Re: Question- to Ruth

[Guest guest]

Hi Ruth!

I saw in your message that you just got back from Children's in Denver. We are in the process of getting the necessary paperwork in order so we can take Maddie up there for a second opinion. Can you recommend some specialists for us to see while we're there? Maddies current Mito doc used to work there- Dr, Claire Leonard- not sure if you knew her or not- but I feel that she isn't taking much interest in Maddies condition right now- I'll elaborate more later in a rant for the whole list! Thanks in advance!

Holly Rubio

Re: Question

Hi Anne,Glad your vacation is going well...hope you're having fun out here in CO. We just got back from a trip to Denver Children's Hospital (actually went for Mitch, but got advice on Lexi while we were there...lol), and we were talking about the weight gain issue. If Asher is still eating orally, i would definately keep encouraging that piece, and of course make sure that every bite he does take in orally is maximized. With Lexi i have done things like add powdered milk, cream, and/or half and half to a glass of milk. I also sneak in extra calories by putting an egg into pretty much everything she eats (she would just die if she knew she was eating eggs...says she "hates them"). Also, melted butter goes on or in alot of foods. Hope this helps a little. :)ruth Please contact mito-owner with any problems or questions.

[Guest guest]

Holly,

We saws Dr. Johan Van Hove at the mito clinic this time. We've never worked with him before, always worked with Janet or Anne Tsai before. But he was very good, very thorough. What i really liked is that the grad student who did our intake told me up front that Dr. Van Hove is very aggressive in his treatment approach, and so she wanted to know how open i was to pursuing further interventions. It was a good opportunity for me to let her know where my position was in regards to muscle biopsy, etc. Let me know how things go for you.

ruth