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questions questions questions

josie Message
5 Mar 2015, 06:04 PM

My daughter was diagnosed in 2010 with Triple A syndrome, since that time we have met with many different doctors to try to deal with the multitude of symptoms that seem to come along with this syndrome. The biggest obstacle we run in to is that the doctors either do not know of vaguely know of Triple A syndrome. I have done most research on my own. It would be nice to talk to others that have this or have children that have this and find out how they deal with day to day life. Josie does the best that she can, but the issues from the autonomic dysfunction seem to be her biggest obstacle. Thank you
Anna Message
6 Mar 2015, 10:35 AM

Hi Josie, My daughter (8 years old) has triple A Syndrome. She has achalasia and alacrima but (not yet) addisons. We are very concerned about other problems she will maybe have in the future. The inability of doctors to do something is horrible.Me and my husband suffered a lot I can ask you a few questions? How old is your daughter? What doctors have done so far in connection with the achalasie? Since when is your daughter problems with autonomic dysfunction? Beste regards (sorry for my bad english) Eva
josie Message
6 Mar 2015, 03:26 PM

Josie is 19, my name is Tracie, I will do my best to answer your questions. As far as the achalasia goes, Josie has had several dilations and the heller myotomy surgery. According to her doctor she not only has achalasia but also a motility disorder. She currently has a feeding tube, because of the issues with that and being underweight. I believe around either late 2010 or early 2011 we went to UT Southwestern in Dallas and Josie had testing done for her Autonomic dysfunction, the doctor said on a scale of 1(best) to 10(worst), Josie was a 10. She has problems with her blood pressure, she sweats when she's cold, or eats salty foods, she has digestive issues, she's very sensitive to cold and she has a lot of fatigue. She too has never been formally diagnosed with Addison's, but the doctor felt like she had enough symptoms to warrant putting her on a low dose steroid. We mainly see doctors at Cook Childrens in Fort Worth and UTSW in Dallas, but we also spent about 10 days at the Mayo Clinic in Minnesota. The doctors there pretty much said we were getting as good of treatment close to home as we could there. It is so hard not really knowing what the future holds for your child. Josie still lives at home, but she is taking some classes at our local community college, she takes a heater with her to help keep her warm and she takes one or two classes at a time. Anyway, I hope this helps, it's nice to talk to someone who knows what were talking about.