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Talk to me about infant formulas please (especially foster moms)


Katy
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We have a baby staying here that seems to be allergic to dairy.  Born early, host of other health issues, drug exposure included. Baby's having lots of GI issues (vomiting curdled formula, chronic diarrhea, terrible sometimes bleeding diaper rash as a result of the diarrhea, fussiness that is clearly related to GI pain - not colic ). Pediatrician seems to think milk allergy.  We've been doing the formula dance: Sim19, Sim Sensitive, Sim Total Comfort, an anti-allergy one.  Symptoms are getting slightly better for each new trial, but baby HATES the allergy one, and after 3 feedings started refusing it, so now we're mixing it with the total comfort in hopes of developing a taste for it and slowly getting to 100%.

 

Multiple tests have been done, there are no signs of infection, including CBC.

 

I'm wondering if we should ignore the doctor and do a trial of soy formula.  Why are soy formulas no longer what to try first?  The allergy formulas are ridiculously expensive and apparently unpalatable.  Is there really a 50% correlation between milk allergies and developing a soy allergy or is this just hype to sell $50 cans of formula?

 

I'm also wondering if something like thickening the formula with a bit of rice cereal might help the diarrhea, which is our primary concern. Well, really dehydration, but going through hours of airing out the bottom only to have the rash go from nothing to bleeding in the minutes after a diarrhea bout also greatly concerns me.

 

Also, if you've dealt with drug exposure related diarrhea, what helped (besides waiting it out)?

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I wasn't a foster mom but DS had a lot of what is going on with your baby.  I gave him the similac soy formula - but only the ready-made kind.  The difference between the ready-made and the powdered stuff was like cream to 0%milk.  I would also used browned flour on his bleeding rashes, not creams or ointments.  Obviously, take it with a bag of salt I have no experience with drug-related issues.

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IME diarrhea and diapers quickly causes a bad rash. I'd recommend using a cream every change.

 

Oh, you said drug-related diarrhea, so I'm assuming newborn. 

 

I used "baby's only" (marketed as a toddler formula, but suitable for newborns) with DD and noticed fewer/less smelly spit-ups, but I don't think we actually had a milk allergy. 

 

 

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I would try Alimentum before Soy. Then again I am against giving children soy because of the psyo-estrogen properties of soy. I suspect that the child in my care has a milk intolerance and I am paying for her to drink Almond milk (she is 3) instead of what WIC provides. 

 

What you are describing does sound like a milk allergy though. My son had a milk protein allergy and that is more or less what he was like. 

 

There are also amnio-acid based formulas. Those are really expensive and I would hope that WIC would cover those. However we haven't got an infant yet so I am not sure if they do. 

 

Good luck!

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Several of my fosters drank so formula but that was 15+ years ago so things might have changed. I think it is worth a shot given the severity of the symptoms.

 

For the diaper rash we used Magic Butt Cream. We got it from the pharmacy but you can make your own. It is 1:1:1 ratio of Desitin, Maalox, and Nystantin (or Monostat cream).

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Well, I had two kids with milk allergy, one was preemie.  There is a correlation to soy allergy, although that wasn't as well known 15 years ago when my first allergic baby was born.  A decade later, the scientific understanding of allergies had reversed a bit.

 

A few thoughts:

1. Can you give a dairy-free, soy free probiotic? 

2. Have you had a GERD assessment and a trial of reflux meds?  Prevacid solutabs were one of the only things that helped, besides physical positioning.  I wore my baby in an upright position 12-18 hours a day for the first year of her life.  

3. We picked up a trick during a hospital stay---complete with bleeding bum rash---mixing equal parts corn starch + petroleum jelly.  I am a very crunchy mama, and avoid petroleum based products as much as I can, but, hands down, it was better than any commercially prepared cream.  You should apply the cream with each diaper change to keep a strong barrier against the acidic poo. :(

 

Thickening the formula with rice formula isn't going to solve the fundamental problem that baby is reacting to dairy protein with a highly inflammatory GI reaction. You need to stop the exposure to the allergen and then allow the gut to heal. I'd push for a trial of elecare formula or a dietician approved goat milk formula--depending on age of baby.

