Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 Adam, I definitely fall in the group of parents who believe epilim interferes with the diet (my daughter's neuro agrees to this, too). It wasn't until I began to slowly wean (without our old neuro's blessing) the epilim (well, depakote, here), that we gained any control from the diet. It was a long and rocky struggle to get rid of it, with many setbacks, but my daughter is so much better off it. She is now on a moderate dose of Keppra, which may or may not be helping---I agreed to starting it when we the depakote was just finished with and we hit another rough patch. In hindsight, I have the nagging feeling it was the depakote still in her system causing the problems, but since she's doing so well, I'm not about to rock the boat and test my theory! Anyway, I wondered if you feel like the epilim ever did give Amelie any control. In my daughter, Claire's case, I have no doubt that it was a very bad drug for her, even before starting the diet. If wasn't helping before the diet, then trying the diet without it may be worth a try. I'm not to say that your neuro is wrong about it stabilising things for Amelie, but our old neuros insisted on keeping it on board and upping at every bad turn, when it clearly was making Claire worse (more seizures, no quality of life). Clearly I'm biased--hate the drug! But I know that it is a godsend for many. Just wanted to share our story. ~Barbara p.s. Claire hated the diet, too, at first--but that's when she was feeling so awful. When she started having good times again, she was (and is) fine with it. acstone2003 wrote: > Hi > I just wanted to ask the group their opinion as we are seriously > thinking of weaning our daughter, Amelie off the diet. It's not > been an easy decision, having read so many wonderful and > positive experiences on the site. Our daughter has been on the > diet for 6 months, she has achieved good ketone levels and we > have seen very little improvement( if any) in terms of seizure > control. For a short time we really believed that things were > improving but now on reflection we think we'd just been > deluding ourselves. She has very low energy threshhold and we > hate depriving her of the one thing she can do really well, eating > food, she used to love meal times but now hates them. > > We are at a cross roads in her treatment as we know things will > have to change. She is also on epilim which some parents have > suggested can effect the potential of the diet. Our gut reaction is > to wean off the diet and see where we stand, this route will > undoubtedly lead to trials with other combinations of AED's. I'm > sure you can relate to our terror in going this route. Another > option might be to stay with the diet, hoping for future progress > and wean off the epilim with the hope that siezures don't > increase. ( Our neuro believes the epilim has been a stabalising > factor on her siezures) This route would almost certainly go > against his advice. > > Do any parents out there have experience that might inform our > decision > > Thanks for your help > best wishes > > adam stone > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last > resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.