Where Do I Go From Here?

[sjust]

We went to Stanford for a second opinion on my daughter. She is almost 7 months old and is now down from 12 pounds to 11 pounds 8 oz. They told us a very similar story to the G/I we had been seeing which was she looks healthy but obviously something is not right. They want us to put her on Neocate for half of her feedings instead of bf. I am having a very hard time with this. She seems incredibly sensitive to so many foods and solids have gone less than well. I feel like if the weight were the only issue then saying she is not getting enough calories would be the likely cause but she also has green mucus poops and has for almost 5 months now. Nobody has an answer for those. I have had my milk tested and it runs between 20-29 calories an ounce which is more than the formula. I don't know what to do at this point. Do I give in and put her on a formula that I think is bad for her, or do I stand my ground and hope we get some other answer.

Thanks

Sarah

[Guest j_mommy]

Personally I would stand my ground. I wanted sooo bad to continue breastfeeding my son, but my milk had NO calorie content. After 3 months of breast feeding he was still loosing weight. I had to switch to formula and he flourished. But I wish I could have strictly breatfed!

If you think something is bad for your child...don't do it or atleast wait until they give you answers about the mucosy stools before you switch!

Good Luck and I hope you get some answers

[AndreaB]

I'd stick with breatfeeding as well.

Have you have ELISA IgG tests run on you. That's what I did with my youngest. He had broke out with ecema due to intolerances. Once I cut out soy and all gluten his rash went away. It would be easiest and quickest to do the ELISA test instead of an elimination diet.

Have you gone gluten-free? Soy or dairy could also be causing problems.

I've just recently cut tomatoes out of my diet since my youngest seems to have a little problem with them. He's almost 20 months now, but I still breastfeed.

[JennyC]

I don't know your history, but I would continue to breastfeed and I would start a gluten free diet immediately. There have been studies that show gluten can pass through breast milk. If that is the problem then hopefully your baby will start to do better soon. You should be very strict with your gluten free diet, including cross-contamination issues. You may also want to avoid other common allergens as well. I hope your little one gets better. Please keep us updated.

[sjust]

I am currently off gluten, dairy, soy, corn, eggs, citrus, nuts, beans and gassy vegetables. When I first went gluten-free her bm got better but only for about a month. I have been working really hard to find even trace amounts of gluten and ended up changing most of my haircare products to accomodate this. Still the bm is not normal. How do I get the ELISA test? Does my dr. order it? They are running a celiac panel on her along with a RAST test but I know these are unreliable in someone so little.

Sarah

[AndreaB]

I am currently off gluten, dairy, soy, corn, eggs, citrus, nuts, beans and gassy vegetables. When I first went gluten-free her bm got better but only for about a month. I have been working really hard to find even trace amounts of gluten and ended up changing most of my haircare products to accomodate this. Still the bm is not normal. How do I get the ELISA test? Does my dr. order it? They are running a celiac panel on her along with a RAST test but I know these are unreliable in someone so little.

Sarah

The ELISA test I got was taken by my doctor (he's an MD that moved to holistic medicine). You would need to find a holistic/naturopath that does IgG ELISA testing. Since you've eliminated so much already I think it would help try to figure out what else could be causing problems. It is a blood draw and takes 2-3 weeks to get the results back.

My doctor told me that if we are intolerant to something the likelihood of our nursing little ones to become intolerant increases (I forget how much the % was though).

[Electra375]

I don't post often, but I read a lot of posts. I have been reading yours intently b/c of what we've been going through here on the east coast w the Celiac Center in Maryland. We are also FTT, we're waiting on several tests results, although the first set for CF, thryoid, kidney are all negative.

This is going to sound really lame maybe, but I ask b/c sometimes it is as simple as more calories and sometimes no one else as asked... But read through to the bottom of my post b/c I was given very good instructions for putting weight on my baby by a really nice female GI doctor.

Are you sure she is nursing long enough and really getting enough? The first thing anyone should have suggested really, also the hindmilk versus foremilk that causes bowelms to be very different. This is as far as I got into finding out what was wrong with one of my children while nursing, 3 years later it was confirmed Celiacs.

