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Help! FF Mom at a loss

1244 Views 14 Replies 11 Participants Last post by  thepeach80
Hi all,

I had to formula feed from birth and started with Enfamil Lipil. Then the forehead rash started. Docs thought it was extended cradle cap as did naturopath. Treatments failed though but the cradle cap on her scalp went away no problem.

I tried Nutramigen to see if that would help but it was so digusting that after 5 weeks, DD was refusing to eat it and screaming at feedings etc. (It was strange but she didn't seem to care at first.) I've heard since that it really tastes disgusting. From now on I will taste everything before I give it to her. (I had already tasted the Enfamil in the past.)

So, we had to go back on Enfamil and the eczema got worse. She doesn't really have other symptoms. She does have hay fever. I'm treating her homeopathically until I can get back in with the naturopath for a different constitutional remedy. I'm using Rhus tox and sulphur plus calendula cream, aloe, and chamomile cream for the itching on her forehead.

So now I'm stuck here. I had eczema as a child. I was exclusively breastfed past 1 year old which is probably why mine wasn't bad as a baby like Emery's is. It was moderately bad as an older child and I have allergies and some mild asthma.

Do I switch to soy formula?? But I've heard very bad things about soy! I've been told stories of eczema disappearing by switching to soy but then I read that it can cause brain damage and I already knew it is highly estrogenic. I can't tolerate soy myself for this reason (endometriosis & estrogen dominant). At least she's 5 months old so it wouldn't be AS bad as giving it from birth but still!

Any advice here would be helpful. Although she's not suffering horrifically, I'm afraid of the strain on her immune system from this allergy. We use all natural soaps on our clothes and bodies, I use an air cleaner in our room to reduce airborne allergies and change the bedding every night. I'm in the process of switching to cloth diapers which I hope will help reduce the load on her immune system from those chemical diapers.

I saw goat milk powder in the health food store which I know isn't a substitute for formula but I'm afraid to go that route because if you screw up the mixture and vitamins it can mean big problems.

Thanks,
Jen
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If you don't want to use soy and she won't take hypo (which could be a sign she has a more serious milk issue) you'll need to try Neocate or Elecare formula. It's corn based. We tried it w/ Evan (he gets one bottle a day) and it made no difference really in his reflux so we're back on Nutramigen. The 'hay fever' is probably related to the formula or something else in the house as it's extremely rare for a baby that young to have seasonal allergies.
THANK YOU!!! I had no idea these formulas existed! Now I have something to bring up at her ped appointment. She is excellent when it comes to natural mothering and will understand my hesitation over the soy I'm sure. Where can you purchase these formulas? Are they prescription only?

Regarding the hay fever.. I call it that because I brought her outside and the tree pollen was very strong that day and she was sneezing and her eyes were watering, etc. When I brought her inside it was better. She doesn't really have these symptoms much at all indoors.

Thanks!!!

Jen
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Have you considered a NON lipil formula?

youngest and toddler dd's both have wicked rashy/ecxema-like reactions to the lipil stuff, but have done very well on regular.
Another argument you can use with the ped. is that over 50% of babies with a dairy allergy are also allergic to soy. Over 90% will be allergic to goat's milk.

Ds2 reacted with the eczema via breastmilk; allergens given to him directly caused a much more severe response. Please remember that the more a child is exposed to an allergen, the more sensitive and reactive his immune system becomes.

Definitely ask about Neocate or Elecare; there are no intact proteins in those formulas. Even hypoallergenic formulas, such as alimentum, still contain some intact proteins.
Just wanted to say that I had the EXACT same problem w/ ds and I found something called Zim's Crack Creme and it cleared it up completely. His was so bad it was oozing and when I tried this it went away. You can get it in the first aid section at Wal Mart or Walgreens, and it is herbal based and completely natural. Just make sure that you get the oil in the spray bottle instead of the lotion in the tube...the lotion in the tube didn't work at all!
Hope that helps!
Blessings.
I just got off the phone with my ped (she is so good that she gives out her home# and beeper# to moms) and she wants her seen by someone at the clinic that she thinks is OK (she knows how most docs are) before she will prescribe the new formulas. She recommended Carnation Good Start but that stuff is like the Nutramigen. Now I think I understand my DD's reaction to the nutramigen. She didn't mind it at all at first and the aversion just got worse... it was probably making her sick! The ped was open to prescribing the Neocate or Elecate though but I'm so scared. Today my daughter looks so much worse. She is now waking at night to eat and is barely eating at all. She doesn't even "ask" to eat, we offer it. This is what started happening on the Nutramigen.

