Seizures
I think Rhonda posted a note regarding no more seizures. My son is 20 and has been gfcf since the beginning of June. He has had seizures since age 4 and I've been trying to find out if anyone out there has had experience with their kids seizure activity being reduced or eliminated by the diet. He is also taking enzymes, magnesium, and calcium right now. Folic acid hasn't arrived yet and will be starting DMG and SNT in the near future. Debbie Mother of Ryan - ASD age 20
In a message dated 8/21/01 10:14:31 AM Eastern Daylight Time, debweeks@... writes: I think Rhonda posted a note regarding no more seizures. My son is 20 and has been gfcf since the beginning of June. He has had seizures since age 4 and I've been trying to find out if anyone out there has had experience with their kids seizure activity being reduced or eliminated by the diet. He is also taking enzymes, magnesium, and calcium right now I have been speaking all over the country, and people always come up and tell me about a child whose seizures decreased or went away. I would be very careful about decreasing medication if seizures reduce, and do so with the help of a physician. BUT...this happens alot from what I am told. LL
I'm hoping to touch base with those who have had success in reducing or eliminating the seizures. I am really curious to find out what supplements they were using and any other types of treatments they tried. If after 16 years of seizures I can do something to rid or reduce their activity, the whole diet would be worth it to me. At this point I have seen no other change. His behaviors overall were worse this summer. I attribute most of that to withdrawls, diet change in general, and of course being out of school. I'm still trying to figure out what supplements he should be taking, what food (s) really set him off, and overall just trying to get him to eat gfcf. It's been a very stressful summer to say the least. I appreciate any and all advice and suggestions.
Sorry, no magical supplements here. We may try some in the future again but had given up on them ever working prior to his new diet. At this point I have seen no other change. His behaviors overall were worse this summer. I attribute most of that to withdrawls, diet change in general, and of course being out of school. I'm still trying to figure out what supplements he should be taking, what food (s) really set him off, and overall just trying to get him to eat gfcf. It's been a very stressful summer to say the least. I would highly recommend that you go completely GFCF. Even a little off in this diet, seems to be a lot!!! For my son I did play with oats for awhile and wish now that I hadn't, I did see subtle differences in him with even small amounts of oat flour. I kind of went about this whole thing backwards because Cole has never had a PDD dx just "traits of autism" along with his ADHD, bi-polar and various other dx. With us, we had him tested for allergies and then discovered that he needed to be GFCF, since he tested positive for wheat and dairy, it was no big leap to go GFCF from where we were at. If I had it do over again, I might go in these steps. 1. Completely GFCF (maybe the easiest one to do since you can do it without a doc) 2. Test for allergies and keep a food diary to identify problems, this was super important with him since he has a really tough time with corn and violence and also apples causing depression, self-stim, and the tell-tale red cheeks just to name a couple. 3. Then look at the seizure issue and see if he is still having problems and consult with neuro (who by the way, thinks I am a complete idiot, lol) I didn't do it in that order, of course. With us, Cole was having more seizures on all his meds than off (we yanked him off while inpatient to start over and he did much better completely off) and I found that very strange. Every time we added another med and we were up to 6 a few months prior to the diet he just had even more seizures. (Not all his meds were for seizures, he had lots of other problems too) What I discovered was that when we finally got him off everything again and he had about 3 months of the diet under his belt, then he was "seizure free" (so far anyway) One of the things causing seizure problems or at least making them worse was the meds themselves or specifically the fillers in them. All of them were either dairy, corn, or something containing gluten. I would NOT recommend that you take him off his drugs, instead if you identify your child is allergic to or can't tolerate whatever your med fillers are have them made up by a compounding pharmacist. Of course, those were very small amounts of his allergens but he is very sensitive as we are finding out. I am guessing that most kids like him are very sensitive to just about everything. Their poor little bodies are overloaded from years of having a diet that is not right for them. I'm no doctor, just a mom with her observations. I have always known that I would do anything so Cole