GERD and Torticollis
My son, 18 months old, was diagnosed with GERD at 6 weeks of age and Torticollis at 8 weeks. We started medication for the GERD and physical therapy for the tilt. In time, we discovered that he does not have muscular torticollis, but that is related to his GERD symptoms. He tilts to both sides and it is very inconsistent. I've actually found that mainly fruits will make him tilt. For example, I gave him raspberries a couple of weeks ago, and he tilted for 10 days after that. It is not like a Sandifer's Syndrome where he tilts for only a couple of minutes, he will tilt continually for weeks. He has been discharged from physical therapy, everyone says it's related to his reflux. But yet he continues to tilt. He takes 30 mg of prevacid a day via capsules mixed in applesauce. We are very frustrated and not sure where to turn from here. Any suggestions would be very helpful.
Thank you!!!
Dear Cindy,
Thank you for posting your question. It is certainly a less than common presentation of reflux. However, after raising my daughter with reflux and every mystery symptom in the book, I know that anything is possible!
I wonder how the doctor determined that the head tilting was related to the reflux. Did the doctor do a pH probe and monitor acid levels during one of the head tilting episodes?
I wonder if a neurologist has examined your son. It is important to rule out seizures that may be unrelated to the reflux or foods he is ingesting.
Next I wonder if you have seen a food allergy specialist.
Some doctors will do a very strict "elimination diet" to rule out allergies and look at symptoms.
Last, a few children react to the PPI medications with headaches and other symptoms. I wonder if the brand of medication has been changed or if the doctor had him take a medication holiday.
I know this is a great deal of information to think about. Let me know what you think of all of these ideas. Remember, I want you to talk to your doctor about these things and see what makes sense for your little boy.
Be sure to give me an update when you get a chance. It helps me to know "how the story ends" so I can help the next reflux mom!
Best wishes,
Jan Gambino
The Reflux Mom
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Hello,
I saw your questions on gerd and torticollis. My son's symptoms are
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Cindy,
I sure hope you get this letter! My son is 27 months now and I can tell you his symptoms are to a t of what your sons are. My son was born a full term baby but from the day he was born I could tell something was wrong. I noticed from across the room I could see him breathing really fast...sometimes in the 70s or 80s. I told the nurses..finally one nurse listened and counted his respirations for a full minute. He was breathing in the 80s. They checked his blood and no infection so they sent him home. His main problem for the first month was breathing rapidly. It scared me to death. I took him to the Dr and ER probably 3-4 times a week for a month. The Dr wouldn't listened to me. When I would take him in of course it would slow down to 60 and she would just say some babies breath faster than others. At about 4 weeks old my son started choking, gagging, and turning blue when he ate. I was told he had severe acid reflux but not sure why he had rapid breathing. Then one Dr would tell me rapid breathing was from his acid reflux. It was a mix of different answers. I'd have a Dr tell me his lung xray looked fine and then another Dr tell me no this film shows aspiration. But to shorten this he had acid reflux and then at about the same time started to get the head tilt. His head stayed tilted to the right side only. I got mixed messages from every Dr. He needs physical therapy..no he doesn't. Well, he got physical therapy anyway. I don't think he really needed it. I say this because I noticed when his acid reflux got better his head tilt went away. I think he was about 10 months old when he no longer had a head tilt. His acid reflux pretty much is gone now. He is 27 months so it lasted a long time. He had anemia and eye issues from the tilt. It pulled down on his right eye.
I was told his head tilt could be from his acid reflux or it could be from trauma from birth. It is not tight so they assume it is from acid reflux. One Dr at Phoenix childrens hospital dx with him sandifers syndrome. He would also twitch and shake after eating. It is hard to know really the answer sometimes. My son was on reglan and zantac. Then switched to zantac and reglan. Then to prilosec when his breathing got better.
I hope this helps in some way. I just wanted you to know you are not alone. It was hard for me because no Dr really knew the right answer. What helped was video taping his episodes when he would tilt or have trouble breathing so they knew I wasn't crazy.
It gets better. The physical therapy did not work for our son though. I think it was probably a waste of time since his neck wasn't tight. It got better when his acid reflux got better.
Hope this helps, sorry I talked for so long
Jorgi
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