Vent-Breastfeeding on the line; not sure where else to post this!

[Unitsi]

I'm so upset right now. Like seriously bawling. My ebf DD has had green, mucusy stools with microscopic blood and frequent projectile vomiting since she was 2wks old. (She'll be 4 months on the 23rd.) We tried treating a possible foremilk/hindmilk imbalance--compressions while nursing, pumping and throwing away some of the foremilk,etc., until they actually analyzed my milk and said the fat content was good even without all those measures. We've been trying various elimination stuff and even did a trial on hypoallergenic formula for a week, all with no change. On Thursday she had been doing this weird latch on-latch off thing (on for two sucks, pop off then go immediately back on for two sucks, etc.) for a couple days and I thought she felt lighter so I took her to the ped just to weigh her--she lost half a pound in 9 days! They admitted her to the hospital because she was also not peeing. They did all kinds of tests for anatomical anomalies which all came back negative, and blood tests for C. dificile and for allergies, which we are still waiting on. They said the allergy test wouldn't be very accurate since she's so young. They sent me home from the hospital last night (just me, not DD) because I developed a fever of 102.7 (which turned out to "just" be mastitis but the redness didn't develop until today so they still aren't letting me back in, and I'm not allowed to hold her until 24 hours after my fever is gone, which it's not yet!!), so I've not been there for all of her updates. My mom just called and said that both the gastroenterologist and the pediatrician think it's time to give up on the breastfeeding because putting her through all the food trials and her not handling them well could give her chronic gastritis and/or lifetime food allergies. But like I'm willing to eat only rice and chicken for the next nine months if I have to! But they are both saying that her allergies are so severe that they wouldn't risk it. But I worked sooooo hard to make this work out not only with trying allergen elimination but also with the fact that when she was born she was too small and I was too big to nurse so I had to pump FOREVER it seemed, and I don't want to give up =[ even my mom is on their side now and I just feel so defeated because I really fought for this =[ I know this happens to a lot of women, as one friend brought up out of annoyance when I called to talk to her, but somehow knowing I'm not the only one doesn't make me happy about it or feel less disappointed and confused!

[Pragmatist]

:hugheart

When you eliminated dairy, how long were you off of it and did you eliminate all sources? Milk is typically the number one allergen.

What would you give her if you did stop breastfeeding if she didn't do well with the hypoallergenic formula?

There are a lot of moms here who have dealt with allergies so hopefully we can help you.

[Unitsi]

I have been off it for just over two months. No dairy or anything containing dairy products (milk, whey, ghee, casein (obviously), potassium lactate or really anything with "lact-", anything calcium i.e. calcium carbonate because it could possibly come from dairy, the works.) And no soy, including anything that lists vegetable oil without specifying what kind because it might be soybean oil, soy lecithin, and anything that says "natural or artificial flavors" unless i call and ask if those flavors include dairy or soy in any form, or any of the things i listed above. They are trying a different formula--one that instead of having the milk protein broken into smaller carbon chains (which renders it unrecognizable to the immune system and should theoretically work but sometimes doesn't), it has only single carbon molecules. In other words, the protein is literally as broken down as it can possibly be so it literally cannot be at all recognized by the body as a potential allergen since that recognition process depends on the physical conformation of the protein chain, which in this case is no longer a chain and therefore can't conform to the physical structure necessary to elicit an immune response.

I hope someone can help too because I'm not ready to give up just yet!

[Annalou]

if you go with your gut, what does that say?
mama's gut is typically right, even if science can't prove it exactly. if you are willing to eliminate things in your diet I'd still try, you may find that she doesn't tolerate other foods and formulas well enough to make a change in her health :(
you can feed her more fats (little ones generally like coconut oil you could try and see what happens)
my DD and I have allergies and I figured out her gluten issue when she was just 8wks, I had to go against what her Ped said and force info out of her to get answers.
I know the top allergen is dairy, then Gluten (wheat barley rye) Maybe eggs or nuts after that, I didn't go any further because we found that there was so much family history in the gluten allergy that I was sure that was it, and it was (go with your gut mama)

have they been able to label what's going on with your DD? research as much as possible!! also use what you know about your self (how food makes you feel, family history with foods or diseases etc) because your baby will build from your body issues, I learned to listen to my body much more after we went off gluten because we ran into other little problems later and by then I could usually figure it out by paying attention to me and her
:( sorry! this is soo hard!
hope you can get a handle on all of this soon!! :heart

