Infantreflux.org | So tired of things getting worse

This topic has 7 replies, 1 voice, and was last updated 17 years, 11 months ago by Anonymous.

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November 10, 2006 at 2:47 pm #17631

Anonymous
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For the past three weeks, Gabby has been doing wonderful. Here’s her brief history. She was breastfed and supplemented with milk formula for 9 weeks, and the reflux started around six weeks. She arched, turned red, and screamed. We tried zantac and prilosec suspension with some good result but the improvement always faded. Once we got on prevacid, things started getting better but the GI suggested Alimentum in addition to the prevacid. We did two weeks of Alimentum which seemed to make no change except that she HATED the taste and ate so much less. We did the Alimentum for two weeks and then the ped told me to go back on the milk formula since we didn’t see much of a change. We started back on milk formula exactly three weeks ago.

Once back on the milk formula, she thrived. She ate so much more and was sucking down bottles left and right. We just assumed she just needed the prevacid. But now, things have gone back to crummy again. She is arching, turning red, gagging and turning her head to the side. She had been having crying episodes at the start of this week, but I attributed them to the fact that she wasn’t having a bowel movement every day anymore. But things have gotten so much worse. She’s only eaten 6 oz today. And I can’t encourage her to eat anymore or she’ll scream bloody murder.

She is now sitting in her bouncing seat happy as a clam to be not eating. And I am sitting in tears typing. Everything seems to help for a little bit, the zantac, prilosec, upped prilosec, and now the prevacid. Obviously, it appears to be a formula issue.

I know the first thing everyone is going to say is Neocate. And as horrible as this makes me feel about saying it, I’m not ready to go that route yet due to the expense. We are struggling as is and insurance will not cover it. I’d like to try something else first. Did anyone have any success with soy? Or any other formula? I have a call into the pediatrician at 10am and no response yet. I think they think I”m blowing things out of porportion all the time but I can’t stand to see her so uncomfortable.

I always wanted to be a mommy. I never knew it would be this hard.

November 10, 2006 at 3:03 pm #17632

Anonymous
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if they are sensitive to milk protein there is a good chance they will be sensitive to soy protein….do you qualify for WIC?

November 10, 2006 at 3:10 pm #17633

Anonymous
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Nope. We do not qualify and I can’t go back to work because I don’t feel comfortable leaving her with a day care due to all her feeding issues. I guess the alimentum could have helped but it was combined with the prevacid change. But she wouldn’t eat it. I had my ped watch her eat and she just wasn’t interested in it. The milk formula she would totally scarf down. Well, not anymore.

And if anyone was going to suggest going back to the GI, my insurance only covers one and I think she’s a horrible woman. She gave me the meds I wanted but when I called hysterical that Gabby didn’t want to eat the Alimentum and was down to 10 oz a day, she told me to try pedialight and if she wouldn’t take that, take her to the ER. My ped got me in the same day. Unfortunately her advice only worked for three weeks, but at least she was compassionate about it.

November 10, 2006 at 3:18 pm #17634

Anonymous
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wait i just realized she is only on 15 mg of prevacid. you also said the alimentum didnt make much of a difference. if she was sensitive to milk protein would think that
1. she would have improved a lot with the alimentum even for a short while like my son did
and
2. she would not be able to tolerate milk formula at all and you said she was thriving for a while

perhaps she just needs a higher PPI dose? have you seen the marci-kids.com dosing recommendations?

November 10, 2006 at 3:27 pm #17635

Anonymous
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could she be building up a sensitivity to the added ingredients in the solutabs? aspirtime? Lactose? etc… Can you try the prevacid in capsule form and open and feed the little balls?

November 10, 2006 at 3:28 pm #17636

Anonymous
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It’s possible. She’s only been on this dosage for four weeks. She’s only 11 lbs (well closer to 12 after these 3 good eating weeks) and Marci-Kids says 22.5 mg so we aren’t too far off. Do PPIs have a honeymoon effect? On all three she did good for a brief time and then it tapered off.

I am just so darned confused. She has just started sleeping beautifully at night, well from 9 – 4am, which is a big improvement of what it had been. I know kids in pain don’t tend to sleep well. She also is happy aside from around eating time, talking and laughing. She also does beautifully with tummy time. Such mixed signals this child sends.

November 10, 2006 at 4:08 pm #17640

Anonymous
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Since she was doing so good on the milk, she just might need an increase in her prevacid. I would go that route versus switching formulas first since she was doing so well on the milk based formula.

November 10, 2006 at 11:25 pm #17697

Anonymous
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“I always wanted to be a mommy. I never knew it would be this hard.”

Gabbys mum, I think we have all had this thought over and over and over again. Its terrible when your baby is irritable/in pain/upset and we can’t fix it- I am sure it breaks your heart. But these little babies bring out the best in us- our caring side, our endless amounts of love, courage, determination and I am sure many other things…Just know you are doing the best job that you can…this will get better…sometimes the road is just a little bumpy!
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