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

Hi, My son sounds EXACTLY like your son.  He was diagnosed with congenital muscular torticollis at 4.5 months and then when the head tilt kept switching sides, I took him to get a second opinion and they mentioned sandifer's syndrome. He is on 7.5 mg of Prevacid a day (which he has been on (same dose) since about 5 months old) and is still tilting. (None of the Drs. want to go up on this dose.

We are pretty convinced that food allergies are playing a part in this, undoubtedly cows milk and soy and now I think wheat too, as the head tilt has started after pasta twice in the last month. I stopped nursing him and started Alimentum 2 months ago and he has had several tilt free episodes lasting up to 5 days.  SImilarly, when the suspected offending agent hits, it's usually about 14 days after that he is tilt free. We are recently went through ophthalmology work up which was negtive, neuro work up which was negative and he is followed by a GI Dr.  

I just wonder how long this will last?  I don't want him to be in pain and I just want him to be a normal little boy.

How is your son now?