[mamacat]

There is another mama here who went thru a lot of that with her ds and finally found some bht healing things for him.I will PM you her user name here and maybe you can PM ber and ask for specifics

[Codi]

:hugheart I'm sorry mama! It sounds like you are SO dedicated to giving your baby the VERY BEST. You are awesome for that! :hug

But they are both saying that her allergies are so severe that they wouldn't risk it.

They are saying they wouldn't risk you altering your diet because of her allergies? :scratch What is the alternative? Formula?

[Unitsi]

Thanks ladies! I will definitely pm her and try to get more info. My gut is saying don't give up! (and I don't think it's just due to peer pressure from my engorged boobies! :lol) Codi: they are saying they wouldn't risk me pumping while eating only chicken and rice and a few select gentle fruits and veggies and then after 1.5-2 months on the formula trying an experimental "nursing day," after allllllll the allergens have had a chance to work out of my system, to see if she tolerates it then and i could go back to nursing her. Which I think might be a little excessive? Because from what I've read you see the reaction within a few hours to a day, and I will even wait up to a week before trying again if I see no reaction the first time. It's not like I'm going to barrage her with a solid week of nursing as a test, ya know?

[zak]

Are you working with an IBCLC? What formula are they suggesting?

If the baby is reacting to the proteins you are eating (likely), breastmilk from you while limiting your diet would be preferred (as you know, want, feel) vs a cow/soy based formula. If they are truly worried about long term issues, then they cannot honesty suggest cow/soy formula as if it had no risks. :(

---------- Post added at 03:09 PM ---------- Previous post was at 03:08 PM ----------

Aaaaaand, if the baby is already small, and maybe immunocompromised, the antibodies coming from direct nursing is a huge benefit to her little body.

---------- Post added at 03:12 PM ---------- Previous post was at 03:09 PM ----------

One more post then I will stop, lol,

You said the week trial on hypo formula didn't work?! What are they suggesting?

[Codi]

Nodding along to Zak's questions. :yes

[Unitsi]

I am working with an IBCLC, she's upset they're trying to push me into formula, but aside from a total elimination diet she's run out of ideas. Same with all the women I've talked to through LLLI. Instead of the hypoallergenic formula that has partially broken down proteins in it (level one hypoallergenic) they've got her on one where the proteins are completely broken down--thereby eliminating any chance that the body could react to it. It makes biochemical sense, but if I just get all those proteins out of my milk in the first place it won't matter, I feel. I don't take any meds or vitamins (even prenatals have soy) so those aren't an issue. My mom tried telling me a few minutes ago that my milk is still MILK, so she could be allergic to my milk itself and I was just like "No. That's ridiculous." and she said that weirder things have happened like people being allergic to the sun and I tried telling her that they aren't. "allergic" to it, they're just more susceptible to its damages because they're severely amelanistic--they have a genetic lack of DNA to produce the pigment that protects them, not the PRESENCE of an antibody that causes them to react as in an allergy, but she just wasn't having it hahaha

Tue other thing is that they found microscopic blood in my milk and said it's commonly the result of breast cancer, but that the blood isn't causing my daughters problems and that if I did have cancer it wouldn't affect my nursing except that I clog daily in the same ducts, which is why they're thinking breast cancer. I'm 22, my husband is still in school, I just graduated, this is our first baby, and we are all just feeling a little overwhelmed right now =[

[zak]

It's so much all at once. :pray


I have heard that babies can be allergic to lactose in Mother's milk. It's wayyyyy rare, but not impossible. Now, the lactose in your milk are tiny molecules compared to cow or goat, but it still has to be processed. :think

Not finding much via Google. Might break out the books in a bit.


Hugs, Mama.

