Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 You know, your story sounds a lot like our situation. We changed doctors after getting a food allergy test done. My son showed about 10 food allergies, but our regular ped. said that was ridiculous. That there was no such thing as food allergies. (I guess the thousand or so people on this list would beg to differ.)Needless to say we changed doctors. I don't get much help or information from my sons > doctors. It's just like these doctors want to medicate > my son and send us on our way. While there can be a place for mediaction, I personally don't feel it should be used without trying to find a reason for the underlying problem. > Has anyone experienced something like this? I think your story pretty much matches up with a lot of parents on this list. You are on the right track by questioning your childs treatment if you feel it is not right for your child. Karyn Seroussi's book is an excellent place to start. Take it one step at a time just like she outlines in the book. It can be overwhelming if you try to digest it all at once. I periodically re-read her book just to catch finer points that I may have missed other times. I think a doctor who supports you is also going to be crucial. I don't know where you are located, but the Autism Research Institute has a list on doctors certified in the DAN (defeat autism now) medical protocol, which uses the GFCF diet. You may even find a local doctor in your area that can help you (nurse practitioner, nutritionist, environmental doctor, etc.). Another important step was finding this group to be plugged into as a daily reminder that I am not alone (or crazy) in pursuing this course of treatment for my son. While not every treatment is appropriate for every child, lots of people here are doing the same or similar treatments and you can almost find an answer, resource, or just support if you need it. You can do this!! F. Mom of three boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 My 7.5 year old dd has epilepsy. I started the GFCF diet with all three children and myself, specifically targeting my speech-delayed son. We all did it because I was too lazy to make different meals for everyone :c/. My dd started having absence seizures at 5.75. Put on Zarontin ... awful with no control. Put on Depakote .... worked for a while but started to see subclinical *spaciness* by last fall. Ped. neurologist recommended up to 4x125 mg Depakote per day. At this time we started monkeying around with the diet .. a week on, then running out of groceries. We were mostly concentrating on my son, but then noticed my dd's spaciness was more infrequent. I spoke to my dd's neurologist, and he said, in essence, there is no way this diet could have any effect on her seizures. We went 100% GFCF February 5. My dd was showing no seizures for the first time in a long time; however she was showing some severe moodiness and attention issues (courtesy of the Depakote). Some time about three months ago, we dropped her back to 2x125 mg per day. She is doing fine. I see no evidence of seizure activity. I did not have the approval of her neurologist, and would not drop her down any more on my own. Next step is to take her back to the neurologist, admit that I reduced her medicine, and hopefully get her in for an EEG. I have a feeling it might look better this time. Her thinking is much more organized than it has been. Additionally, my almost 4 yods has gained 36 months of expressive language since February, and plays creatively and cooperatively with his sisters. In June he was *graduated* from special services -- no longer eligible for services in our state because he is NT. In addition I had a long list of weird symptoms (physical and neurological) that have completely cleared up. Thank God for our family doctor. He is amazing; smart and still open minded. He started out skeptical but has seen the impact on our family, and now has actually mentioned the diet to other patients. If it wasn't for him, I would be in rough shape. Sorry this was so long, but definitely think there is a link. > Hello!! I have had my son on the gfcf diet for a while and he has > been doing great. I don't get much help or information from my sons > doctors. He has epilepsy but the doctors can't explain why. They have > told me his seizures stem from something they just don't know what. I > put my son on the gfcf diet and his seizures pretty much came to a > halt. He developed at a pretty normal rate until his well check when > he was 17 months old. He had his shots DTaP, HIB,IPV, AND MMR. For > days after his shots he was very irritable. Seven days after his shots > he had his first seizure. After that he completely changed. He stopped > talking(he is now three and still doesn't talk), He became fascinated > with ceiling fans and lights, became very distant, would no longer let > you cuddle him or play with him, it was like he was in his own world. > A friend of mine gave me an artical out of a magazine about the gfcf > diet and I tried it. I noticed immediate results. He is now much more > loving, and more aware. He has made alot of improvements. I get no > help from his doctors they always act like I'm doing something wrong > by doing this diet with him ,like I'm depriving him of food. I tell > them that he gets everything he needs. I get really aggrivated, I > never get any answers. It's just like these doctors want to medicate > my son and send us on our way. His neurologist just put him on a new > medication