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.