[Unitsi]

I just thought of something, and I might be judged for using birth control but I was originally going to be going to med school and we didn't want to start our family until after then so we could be more dedicated to our kids. When we conceived, we were using the pill, condoms, spermicide, and the rhythm method as contraceptives. No antibiotics, and I was very good about taking the pill correctly. So when we found out I was pregnant it was a)a shock, b) a good bit into the pregnancy, with almost four weeks of puking 20-50 times a day under my belt, and c) after still taking the pill every day. For like 11 weeks. Do you think it's my fault she's got these issues? Between the pill and the poor nutrition during the hyperemesis stage?

[zak]

:hugheart I wouldn't even go there.


I will say there was a he article I saw this week on gut health related to the pill - mothers and their babies to be.

I wonder if a serious probiotic would help you both?! Have you done that yet?!

[Kiara.I]

Do you think it's my fault she's got these issues? Between the pill and the poor nutrition during the hyperemesis stage?

NO.

Things happen. Many people are on the pill before (while) getting pregnant. Some people have hyperemesis.

But baby strips the nutrition from your body, and will grow anyway. You didn't cause this.

[Unitsi]

It is a lot at once. If I were to write a novel of just the stuff we've dealt with for the past two weeks, the critics wouldn't like it because the characters would have to go through sadistic experiences lol my daughters health stuff, which i suspect is also causing the endless (8 hours plus) crying, the breast cancer stuff, i passed six kidney stones this week, my job never actually put me on maternity leave so i just got a call from my insurance saying it has been canceled, the IRS messed up my husbands financial aid stuff so he may not be able to go back this semester, meaning he will need to be a 6th year senior, we were denied from WIC even though we only make $25k a year because we own a car, the mastitis and seven clogged ducts I'm still trying to find some relief from without having a baby to nurse--all yis within two weeks.... I asked God like a week ago what else could possibly happen...bad move ;-)

---------- Post added at 03:58 PM ---------- Previous post was at 03:56 PM ----------

Oh yeah I forgot--she was on a probiotic too with no results! That was during the "is it a milk imbalance" phase. But the lactation consultants and the ped are saying to put her back on them even with the formula. Any brand recommendations? I have Udos choice.

---------- Post added at 04:00 PM ---------- Previous post was at 03:58 PM ----------

The probiotic thing was only a week though as per the doc--maybe a longer trial might be better?

[zak]

I don't know about brands and stuff. :hugheart


I would think if she has some serious gut health issues, it would take a while to get the balance back. The fact is, ONE BOTTLE OF FORMULA is enough to cause imbalance and it takes 2 weeks minimum to regain gut flora balance from ebf'ing from that point on. Not taking into account food sensitivities or allergies. :(

I am really at a loss, just praying and hoping to support you, no matter what. Lots of love, mama.

[EnglishRose]

Oh blimey :hugheart

Praying. You poor, poor thing.

Is someone looking into your health? I think that Los needs to be a priority so you can hopefully get rid of the Rory.

---------- Post added at 01:49 PM ---------- Previous post was at 01:48 PM ----------

Rory, who's Rory :giggle I meant worry.

[daughter_of_faith]

I couldn't read and run. :hugheart

How can they deny you for WIC because you own a car?!? What state? I've never even been asked about vehicle ownership for WIC. (It was a question on the application for a state medical card though).

[nanookmama]

:pray4

I have been through a long line of breastfeeding woes. Hang in there. Whether you end up breastfeeding or making formula or spending crazy $$$ on hypoallergenic stuff, you will always be her mama, and it sounds like you're a very committed, dedicated mama at that.

:heart

[mamacat]

One week of probiotics isnt enough to tell and also you might need to start with itty bitty amounts because starting them sometimes can cause a flare up of the very thing trying to treat also usually is helpful for both of you to be on them

[nanookmama]

It's so much all at once. :pray


I have heard that babies can be allergic to lactose in Mother's milk. It's wayyyyy rare, but not impossible. Now, the lactose in your milk are tiny molecules compared to cow or goat, but it still has to be processed. :think

Not finding much via Google. Might break out the books in a bit.


Hugs, Mama.

I think I remember Michelle Duggar's youngest having this problem. I remember reading that once they switched her to a certain formula, the little thing did much, much better. Michelle Duggar had a HUGE freezer full of milk she donated after that. I wonder if that rabbit trail might help find a name/case study for comparison?

