MSPI and Reflux - Finally saw GI Specialist

azdcpa0912

Well, I finally found some answers, I believe. The GI specialist we were finally able to get in and see believes LO has a major MSPI and that the RTF Alimentum he has been on has kept it 'at bay' but the constant crying has been due to him being so uncomfortable - he basically can't digest the food he's been eating and has been having an internal reaction.  This is EXACTLY what I told my ped I thought my little guy was going through, but they were adamant that their other MSPI babies stayed on Alimentum and 'got through this'.  I don't want my little guy to just get through this time period (hopefully this will pass by one years old).  I want him to be comfortable and happy!

Anyways, so we are one week in to an Elecare trial.  These first days have been awful - it has seemed that this formula made things worse - worse gas, crying, diahrrea, everything - but I was told it could take between 2-6 weeks for my LO's intestines/gut/esophagus to heal.  There have been so many times I almost went back to the Alimentum that I know he'll eat, but no matter how hard it is right now I know I need to stick this out.  I was told that reflux flares up horribly and the gas pain intensifies during the transition, and it is almost too much to bare since he was already in a lot of pain.  He's now on Nexium and Zantac, but we were told that his painful reflux could be due to his protein intollerance and may get better as he improves on Elecare.

We had a barium swallow test/xray yesterday and fortunately everything looks like it is working properly, and I was lucky that LO did so great during his appointment - I had heard awful things about this test so I thank God he was calm and got through this without any additional stress.

This has been so hard - my LO has been on/off in incredible pain and I hope we get the results we're praying hard for.  There have been times that LO has stopped breathing for periods of time because he was breathing painful acid into his lungs/esophagus.

It's hard to stay positive but I have to hope that we're on the right track and that my little guy can start to enjoy his early months. 

ironadxn

On mobile, so going to be short...
I am so sorry you are going through this. My son also has MSPI and is on elecare. He was EBF until almost 3 weeks ago now. His inconsolable crying has pretty much ended and his stools are never bloody anymore. We're also down to just one BM a day instead of after every feeding. They are still slightly liquid, but getting better.
Best of luck to you and your LO. I'm glad you finally are able to start a road to recovery.

Merried_2008

We had to go to a ped gi specialist for a year with DS. He was on one of the special formulas too. He is just over two now and can eat anything. No more meds needed! As soon as everything gets healed in there you'll see a big improvement. I promise there is light at the end of the tunnel. I've been there. It's a rough road. If you want to pm me to vent.

azdcpa0912

mandz129:

On mobile, so going to be short... I am so sorry you are going through this. My son also has MSPI and is on elecare. He was EBF until almost 3 weeks ago now. His inconsolable crying has pretty much ended and his stools are never bloody anymore. We're also down to just one BM a day instead of after every feeding. They are still slightly liquid, but getting better. Best of luck to you and your LO. I'm glad you finally are able to start a road to recovery.

I'm so happy to hear that Elecare worked for your son!  I'm holding out hope still but it is SO hard.  Did things seem to get worse at first with the Elecare, did he have painful gas/hard tummy issues?  Also, how did you get him to eat it?!  I'm having so much trouble getting him to eat!!! 

azdcpa0912

Merried_2008:

We had to go to a ped gi specialist for a year with DS. He was on one of the special formulas too. He is just over two now and can eat anything. No more meds needed! As soon as everything gets healed in there you'll see a big improvement. I promise there is light at the end of the tunnel. I've been there. It's a rough road. If you want to pm me to vent.

I'm so glad to hear that your LO can eat everything now, that is very comforting. I would love to know how long it took your LO to be 'healed' from these special formulas? I just don't understand how it can get worse before it gets better and I"m questioning everything the doctor has told us!!!!

ironadxn

Unfortunately getting him to eat it was HARD. I cried, he cried...he still rarely drinks more than 20 ounces a day. And a lot of the time he will only drink 2 ounces at a time, which leads to 2 night feedings. Because of his low intake, the GI wants us to start solids as soon as his stools are normal.

amaite

We just came off a 2 week trial of Elecare on Monday. DS had had very mucousy and green stools and then wasn't gaining weight back in November, so we saw the GI, he confirmed there was microscopic blood in the stools, and I eliminated dairy and soy from my diet. Stools stayed green and mucousy and then just a couple days before our follow up GI appointment I started seeing small streaks of blood. So I eliminated more food from my diet, and in the meantime we started a 1 week Elecare trial. Things got worse that first week...more blood in his stools, very fussy, vomiting, and then a spot of blood in the vomit. They told me to switch from Zantac to Prilosec and then do one more week of Elecare. DS stayed fussy, stools stayed mucousy, and I'm not sure about the blood because the stools were much darker which made it hard to see if there was blood, so as of Monday we are back to EBF. We'll see what happens. I'm hoping one of the additional foods I eliminated will do the trick. Despite the stool problems, my baby had seemed happy before switching to Elecare. I know that could have been due to the change in stool texture, the awful taste, or something else, but I totally know how you feel about things getting worse and it being hard to continue. I hope that your LO will do well with the Elecare. I know two weeks may not have been enough, but it was enough for me since things didn't seem any better and DS seemed miserable.

 Also, DS was much more willing to take the Elecare when it was cool.