the site. LOTS of information there. Good luck!

[RobinN]

Thanks for your input.