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Intro and a PLEA for help!

798 Views 16 Replies 12 Participants Last post by  Ammaarah
Hi everyone,

I'm sorry to have my first post be an immediate plea for help, but I've been putting off introducing myself.

My DS (first babe) is 10 weeks old. I used to be as mainstream as they come, and since first researching the vax issue (he is unvaxed and will probably stay that way), I am now questioning everything and am in a really terrifying place. I am trying to change everything fast, but there is so much to learn.

The first disaster was BF. I tried SO hard, but something terrible happened. I had a "reaction" to oxytocin. It is such an incredibly long story that maybe I'll post it another time, but for now lets say I tried to BF for one horrible week, and tried to relactate 2 weeks ago, and ended up with an adrenalyn reaction both times, pounding heart, total insomnia, shaking and horrible anxiety. It has also caused a relapse of a thyroid disorder I have (Graves Disease). So lets just say for now, BF will make me very sick.

Here's my problem:

I have suspected a while DS might have a sensitivity or allergy to milk protein. (Either that, or it's reflux in which case this is all moot).


chronic stuffy, nasal congestion
red ring around anus
temp. always around 99.4
VERY fussy after eating
needs another 1/2 ounce about an hour after eating
stools are really slimy

So I called the ped. today and they suggested trying soy formula. I am not too thrilled about it because of the sugar in the soy formula, as well as potential allergy issues with soy etc.

The ped. suggested to try soy for 1 week and see if it improves. Is a week long enough to fully get the allergens out?

Or, should I be trying a hypoallergenic formula such as nutramigen? (which has corn syrup solids too)?

Or, maybe there's a company out there that acutally makes a NO sugar infant formula?

Believe me, I would sooooo rather be BF. To the point where I'm even considering it again even if it makes me sick (which doesn't make a whole lot of sense but I'm at the end of my rope)!

I am a huge believer in allergies/sensitivies causing terrible problems in life. For me, I haven't eaten anything processed in 2 years (esp. during my pregnancy) and maybe that's why DS is so sensitive??? I don't know!

Help!! I'll take any advice I can get.

Edited to add that he is in the 90th percentile for weight and eats 40+ ounces a day at only 10 weeks.
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I'm sorry you're having such a hard time. I have never heard of breastfeeding causing health problems like you decribe. (not that I'm saying that it can't happen) If I were you I would find a doctor that is supportive of breastfeeding to see if there could be any other explanation for your health problems while lactating. If breastfeeding really is not an option, I personally would use a hypoallergenic formula rather than soy. It is my personal belief that soy is not good for you. You will find differing opinions on that, however. I don't know about the allergies. It seems to me that not eating anything processed would be a good thing. I hope someone else can give you some more advice. Good luck.
Wow...I don't have any good advice for you, only
! I just wanted to welcome you and say that you have definitely come to the right place for advice and support. There are so many wonderful mamas here.

Good luck mama!

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Thanks for the welcome!

Just to be more clear, I literally talked to 3 lactation consultants (one was really good), 2 OB's, the pediatrician and my endocrinologist about the BF "reaction". No one could help me! I wrote to LLL, but never heard back from them.

I had even thought that maybe the "adrenalyn" feelings were due to hormones just postpartum, but when the relactation effort at 8 weeks produced the same result within 24 hours, I became convinced it was due to BF.

I would gladly "sacrifice myself" to put an end to this formula H*LL and try to relactate (esp. since we aren't vaxing) but what good am I to my son with no sleep, a pounding heart, miserable, sick and hyperthyroid??

I just don't know what to do.
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Is there a local LLL group that you could attend? What about a milk bank? Here, there's a Mother's Milk Bank. They collect and pasteurize donated breast milk for preemies and infants of mothers who cannot BF for whatever reason. Would something like that be an option?
If your baby is sensitive to dairy, then there is a good chance (about 50% iirc) he will be sensitive to soy as well. My twins are supplemented because I have low supply and they only tolerate Nutramigen. They were sensitive to soy and dairy. I am also really wary about sustaining an infant on processed soy. We just know too little about it. Nutramigen not an ideal choice because of both the corn syrup solids and the insanely high price, but it is the best we can do. You could try it for a week or 2 and see if you see a difference. If you do choose the Nutramigen, see if you qualify for WIC as they will cover it with a prescription. A dairy sensitivity can definitely mimic reflux. You can try giving 1 cc of Mylanta and see if this helps the fussiness. If it does you could also ask your ped about a prescription for zantac.

I am also wondering about the amount your baby is taking in per day. 40 oz sounds like an awful lot for a 10 week old. Could he be fussy because his tummy is too full. This can also cause reflux. Maybe try smaller, more frequent feedings. I know we got into a a cycle for awhile where I would feed them because I interpreted every cry as a hunger cue. They were crying from reflux. Nursing or drinking from a bottle would temporarily push down the stomach acid and make them feel better, only to have it start up again 30 minutes later. It was a vicious cycle.

I agree with the pps about finding a bf supportive doc if you decide you want to make another attempt at relactation. I did a quick Google search and could find nothing about Grave's disease symptoms worsening from breastfeeding. Pregnancy can cause an increase in symptoms. Are you under teatment? It looks as though there are some medications it is safe to take while nursing as long as the baby is monitored to make sure he does not become hyperthyroid.