that he is having a hard time with. Lamictal (lamotrigine) > plus he is still on Depakote as well. He has become very irritable, > wants to lay around and cry all day. It is driving me crazy.I call his > doctors and they act like it's ok for him to be going through this. I > am very frustrated. I don't know exactly what happened to my son to > begin with .I'm told it was not his shots that caused this. But he had > normal development until he was 17 monts old. I'm trying to make a > very long story short so I hope this is all comming across clearly. > Has anyone experienced something like this? Does any one have a child > with seizures? Does anyone have a child who has has fewer seizures > since starting the diet? Anyone have a child on Lamictal? Any advice > comments or suggestions would be greatly appriciated. I'm very > confused. I feel helpless not being able to get any answers from his > doctors. I don't know if I'm not asking the doctors the proper > questions or what. I thought people went to the doctor to get answers, > but I get none. I need whatever help I can get. I hope there is > someone out there with some advice Please. Rebekah (Kienan's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 > , > > Was the diet the only intervention you used with your son? > Jen > Kienan has a speech therapist (twice a week for 30 mins.), an O.T. (twice a week 30 mins) , P.T.( once a week 30 mins) and sensory integration with the O.T. I also work with him on this stuff at home. He will start a pre-school class next month. I give him vitamins (super-nu thera). Just started him on Acidophilus plus. Are there other things I can be doing or supplimenting his diet with? Any input would be helpful. I will take all the help , advise, and personal experiences I can get. Thank you!!!! Rebekah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Thank You !!!! My son has been on Depakote 4 x 125 mg per day for about eight months now.Last month he had one seizure and his neurologist changed it to 5 x 125 mg per day. He was walking around like he was drunk and irritated. That's when the lamotrigine was added and now the are decreasing the dose of depakote. He is worse than he ever was. I talked his neourologist into bringing the depakote down to 2 x 125 per day this morning so I hope some of the irritation goes away. Do you know anything about Lamotrigine ( any one who has had experience with it)? I don't know anyone else who has a child like mine and your the first person I've ever had contact with who has also had their child on depakote. I told my neurologist about the diet and got the same kind of reaction. Thank You so much!!!! Rebekah (in Tallahassee, Florida) -- In GFCFKids@y..., KLStenhouse@c... wrote: > My 7.5 year old dd has epilepsy. I started the GFCF diet with all > three children and myself, specifically targeting my speech-delayed > son. We all did it because I was too lazy to make different meals > for everyone :c/. > > My dd started having absence seizures at 5.75. Put on Zarontin ... > awful with no control. Put on Depakote .... worked for a while but > started to see subclinical *spaciness* by last fall. Ped. > neurologist recommended up to 4x125 mg Depakote per day. > > At this time we started monkeying around with the diet .. a week on, > then running out of groceries. We were mostly concentrating on my > son, but then noticed my dd's spaciness was more infrequent. I spoke > to my dd's neurologist, and he said, in essence, there is no way this > diet could have any effect on her seizures. > > We went 100% GFCF February 5. My dd was showing no seizures for the > first time in a long time; however she was showing some severe > moodiness and attention issues (courtesy of the Depakote). Some time > about three months ago, we dropped her back to 2x125 mg per day. She > is doing fine. I see no evidence of seizure activity. I did not > have the approval of her neurologist, and would not drop her down any > more on my own. > > Next step is to take her back to the neurologist, admit that I > reduced her medicine, and hopefully get her in for an EEG. I have a > feeling it might look better this time. Her thinking is much more > organized than it has been. Additionally, my almost 4 yods has > gained 36 months of expressive language since February, and plays > creatively and cooperatively with his sisters. In June he was > *graduated* from special services -- no longer eligible for services > in our state because he is NT. In addition I had a long list of > weird symptoms (physical and neurological) that have completely > cleared up. > > Thank God for our family doctor. He is amazing; smart and still open > minded. He started out skeptical but has seen the impact on our > family, and now has actually mentioned the diet to other patients. > If it wasn't for him, I would be in rough shape. > > Sorry this was so long, but definitely think there is a link. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 rebekah...i don't have much advise as my son has not had any seizures but my son is the age of your son and he lost language after 18 mnths after his mmr. shot also and i'm trying despreratley to find out the reason and help him to get back to the level he was at...this is my crusade...will you join? please let me now of any progress or set backs you experience and i'll do the same for you feeel free to e-mail me privately . thanx max's mom Quote Link to comment Share on other sites More sharing options...
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