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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