Have you gone to a LC who should have you weigh your child (clothed is fine for this test), feed baby and weigh baby again? The difference between weighings give you a very good approximation of how much the child is gaining from the breast. I did this most recently in the hospital, even though they really wanted me to pump and feed.

And if it isn't a calorie issue, more likely a malabsorption issue then blood tests would indicate this the prealbumin and creatine are very good for this and usually over looked b/c docs look for Vit D, Vit K and Iron as malabsorption signs and skip over the little signs.

I have just gotten back with a FTT child from the hospital and Celiac tests have been done. The biopsy was done last week. We were admitted to the UMMC b/c my child had dropped about 10% of his body weight in less than 2 weeks. At first they wanted to put an NGtube in to feed him, I held them off by saying, he can eat, lets let him eat first before doing anything so drastic. But it sinks in the seriousness of a baby who fails to gain weight and then drops, my baby's head stopped growing too.

*****

What was suggested to me and it is what I am doing --

I am pumping and adding Elecare powder to my breastmilk to give it more calories. I was asked to feed 3oz of bm fortified w 1/2 scoop of powder every 3 hours.

I am gluten-free and df. The hospital tried to give 24 calorie Enfamil even though I said my child would not tolerate it. It was promptly thrown it up all over the nurse who fed it while I stepped out for some food! Thankfully it happened to staff and not to me, mother's have no credibility in the hospital as to knowing their child...

I am also nursing to maintain a good supply, pumping alone will eventually cause a drop in supply. I have on order a SNS so I can ditch the bottles for feeding the EBM.

Neocate and Elecare are the ONLY ELEMENTAL only formulas. The doctors tried a semi-elemental which is still derived from dairy and my baby just didn't tolerate it well at all. Pregestimil is for malabsorption, but it caused watery stools after I returned to gluten-free. Confused I insisted a change to an Elemental formula.

You can call Neocate and get a sample or two sent to you if your doctor makes the request for you, if your doctor wants you to feed this formula, I would call and arrange for the free samples -- it is very pricey.

Bottom line weight gain is needed, growth is needed, head growth halting in our case is serious business b/c of how rapidly the brain developes in the first year of life. I'm not a fan of formula, it's never touched the lips of any child before this one. But I also know he needs to make up for his loss more quickly to prevent long lasting effects of his weight loss and head not growing for 6 weeks.

IF my child failed to gain weight under the protocol we are on right now (fortunately thus far I'm seeing gain), I would not hesitate to give straight Elemental Formula as a trial to see if my child began to thrive (I would pump in the mean time to maintain my supply in the event it didn't work or I decided to give bm a try again). There are times of medical need where formula is not a bad thing, it's original purpose was to aid a FTT baby that belonged to Mead Johnson! The start was not out of malicious intent to over come the world and sway moms from breastfeeding, even if that is what did happen.

I hope you get some weight on that baby, even if you don't find out now what's going on, you little one needs you to help her grow in anyway that makes that possible. I say that from my heart having had the same delima and weighing the options of what I could do and what I needed to do for my baby.

I have some resources for "fatting" up bm if you're interested. I'm trying them, but from what I'm pumping I see very little fat. I'm a skinny milk producer!

Did I read you were gluten-free having the Celiac tests done? I would not redo them now b/c right now your child is critically in need of gaining weight. I'm honestly surprised you are not in the hospital. I will say that from experience with my older Celiac child, gluten messed up his intestines so badly that he reacted to every major food allergen out there. Once his intestines healed, he was able to eat most foods again, even raw dairy, but not pasteurized.

Keep updating, I pump and spend time on the internet now!

[Fiddle-Faddle]

Lots of great advice from Electra, above!

I'd say you are looking at 2 possible issues, or perhaps both at once.

1) Possible malabsorption: this is where diet (baby's AND yours) comes into play. You may need to eliminate many kinds of foods before you find what works. What are you and baby eating?

I think it might be wise to eliminate everything but breastmilk from baby's diet and all wheat and dairy from yours til you figure this out. If the baby's problems didn't start til he started solid foods, though, that would indicate that it is likely not YOUR diet that is the problem.

