lstaylor

Sorry for paging you right above sweaters page, but I feel bad for always hijacking her posts 

After we chatted last night, I couldn't fall asleep thinking about you and your boys.  I am so sorry that you are going through this.  First, I want to say that I hope you know that I certainly don't put myself in anywhere near the same category as you and sweater and the other extreme GERD MoMs.  My S had terrible reflux but has always been a great weight, so I just wanted to be clear that I really can't begin to understand your frustration with the reflux.

Second, I just can't believe that the dr's haven't already tried you on a specialty formual!! That is what was keeping me up last night.  I know for my guy, I thought that it was totally behavioral food avoidance due to the pain.  It was taking at least 2 hours to feed him and that was just because I would fight him for an hour then give up, put him to sleep then dream feed him.  I really did want to slap the GI when he suggested trying a different formula for the night feed (he is on BM the rest of the day) because I thought it was useless.  Well, the third formula did the trick and it has been so much better. We still have the occasional night where he struggles but for the most part it is so much better.

How did they do when they got BM?  Where you on an exclusion diet?  I know that the pedi thought my boys had a milk protein intolerance so I eliminated dairy and eggs, and then the GI had me eliminate wheat.  He said that a common cause of reflux being worse is food intolerances.  I really don't think the wheat elimination helped anything at all for us, but thought I would mention it.  I am rambling now, but to sum it up, with the first formula, I was on an exclusiong diet but was giving him a dairy based formula (At my pedi's suggestion) and he took it no problem for a month before refusing it so I thought that the GI was crazy to change it.  We changed to an amino acid based formula (EleCare) and it got worse, we changed to Neocate and things have been much better.  I guess my point is, maybe (and I know this is a slim chance) but maybe it is that they really can't tolerate dairy at this point or maybe they just hate the flavor.  I know that probably sounds stupid with all that you have been through, but those two things seemed to make a difference for us. 

And again, I hope I am not insulting you because I know know know that I am no where near in the same position as you with the reflux, but thought I would share what happened with us.  Hoping you are getting some answers soon.