What can I do to help my child stop having seizures?? I asked myself that question a million times. Seeing him have a seizure was the worse thing imaginable, and I had to keep watching it over and over again. Is there anything I can do?
A Short Background:
It all started in February of 2009. It was an ordinary Wednesday afternoon. Our son had a seizure. Of course lots of questions followed: “Is he going to be o.k.?”, “Why did this happen?” and most importantly “Will it happen again?” We did the whole ER visit and a battery of tests. Everything was “fine”, but obviously it wasn’t, he had a seizure. Over the course of the year we experienced other seizures and many tests, that said that our boy was “fine”. We saw one doctor that gave us vague answers to all of our questions, then another doctor which seemed a little more knowledgeable, but still couldn’t control his seizures. Finally, we chose to seek a third doctors opinion. Three different pediatric neurologists all of which wanted to put him on medications. It occurred to me during this time that doctors, even the best of them, can’t always explain how the brain works, and even how the medications work. So my husband and I asked ourselves, if they can’t tell us how they work, how are they going to help our son?
He was not on any medication at this point. Up until then we felt the medication’s possible side-effects outweighed the possible benefits. We got to November of that same year and he was having seizures everyday. He had multiple myoclonic seizures daily and a handful of tonic-clonic seizures a month. Then December 6th came along. Our son had a 13 minute seizure. At this point we were afraid. We started him on Depakote in the ER that afternoon. After that things started to change, for the worse. Each seizure following became longer. Previously there were only 1-2 minutes, now lasting 5-10 minutes each time we thought we had been foolish to not medicate him sooner. At this point they were uncontrollable and he would vary between tonic-clonic and myoclonics daily. After hospitalizations and now being on a cocktail of medications, that were not working, and no end in sight we were desperate.
How to Cope:
Now, I can’t begin to describe the emotional stress that I was going through with this situation. I like to think of myself (and I think others that know me can attest to this) as being pretty even keeled. I try not to let things bother or overwhelm me, and I can say that for a while at the beginning that is how I dealt with it. I figured that this was some kind of fluke and that it would be over soon, I mean really, the doctors said he was fine, right? But this was different. When it is your child, whom you love more than yourself and would never dare imagine life without, watching them battle this unseen force, and you CAN’T seem to do anything to stop it. For the first time in my life I felt completely helpless and useless. It is a hard feeling to describe and you won’t be able to really understand unless you’ve been “there”.
The one thing that I can tell you that helped get me through this was prayer. Now I promise I am not going to get “preachy”, but this was a way of releasing my pain and frustration knowing that I was talking to the One, who not only was listening to me, but HE can do something. I know from reading my Bible 2 Corinthians 12:9 says “…My grace is sufficient for the: for my strength is made perfect in weakness”, then Paul concludes with “…Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.” Now, I am not one to “volunteer” for trials, but I’ve learned that there is something special that happens in a situation where you feel completely helpless and weak, that doesn’t happen any other time. His peace and comfort. He is strong for you, and that is exactly what happened to me. I can’t “logically” explain how, but I am witness to being covered with God’s strength.
Another way to cope is finding people who can relate to your situation. Hearing/reading other families stories and finding that everything did work out in the end is always encouraging. It helps to rebuild some of that hope tends to crumble over time. We also knew that we had countless people thinking and praying for us at any given time and that helped make a difference too.
The Light at the end of the Tunnel:
Okay… here is where it starts to get good. We had cancelled seeing a nutritionist a couple times, but finally we saw him in January of 2010. Nearly a year since all of this started, and about 3 months after things started spiraling out of control. He did some lab work which included drawing blood and doing an analysis of his inner workings. Also worth noting was the fact that for the previous few months our son was sick regularly and for long periods of time. When we finally got the results we understood why. He was gluten intolerant, along with being intolerant to corn and casein (a milk protein). Now, for those of you who may not know, when your body is intolerant to certain foods it actually sees it as “virus” or a type of foreign body that it needs to get rid of. It cranks up the immune system to try to attack it and keep your body healthy. Imagine, foods that I was feeding him at practically every meal was making him sick. Of course, having no idea, I kept giving him food that he couldn’t tolerate and his body, at the same time, is trying to get rid of it. It helps explain his being sick regularly because by the end of 2009 his immune system was nearly depleted.
We immediately started him on a gluten, corn and casein free diet. He did continue to seize on and off for a couple weeks. I called my nutritionist and he said we needed to start him on a pro-biotic, Omega 3 fish oil, and a few other supplements. (Which he did suggest initially, but I had been so consumed with the diet change I had forgotten) Our son had two small myoclonic seizures the next morning after we started supplementing him and then never another since. Now there is more to the results and how these supplements worked for him, but gluten was the main source and reason for his situation.
Something else to consider. Once the doctors told us that there was nothing more that they could do, and since he was on every medication they could suggest already, they told me I should see a dietitian about starting him on the Ketogenic Diet. (If you are not familiar with what this is you can do an internet search and find lots of info on it) The doctors told me that many families that did not have success with the medications did find some degree of success with this particular diet. This and other diets, like Atkins, are regularly used to help people with seizures that don’t respond well to conventional treatment. The main food item that is removed from these diets? carbohydrates. What do carbohydrates contain? Gluten! I don’t doubt that if we had decided to do the Ketogenic diet we would have seen some degree of success. Not necessarily because of the main purpose of the diet (to maintain a state of Keytosis), but because it would have taken out the main culprit of our son’s sickness. I wonder how many people are gluten intolerant that go on that diet and find some type of success.
What Does This Mean for You?:
I can’t promise that your story will be like mine. I would hope that my story can help encourage someone that is going through the same thing. If there is one thing that I can stress to you it’s this: You CAN do something. You NEED to educate yourself. Learn everything you can about nutrition. Stretch your brain. Do your OWN homework. Don’t rely on the opinions of others, even if they are doctors and neurologists. They are still human and have limitations on what they know (trust me on that one). All of the doctors discouraged me into trying to find out what was the real cause of his seizures. I know statistically only about 30% of the time people ever find out the real reason for a seizure, but that didn’t stop me. I spent hours on the internet reading, learning, trying to link something to my situation and by God’s grace we found our answer. It wasn’t easy. Especially during the times when he was laying postictal on the couch after his seizure. I didn’t know what to do, so I searched the internet. Even though I felt helpless, I was learning. And even though God didn’t drop a miracle in my lap, he taught me that I could trust Him and looking back on the road I can see how he led me right here, to where I am now.
Please feel free to leave a comment. I would love to hear feedback if anyone else has had been in a similar situation or if you have any questions for me.