Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Hi , I use Ketocal for in case of emergencies (when he is ill or when he went into hospital recently to have his teeth done) - it is really easy to make up and the Vanilla flavour tastes quite nice. Emma. > , > You wrote Camille may be starting the diet on July 6.....just popping a note to see how she and your family are doing. I know this can be a difficult time. Let us know if you have started and how little Camille is doing. Our baby Hannah is 6 months old and has been on the diet since she was 2 days old. > I am curious to know if your nutritionist has recomended KetCal to you. I gues it's this great formula that was pulled of the market in the States due to a packaging issue and is now back. My neuro/nutrition team is working on getting it for Hannah...no more " homemade " formula! All you have to do is measure and add water. It is a 4:1. > > New Member > > > Our daughter, Camille, is 8 months old and is scheduled to start the Keto > diet on either July 6th or August 2nd, depending on the results of a few > tests. We're very excited to start the diet! Camille has Infantile Spasms, > a rare form of epilepsy and 3 drugs have failed her (ACTH, Vigabatrin, > Topamax). We just started the 4th drug, Zonegram. > > The Keto team at UCLA seems wonderful. They have a few concerns about > Camille's tolerance of the diet, but feel they can be addressed. > > -- First concern is Camille's weight. While s Hopkins has successfully > treated patients as young as 3 months on the diet, the UCLA program is > mostly concerned about weight vs. age. Camille is small for her age (6.8 > kilos / 15 lbs) - she will be the youngest and lightest patient ever on the > diet at UCLA. > > -- Second concern involves questions regarding her GI issues. The nurse is > concerned that these issues may be exacerbated with the Keto diet. Camille > had a Nissen Fundo for her reflux, which was severe. She's had trouble > tolerating feeds recently and we've finally found a solution (frequent, > small volume feeds). A Delayed Gastric Emptying (DGE) test was conducted on > Friday. We may need to move her start date of the diet to Aug 2 to > determine how to address the DGE if that is the issue. > > Wondering the following: > -- Has anyone started their child on the diet at Camille's weight > (6.7kilos/15 lbs)? What was your experience? Any special issues you faced? > -- Wondering what the GI related effects of the diet are? I know the keto > diet is harder to tolerate than formula. Anyone with GI issues? Delayed > Gastric Emptying? Reflux? > > Thanks! > > > mom to Camille, 8 months old > dx with Infantile Spasms, MISF, CVI > Nissen Fundo, MIC-Key Feeding tube > > > > " 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...
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