Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 Forgot to add!.... the endo dr. was of the opinion that the loss of bone density was largely caused by the aed's and just exacebated by the kgd. Don't you wish these dr's would warn you of these potential side affects!!!!!!!! ggrrrrr!!!! jeanette > >Reply-To: ketogenic >To: ketogenic >Subject: Re: Rohan Update >Date: Sat, 15 Dec 2001 09:25:42 +0000 > >Saro >Don't know if this is helpful, but Jess started diet on depakote and was >on both for about four months before we weaned dep. But in her case she >is peeing out lots of calcium even without the dep on board, and her >bone mass is low but within normal limits for age. So sounds different >from Rohan >Wish I could help more > > >sanaljay wrote: > > > Hi, > > We saw the endocrinologist again yesterday for Rohan's > > osteoporosis. The calcium in urine is slightly elevated but > > not that much to explain the severity of the osteoporosis. > > He has backache caused by compressed vertebrae and > > couple of small fractures. They only scanned the back. > > Luckily the kidneys are clear of stones, thyroid and para > > thyroid seem to functioning OK. The levels of calcium in > > the blood are OK. The results of one more test has to come. > > The endo said it was not just a problem to do with calcium. > > > > In the mean time they want Rohan to come in next Thursday > > for an infusion of Pamidronate. This done for four hours on > > three consecutive days and then again evey three months > > for an year. The endo seems to think that it will help the > > bone to grow, but Rohan is the first he has come across > > in these circumstances. He said he knew nothing of the KGD > > but was really interested to learn that other kids on the diet > > have had similar problems. He said he thought it was a > > combination of the Aeds, depakote in particular and the > > diet. Rohan has been med-free for nearly an year now. > > The endo had disscussed the problem with Rohan's former > > neuro, who'd suggested he come off the diet. He wasn't in > > favour of the diet in the first place. They are going to suggest > > it to the current dr. supervising the diet too. So we can > > expect pressure to come off the diet. > > Eventhough the diet hasn't helped much with sz, it got > > Rohan off the awful side effects of the AEDs, and we > > really don't know what to do. > > WHat I'd really like to know is whether any kid who'd > > had problems with bone-thinning was on the diet together > > with depakote. I know Lori's Ainsley had problems but > > she doesn't seem to be posting on the list now. > > Sorry for the lenthy post but I thought I'd share as this > > is something to be aware of on the diet. > > Saro.......mum of Rohan(13 yrs next Tuesday, on Kgd > > since 02/00, med free all of > > this > > year) > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. 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.