[zak]

Yes, that's true.

[mwwr]

It is not possible to be allergic to your own mother's milk, as per my pediatrician. Lactose intolerance before the age of 5 is rare. Malnourished women produce milk which is *still* superior to formula in every way. The only case in which your milk would not be best for your baby is if your baby has galactosemia or PKU, both of which are usually tested for in the hospital. Are you in touch with your local LLL Leader? There are lots of us here, myself included, but there is no substitute for IRL support. I can do more research later, but I have a migraine ATM. BBL.

[Unitsi]

Hmm okay.... I think I will start probiotics and start easing her onto the probiotics with the formula since the doc said to use them anyway, stay on the elimination diet until I do the nursing trial at 6 months...I don't even want to think about introducing solids :(.....then nurse for like one feeding and if I don't see an effect, do two the next day? And I'll look into the Duggars' story and see what all they tried. I mean if all I'm eating is chicken, rice, and enough of the right fruits and veggies to stay healthy and she's STILL reacting, then I'm not going to force the issue because to eliminate anything else would be jeopardizing both our health. Thank you so much for your support and suggestions ladies!

[cbmk4]

Reading Unitsi's first post, it sounds like the docs think her baby has a severe case of FPIES. It also sounds like they already tried a hypoallergenic formula like Nutramigen or Pregestimil but that brief trial didn't prove to be effective. (I was confised if that trial was 1 week or 1 month.)

In any case it now sounds like they are having her dd take an elemental formula--either Elecare or Neocate which is broken down into amino acids, no whole proteins. In severe cases of FPIES, this is necessary or the gut just cannot heal.

Again, only guessing, but it sounds like with her dd's severe symptoms and weight loss, they don't want her to have breastmilk while mama clears every potential allergen from her diet--that could take weeks which the baby may not be able to tolerate.

To the OP, I am praying that you get very clear communication from her docs and lactation consultants, that if they truly bieve she must be on formula right now that they could give you some indication of whether they think she could go back to breastmilk after you have cleared all potential allergens from your diet, etc.

Again, I am making some educated guesses based on what you posted. I am so sorry that you and your little one are going through this. Please ask for clarification and a second opinion if things aren't making sense to you. You and your baby deserve compassionate care.


See that I cross posted with you, Unitsi!

[GraemesMomma]

Are you interested in different practitioners? Someone who's intimate with gut health and is pro-breastfeeding?

Also, would you be willing to find a family chiropractor trained in infant adjustment? There are stories about chiropractic adjustments on infants that are really amazing. I've had all three of my babies adjusted. LMK if you want help finding a good one.

And :hugs I'm amazed at your dedication. Your daughter is blessed :heart

[mamacat]

When my dd had gut stuff going on at age 5 had to give her a tny pinch of the pro to start.Also the woman I told you about never stopped nursing.She did go down to a very few foods as I recall like green beans and poultry and rice but using the probiotics and the clay healed her sons tummy. Another thought is that know at one time it was using bifidus only powder for infants under 6 months that was advised tho yiu yourself can take the broader spectrum pro

[GraemesMomma]

I'd actually recommend acidophilus-only probiotics. No bifidus.

[mamacat]

Thanks Amanda.Wasnt sure if bifidus only was old info or not

[MomtoJGJ]

Just more food (ha!) for thought.

My oldest was so much allergic to dairy that I could not even eat anything that had been served with a spoon that had been used with something with dairy in it and had been washed. I could not eat anything with "may contain" or "processed on". She could not be in the room when a baby was taking a bottle in the nursery. And it took over a month for it all to get completely out of my system and every single exposure started it over again.

Our ped determined that there was only one formula she could have been put on... I do not remember the name though. It wasn't just enough to have the proteins broken down... any trace of dairy at all had to be just not there.

Good luck... it really sucks to think that you are making your baby sick, but there's nothing else to do either.

FWIW, my oldest started being able to tolerate the "may contain" and other trace amounts through my milk around 15mo, and by the time she was two we both could eat/drink dairy products without dosing her with benedryl and calling the ped on call. :) Now she can tell when she's having too much.