could have a better life. We all obviously feel the same about our kids! If I had to, I would go to much further lengths but I am so grateful that being GFCF and avoiding his allergens has produced this miracle. Later on, I might see the need for supplements, but for right now, we are in shock at our lucid, composed and happy son! He still sees his counselor once a week in our home, they are working on how to deal with him being a completely new person plus his leftover baggage and his reactions to some things which we think are just habit at this point! It is such a happy time. Oh, don't get me wrong, he is still a 12 year old boy with a stubborn and obstinate personality! No dream to parent, he probably never will be, but I can definitely make it through at this point. We still have some discipline problems, small problems with violence, but nothing like before. When the violent times happen, I rush to my food diary and make sure I am logging everything, after I deal with him and protect the other two, of course. And by the way, I am not positive all his seizures are caused by foods. Last year during football season he had much more frequent seizures and I am afraid this year as he starts practice Friday. I will be closely watching and finding out what is contained in that mouthpiece, helmet, and the rest of the equipment. More research to do, Yeah, lol!! Hope this helps! Rhonda rjohnson@... home educating 3 Cole, age 12; corn, dairy, wheat and barley, apples, chicken, tomatoes, and peanuts Shelby, age 8; blueberries and now cranberries, some vinegars Connor, age 5; no allergies! "We are living in a world today where lemonade is made from artificial flavors and furniture polish is made from real lemons." (Alfred E. Newman)
Can you tell me what seizure meds he was taking. I have wondered off and on if Ryan's meds were causing problems. Ryan is completely gfcf, although he grabbed a cup of regular milk instead of his rice milk today. He had already taken his enzymes, so hopefully we won't pay for the infraction. I have not had him tested for allergies at this point however. Did you take him to an allergist? His doctor has already informed us that he will not write any orders for any type of invasive testing. He was all for trying the diet however. Newman)
Specifically for seizures he was on tegratol and then later switched to carbotrol which is just the more sustained release version of tegratol. Probably not spelling these correctly though. He was also on neurontin, effexor, hydroxizine (for sleep purposes but now we have it compounded and use it as his antihistimine), wellbutrin, and usually some dexidrine thrown in but I bucked them alot on this one. Those were his big batch of meds, prior to the effexor and wellbutrin he was on risperdol for a couple of years along with the tegretol and neurontin and the hydroxine. He was never on any anti-seizure med except tegratol and carbotrol. Probably because both of those are also good mood stabilizers. His other meds were an everchanging business from the time he was 6 until recently (12). For those of you totally aghast at this point, Cole was not always in our home due to his extreme violence and I probably agreed to more meds than a mom who didn't always have to fear that he would not be able to stay at home. I am so pleased that his only meds now are his inhaler, his antihistimine and occasional Alleve for the few headaches he has left. Quite a change for us. Although it has been a short time since I found out what fillers are in those, I didn't write them all down so can't recall. I do remember that the neurontin had corn in it which we now know gives him severe headaches and that is exactly what the neurontin was supposed to be for (in part anyway). Several of these drugs are also mood stabilizers and we were trying to avoid lithium when I started pitching most of his doctors' advice and going with what his allergist was saying. I am glad I did, of course. But I must warn you that my kid is not every kid and they are all different. We had skin testing done at the allergist. Although it caused him some distress it was worth it. If avoiding those things that turned up positive on that test wouldn't have worked we would have done blood testing. I was lucky that with my insurance I get to make a lot of my own choices and didn't need a referral for an allergist. She is a pediatric allergist and sees alot of kids with PDD/ADHD and food problems. If I were you I would make sure you were doing the diet 100% and then see where you stand. I certainly do hear of a lot kids that are GFCF and also have other food issues. Best of luck to you, Rhonda rjohnson@... home educating 3 Cole, age 12; corn, dairy, wheat and barley, apples, chicken, tomatoes, and peanuts Shelby, age 8; blueberries and now cranberries, some vinegars Connor, age 5; no allergies! "We are living in a world today where lemonade is made from artificial flavors and furniture polish is made from real lemons." (Alfred E. Newman)