2) the breastmilk: I was told initially that baby had to nurse on both breats. Turned out, I had kind of hyperactive let-down, where I made a TON of foremilk that came out very quickly and sometimes made the baby choke--and the baby had green mucusy poops. The lactation consultant was the only one who picked up on this. She told me to let the baby nurse on one side as long as he wanted, and to give him the other side at the next feeding--and not to wait 2-3 hours between feedings, but more like 30-90 minutes. Good-bye, green mucusy poops, hello nice mustardy poops and weight gain!

I think ELectra made another good point in saying that mothers have no credibility with the doctors.

If you PM me, I have the name and number of a La Leche leader whose husband is a pediatrician. They are in Pittsburgh, but maybe they can point you in a different direction.

Good luck!

[JennyC]

I fed my son breast milk that I pumped for 9 months. He would never breastfeed from my body. If you need decrease your breastfeeding sessions you can maintain your milk supply by pumping thoroughly and often. I rented a hospital grade Medulla double breast pump. I pumped EVERY three hours during the day--NO exceptions. If it had been two hours and I was going to go to the mall, I would pump before I left. You need to make you body think the baby needs more milk. I would pump until both breasts were completely empty. At that time nothing would come out for a couple of pump cycles and then really think fatty milk would come out. If you think that your milk is too thin then you could switch bottles or after the watery fore-milk is ejected and add it back at the end until you get the right consistency. By following this protocol I was able to exclusively "breastfeed" my son for 9 months, despite the nurses saying I'd never be able to maintain my milk supply. Why would they ever try to discourage a young mother from trying her best to give her stubborn baby breast milk?

[sjust]

I would like to thank everyone for their support and especially Electra for the great advice. How old is your little one? You mentioned testing for prealbumin and creatine. How are these tests done? Blood, stool, urine? As fas as I know we have not done those but I will definately ask that they test for them. Also the kidney test, how do they do that? Really they have done very few tests and that is part of my frustration. Because she is not lethargic and seems happy they seem unwilling to step it up even though her weight is going down.

We have checked for a foremilk/hindmilk imbalance and the LC says that is not the problem. She also says the calorie count on my milk is good. We have done pre and post weight feedings in the past and she was getting plenty of volume although that was months ago and I may go rent a scale tomorrow so that I can see how much she is getting in a 24 hour period. I would love to know what you are doing to try to fatten up your breast milk.

I suspect malabsorption is our issue because I have increased her feedings and she still continues to go down in weight. She was up to 12 pounds and is now down to 11 pounds 8 oz and we will see tomorrow if she is down more.

The Elecare is what we were given to add to my breast milk but I just can't bring myself to give it to her. She is so sensitive that I feel it would make matters worse. We have started solids in the last few weeks and so far she has had a reaction to every one. Avacado gives her horrible gas that is very painful and pumpkin makes her throw up. We tried rice cereal tonight for the first time so we will see but she is not very fond of it.

My other issue is that no matter what pump I use, and I have tried the hospital grade one, I can not get a lot out. Yet when I put Rebecca to the very same breast I can hear her gulping away. It makes me think that my supply would dry up very quickly and I am already on herbs to increase it so I hate to supplement for that reason.

Sarah

[Guhlia]

This probably isn't an issue, but I thought I should mention it just in case. I know some sanitary napkins are NOT gluten free. Could this be true of disposable breast pads too since they also have to be extremely absorbent? Could this be a hidden source of gluten? I know I'm really reaching out on a limb here, but it seems like it could be possible.

Also, we ended up giving my daughter Neocate after three months of breastfeeding and it made a world of difference for her. She was happier and healthier within days. Granted, we didn't even know what gluten was back then so we didn't know to try cutting it out of my diet. Still, it made a world of difference for us.

[Fiddle-Faddle]

Is there any chance vaccines are a factor here?

From what you say, her problems began at around two months--which is the age that many pediatricians begin vaccinations. You've probably already wracked your brains, trying to figure just what might have changed around then.

I'm not saying never to get any vaccines. But at this point, with her health in jeopardy, I would wait until all her health issues are totally resolved before introducing any vaccines. Even in perfectly healthy children, I think it's much wiser to introduce vaccines at a much older age--2 years old rather than 2 months--and to only give ONE at a time, rather than many.

