July 01, 2009

One step closer.

From the moment Jade's seizures started, we've been wracking our brains trying to determine the cause, what triggers them, and how to make them stop.  In the early days, Jade underwent a battery of tests, but the tests only ruled out other known causes.  In the end, her seizures were deemed "idiopathic".

After months of anti-seizure medications that seemed to only make things worse, we put Jade on the ketogenic diet. Then, things got better - but not 100% better. In our (and the epileptologist's) ongoing quest for our daughter's complete seizure-freedom, we have continued to search for that perfect solution.

Along the way, many people have asked us if Jade has allergies and if allergies could be causing the seizures. We have read and have been told by the experts time and time again that allergies don't cause seizures. You hear me? Allergies don't cause seizures!  

Regardless, along the way, I had developed a niggling feeling that the seizures might, somehow, be food or digestion related.

Fortunately, the experts have also told us that everyone has a seizure threshold and that certain things can put one over that threshold. Being overtired, sick, stressed, or having one's sleeping patterns disrupted can sometimes push people over their seizure threshold.  That's why, even though it's not part of the normal epilepsy testing process, we independently pursued allergy testing for Jade. We figured, if she has food sensitivities, we might be able to eliminate the offending foods and keep her below the threshold.

We just got the test results back.  Lo and behold, Jade is severely allergic to several of the basic foods in the ketogenic diet - with dairy and eggs ranking stratospherically up there on the list. There isn't a single meal on her keto-recipe list that doesn't contain either cream, butter, or eggs.

So, to remove the allergens, we now need to redo all of her meals and find palatable alternatives for Jade's new 4.75:1 fat-to-everything-else ratio. It's a lot of work but we (mostly Fawn, because she's the wizard with the ketocalculator who is adapting the recipes) can and will do it.  We'll do it because, no matter how difficult it will be eliminate the allergens and administer the diet, somewhere, deep inside, we know this is going to work.  We might even achieve seizure-freedom.

In hindsight, many of the symptoms that Jade has exhibited (and still shows, on occasion) when her seizures incease are symptoms that you would associate with allergies (ie. contact dermatitis, unexplained rashes, and a perpetually runny nose).  When her seizures first started, she was knocking back 4L jugs of milk in two days.  Coincidence?  If you listen to the experts, absolutely.  Allergies don't cause seizures.  That's what the experts say, right?

Once upon a time, the experts believed that illnesses were caused by spirits inhabiting the body.  By letting out a little blood, the spirit would have a way out of the sick person's body.  If that didn't work, a little more blood was drained to let out more spirits.  And so on and so on until the patient miraculously got better or died from blood loss.  Not surprisingly, many patients died from blood loss.  How much have things really changed?

Many of the gains that we've made with Jade's seizures, especially when things have been going in the wrong direction, have been made by hearing the doctors' recommendations (the conventional practice) for treatment, deciding it isn't the right course of action, and making the case for doing something different.  Fortunately, Jade's doctors have trusted our judgement as informed parents, and have always gone along with our wishes even if it's not what makes sense to them.  So far, we've always made the right call.

Right now, we're told that the experts can diagnose about 50% of epilepsy cases.  That leaves a lot of other possible causes.  Why can't allergies be one of them?  Researchers have increasingly been finding links between autoimmune disorders and epilepsy.  What more are allergies than an excessive autoimmune response?  It would explain why Jade has often had elevated white blood cell counts when she's had blood work done ("She must be getting over some kind of virus," the experts have said).  It would also explain why steroids are sometimes successfully used to treat epilepsy - steroids are also sometimes used to treat allergy sufferers.  Perhaps the mechanism is the same?

This is the only thing, this whole time, that has made any sense to me about a potential cause for Jade's seizures, because there has to be a cause.  Now, the signs are there and for the first time since this all started, I've got a feeling that we're finally going to get rid of Jade's seizures, once-and-for-all.

Wish us luck.


Anonymous said...

Oh, how I wish you've found the cause! Good Luck!

YF said...

I wish you found it. Allergy is a very tough topic. A good doctor is a person has open mind. Trust your observation for Jade. You are the winner! !

Cat said...

GOOD LUCK GOOD LUCK GOOD LUCK! How awesome would it be to be seizure-free?!

Unknown said...

I can tell you firsthand that food allergies and sensitivities can cripple your body's functions. I consulted with a urologist for 5 years (and many uncomfortable tests) trying to determine the cause of my recurring kidney and bladder infections. No dice.
I was frustrated beyond measure and started seeking alternatives to the long courses of antibiotics being prescribed to me. After an allergy test from a homoeopathic practitioner I found out I was sensitive and allergic to a barrage of foods. I cut them all out (a difficult process you can relate to!) and I have not had a single kidney infection since. Well, I had one, but that's because I cheated on my diet and had some wine on my anniversary. Not. Worth. It.

Taking control over my own diet and my own health literally changed my life.

You and Fawn do what you need to for Jade and leave no stone unturned.

YF said...

aha! I know some foods upset my stomach.I didn't know that bladder infection related to the allergy. I often had problem of my bladder and the doctor always prescribed antibiotic for me. When I traveled I had to take the medicine with me just in case. After I came to Germany, my mother-in-law suggested me to drink Kiney tea. I started to drink the tea every day in the morning. I have no problem since then. The kiney tea is also good for kiney stone. My husband had kiney storns, he drink the kiney tea every day as well. You may can find the similar tea in Canada. I broght one bottle for Fawn, when I went there in Nov. last year for her bladder stone. Cranberry jucice is very good for preventing bladder infection as well.

Heather said...

Best of luck in your continuing quest for your daughter's health. It is a quest that my partner and I can empathize with, as we have a son with severe allergies to foods and a number of other things.

My biggest frustration with the process was always in dealing with allopathic doctors who were less interested in causes than they were in controlling symptoms. I wanted to understand WHY my son had all the troubles he did, reasoning that if I could eliminate the cause we could eliminate the symptoms, not just mask them or control them with pharmaceuticals.

Trust your instincts and your intuition. Persistence will pay off. Good luck!