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Newest Member - research update?

drosee Message
10 Aug 2009, 12:59 PM

Hi everyone, Nancy and I are parents of Bri... a 16 yr old diagnosed with GA over 9 years ago. I've sent her an invite so hope she joins the group. Like most of us, we have some good and not so good days with the protein restrictive diet - tough when you're a teenager. I saw that a couple of you were discussing emergng treatments in Europe and supplements like Vitaflo. Would love to hear what you've found... as great as the Internet is, there seems to be very little about emerging GA treatments. Thanks, hope to hear from some of you. Ed & Nancy
mbrnnrbrwn Message
11 Aug 2009, 12:56 PM

Ed and Nancy, Glad you found us. Rachel is 11 soon to be 12. So, Bri was diagnosed at 7? Rachel hs been on the diet almost a year. It has definitely been a rough year, changing an 11 year olds diet is interesting. We have found a local PKU family to communicate with. I think Rachel would love to hear from Bri. She feel so alone sometimes with GA. Rachel drinks 4 packets of vitaflos EEA formula, 6 grams creatine, calcium vitamins, omega 3 vitamins, and multi vitamin. She is good probably 5 out of 7 days, though this summer she has been off diet more than on. Bri's dietician should be able to tell you about Vitaflo. We see Rachel's geneticist on the 24th, so if you have any questions for him, let me know. Need to sign off for now. Leaving for vacation in 12 hours. Missy