[Unitsi]

Cbmk4: that's exactly what they did, but they never put a name to it! Do kids with that grow up to eat normally? And now I think I will take those extra measures too, momtoJGJ. At least the big ones like silverware. Gotta go pump but ill be back to read more thoroughly. I'm going crazy bring away from my baby for 24 hours now!!!

[Sonata]

It sounds like you have some wise advice. I am just adding :hugs

It sounds like you are so dedicated to taking the best care of your sweet little one!

And you didn't possibly do this damage by what happened in early pregnancy. :no

[sweetpeasmommy]

Reading Unitsi's first post, it sounds like the docs think her baby has a severe case of FPIES. It also sounds like they already tried a hypoallergenic formula like Nutramigen or Pregestimil but that brief trial didn't prove to be effective. (I was confised if that trial was 1 week or 1 month.)

In any case it now sounds like they are having her dd take an elemental formula--either Elecare or Neocate which is broken down into amino acids, no whole proteins. In severe cases of FPIES, this is necessary or the gut just cannot heal.


I was thinking FPIES or EGID as well. Quite a few have found healing using the GAPS diet and several are on this forum. I've linked this thread to them. It's not my area of expertise. :pray4

[newday]

oh sweetie :( that is so heartbreaking :cry

you are in my heart and prayers.

[lizzyd]

Hi there, haven't read all of your posts but I'll just jump right in. I was in a similar situation... but worse. My daughter was in such immense pain that she actually did not eat much at all (maybe 10% of her needs) and she was tube-fed for a long time. We tried elemental formula for awhile, and there actually was one (only one) that she tolerated. Do not go that route. If I had known then what I know now, I absolutely believe that we could have avoided a feeding tube (she had one surgically placed) and I also believe that I could have kept her on breast milk.

She has a leaky gut. The good news is that she can heal. The bad news is that it will involve radical changes and you might not find much support in the medical community. Even lactation consultants, in my experience, are ill-equipped to deal with worst case scenarios like mine and yours. Basically she needs some gut healing and you might have to go to extraordinary measures in your diet - I know one mom who has been eating only grass-fed beef for months and months.

Check out my friend's blog - her story is one of the best. http://blog.elliebellyupdates.com/p/her-story.html And check out http://gapsandkids.com. There is a group of us walking this same path and we're healing our children and we're exceeding all expectations. Although I did try a total elimination diet, I'm not one who figured this out in time and my daughter ended up on formula for several months. But in our group we do have some breastfeeding moms who were able to tailor their diet for their babies.

It is not possible to be allergic to your own mother's milk, as per my pediatrician.

Just goes to show that the medical profession doesn't have a clue. There was nothing "wrong" per se with my milk - I actually donated mass quantities of it to three other babies. There was something wrong with my daughter's ability to digest it. I never would have believed it, had I not experienced it.

[TestifyToLove]

It is possible to be unable to process components in your own mother's milk, however. Those metabolic disorders (such as PKU and Galatasemia) are tested in the newborn metabolic screening. However, there are a group of such disorders that would make it deadly to consume your mother's milk or even elemental formula. Those babies require very specialized formula that removes the component that they cannot process.

[mamacat]

Has she been tested for those kinds of things?

[tnaallen]

When my dd had gut stuff going on at age 5 had to give her a tny pinch of the pro to start.Also the woman I told you about never stopped nursing.She did go down to a very few foods as I recall like green beans and poultry and rice but using the probiotics and the clay healed her sons tummy. Another thought is that know at one time it was using bifidus only powder for infants under 6 months that was advised tho yiu yourself can take the broader spectrum pro

Are you thinking of me? :) it was zuchinni, pears, rice, and organic soy free/gluten free turkey.... for months! I'm telling you, tht clay worked in a weeks time and even dh would stop an tell strangers about the miracle it was.

OP, I pm'd you my story, if you're interested.

[mamacat]

Oh yes Amy I told her about you and Im so glad you sww this and PMed her

[Tandem mama]

Wow mama, that is so so very much. :pray4

[GlacierLily]

:hugheart:pray4