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KayJay

Ever Had A Baby That Couldn't Tolerate

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I have celiac and a milk allergy. I can tolerate some milk products but for the most part I stick with soy. My dh is allergic to peanuts and he can't tolerate soy milk at all. Although soy in products does not seem to bother him.

I breastfeed our 5 month old but my supply seems to be dropping lately so I have been supplementing with formula. Only about 2 a day. She gets 3-4 oz total a day. Well, we tried the milk based kind and she would scream so much because it hurt her tummy so we went to soy. Now about a month later she tolerates the formula great tummy wise but I have noticed that she gets trimmers after eating the soy milk. I think they are getting worse. Last night it really started to scare me and I put two and two together and realized that it was the formula causeing her to do that. THen my dh says that is what happens to him when he drinks soy. So this morning I call the doctor and they said to go back to the milk based and see what happens. It is a different brand so it may make a difference but what if she can't have either one? What else is there?

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The major formula brands have an allergen free formula. It's been a while since formula days over here. I can't remember the specific names (or spell them ). Look for the brand's website and register for coupons.

My Celiac daughter could not tolerate ANY formula. It was a projectile mess! I know it can be very hard to breastfeed, but could you try some things to keep your milk supply? If you are trying to use a pump, most of them are garbage, and you shouldn't blame yourself.

Laura

YES. To the original question.

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Guest nini

my mom said that I (as a baby) couldn't breastfeed, couldn't tolerate formula either... so they just gave me regular milk with rice cereal in it...

my daughter had projectile vomiting regardless of what I fed her so I never found anything that worked to keep her from vomiting or having horrible gas...

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You might want to talk to a lactation consultant, because as long as you are still breastfeeding you should be able to increase your breastmilk supply. What happens in many cases is when a baby starts needing more milk than you're producing (usually because they're going through a growth spurt) is that you'll go through a period of time where it seems like your body just isn't producing enough milk, but if you stick with it, you usually will start producing more milk. A lot of moms start using formula to supplement when their milk supply seems to not be able to keep up, which is usually no big deal depending on your feelings about breast feeding vs. formula feeding, but since your baby is having problems with milk AND soy, I would talk to your pediatrician's office and find out how you can talk to a lactation consultant. If they can't help you, you might want to call La Leche.

Here's a couple of sites with more info if you want to try doing that -

http://www.askdrsears.com/html/2/T022800.asp

http://www.lalecheleague.org/FAQ/increase.html

I've heard also that there are hypoallergenic formulas, but the only ones I saw had some soy in them. But a lactation consultation should have information on alternative formulas. Since milk and soy are both such common allergens, I can't imagine you're the first family to deal with needing a milk-free and soy-free formula.

I hope things start improving for you all soon.

Nancy

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There are some good pumps out there....the Medela Pump In Style is good, but my suggestion would be to contact a lactation consultant asap, and you can rent a hospital grade pump (the cadillac of breast pumps) for $50 a month. I have used a lactation consultant with each one of my kids, and can't say enough about them. There is also a med your ob can prescribe to increase your milk supply, especially if your baby is having such a hard time with milk and soy based formula.

Trying to find a formula for your baby to tolerate can be very hard. I ended up going to formula, and the only brand my kids tolerated was Carnation soy. All other brands gave them trouble. And the DHA/Lipil that is in all the formulas now....that gave my kids tummy trouble too. Not sure why, but we were sure glad that our youngest only had one month left on formula, b/c it became very hard to find the Carnation soy w/out DHA added.

Anyway, hope you find something for your little one that doesn't cause any trouble. I remember what a mess that can be, and I'll be doing it again in a few months if b/f doesn't work out!!!! Take care.

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neocate is the formula you are looking for. it is amino acid based, i believe. my baby had severe reflux (fundoplication and hiatal hernia repair) and i have spent alot of time on a reflux board. alot of the babies with reflux have MSPI (milk soy protein intolerance) and end up on neocate formula. my friend has a baby that is allergic to EVERYTHING----and i mean that literally. he has been on neocate only for about a year and is just starting to eat solid foods. (his condition can be outgrown it is called FPIES---or something like that) if you want to pump for a while to increase your milk supply, you can rent some really good pumps through medical suppliers. if a script is written by your doc, insurance sometimes will pay for the rental.

christine

i guess renting has already been suggested---i should read through the whole thread i guess!LOL!!

