Short improvement from Nutramigen?

[Anonymous]

Hello all, I have been lurking on these boards since my son was diagnosed with reflux at 4 and 1/2 weeks old. He’s now 8 weeks and tonight I am in tears and need to hear others’ experiences.

First I want to say I have a lot of faith in our doctor, she is a GI specialist within our pediatrician practice. She diagnosed him immediately with reflux when I showed up in her office out of my mind with worry because he had barely eaten or slept in 36 hours. She prescribed Zantac .9 ml 3 times per day and told us to get regular adult Maalox and give him 2 ml up to 4 times per day for pain. I have read on these boards that only Mylanta without aluminum should be given – why is that? The Maalox does contain aluminum.

My son has silent reflux, he has only spit up about 3 times in his life and two were when he was one day old. His symptoms are screaming the moment he wakes up, frantically trying to eat from the breast or bottle, and then after a few swallows screaming and pulling away, arching his back, kicking very hard with his legs and clenching his fists. He make terrible faces, sticks out his tongue, and has bad breath when he’s screaming. He often wears himself out and spends the next few hours half awake whimpering and sometimes crying.

We saw huge improvement from the first day on meds but he was still not 100%. Then after about a week he began to gradually get worse. When he was diagnosed he was getting mostly breastmilk but also regular Enfamil about 2-4 oz per day. After he was diagnosed I completely cut out the formula for a while but I don’t think it made any difference. Then this past Saturday I bought a can of Nutramigen. At first he hated the taste and cried every time he ate. Then we began to mix it with breastmilk which he seemed to tolerate well. He also seemed to improve dramatically! Within 48 hours he was a sweet, smiling, calm, happy baby. He also slept for 7 hours! The longest he ever slept before was 4!

I’m here tonight because the improvement seems to have stopped very suddenly. This afternoon he got a bit fussy while we were out shopping. We came home and he just continued to get worse by the minute, until he was screaming and arching his back just like he used to. Has anyone else experienced this brief improvement that completely vanishes!? I am physically sick right now seeing him back to being in pain when we just experienced such a short time with the happy baby we would have if he wasn’t suffering. Is there anything I can do? We are decreasing the amount of breastmilk we add to the formula gradually and I have already cut all dairy, soy, and caffeine from my diet. My doctor gave me a rx for Prevacid and told me I could fill it if I felt like we were not happy with the Zantac/Nutramigen combo. She also gave me instructions for keeping him on Zantac for the first few weeks of Prevacid. I don’t know if I want to add more meds right now – I just want the improvement back that we had for the past two days!

Please share your advice and experiences with this. I cannot believe we had such a drastic improvement and then it completely disappeared in one afternoon. Thank you!

[Anonymous]

I am so sorry that you and your LO are having such a hard time!!

I don’t have much experience with reflux meds, my middle son had reflux but it was easy to control with Zantac.

However, my third son is 8 months old and has MSPI (milk/soy protein intolerance). Have your doctors said anything about the possibility that your LO is intolerance to dairy/soy? Especially since you’ve seen improvement with Nutramigen it’s very likely that MSPI could be the problem here. And MSPI can contribute (and sometimes like my LO cause reflux). My son also had reflux (the third one) that disappeared once I eliminated dairy/soy from my diet. I am BFing him and have had to cut out dairy/soy/eggs and tomatoes from my diet because they were causing mucuosy/bloody stools, ezcema, and reflux.

THere is some great information here on this forum you can look over, but if you stick with formula I would consider switching to an amino-acid based formula like Neocate or EleCare OR continue nursing but go on an elimination diet. I will warn you that it will take time when you’re eliminating foods to see improvement. It took my LO 4 wks to be completely symptom free. Hopefully it won’t take you guys that long, but I just wanted to warn you so you don’t lose hope and give up. You can still BF a MSPI baby, it just takes some work on your part.

It is possible that the proteins that are still in Nutramigen are starting to bother your LO and that’s why his symptoms are returning. If you continue with formula and switch to an elemental formula (Neocate or EleCare) you’ll probably need to wean him onto it by either mixing it with Nutramigen or your breastmilk.

I hope I was helpful!? Good luck, and let us know what you decide and how he’s doing!

[Anonymous]

Hi! Thanks for your response. I just realized last night’s post is sort of rambling and confusing – I was really tired and distressed!

Basically our pedi does suspect MSPI but we just don’t know for sure right now. I have stopped all dairy and soy, as of this week. I was hoping that during the two weeks it takes for my system to flush out the dairy and soy proteins we could use Nutramigen and give him some relief. I am completely baffled by why it helped him SO MUCH for 2-3 days and then we went right back to the old behavior!? After seeing him calm and happy and then back to constant pain I cannot stop crying.

I really want to keep breastfeeding but he is in too much pain to nurse and I keep missing pumping sessions because he is screaming for hours at a time. My milk production is already down, and the fact that I’m exhausted, crying all day, and barely eating is probably making it worse.

We were hesitant to start him on Prevacid because the Nutramigen seemed to completely cure him, but after seeing him in pain last night we decided to start it today.

I just don’t know what else to do but feel like I am doing something wrong. I can’t stand seeing my baby in constant pain any longer.

[hellbennt]

the meds will stop the pain. the formula (nutrimigen) may or may not do it – he may ‘need’ neocate or elecare OR he may do just fine if you modify your diet. Once you decide about diet (formula or breastmilk) and you get baby on a PROPER dose of PPI then you should see improvement. oh and everyone says mylanta bcse there’s a variety of mylanta (the store-brand equivalent if you can’t find actual mylanta) that doesn’t have aluminum- folks figure aluminum may not be a great ingredeint for a baby…

[Author]

Posts