MD's are no help and I need some

[Anonymous]

The saga continues………….

Carson has been on every formula known to man except the amino acid ones.

This started when we finally got his reflux under control and we realized there were severe lower GI problems unrelated to reflux also.

rarely pooping without a glycerine suppository

Grown up stinky gas

Major irritability 24 hours a day

Not sleeping

Burps from h***

Mucus in stool

We went through- in order- with side effects listed….

Enfamil AR- all of the above symptoms

Alimentum-cleared up lower GI but spit major clear fluid even on empty stomach

Good Start w/Cultures- wouldn’t poop snd still had mucus

Nutramigen-TOTAL Failure all the way around

Enfamil Gentlease- wouldnt poop-still had mucus

Tonight we have started soy. I know a lot of MSPI babies are also allergic to soy, but I am at the end of my rope and somebody untied the knot. After this I am not sure what else I can do. We can not afford AA formula without a script. Our Insurance will cover it. I even asked for a 6 week trial script to no avail. Otherwise, I love this ped. I don’t understand his reasoning??????? I have looked at DGE and other Dx’s but none seem to fit as well as MSPI or allergy.

At this point, last week, we go to the Ped and consult about formula….

Ped orders stool cultures and they all come back negative for Strep, chigella, white cells and giardia. Ped ordred serum allergy testing in July for 24 different allergens -all negative. However, the GI said this is unreliable until after 3yrs old. Ped will not prescribe amino acid formula because of the negative labs and cultures. He keeps saying constipation is not a sign of intollerance or allergy- diarrhea is the key symptom.

My questions are

Since there was SOME improvement on the predigested formulas such as alimentum and goodstart, should he not trial the AA formula from the results of the clinical challenge?

The Ped wanted us to have a closer GI, so he made an appt with one that visits here from Chapel Hill on Nov 4th. His current GI is in Charlotte and it takes an act of congress to get in to see him. We have met our deductible this year and prefer if there needs to be any testing, it be done before Jan1. I am not sure about waiting , what if he thinks I am exaggerating-thats common around here………everywhere it seems.

What would you guys do?? I am all out of New Peds so thats not an option. I know there has to be at least some lower GI irritation because he has improved a small bit on some of the smaller protein formulas.

I need some direction. I have looked for documentation on the constipation thing etc and can’t find it. They all say diarrhea. I even checked the NASPGAN site. If it is not a reputable site the MD’s just discredit the info.

HHHHHHHHHEEEEEEEEEEELLLLLLLLLPPPPPPPPP

[Anonymous]

one of the side effects of using a PPI is constipation, and constipation is a common cause of mucous in the stool.

[Anonymous]

My dd is on Isomil, but she got breastmilk too, if soy alone, it will cause her stool firmer.
So if your son is in major constipation, soy will make it worse.

[Anonymous]

how frustrating! i don’t understand where he’s coming from either. personally, i don’t think babies should even have soy–my dr. of chinese medicine highly advises against it…but that’s not mainstream medicine–. maybe you could do a quick trial of the soy and tell him it didn’t work regardless?

[Anonymous]

Carson has had the constiptation and mucus issues since birth, before any PPI was ever given, even on breastmilk!

I know the mucus goes hand in hand with constipation. My problem is finding a formula to stop this GI upset. I can deal with constipation if I can find a formula that lessens the all the other symptoms……theres always miralax.

[hellbennt]

call the company & ask for samples?

call the local children’s hospital & find the peds GI nurse & ask if they have any samples?

[Anonymous]

you do not need a prescription to get the neocate. Just ask the pharmacist for it… when Carters was not covered, we got it on ebay and it cost us less than even the nutramigen had cost us.

I would try the neocate and give it a good two weeks to see if it was helping. then you could tell the doc if you found the answer and then maybe get her/him to write a script to see if your ins would cover it.