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Thanks I do have a Medla pump but I can only get a few ounces at a time and only in the morning if the baby doesn't eat at all during the night. I usually have to give her a couple of ounces in the afternoon and then another 2 before bed. Thanks I will check those formulas out. Maddie spits up all the time. How can you tell the difference between a normal spitting up baby to a baby that is allergic to something? She used to cry a lot with it but now she doesn't at all. We go through about 10 burp clothes a day and a least 5 outfits each :blink: The doctor said she is just a pukey baby. We are going to a GI doctor Monday to talk about celiac disease and starting solids so no doubt I will bring all of this up then too.

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if her reflux is bad enough to require an endoscopy, they would see eosinophils, which would indicate an allergy to something she is eating. crying alot with her spitting sounds like a problem with reflux. how old is she? does she ever arch her back when she is crying? do you ever have trouble getting her to eat?

christine

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oh my goodness she fights us so hard when she is crying aches her back very badly. We have to hold her real tight and still for her to calm down. We just started giving her gripe water and that seemed to help some too. She was on Zantac when she was 2 months old but we stopped after a month I think it was making her worse. I have a horrible time getting her to eat. She only wants to nurse first thing in the morning all other feedings is a fight. (that is why I had to start supplementing) Last month I couldn't get her to eat anything breast or bottle but this month she will take a bottle just fine. She doesn't really cry much anymore but today she has cried almost all night. I have to think it is from the milk formula that I gave her earlier. I mixed some into her bottle of breastmilk right before bed and we will see how she sleeps tonight. She is 5 months old.

But the doctor doesn't seem concerned because she is gaining weight and meeting all of her milestones. She is very happy and active.

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she sounds like she has reflux problems. IMHO, zantac is worthless. a PPI, such as prevacid works much better for treating infant reflux. alot of reflux babies gain weight fine. fighting the breast or bottle, though, could become an issue as time goes on---they don't want to eat because it hurts!! i have been trying to figure out if there is some connection between reflux and celiac. my twins both have celiac and reflux. i also have reflux problems, but i don't have celiac. who knows? i'd suggest getting an appt. with a ped gi---they know so much more about infant reflux than a regular ped and can help you figure out what is causing it.

christine

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I think the doctors should take a look and make sure there are no physical issues. (make sure the "tubes" and flaps are well formed.) At least ease your mind some, so you can get some rest while still taking care of your baby.

I have heard the Medula pump in style is good, definately the hospital grade is best, and there is a new one from Playtex that is getting good reviews.

Keep us informed.

Laura

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Guest MyKidsMom

I had a lot of problems with my daughter for the first six weeks of her life and she wouldn't sleep more than 45 minutes at a time...horrible gas pains, arched her back and lots of spitting up and diarrhea. She also had blood in her stool. Then I had to have surgery and while I was in the hospital they took me off dairy and SHE improved. (Guess I should tell you I was nursing exclusively).

She then was a happy baby until my milk supply started to wane, too. I tried supplementing her with dairy and soy and she then starting vomitting again, especially on soy. I also tried pumping with the Medela pump.

But, the one thing that really helped me was to increase my milk supply and keep nursing exclusively. I found some tea in the health section from "Traditional Medicines" called Mother's Milk. I didn't care for the taste so I let it cool off and then I drank it fast. I only had to drink it once a day or I got engorged and I drank it 4-6 hours before I needed the boost (like in the evening). This is all I needed until I weaned her; I was able to stop pumping unless I got too engorged.

I, too, recommend talking to a lactation specialist. I knew the one at our hospital on a first name basis. My daughter's pediatrician, who also happens to be the best allergy specialist in the area, said he had never seen an infant this sensitive to dairy that their mother couldn't have it.

Be aware, the bigger problem I had was trying to wean her b/c she needed milk still and she wouldn't tolerate anything. My pediatrician said Lactaid would not work, but I finally tried it out of desperation, b/c she was 15 mos. old and I was pregnant again. He said I would have to tandem nurse. Can you imagine?

Let us know how this helps and feel free to PM me. I know it can be scary when you feel like you can't feed your own baby.

-Dianna

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My daughter EDEN first started to be allergic to dairy at 8 months, was then put on a soy-based formula, didn't do well with that at all and the dietitian then put her on a hypo-allergenic formula (like NEONATE). It worked O.K. but the taste!!! Think potato peels! Later on, we re-introduced soy milk and Eden became intolerant to soy at 2. It's so common. She vomited every time she had dairy as a baby and then went on to have diarrhea. She never really gained much weight as a baby, only bits here and there.

At 2 and 2 months - and 2 months off any soy - she can tolerate some soy milk again. Isnt' it strange! We tried her on it again as she was losing lots of weight on rice milk.

