Lost, Bewildered, All of It

[Anonymous]

My “sweet little boy” has become Jekkyl and Hyde!

We’re trying desperately to get to his scope and ph study Thursday but it seems like we’re travelling down hill at breakneck speed.

The GI wanted us to drop his Prevacid to 15 mg a day (two 7.5 doses)…I’ve kept it at three 7.5doses (yeah, like I’m gonna make THAT mistake!) but now we’re really starting to see the “signs” of MSPI…including poopy diapers that are more slime than poop. 🙁 🙁 🙁

He just screams and screams…then he’ll look at you and giggle and smile…then scream some more and it’s breaking my heart.

I convinced hubby to let me go buy the Alimentum and Beechnut brand cereal (for thickening)…but you know how that goes, you gotta go slow with the change to something that tastes that bad!

I’m terrified of his scope and ph study, afraid to let them do anything to him…and then I want SOOOOO badly to maybe have some answers to what’s going on so we can help him…I’m an emotional mess and now I’m trying to plan for my daughter’s birthday party this weekend which has me even MORE stressed because I feel like we are constantly running around doing things last minute because all of our energy is spent trying to keep Xavier from screaming.

I don’t even remember if I had a question or not…

[Anonymous]

Glad you didn’t lower his prevacid dose!

I cannot remember what formula he was on before Alimentum? The slimy poo def sounds like intolerance! Landen was miserable with his reflux until his MSPI was under control and it took Neocate for him. We were fine on Alimentum for about 6 weeks and then the blood and mucous returned -BAD! some babies do just fine on alimentum though.

I am sorry you are under so much stress! It’s so hard keeping it all together and taking care of the older one while handling a refluxing baby. I hope you get some answers with the scope & ph probe!! **HUGS**

[Anonymous]

Thanks Jill…

He’s been on Isomil Advance since he was about 6 weeks old when we first started trying to figure out why he was throwing up all the time. Since the GI guy said that he’s almost sure it’s MSPI (too) that we’re dealing with he brought up the switch to Alimentum (or one of the other hypoallergenic ones) so I figured we might as well get a headstart on it…sure can’t hurt.

I was at the grocery store today almost in tears because I was reading the back of everything and realizing how much “milk” and “soy” you see! I feel like this poor kid’s not EVER going to be able to eat! LOL

I think I read somewhere that squash isn’t the best thing for him to be eating??? The orange/yellows are ALL he eats for solids and between carrots, sweet potatoes and squash I at least feel like he’s getting SOMETHING to eat.

What else can I be feeding him?? His GI guy would like to see three “meals” a day, which made me laugh with the dosing of his Prevacid! He eats a bottle every three hours as it is (about 3oz at a time) and then to try to fit in meals AND get the dosing of his Prevacid spaced out correctly is like playing chess. Good thing I do well under pressure????

[Anonymous]

My Dr. told me to try the Alimentum RTF because the RTF form had no corn in it (she was on the Nutramigen before that and I thought she was doing great) and she thought maybe my daughter had a corn allergy too. She was acting like a maniac in the Dr.’s office so they thought that maybe a new formula would help??? I hated the Alimentum for her. It made her so so so gassy and screwed up her BM’s. I put her back on the Nutramigen and it is so much better for her. So maybe you want to try the Nutramigen first. I found it much better for my lo.

[Anonymous]

How much formula does he seem to be drinking per day? If he is having bad mucousy diapers, I would be tempted to significantly cut back on solids along with switching to Alimentum. The gut usually produces mucus when it is irritated and inflamed in order to try and protect itself, so something he is eating and/or drinking is definately affecting him negatively. Don’t worry about the 3 meals a day just yet – just concentrate on getting his gut healthy! My daughter Paige has severe food protein intolerance issues, and at 17 months old she still isn’t getting 3 “meals” a day and get the vast majority of her nutrition from Neocate formula. Some kids take much longer than others for their GI tracts to be able to tolerate proteins. Don’t rush into foods because “most” babies of the same age are able to handle them. There is no sense feeding them something that will cause them GI distress and inflammation, just to get food into them. It can actually do more harm than good.

If you still want to do some solids, perhaps stick with rice or oat cereal (Beechnut brand is great). Pears are one of the best tolerated fruits as well. Here is a link with a little more info:

https://www.infantreflux.org/forum/forum_posts.asp?TID=9208

Good luck, and let us know how things go.

[Author]

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