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TJoanneT

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  1. Hi everyone, I've read many of your posts and now that I'm registered and activated, I'm hoping to get some more input into what I think is going on with my daughter (and myself to a lesser extent). My 6 yr old DD (nearly 7) Robyn has been plagued with medical issues since birth. She was born very quickly (active labour < 1 hr) and at 13 days of age began crying and cried for 6 months straight. She dropped from the 85th to the 10th % in weight by 8 wks old and was diagnosed with GERD (not by testing, but by exclusion). From the age of 6 mos-18 mos things were calm. At 18 mos of age she began a cycle of monthly vomiting episodes which were later diagnosed as cyclic vomiting syndrome (in the migraine family). This has continued until now. At 5 years of age, she began having spells of abdominal pain, which lasted 2-4 hours a day. She was unable to go to school and this lasted for approximately 8 weeks. Now, at nearly 7 years of age, she has just gone through another 8 week spell of abdominal pain, and also had her first full-blown migraine. Another interesting symptom is that she has an extremely low tolerance for the heat. She is unable to play outdoor sports, we cannot vacation in the summer and if the temperature goes much higher than 65 degrees out, she is unable to play outside. Her normal body temperature is well below normal. She suffers from severe motion sickness. A friend of mine (a pediatrician) finally tipped me off to the idea that there was some sort of autonomic instability that could explain all of Robyn's medical concerns. Nothing up to this point could answer everything. After doing probably a hundred hours of internet research, I was convinced...this was the answer we've been looking for all these years. We've seen a total of 4 doctors in the last month...our GP, and ER doctor, our Pediatrician and a Neurologist. No one will listen. No one will even consider this as an option. I've contacted one of the doctors listed on this website who is willing to speak to us, but he's a 12 hour drive away...there's no one closer. I live in Canada, where you can't see any specialists without a GP's consent...the only doctor we're currently waiting to see is her GI specialist. Any advice??
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