Well hello again, square one

[Anonymous]

Seems that I have been seeing a lot of this particular square lately.

The Upper GI yielded nothing helpful…okay, okay, so I guess it’s GOOD NEWS that they didn’t see any structural issues, but for some reason it feels like bad news!?!?! Perhaps this is a sign that I’ve lost it for sure this time….haha! It’s just that I would like an ANSWER or some sort of something, so that we can finally move forward. And here we are, back where we started. Really, I am at a loss here….what’s next for us? It seems we have tried every formula on the market, we’re maxed out on the Prevacid, Carafate seems useless to me, etc. I just don’t know what to try anymore. And I don’t expect to get any useful info from the GI, since I now firmly believe that she purchased her degree online somewhere.

I mean, really…what am I supposed to do here (besides for self-medicating with wine, as that’s my plan for tonight)????????

AHHHHHHHHH!

Johanna

[Anonymous]

Ok Solutabs made things MISERABLE for us. I know a lot of babies do fantastic on them, but they really made things so much WORSE for us. I would first try another form of prevacid for a week or so. Then, I would stick to just the Elecare as you are doing now and NO solids until everything else is under control. Months 4-6 were really bad for us and then around 7 things got better. Hopefully that’s were you are now, and better days are right around the corner…

Hang in there!!! Hopefully someone will have better/more advice…

[Anonymous]

Sorry to hear that things are still so hard. I think Ann Marie’s advice makes a lot of sense. If he has food intolerances or sensitivities the added ingredients in the solutabs may be bothering him, so another form of Prevacid may be the answer for him. Or, maybe you can ask to try Zegerid. While they are both PPI’s some babies do better on one or the other.

How long has he been on Elecare? This article explains that it can take MONTHS for some babies to get relief on an elemental formula, so maybe sticking with it will finally yield some positive results.

https://www.infantreflux.org/forum/forum_posts.asp?TID=6013&a mp;KW=misconceptions

I wish I had better advice and I hope things get better soon.

[Anonymous]

Hey ladies.

Actually, I have to update his formula history….we had to switch him off of the Elecare because he developed a rash all over his face and back from it (and the neocate too – we tried both). He is now on liquid Alimentum and it’s not the worst we’ve tried, but it hasn’t been miraculous either (he’s been on it for a week). I am going to start pushing to play with his meds….what other forms of prevacid are there?

[Anonymous]

Capsules which you open and sprinkle over applesauce.

Compounded which is a liquid. This is a good option because it doesn’t have to be given on an empty stomach / followed by a meal 30 minutes later, BUT you have to make sure it is prepared perfectly or it loses it’s effectiveness. http://www.marci-kids.com does explain this.

Packets – contains little beads….I’m not too sure how this is administererd. Laura’s intro probably explains it. Look for Prevacid 101.

[Anonymous]

I’m sorry that you didn’t get any definitive answers. I don’t know about Prevacid, but I agree that trialing the other forms of it would be a start. We are on zegerid and have had great success, so that is always an option too.

Hang in there and don’t give up!

[Anonymous]

this is how to get prevacid compounded:

https://www.infantreflux.org/forum/forum_posts.asp?TID=4505&a mp;KW=ppi

and i wouldnt use it for more than 2 weeks. meaning, it looses stability in about 14 days (this is what our pharmacist confirmed)

[Anonymous]

i am so sorry that you are in the same boat, but maybe you can rest your mind a bit and know its probably not a more serious issue.. i would also switch off the solutabs, the flavoring could be upseting him possibly, or maybe he will do better on a prilosec med, like zegerid??? couldnt hurt to try?

keep us update…. i will pray for u 2

[Anonymous]

We did every formula under the sun too. She did the best which wasn’t great on RTF Alimentum as well since it had no corn but it did have milk. If you want to try what Taylor is on is called Ross Carbohydrate Free Soy with Iron. You can only order it online or directly through Ross, it comes in little cans and you have to add water and mix in your own carbohydrate, in our case we use Brown rice syrup. This has been the best formula for her, she still takes it with goats milk, which I think is more due to the taste, since when we switched her she was a little older so her taste buds were more developed. This was our last hope with formulas! And prevacid was a no go for us, solutabs and capsules, it didn’t seem to work on her at all, she is on compounded prilosec and for some odd reason seems to work the best.

[Anonymous]

I’m so sorry you’re going through a rough time. I know how you feel- I used to hope that after every test or appointment there would be something identified that was small and fixable to get us out of our h*ll. It’s odd- you want the test to come back normal, but you want it to identify some way to make things better. We never did find our answer, and many others don’t either. I hope that you do find a way to make things better soon.

I’m sorry, but other than the rashes, can you remind me what his symptoms are?

[Anonymous]

Thanks everyone! i am going to speak with the GI on Monday.

Lori – Jacob had a rash when he was on the Elecare and neocate. Our GI recommended that we “change our air filters.” I ignored her. Once I took him off these formulas, the rash went away….besides for that he has the typical reflux symptoms (including Sandifer’s syndrome). His most frustratin behavior is that he refuses to sit, preferring instead to totally arch himself backwards. It’s crazy….he will launch right off of my lap if I am not holding him tightly. he is obviously still in great pain….

[Anonymous]

Poor baby. Good luck with the GI on Monday. Are you going to ask for another form of Prevacid, or for Zegerid?

[Anonymous]

I am thinking I may push to try the Zegerid…

OH – and get this!?! My 16 month old is a the doc with daddy right now as I think she may have chickenpox!! I COULD SCREAM!

J

[Author]

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