Our doctors are giving up! What do we do?

[Anonymous]

Well, my son has severe reflux and has been on many different meds and formulas. His GI doc was so “gung ho” about trying to find something or some way to help us and, about a month ago, he did an endoscopy to get a little more insight and to take some biopsies. WELL, here is what the COPY of the letter he sent to our pediatrician said….

“This is a brief follow up note on Robert who has recently been evaluated by upper gastroentestinal endoscopy because of his ongoing vomiting despite previous treatments and his current Prevacid regimine. The esophagus, stomach and duodenum were all normal. Thus, I believe this baby has uncomplicated gastroesophageal reflux. He needs ongoing monitoring particularly for weight gain. Hopefully, he will ultimately outgrow these symptoms. I see no further strategies for pharmacological management at this point.”

I don’t know WHAT to do now. It sounds like he’s giving up after he told us what a “terrible” case our son had and that he “probably wouldn’t grow out of it and, if he did, would probably get it back at age 4-5”! I feel like crying because I counted on the “experts” to help us and now they are giving up. I don’t know where to go from here and I feel like I am depriving my son of fluids because that’s the only way I can keep food in him is to not give him fluids because that’s when he has the bad reflux and brings everything back up! It’s so sad and sometimes I feel like he could feel bad because I’m not giving him enough to drink. I just don’t know what to do. Can anyone help???? Thanks in advance!

[Anonymous]

Start searching for another doc. or a ped that will really listen to your concerns. Is 15 mgs. of prevacid enough? Mine is on 30 mgs. and doing much better. We really thicken up her milk with simply thick and oatmeal, so it does stay down better that way. We went through 3 gi docs until I found one that was reccommended by a mom from this board.

Also, is he mspi? Ryann went through a time with the nutramigen and alimentum because the milk proteins built up. I though it was the stomach flu but it was just alot of spit up and diahrrea from that issue. Things got much better on day #6 of neocate. Ask you old gi for a couple of cans to get you started if you decide to switch. And you may have to thicken extra because it is alittle bit more watery than alimentum. Also, we mixed the two formulas for a while transitioning to neocate. Hang in there!

[Anonymous]

lanie, since he has no damage or inflamation, it means that the meds are doing their job, which would be why the ped gi doesn’t see a need to change anything with his meds. he did recommend continued monitoring, especially his weight. uncomplicated reflux is reflux that has no complicating factors such as esophagitis, aspiration, hiatal hernia, allergies, etc.

[Anonymous]

Lanie,

I had the EXACT same issue with the docs here at Childrens. Thats why I ended up going to Cincinnati for a 2nd opinion. I would definitely suggest that. Did this doc mention anything about doing a stomach emptying scan? Alot of times slow motility can cause vomitting. My doc here would not even consider doing any other tests except for the endoscopy. After the results came back normal from his scope, the doc pretty much brushed us off and told us we didnt need to come back. Again, thats why I went to Cincinnati. If your interested I can give you a couple names of some docs down there.

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