Does your daughter also suffer from diarrhea?

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Guest tracey and emma
Your insurance may cover it as well. Mine did and I pd only $12 a month to rent a hospital grade one.

just wanted to say as well that neocate is a great formular. my daughter is on it and it is soy and milk free. and also designed to be digested quicker. so the stomach does not have to work so hard

tracey

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My daughter was like then when I quit pumping/breastfeeding. She couldn't do soy and the milk based gave her severe D. We tried Lactose free before going to the Alimentum/Nutramigen and it worked for her. She stayed on Lactose free until she transitioned to cow's milk at 14 months old. She seems to tolerate milk fine now.

I have celiac and a milk allergy. I can tolerate some milk products but for the most part I stick with soy. My dh is allergic to peanuts and he can't tolerate soy milk at all. Although soy in products does not seem to bother him.

I breastfeed our 5 month old but my supply seems to be dropping lately so I have been supplementing with formula. Only about 2 a day. She gets 3-4 oz total a day. Well, we tried the milk based kind and she would scream so much because it hurt her tummy so we went to soy. Now about a month later she tolerates the formula great tummy wise but I have noticed that she gets trimmers after eating the soy milk. I think they are getting worse. Last night it really started to scare me and I put two and two together and realized that it was the formula causeing her to do that. THen my dh says that is what happens to him when he drinks soy. So this morning I call the doctor and they said to go back to the milk based and see what happens. It is a different brand so it may make a difference but what if she can't have either one? What else is there?

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Thanks, She used to get real bad diarreah we could never figure it out. It stumped us and the doctor. I kept a food journal but nothing seemed to be the cause. It stopped when she was about 3 months old and started at 3 weeks. We have an appointment for Monday at the ped. GI doctor. I am cautious about doing an endocopy because she is so young. I might consider that if we ever see blood or she stops thriving but right now she is so happy and healthy. She sits up unassisted like a pro already :)

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I gave her some more milk formula today. The doctor wants me to try it for three days. She cried a lot yesterday after having it but I wasn't sure if it was that or that she was over tired. She woke up screaming last night in her sleep never really woke up but just screamed in her sleep. I gave her a pacifier and she calmed right down. Today she screamed and screamed even after I tried to feed her so I gave her some milk formula and she screamed until finally falling asleep for about 30 mins. Then when she woke up she spit up and it smelled so bad. Like adult vomit I had to take a shower and bathe Maddie too. I know spit up isn't the best smelling stuff but this was really bad. It was never that bad while she had the soy formula. So far the milk formula isn't looking so great :unsure:

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I'm a nanny for a 7 month old...well he's my nephew also. He had the same symptoms. Come to find out, he has reflux. The best thing to do, keep her on an incline at all times. Make her crib incline. Never lay the baby flat. We did this...different baby within 1 day! Burp her often too.

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There is a forumla on the market that uses completely hydrolized protiens which is supposed to make it much easier to digest (sorry I don't know the name of it), and Good Start uses partially hydrolized proteins in both milk and soy forumlas. Might be worth a try.

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Hi,

From what you say about you and your dh's allergies and your baby's reactions to formula, it sounds like she may be reacting to milk and soy. In which case you definitely do not want to go to formula. Find a good lactation consultant or a La Leche League leader. Your milk supply will not drop unless your baby nurses less. As someone already mentioned, it can feel this way during growth spurts - that there is less milk - but this is not true. Your baby will increase her nursing which will stimulate you to make more milk, and then everything will be back in balance. If she is sitting up great and going through big developmental milestones, this is a good indicator that this is indeed probably what is going on.

I'll second Mother's Milk Tea, available from Whole Foods or any health store. And it will give you more confidence that you are making enough :) Also, the amount of milk a woman can pump bears no relation to the amount of milk she can produce while physically nursing. Some women can pump tons, others not so much, but they all can support a baby wonderfully.

Please consider taking a few days to spend physically close to your baby and nurse often. Drop the formula. It is a slippery slope, and an expensive one, for an allergic child.

I would also suggest cutting soy out of your own diet. That may fix your spit up problem. If she is reacting poorly to soy formula, she may well be allergic to soy, and she could be getting this through your milk. If you cut soy out, like your dh, you may have created the perfect dairy-free soy-free drink for her - far more nutritious and healthful than neocate.

Merika :)

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^Thanks we did not use any formula yesterday at all and Maddie did wonderfully. I think she must have been going through a growth spurt because today she doesn't want to eat much at all. All though she still spits up a ton. I will cut out soy from my diet and see what happens. Thanks for all of your support and info.

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