Hope some piece of this rambling post is helpful.
and good luck!
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We cross-posted has1. Do what is best for both you and your baby. You will find support here no matter what you choose.

peacefulmommy: Just FYI, milkbanks generally charge in the area of $3 per ounce and often are available only for sick and premature infants so they are not an option for many mamas. The only option is to look for a mother one trusts who would be willing to donate or sell some milk. My boys got milk from a friend for awhile and it was a really gratifying relationship.
Okay here's my two cents. I have hormonal issues that caused supply issues. I understand the heartbreaking issues of not carrying on a nursing relationship with a child. My DD NEVER had issues with her formulas. I had a much different experience with DS. I REFUSED to give them Soy. I give him the Gentlease LIPL from Enfamil or the LactoFree. They have caused him no issues. He isn't fussy, Gassy OR spitty. He doubled his weight and now weighs more than his sister did at one. I am glad I searched researched and did a LOT of trial and error. It was worth it to see my Son happy and healthy. Good Luck
The only thing that worked with my dd was Isomil. We tried Nutramigen after the ped recommended it and still had similar problems - screaming ALL DAY LONG and not sleeping. Within 48 hours (not kidding here) we had a completely different baby.

I know a lot of people here don't like soy, but you have to feed your baby what works for them. Good luck with whatever you try.
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Hi there,
Don't know if I'll be much help. I have type 1 diabetes that I got while pregnant, so I fully understand the really rough start combined with endocrine issues. We finally managed to see things through.

has1 said:
I tried to BF for one horrible week, and tried to relactate 2 weeks ago, and ended up with an adrenalyn reaction both times, pounding heart, total insomnia, shaking and horrible anxiety. It has also caused a relapse of a thyroid disorder I have (Graves Disease). So lets just say for now, BF will make me very sick.

You can be on thyroid meds and breastfeed - have you considered this? Would this alleviate some symptoms?

Does pumping trigger the same reflex? Could you do this to maintain some sort of milk supply?

I used a supplemental nursing system for a while - put formula in a pack with a line attached to your nipple, baby gets "milk" and continues to encourage lactation.

How about asking another woman to donate some milk? Or with babe's health concerns, could you see if you qualify for a milk bank?

>>>Or, should I be trying a hypoallergenic formula such as nutramigen? (which has corn syrup solids too)?<<<<

I think that Good Start is supposed to be easier to digest. It's made from milk. I did a lot of research on bf-ing and diabetes, and the smaller proteins are supposed to be beneficial. Could also be that your child is eating a lot, and needs more frequent, smaller feeds?

Good luck. I know the difficulty of making these choices. I had a really hard time with it too. Persist in seeing if you can possibly connect with La Leche League - they were very helpful to me.

Formal milk banks do charge $3 + an ounce for milk, pretty price when insurance doesn't pay for it.

There are informal milk sharing agreements between mother. You might check out:

Or, have you called LLL locally, to see if there is someone with extra milk about to expire? That way they might even deliver to you if you are having transport problems.

Or try posting in your geographic Finding Your Tribe area, to see if anyone has extra frozen milk to share.
I would contact Dr. Jack Newman about your breastfeeding issues. If anyone can figure out a complicated, perplexing case, he can.

In the meantime, I think I would try the hypoallergenic stuff. While corn syrup isn't the greatest form of sugar, there has to be some kind of sugar in a formula; it's essential for proper infant nutrition. You couldn't have sugar free.
The more I read and the more I think about it, the more I think it is reflux, and that he has been soothing himself with the extra formula. He has all the symptoms of it, and it seems that sensitivity to milk proteins and reflux have so many symptoms in common.

Before we change anything, we're going to try the more frequent, smaller meals idea. He just screams and screams for more about 30 minutes after a feeding, presumably because of the burning (I remember it well from my last trimester).

Paquerette, thank you for the contact info for Dr. Newman. I will contact him. I swear not knowing what this reaction is, is going to plague me for the rest of my life!

This board is great. Thank you all so much!
Just wanted to let you know that both of my boys have milk protein sensitivities and also Reflux. I do believe they go hand in hand.

We didn't know what was wrong with my first DS and he was in misery for months (bleeding intestines) he would also want to nurse/suck for comfort.

I know there is a formula called Neocate that a lot of protein intolerant babies are on. I'm breastfeeding so I don't know much about it, but I do know that some mama's here use it. That may be an option. Their website is really informative.

Have you tried keeping him upright after his feeding for a half an hour? If he's sitting it puts too much pressure on the tummy and if he's laying down that will make him uncomfortable too.

Have you seen a doctor about the Reflux?

Hang in there!
I second the Newman suggestion.

When I hear about such a drastic reaction to *anything*, I wonder if you're doing anything to boost your body, your immune system, to help it normalize? Things like acupuncture, holistic (rather than pain-based) chiropractic, massage, reflexology, cranio-sacral therapy...any and all of those things can help bring your body back to a more normal state of being. Because that reaction surely isn't normal!

If I were in your shoes, I'd contact dr. Newman and then find myself a good chiropractor and a good acupuncturist ASAP. Work with them, and see if anything in your body changes.
Hi Mama!

So sorry you are going through some tough stuff.

I too would be wary of soy due because of the hormonal issue. Corn syrup solids aren't ideal either but I feel hypo formula would be a better thing to try, although it is very $$$.

Hope things sort themselves out soon.
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