Hang in there!!! Our 24 hour fussiness ended with neocate and PPI combo……

[Anonymous]

It sounds like your babe NEEDS Neocate! I don’t know what the heck he is thinking either! I would try the Neocate. I was just on the Neocate site this morning and they are offering $30.00 olff with free shipping right now. That is less than Nutramigen. I would bet many of his issues would be cleared up with the Neocate. It is sooooo worth a try. Then you can go to the doc and say look….it has made a big difference! Then he’ll have to give you a scrip and maybe you can get WIC to cover it? You can make quite a bit of money and still qualify for WIC. Things will get better!

BTW…constipation is also common in MSPI babies.

[Anonymous]

I was going to second just jumping right to an elemental formula. If you are having all those issues I’d swithc to one. Since you alredy tried Alimemntum and Nutramigen I’d go to Neocate or Elecare.

How long did you stick with each formula???? Someitmes it can take a bit longer than the 2 weeks to see results.

Personally, if the only issue you were seing with the Alimentum was the clear spit up, I’d go back to that…JMHO….as long as doing the spit up was not bothering the child I’d switch back. Esp considering you said the symptoms seeme dto clear up on it.

[Anonymous]

Yup, I agree with jessica, I think if Alimentum only cause your baby spit up a clear liquid, but no other problem, I would go back to alimentum.
My dd sometimes spit up in clear liquid on breastmilk too, and doesn’t seem to bother her.
I ask the doctor, breastmilk or formula will not stop the baby from spitting up, as long the baby not in pain, its okay.

I supplementing with formula, but she still 80% breastmilk, I tried the Neocate or Alimentum, she gag on those two, because the taste.
And give it at least 2 weeks to see the result!

[Anonymous]

Clear spit wouldnt be an issue if he wasn’t on aspiration precautions. We have tried to lessen the chance of aspirating on his own spit up as much as possible.

Each formula trial has had 2-3 weeks.

Thanks guys

[Anonymous]

Carsons_MomKM wrote: Clear spit wouldnt be an issue if he wasn’t on aspiration precautions. We have tried to lessen the chance of aspirating on his own spit up as much as possible.

Each formula trial has had 2-3 weeks.

Thanks guys

Have you had a swallow study done to see how he is aspirating to make sure it is coming from below as he refluxes???

I mean, it he is vomitting on all of the ones you ahve tried and the only issues was clear spit up…..I’d go back. have you asked the GI about which ones to try????

[Anonymous]

Hi there,

i would definatelly try the amino acid formula. We tried all the formulas you have tried. We saw some improvments on Alimenum, but the real improvement came when we switch to neocate.

You might be able to find some Neocate infant on ebay. That’s where i got my formula before we qualified for WIC. Also the Gi or pediatrician might have samples. I have a few cans on Neocate Jr i could send you. It is for children 1 an dup, but there are instructions to mix it to 20 calories per ounce (for infants) and 30 calories per ounce for 1 and up.

PM me if you want to try it.

Also if he is on aspiration preacautions, i WOULD PUSH for a sawllowing test. There are not painful and it doesn”t take long. That way you’ll knwo for sure wether he is aspirating or not.

kendramom2008-10-05 14:43:12

[Anonymous]

what do you mean when you say he is on aspiration precautions?

[Anonymous]

Thanks for the offer for the neocate jr! Thats great.

Carson has had a swallow study. He aspirates anything thinner than honey consistency, no matter which direction it comes from. We use thickIt on all his formula, pedialyte, juice, liquid meds, etc.The alimentum caused so much spit up it was impossible to keep him from choking on it all day. He has not spit that much since before the Nexium. We havent had an issue since, even with the other formulas we have tried.

So sorry for the confusion about the aspiration precautions. I used to be a nurse and it means anything that is consumed orally, has to be thickened due to dysphagia(abnormal swallow mechanism). I forget sometimes about medical terminology.

Carsons_MomKM2008-10-05 19:49:14

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