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concerned mtn. mom

Posts: 22
Joined: Jan 03, 2012

Hi, Betsy, you wrote me about 8 mos. ago and since then

Posted by @concernedmtnmom, Sep 28, 2012

Hi, Betsy, you wrote me about 8 mos. ago and since then I have been followng Ashley on Caring Bridge. What an amazing daughter you have! I pray for her every day. My daughter is still sick and went thru a PICC line, NJ tube, and then back to solids, but is struggling with chronic vomiting again. We are waiting to get in to Mayo. We tried to get into Nat’l Children’s to see Dr. DiLorenzo but they turned us down. We may reapply. We are sure it’s not GP, but no one can tell us what it is. We also ruled out cyclic vomiting since her episodes last longer than a week. She was diagnosed with Postural Orthostatic Tachycardia Syndrome, which causes dizziness and headaches and in our case vomiting, and we are treating her for it, and for a while that worked great. Now we are left with what seems to be autonomic nervous system dysfunctin that affects her digestive system. Which means no answers for how to get the nervous system to chill out.

In any case, I was on the clinical trials website tonight and found a study you might be intersted in. We don’t qualify but maybe the drug sounds familiar to you (aprepitant). I wondered if you have ever tried it. Maybe Ashley qualitifes, but she’s probably too young. In any case, there are lots of names and other info that you might find useful on the webpage:

I wish you the best of everything and keep you in my prayers,
Sandra Sajbel @betsy1rn


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