Edited by kbeal
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My second dd had (well, has) a whole slew of allergies. At 6 months she was put on EleCare. She took to it better than others. She was allergic to the soy formula I tried her on, which was the reason her dr said "obviously" her issues were not allergy related. [emoji52] at the time EleCare was much more expensive than like Neocate, so I had to push to try it.

 

 

Sent from my iPhone using Tapatalk

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Have you tried Nutramigen?

 

A GERD work up with the peds GI?

 

This sounds like my DS. He had GERD and he has multiple LTFAs, now, though as a baby there was never (thank goodness) anaphylaxis... but he was clearly in horrible pain often. It was a hard first year or so. Zantac tasted terrible but helped a bit, that was Rx'd by the ped GI.

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Only thing I can think of is the cans often say processed on equipment that processes dairy.  So if there is a dairy allergy that might not cut it.  All that said, one of mine tried them all and his issues (similar sounding) just EVENTUALLY went away.  We tried soy first.  Then the expensive stuff.  None of it made much of a difference.  Wearing him didn't help.  NOTHING helped.  It's one of these things where I think sometimes they don't figure it out before the kid just grows out of it.

 

Big hugs...

 

edited to  add....we also had him on Zantac (which really didn't help much either)

 

 

Edited by SparklyUnicorn
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#5 had MSPI.  It's a milk intolerance that is usually just as bad with soy because their proteins are so similar.  (Milk -Soy Protein Intollerance) It's definitely a real thing. Diarrhea is one of the biggest signs.  

I'm not familiar with the brands/types you listed, but I will say that many "allergy" formulas still contain casein, which is absolutely insane, because that's what milk protein intolerant people can't have!!!  The slightest trace can be a disaster.  How do I know?  Drinking "dairy free" coffee creamer negated all the work I did to go milk-free while feeding my infant.

 

Ds went from breastmilk to Elecare, so I think it's suffice to say he was NOT happy. None of us in the house were.  It's absolutely, positively disgusting.  We went cold turkey (no choice, his FTT was too serious) and he got used to it in maybe 48 hours.  The rest of us never did, but it was totally worth it to save my eventual butterball!

 

If it's possible, I would highly recommend working with a pediatric gastroenterologist.  Ours was absolutely amazing, and I fully credit her for saving my baby AND my sanity!

 

 

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For foster care, Medicaid and WIC can cover the special formulas. Dr needs to write a script for Medicaid to pay for it.

 

Yeah, the drug related bleeding diaper rash will get better.

Either air or always cream, lots of it.

There are prescription creams as well, iirc.

 

Good luck. Hang in there, mama.

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We did soy with our allergy baby after she stopped nursing. Not sure why this would be considered a foster question, but while I wouldn't recommend soy for a first choice if baby is refusing the allergenic ones it's a not going to be the end of the world. A fed baby is most important, and if one is making her sick and she is refusing the other then keep going down the line in process of elimination.

 

Agreeing that air is the absolute best cure for diaper rash. We'd just hold baby with a cloth diaper or towel over our laps. It clears it up faster than anything else.

Edited by Arctic Mama
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Several of my fosters drank so formula but that was 15+ years ago so things might have changed. I think it is worth a shot given the severity of the symptoms.

 

For the diaper rash we used Magic Butt Cream. We got it from the pharmacy but you can make your own. It is 1:1:1 ratio of Desitin, Maalox, and Nystantin (or Monostat cream).

I've compounded that myself - it's good stuff for soothing, for sure! We still do air but for the spotty prickly bleeding rashes the maalox is the secret ingredient ;)

 

I have been known to just pat that on their with my bare hand and no other diaper cream components...

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It doesn't sound like this is the case with this baby, but sometimes the bleeding diaper rash is a yeast infection. That's something to consider if you can't get it to clear up.

 

Poor sweet baby, I hope you are able to figure out what he/she needs! Hang in there.

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If age adjusted for prematurity, baby would still be considered a newborn.  Yes, have tried Nutramigen. It improved the diarrhea but baby also stopped eating much and screams that hungry cry. We tried mixing it half and half with the total comfort but baby also started refusing that.

 

Just went now and got some of Similac's version - Alimentum.  It smells better to me, and it went down without protest but only 2 ounces.  I'll keep trying that for the next few days, and if that doesn't work I'm going to try soy.  Or maybe look into goats milk but honestly I have no idea where to even buy that sort of thing around here. Perhaps I can find some canned stuff online.  I'm certain I will not be allowed to give unpasturized anything to this baby.  There are legal limits to how crunchy you can be with a baby that isn't yours.