I had my DH talk to the ped because I am so upset and guilty I can't stop crying now. I HATE that I can't breastfeed. I was mourning breastfeeding before we even conceived but this is too much guilt for me to handle. My poor baby is so sick. I feel like she's dying from the inside out from this allergy and it's all my fault. I'm so angry at myself. I went against nature by having her because I had to have surgery to restore my fertility due to damage from Endometriosis and adhesions and then I couldn't breastfeed due to the Lyme Disease. I just hoped that if I did everything else right (no chemicals, organic foods once she starts solids,no vaccinations) then maybe she would be OK. But no, she's suffering and boy am I suffering.

Please pray, think or send good will on behalf of my DD so that she might get the food she needs to be better? No matter what you might think of me for FF.

Jen


I have an appt at 3pm with some doc at the clinic. Oh please let this one have a brain. It would be a first.
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Jen,
Please don't beat yourself up. You love your baby and it shows by the fact that you aren't giving up and are willing to look into different things to help her. It's so frightening when they don't want to eat and the eczema is getting worse. You are doing the best you can for her. If you end up needing elecare it is available on ebay for around $100.00 a case. The cheapest you can find it online is probably $180.00. You can also get neocate on ebay, but I'm not sure how much it costs.

Peace,
Jen,

This child is meant to be here and you are meant to be her mother! I'm so sorry you are going though this. I will say to you that we bf and had huge issues with eczema!! I also am conflicted about feeling like I passed on my leaky gut to DS. Believe me, as mothers, there is NO shortage of guilt regardless of what you do.


There are a number of issues you should consider in addition to the "allergenic" profile of what your child is eating.

I would definately recommend against any lipid formula. The DHA in formula is engineered from fungus and microalgae, it is not natural fats, and NOTHING like BM regardless of what their ads claim.

See info below about fortification protocol. I feel very strongly that infants need cholesterol and essential fatty acids for proper brain development, but in a natural form, not manufactured. But of course,they are also critical for eczema sufferers who have messed up lipid profiles to begin with.

I wonder if the engineered omega 3 fatty acids in the lipid formulas act like the similarly lab created "hydrogenated fats"... in that they also block the body's synthesis and utilization of real fatty acids and in fact can cause eczema (trans fats are really bad for eczema sufferers for this reason).

But that is my own personal theory. Nonetheless, there is a lot of evidence that the lipid formulas have been creating a great deal of problems.

Also, you should start a probiotic supplement. There is mainstream research being done on this right now, and the next wave of "fabulous, new and improved" formula will be with probiotics added. Ok, so that was a snide way of saying that it is critically important. Especially since you notice the gut/immune system dysfunction, eczema.

www.culturelle.com has a number of studies posted on their website regarding eczema and babies. Baby Jarrodophilus, in refrigerated case at health food stores is also very good. You might want to try both the Jarrow and the Culturelle, as Culturelle (lactobacillus GG) is a helper probiotic.. it doesn't colonize the gut forever, only as you are taking it, but it helps the other probiotics (like the natural organisms in Jarrow that are isolated from healthy babies' intestines) take hold. That is what my naturopath recommended.

I agree with you, I would do everything possible to be sure my baby never ever got soy formula.

Formula fortification protocol for essential fats:
http://www.mercola.com/2000/oct/22/infant_formula.htm

Humans (and baby humans too!) need omega 3 fats (and not engineered ones!)
http://www.mercola.com/2002/mar/16/omega3.htm

See below on this page for fortifying commercial formulas
http://www.westonaprice.org/children/recipes.html

This page and links below will change your mind about DHA formulas:
http://www.kellymom.com/nutrition/mi...-comments.html
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Hi,

I am a mom who ff both of my babies after I could no longer pump for them (long story). Both of them had reflux but Abi outgrew hers. Abi did best on Good Start. Nitara was on a variety of things but the Alimentum was the best on her stomach as a young infant. It does not taste quite as bad as Nutramigen and you can add vanilla to it to make it taste better. Babies love vanilla.


Just to break down the formulas for you:

You have your standard milk-based ones. Most babies can tolerate them.

Then you have your standard soy formulas. Since they have no milk proteins or lactose more babies can tolerate soy than dairy. However some are allergic to soy, and soy tends to be constipating.

