Thank you for your response. Ava is in the 1st Steps program here in Indiana and she IS progressing. She has been showing a desire to MOVE just recently and is frustrated that she can't or that it hurts. The physical therapy is helping and we managed to get her sitting though she is very stiff. She has recently began loosening up but she woke up yesterday with torticollis again (it always happens this way, she wakes up "tilted") and is having problems with balance. It seems that if we get the torticollis under control her motor delay would improve. She went to her gastro doc who suddenly seems to FINALLY be LISTENING to me and showed some concern about the torticollis and suggested a probe to see exactly how much she is refluxing and also a swallow test to check on her gag reflux (it's horrible). He said that torticollis CAN be reflux related and said we may be looking at surgery to correct both the torticollis and the reflux if the genetic appt. checks out normal. He also agreed with Ava's ped. that there may be something genetic going on but says she appears just fine cognitively but that there are some genetic disorders that can cause reflux and torticollis. I've been very frustrated and 1st steps seems just as confused and frustrated as I am but have been helpful in giving me the right questions to ask and calling Ava's ped and passing on their concerns with her torticollis and the fact that it is reaccurring. The ped. passed this on to gastro doc and today I didn't leave feeling like the appt. was a total waste of time. SO, hopefully we will get this straitened out now! Thanks again!
Q: response to Jan's response to my question about torticollis being gerd related or genetic disorder
Hello Ava's Mom,
Thank you for the follow up message. I am glad you are involved in the 1st Steps Program. It sounds just like the type of program I worked in before I had kids with reflux! I know they will do all they can to work on her muscle tone and help her to move. That is so important.
I am glad the GI doctor is looking at causes for the torticollis and swallowing problems. Like I said in the previous post, back arching and torticollis may be a symptom of Sandifers Syndrome. Sandifer S. occurs when a baby or toddler arches or turns to the side to try to manage the pain of a reflux episode. Often medication and other treatments will reduce or eliminate the symptoms. So the doctor probably wants to look at the acid production and see if that is causing at least some of the arching and torticollis.
As a parent, I know it is frustrating when it takes so long to get answers and find the right treatment plan. It can takes weeks or months of appointments and tests to diagnose and treat reflux. I am not a patient person and I always want answers right away. None of this wait and see stuff. With my daughters, I found that I needed to be very organized to help the doctors figure out the cause of the problems. I made sure that I kept a notebook of her daily medications and symptoms, appointments, tests, test results and any other info. I also asked for a copy of all of the medical reports, blood tests, ER reports, clinic visits-the binder became rather thick. It was so useful at times. A doctor would ask something and I would say, let me see, here is the report for the doctor. It saves a lot of time and duplication.
So keep in touch and let me know what you find out from the testing.
Jan Gambino
The Reflux Mom
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