 

We've been using a magic butt paste recipe from the pediatrician - A&D, 40% zinc oxide, Maalox, anti yeast medicine, triple antibiotic ointment are included.  It clears up the rash amazingly fast but the very next time there's diarrhea baby's bottom gets raw again immediately.  Have been airing out bottom a bit, but it's tricky because tummy time isn't well tolerated when there's pain.

 

The reason I asked for foster moms especially is that drug exposed babies frequently have extensive GI issues.  Everyone that I've cared for in the past already had the right formula mix figured out before they came to our home. We haven't consulted a pediatric GI yet, but we may soon.  I understand the one locally (there's only one) starts with Nutragimin or Alimentum and adds rice cereal to the formula before doing prescription formulas.  My understanding is that here at least WIC will cover whatever the doctor orders, at least until it becomes a prescription thing and then medicaid will cover it.

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Not a foster baby, but Alimentium worked for one of mine. The canned version is much, much better than the powder. It cost a ton of money, but we fought insurance tooth and nail and it fended up covering the formula for a year. Our pediatrician wrote a prescription, and we filled it with a medical supply company, the kind that delivers oxygen tanks, etc. They delivered by van once a month and sent the bill to insurance. We had to do quite a bit of fighting with insurance, with multiple calls and escalation to management, etc.

 

For bleeding/nearly bleeding diaper rash we used Tripple Paste. We also washed the baby's diaper area with a little water and baby wash at *every diaper change*. I kept a little plastic bowl and soft cloth (later paper towels) on the changing table. Before putting the baby on the changing table, I put some warm water into the bowl, then cleaned the diaper area with paper towels/cloths dipped in water to get rid of stuff , went over it again with a tiny bit of baby wash, wiped off soap, patted dry. If possible, let the baby lie on the changing table a few minutes to air dry (hand on baby, naturally). Then, apply Tripple paste, and diaper. 

 

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From what I have learned babies have issues with the animal protein (as opposed to lactose).

 

Both my kids had colicky symptoms on formula at first. With ds he did a 180 when we switched to Similac Alimentum (broken down proteins so the milk was a non issue). With dd we eventually made the switch to Alimentum but she didn't have immediate success. We had a dr note for ds so we could get it free from WIC. With dd we paid over the counter and I mostly pumped. We got some of hers free from the pediatrician's office. The powder and liquid are slightly different, but we wasted the liquid because we were supplementing and it would go bad in the fridge after a short time so we stuck to the powder for the most part.

 

With dd we tried Gerber Smooth as a cheaper alternative but ultimately decided to try Alimentum. I know there are other brands that are similar.

 

I would not do soy. I can't remember off the top of my head but I used to be very active in a La Leche League facebook support group and I seem to remember the leader/IBCLC discouraging some of the alternatives.

Edited by heartlikealion
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Regarding tummy time, one of my babies had torticollis. I learned about ways to do tummy time that didn't involve baby on the floor. So just in case it didn't occur to you, you can get tummy time from doing things like laying baby across your lap or against your chest. I know you said something about a wrap. I'm not sure what angle the baby is in but if you could get them leaning against your chest that might be better than some positions. 

 

Both Alimentum and Nutragimen contain milk proteins.

 

They are broken down proteins and easily digestible compared to the other milk formulas. It was like night and day when we went from Enfamil (probably whatever the ob/gyn gave us) to Alimentum.

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Are you keeping thick layer of ointment on even when his rash is cleared up, to prevent it from coming back? There should be a super thick layer of the zinc to prevent the diarrhea from coming in contact with the skin.

 

Yes, thick layer with every change, very frequent changes.

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I think Ilex works best to clear up broken down skin on bottom. My girl had serious diarrhea and a raw diaper rash when she came to us. She was on phenobarbital at the time. When we started to wean diarrhea improved. Substance exposure can cause symptoms similar to milk allergy :(

Is he being treated to NAS?

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[quote name="heartlikealion" post="7801339" timestamp="1506374187

 

They are broken down proteins and easily digestible compared to the other milk formulas. It was like night and day when we went from Enfamil (probably whatever the ob/gyn gave us) to Alimentum.

