What next? Reflux/milk protein intollerance/corn allergy, etc..

azdcpa0912 · January 2013

I feel like I am the only one fighting to help my son feel better, and am at my wits end. I was hoping that there is a mom or two out there that (unfortunately) has gone through something similar and can offer support/advice, or give me hope that this will pass.

I was only able to BF for a few short weeks, and around one month old my son started on formula. He first took Enfamil Infant, and has what seemed like excruciating gas pains. He also showed signs of reflux, and started on Zantac. Nothing improved, so I switched him to Enfamil Gentlease. It seemed that this helped for about a week, and then he was back to non-stop crying (sometimes hours and hours on end) and in terrible pain until he passed gas. I was told that he had 'colic' and that his digestive system was immature and he would grow out of it. I couldn't handle seeing him in distress and my pediatrician didn't seem to be worried about his pain, so I took what I thought would be the next step and changed him to Similac Alimentum RTF. It seemed that this formula was a lifesaver, and my LO stopped his hours long crying episodes although he was still obviously uncomfortable the reduction in crying had us satisfied that Alimentum would help us to get through this time of 'colic'. Weeks passed and it killed me to see him smiling, trying to play and learn, and then have a painful attack with awful screaming. I then went back to the ped who changed him from Zantac to Prevacid. I honestly haven't seen a difference in his pain level. He never actually spits up, so my ped suggested we were dealing with silent reflux. (He takes 4 mL of the 15mg/5ml compounded Prevacid). My baby is miserable about 90% of the time he is awake, and there is often no consoling him.

My son is now 5 1/2 months old, and is still in excruciating pain, and I know this is NOT colic. This is not normal, and it is absolutely awful to see my little defenseless baby in so much pain. I have a pediatric GI appointment set up but they can't see him until the 30th. I wish I had seen a GI specialist earlier but my ped kept assuring me that this would all stop. First at 3 months, then 14 weeks, then wait until 4 months, and now I just can't wait any longer.

I have purchased Elecare, as I think this is my next appropriate step. I hope to see an improvement soon. We are so confused because LO's BMs are normal with no blood in the stool, he doesn't throw up or spit up, but he is just miserable.

Has anyone gone through ANYTHING similar? I feel like no one is giving us answers, but I don't know what type of testing to ask for? I can't let my LO live like this any longer. Please help!!!!

ToastieSimons · January 2013

If your child is corn intolerant or allergic, else are is going to make him miserable. It's loaded with corn syrup. Alimentum rtf is the only corn free one. Your son sounds exactly like my oldest. Literally. Is he constipated? Have you tried thickening his formula? Introducing solids? My son only started to improve with 15mg Prevacid and thickened formula. He didn't stop screaming until 10 months but it started getting better at 8 months. How is his sleep?

Rachel Sonnier · January 2013

Have you tried Nutramigen? It was a life saver for us!! DS was pooping blood at 4 weeks, so the ped had me stop BF and started him on the hypoallergenic formula. DS didn't do very well on alimentum (even though I thought they were supposed to be the same), but he stayed on nutramigen for 18 months. He stayed on meds for silent reflux the whole time although he never spit up (although after they scoped him, they said it was not reflux). He was finally dx with milk protein and seafood allergy by a ped allergist.

I hope that you find some relief for your son soon. I know that is excruciating.

abs05 · January 2013

I'm so sorry. You basically described my daughter's first year of life.

When she was born the nurses in the hospital told us that she was one of the loudest babies they had ever had. That should have been our first clue! LOL. When we got her home I tried BF'ing. She would latch on fine, then immediately latch off, scream in pain, and repeat. For hours. And hours. All day. Every day. Eventually I stopped BF'ing because I wasn't producing enough anyways. Once I finally realized this level of pain wasn't normal we got our reflux/mspi diagnosis. Started with Zantac...it did nothing. Eventually a combination of Prevacid/Bethanacol worked for us. For formula, we tried all of them....Alimentum RTF was the only one that worked because it is the only formula that doensn't contain corn syrup.

Once Maddie could sit up she started getting a little better. She was still pretty miserable with life though until she started crawling at 10 months. Now at 2? She is super happy, super social, and completely healthy. She still has all of her allergies. I don't see her outgrowing them anytime soon, but maybe I'm wrong. She did outgrow the reflux, but it happened at 19 months and not a year like I was promised. Moral of the story? "They" are wrong a lot. I was told colic always ended at 4 months...alleriges are always outgrown at 12 months...blah blah blah. Nope. You learn to advocate for your child though and trust your gut. It has served me well. Good luck to you! I remember how helpless I felt. That first year was horrible and it felt like no one understood how I felt. We survived though, and we are great. You will, too.

grbnik · January 2013

This group may help...

https://community.babycenter.com/groups/a3937145/surviving_reflux_dealing_with_the_other_colic_reflux_mspi_an

smiling76 · January 2013

That's how DS1 was--only I didn't realize the bigger issues until closer to 12 months--and was still BFing. I was a first timer and the docs never told me anything--just said "colicky"--well, ended up he was allergic to basically everything! He had allergies to wheat, eggs, dairy (all dairy), peanuts and tree nuts and soy. It was horrible. We immediately put him on rice milk (enriched) and changed the diet and it helped very much.

I know DS1 was also very gassy--- so gas drops were a must. We also bicycled his legs a lot and truthfully, would "fold him in half" to really help get the air out.

He also had reflux---basically nothing made it go away--just was more tolerable.

GL to you!!

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What next? Reflux/milk protein intollerance/corn allergy, etc..

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