GoodStart is a gentle dairy formula. It is broken down more and digests much more easily than standard dairy formula. However since it still has dairy in it, you should avoid it if you suspect an allergy. (And by the way the taste is actually pretty good. My older dd finished off a can of Good Start that Nitara didn't use up, and she was sad when it was all gone. :LOL )

Alimentum/Nutramigen. Both of these contain dairy but are broken down so much that the body does not recognize it as dairy. This is the formula for the child who is allergic to everything else. *However* both of the powdered forms contain corn solids and some babies are allergic to corn. Alimentum ready to feed does not contain corn. My baby was on the RTF formula for awhile- it was all she could handle.

About feeding aversions-- my dd was never a big eater but as her reflux went undiagnosed longer and longer she became aversive to all eating. It seemed to get better if I tried a new formula-- probably because she didn't associate that new one with discomfort until it started to flare up again. I now realize that she would have stopped eating no matter what I had given her. However some were better digested than others with Alimentum being the best (the poop is very runny like a breastfed baby's but it's green).

I think a referral to a specialist is a good idea. I hope you get to the bottom of the skin condition. Make sure to ask about silent reflux as well. It doesn't always involve vomiting, but it can lead to extreme pain, nausea, and feeding aversions over time.

Best of luck to you. I know you are doing the best you can for your baby under the circumstances. There's no point looking back now, hindsight is always 20/20. Just look forward to lots of special bonding. I bottlenursed my first dd until she self-weaned and it was a very special experience. We also shared the family bed. AP has gotten me through a lot of medical situations with Nitara. I don't know what I would have done without my sling. It's been such a comfort to both of us.
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I'd also reccomend trying the Neocate or Elecare. Most ins companys don't cover it though and its very $$$. You can get if off ebay though for about $10 a can.

I was wondering something and i'm not trying to attack or flame at all. Were you told you could not BF because you had Lyme Disease? Who told you this?
USAmma said:
Hi,

Alimentum/Nutramigen. Both of these contain dairy but are broken down so much that the body does not recognize it as dairy. This is the formula for the child who is allergic to everything else. *However* both of the powdered forms contain corn solids and some babies are allergic to corn. Alimentum ready to feed does not contain corn. My baby was on the RTF formula for awhile- it was all she could handle.

-----

I just wanted to add that if you suspect a milk ALLERGY (as opposed to a digestion/lactose etc problem) you still shouldn't use these formulas....at least that's what my Dr told us
Is there a local milk bank around you for donated breastmilk? Ask in the BF'ing forums to see if they can suggest any alternatives.
Thanks for all the advise!

We've started the Elecare but until WIC starts up with it, we're giving it along with her regular formula. I see improvement but it might just be her flare calming down. We'll see. Thanks for the advice on getting it on Ebay... I had forgotten about that.

I do not want to use donated breastmilk because there are diseases out there that people don't know they have. This brings me to Lyme Disease. It has been found in breastmilk and there were too many women giving it to their children through their breastmilk for me to risk nursing. I've only read a few horror stories of what children have gone through because I can't deal with reading all the problems these children have as a result of in utero or breastmilk infection. The true specialists in this disease recommend antibiotics during pregnancy (which I did), placenta and cord blood testing (which I did) and no breastfeeding. I don't want to argue about this being true or not, but if you'd like more info on this for your own info, please go to http://www.lymenet.org and go to their discussion group and ask away. Or you can just search the archives. Some people say we shouldn't even have babies at all. Some nurse despite the risks. To each her own.

I started probiotics right away with her formula... bifidus in particular and I just gave her some Reuteri recently. I have added safe Cod Liver oil as well but right now everything is crazy so once we're on just ONE formula I can continue with the fortification. I know that mercola also recommends egg yolk after four or five months. I knew about his protocol before I even conceived. I think it's great. I wasn't able to really do it from birth because I developed severe PPD borderline PPP two weeks after the birth along with severe mastitis in both breasts, etc. I had a great natural childbirth but after that things went to pot as they say.

Right now I have an appointment on friday to change the formula to Elecare on the WIC checks. I hope they don't give me a hard time about not trying soy first. Most people on this site would be happy to know that I've often been humiliated/questioned/chastised about not breastfeeding at my WIC appointments. Plus, they mailed 'breast is best' pamphlets to my house which just twisted the knife that much more. So, the NYS dept of health is promoting breastfeeding... even if it is just to save money and not because it is actually the better choice!

Jen
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We had a presctription for Nutramigen to give to WIC when he was 3 wks old, no one said anything. We do 95% bf still though. I hope this helps. Our insurance covered our Neocate and I know Medicaid does if you need more.
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