I realize that this is totally against mainstream md advice, so I would also suggest that you thoroughly research this before making a decision.

I assume they've ruled out any kind of cardiac problem? My son had trouble gaining weight because he had a hole in his heart, that was only diagnosed when he was about 2 months old.

You sound like a very loving and intelligent mom. At this point, trust your gut instincts, whatever they are. You know your child better than anyone, including the doctors, and including all of us here.

You might want to look up and PM TCA, a mom who used to post here. Her baby had MAJOR reactions to many foods in the mom's diet, and just about every formula, too. She probably knows more than the rest of us put together. She did a total elimination diet, kept careful charts, and figured out what foods her daughter was reacting to in the breastmilk by when she did or didn't gain.

Bets of luck--hang in there!

[AndreaB]

Yes, TCA would be a good resource.

My youngest son started his intolerance reactions after his 2 months vac's btw. He hasn't had any since and he's been very healthy, aside from the intolerances.

Metals could be playing a part here to. They do use metals, along with other things as adjuvants to get a reaction from the immune system.

Alternative testing would be the best way to rule that it or out......primarily BioSET testing. I do know they handle young ones too.

[sjust]

We have not ruled out a heart condition, in fact they have not even looked at that. I should ask about it. What would you recommend I request? We did go rent a scale today so we will be doing pre and post weights for a while to see what she is taking in. I figure if she is taking in enough ounces per day we are going to go sit at the dr. until they do something even if it is admit her to the hospital. If it turns out she is not getting enough ounces, I will try the formula So far all of her tests have come back normal and the dr. says that by lab work alone she is the picture of health, yet she continues to go down in weight. She is now down to 11 pounds 5 ounces a drop of 3 ounces in a week.

It is interesting that you say your problems started after the 2 month vac's Andrea because that is when Rebecca's started as well and she has not had any since. I often wonder if it was a problem or just a coincidence. I will not give her anymore until she is doing better.

How do I look up a member?

Thanks

Sarah

[April in KC]

Sarah, you're getting good responses, but I want to weigh in to say that breastfeeding and Neocate can go together succesfully. My two oldest never had a drop of formula, but I'm thankful I had Neocate with my youngest.

My doc suggested this one time when I was at my wit's end - what about you doing a trial of Neocate while pumping for a few days to a week (and saving the milk)? That way, if you're getting a source of gluten you haven't figured out, you might be able to tell enough of a difference to make you want to keep looking. Or maybe you'll find gluten isn't the only culprit.

I have three boys. My youngest son had multiple intolerances, GI & skin problems that we just couldn't solve, despite me eliminating peanuts, nuts, fish, shellfish, egg, milk, soy, wheat, rice and oats from my diet. After MY first trial off wheat, I started putting two and two together and figured out I had a personal problem with gluten. I did a quick gluten load/challenge, and both he and I got worse (and got tested quick). When I cut out all gluten (i.e. what was left, which was the gluten that's in barley malt in cereals like corn flakes), he got MUCH better but not 100%. When I cut out all grains (corn) he got 100% better. But we were both a little thin by then!

So I kept nursing, but I made what I thought was a difficult decision to supplement with Neocate. I did not start Neocate until he was 9 months old, and he still accepted it. And we just did both. We kept nursing until after his first birthday. He is 13 months old now, fat and happy, with clear skin instead of bleeding eczema, and dipes that aren't alarming. We're gradually figuring out what he can eat - red potatos, carrots, beef, some fruits and some poultry - we have to be careful on poultry as some of it is injected with corn.

Nursing alone (without Neocate) would have worked (once we figured out the corn part), but having the Neocate helped take some of the pressure off and get him looking good in a hurry.

Good luck with your decision!

April

[AndreaB]

It is interesting that you say your problems started after the 2 month vac's Andrea because that is when Rebecca's started as well and she has not had any since. I often wonder if it was a problem or just a coincidence. I will not give her anymore until she is doing better.

I just had my two sons tested with ASYRA today and my youngest came back with Pertussis, Polio and Pneumonia/Meningitis (which I assume would be the Pneumococcal). Those vaccines are causing reactions within his body.

How do I look up a member?

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