Lost…so very lost…

Hi there! Sorry to hear your frustrations, but I am going through a similar situation and I can understand about seeing improvements for a couple of days then shortly there after it is back to square one.

My son was born premature and I realized he had Acid Reflux because after his bottle he would arch his back a lot and start to cry. He never vomited, but when he did spit up (not a lot of that either) he would start screaming like someone was doing bodily harm to him. We have been on several (5) different formulas most of the Simalac and the last attempt was Elecare $36 a can, ouch! The ped told us to thicken the formula with Thick It or rice cereal because he was showing signs of aspiration. We have done all the precautions (keep upright for at least 30 min after feeding, sleep upright, on Prevacid Solutabs) and still he is having irritation issues with formula which also leads to the Acid Reflux. He is very hard to burp, another thing to help with Acid Reflux. He hates the bottle to be taken away from him, this leads to a short burp session of him crying and thrashing around until you just give up in trying to burp him and just put the bottle back in his mouth to calm him. His sleeping habits are pretty good, but the poor thing has never slept in his crib, instead he is in his car seat and we put the car seat in the crib.

We took him to the G.I doctor and she said “yep, he has Acid Reflux” No really!! She said since he was in the 50% range for uncorrected age, which is a good thing, that what we were doing is just fine and this is just going to have to work it self out which could be up to a year +. At this point I looked at her like she had something coming out of her head and thought to myself, “this lady is crazy if she thinks I can go through this for a year”, but then again she knows what she is talking about and I should be grateful that my child dose not have a more sever problem, right?

I decided to take things into my own hands and came to realize that everything I tried with him had a high corn base to it. All powder formulas have corn products in it and of course the Thick It is mostly corn. I did read that although rare some babies can’t process the corn starch just as much as they can’t process milk protein. After reading this I put him back on the Simalac Aligmentum ready to feed liquid and rice cereal (totally taking corn out of the equation) and it seemed to work beautifully for about a week and then came the trouble once again. He started to become really gassy again and got constipated really bad a couple of times (rice cereal to blame) so now I am faced with taking the cereal away and just hope that the pain involved with the Acid Reflux when he spits up stays controlled on the Prevacid (1/4 tab 2 times a day) or should I keep him on something that is causing his gas pains and constipation but keeps the spit up to a minimum. Each situation is very heart breaking since you feel so helpless watching your child go through this. I too find myself at a dead end a lot and not knowing what path to go down next. I have been told several times to stop switching him up on feeding combinations and to just stay with one thing, but I feel I am doing him harm by keeping him on something that the end result is pain. I am very lost as well and feel that there should be something that can give my son relief, but in the end maybe it is something that will just have to get better in time. My goal is to just try and keep him as comfortable as possible with different techniques and hope that my husband and I don’t go crazy as the end result.

Lucysmomma, I see that you are on compounded prevacid? I would try to get a different for like the solutabs to see if that helps. Compounds are rarely made correctly (this is coming from the wife of a pharmacist) and they tend to loose their effectiveness very quickly (I believe after 2wks when they give you a 4wk supply). Have you tried giving her the mylanta and does it seem to help? With silent reflux it is so much worse b/c they get the “burn” 2x on the way up and then again when they swallow it back down, you may want to research carafate to see if that will help with the healing as well. Take a look at Laura’s groupie intro under the introduce yourself section there is TONS of great info there. HTH.

I feel that if the child is feeling any discomfort from the refluxing then it is not yet manageable. Right now mine still gets break through acid pain and that means the medication is not quite right. The reflux part will be there until they out grow it, but the pain part is what you need to manage. We just started him on a higher dose of the Prevacid and we will find out if that will work. If not the doctor wants to try him on Prilosec. We shall see what happens.

Hi!