 

Which is what makes them good options for colicky babies with milk sensitivities. Babies with milk protein intolerances will continue to poop and puke their brains out and risk malnutrition.

 

A ped gastro can better assess symptoms and possibly limit further damage and recovery time for babies who can't tolerate these proteins. It took my baby weeks to get out of serious danger and months and months of follow up. Which is why I find it important to point out.

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I think Ilex works best to clear up broken down skin on bottom. My girl had serious diarrhea and a raw diaper rash when she came to us. She was on phenobarbital at the time. When we started to wean diarrhea improved. Substance exposure can cause symptoms similar to milk allergy :(

Is he being treated to NAS?

 

Ahhh, I didn't realize phenobarb could be contributing.  Important to know, thanks!

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We didn't see diarrhea with phenobarbital, for what it's worth that isn't a common side effect reported on our particular HIE group. What we do see are babies who ar round of zombie blah tired and unresponsive until they're weaned or go to a different seizure med.

 

Sleepy baby was our biggest side effect. But if it is for seizures there really isn't a better or safer pediatric alternative until they're older than three months. Keppra and such has its own side effects and isn't commonly prescribed to newborns for a number of reasons.

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I'm talking phenobarbital used for weaning from the substance exposure not seizures. It may not be a stated side effect but from experience at home and at work I see it a lot with NAS. Now diarrhea can also be from the withdrawal itself. Every baby is different. It takes time for symptoms to be fully gone. Diarrhea and tremors seem to be the last to go around our house.

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I'm talking phenobarbital used for weaning from the substance exposure not seizures. It may not be a stated side effect but from experience at home and at work I see it a lot with NAS. Now diarrhea can also be from the withdrawal itself. Every baby is different. It takes time for symptoms to be fully gone. Diarrhea and tremors seem to be the last to go around our house.

Ah gotcha. I'd have to ask my nicu nurse friend but I'm pretty sure the correlation is messed up systems form other effects and not the drug, itself, if all of us using it for other issues aren't seeing rashes and diarrhea. Wouldn't surprise me a bit with those nasty cocktails of substances some babies see in utero.

Edited by Arctic Mama
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Well to muddy the waters, the phenobarb was for seizures thought to be caused from NAS.  On a wean-off dose for a few more weeks. Still seeing tremors. The good news is the new formula seems to be helping.  Lots more mucus in the stool than I would prefer to see, but no more watery diarrhea. Also much less fussing and much better/longer sleep.  And yes, the cocktail of drugs has made everything super confusing.

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I'm glad the new formula is working better. That's fantastic news. I hope sweet little baby feels better soon and can detox with as little side effect as possible. Hopefully the tremors subside with distance from the systemic and neurological insult :grouphug:

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All three of my kids ended up on soy formulas.  

 

DD18 would get urine burns.  It wasn't the solids, but the wet diapers that were the worst for her.  Even if we changed as so as she was wet, she would get a bleeding rash, but only on wet diapers not soiled ones..  The best for her was pure aloe vera that was allowed to air dry and then we re diapered her.  I don't think it is a common recommendation for a baby, but it was the best for her.  

 

DD10 would vomit and have bleeding rashes daily from dairy.  I started rinsing her tush under the faucet every diaper change. It was the best thing I tried with her. I would wipe away the solids and then rinse her off in the sink.  Allowing her to air dry and then re diapering her without cream. She was a very hot baby, with lots of folds. Creams seemed to irritate things more than give relief.  The only time I used cream was before bed and I would slather it on so that nothing would get through to the skin.  She was a sound sleeper so she didn't move around a lot in her sleep. 

 

 

When rashes were bad, I would use only wash clothes or I would rinse out diaper wipes before I used them.  That helped to get the chemicals out of them and left less residue behind. 

Edited by Tap
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DS1 had really bad diaper rash to the point that it was too painful to apply the cream.  We were in Egypt at the time, and they sold a liquid which was just olive oil mixed with zinc oxide.  I was able to squeeze that out on the rash without having to touch it at all, which seemed to help.  I bet it would be easy to make your own mixture.  The other thing that worked was Boudreaux's Butt Paste.

 

I've seen canned goat milk in the store FWIW.

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