Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Hello every body I haven't posted for a long time just reading and learning alot from the site. I have a question about how long we should keep our daughter Amelie on the diet. She's been on it since Feb 2004 with some success. At first we felt there had been a significant drop in her seizures however recently despite good ketone readings (3-4 on blood ketones) her siezure activity appears to have risen again. She has definitley become more active and engaged since the diet . She has been on sodium valporate during the diet and I've read on the site this can interfere with the diet however our neurologist is ressistant to taking her off it as he thinks it's stabalised her infantile spasms. any one any thoughts or experience of this situation? best wishes to all adam stone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Most neurologists are inexperienced on the diet. If your child is stable on the diet, then medications can be slowly weaned. Withdrawal seizures are common. We weaned tegretol after about 6 months on the diet. Our neurologist wanted to wait for one year as that is normal with things like brain surgery. We had lots of withdrawal seizures and things were very bad. It took months to get things stabilized. There was no difference without the tegretol in terms of seizures. We still see 2 to 4 each day, but they are short and there is immediate recovery. It is easy to miss them. We did see improvement from toxicity from the medications even though the dose was not really high. I worry about long term effects of medications and unknown side effects. You may have to fine-tune the diet and get rid of medications to see what the diet can really do. Keep the pressure on to getting her off the medications or just say that you are doing it and what is his suggestions for the weaing. Two years is a minimum for staying on the diet if things are going well. Some people stay on a lot longer. We are finding that weaning the diet is like weaning medications. It has to be done gradually. There was a good report on Jim Abraham's son Charlie and his experience on weaning the diet. Bill acstone2003 wrote: > Hello every body > I haven't posted for a long time just reading and learning alot > from the site. I have a question about how long we should keep > our daughter Amelie on the diet. She's been on it since Feb 2004 > with some success. At first we felt there had been a significant > drop in her seizures however recently despite good ketone > readings (3-4 on blood ketones) her siezure activity appears to > have risen again. She has definitley become more active and > engaged since the diet . She has been on sodium valporate > during the diet and I've read on the site this can interfere with the > diet however our neurologist is ressistant to taking her off it as > he thinks it's stabalised her infantile spasms. > any one any thoughts or experience of this situation? > > best wishes to all > > adam stone > > > > Quote Link to comment Share on other sites More sharing options...
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