To Jan, RE: GERD and Torticollis

Jan,

Thank you for your answer. It was actually his PT who initially suspected the tilt and reflux correlation.  He was tilting to both sides and it was always more pronounced after vomiting.  For a long time he could not do tummy time or sitting b/c he would vomit because of the increased pressure, then cry inconsolably, then the tilt would be worse.  We have actually not done a pH probe.  It was suggested when Matthew was only 3 months old, but he was having surgery for 3 hernias at the time, and we chose not to do both.  Then we changed doctors and were told that it was not necessary.  One of the doctors said that if his milk smelled sour when he vomited then we know that the stomach was still producing acid.  We did later do an upper GI, which was normal. 

A little more history: We increased his medication, Prevacid, at the end of November, to the 30 mg dose.  In December he was extremely ill and we had to feed him liquids for a week through a syringe.  He was very close to needing to be hospitalized.  He did not have any solid food during that time and that was the longest time that he had been straight.  When I reintroduced food, I did one at a time and found that he tilted for several days whenever I gave him fruit, excluding apples and bananas.  So I changed his diet.  He has been straight more than not from December until the end of May, beginning of June.  His gross motor skills took off and I thought we were out of the woods.  However, now he is tilting again.  He is also much more cranky and throwing severe temper tantrums.  So I'm not sure if he has outgrown his dose or if something else has changed. 

We saw a neurologist who said nothing other than it was related to the reflux and not to a neurological disorder, but he didn't do any formal testing, other than physical examination stuff.  He said that Matthew did not show any other neurological signs.  We were not fond of him and are currently asking friends and colleagues for new referrals to look into this avenue again.

We also saw a pediatric allergist who did a food panel (the sticks in the back) and everything came back normal.  We are currently in contact with Sage Medical Labs in Florida about doing a delayed allergy test.  We just found out yesterday that it will cost us about $1000 out of pocket and are going to discuss the option with his physician tomorrow.

As far as the brand of medication, Matthew has been on Zantac, Axid and Pepcid, in addition to the current Prevacid.  At one time, the doctor also had us giving him 14 ml of Mylanta a day.  For a short time he was also on hycosamine (sp?) which was supposed to help coordinate all of the muscles.  We have not tried Prilosec b/c once on an increased dose of Prevacid he seemed to be doing well.  

We have seen 3 gastroenterologists, a neurologist, feeding doctor, ENT, hearing tests, 2 PT's, I feel like you name and we've been there.  It has been a very long and trying road in a short life.  Most doctors are not sure what to make of Matthew because he tilts to both sides.  Most, I think, think that I'm crazy until they see if for themselves.  He seems to be a very unusual case. and I'm to the point where I would go anywhere in the world to help my son.  I can't believe he is 18 months old and we are still battling this.

Anyway, thank you so much for your assistance.  I'm sorry that this is soooo long but it isn't often that I get to communicate with someone with experience and knowledge!

Thank you!  Any other ideas??

Cindy