Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 , 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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