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Multiple Protein Intolerance in My Two Boys -- we think  

post #1 of 4
Thread Starter 
Apologies for the long posting. But I am in desperate need of some support/help/comments -- if anyone out there has had a similar experience, please write me!

I have two sons, DD1 is now three and a half. He had trouble breastfeeding from week 2 and I had no idea what it was. By week 6 he was having bloody stools, and by week ten, I had tried two weeks on an elimination diet (no dairy, eggs, wheat, nuts, citrus -- I am a veggie, so I didn't have meat anyway). Nothing worked. I was basically on oatmeal, rice, and veggies (and continued to drink my one cup of coffee). Whenever we tried to reintrodue my milk, my son would writhe in pain after a few minutes. We kept trying to reintroduce my breastmilk for about three more weeks, but he never could take it.

DD1 ended up on Neocate and stayed on this until he turned one. By then he had outgrown whatever it was, and today he does not have ANY allergies or food intolerances. My husband and I do not have a family history of allergies.

I am now 12 weeks postpartum with DD2. My ped with DD1 did not tell me that there was a high likelihood I would have a similar experience with DD2. So I didn't expect that the same thing would happen. Breastfeeding was also difficult with DD2 from the beginning, but I kept thinking (or hoping?) it was just the usual difficulties. He had difficulty staying on the breast and he would cry in pain WHILE EATING. At around 5 weeks things deteriorated quickly, and I began to understand that this was indeed the same issue that we had had with DD1. So my ped suggested I go on a dairy free diet, which I did. Things went from bad to worse, so bad that one day the baby simply refused to eat. I was so upset that I agreed to put him on Nutramigen for a few days, while I went off soy and eggs. After 5 days off of soy and eggs, and two weeks off dairy, I reintrodued my breastmilk. It was disastrous. After one feeding, the baby had mucousy stools, was crying in pain on and off the breast. So we had to put him back on Nutramigen.

My husband is against experimenting on DD2, though I have been desperate to try to breastfeed again. We saw an allergist who said that my sons have multiple protein intolerance not allergies, and that no diet would help, since the protein intolerance could be to anything. Both my ped and my allergist said that the chances of finding out what is causing the intolerance are incredibly slim. I tried to breastfeed just once a day for a week, to see if the baby could tolerate just a little breast milk, but that, too, was disastrous. I feel so guilty.

I stopped pumping two weeks ago, and my supply is almost gone. Although I am not a diehard believer in breastfeeding, I would so much liked to have breastfed my child. Has anyone "solved" the multiple protein intolerance problem with breastfeeding? Is there a diet that works? Has anyone gone through a similar experience? Could I relactate? Please, please give me some advice!
Noosh
post #2 of 4
Hmm...well, I have no firsthand experience with this, but I did some reading really quick. I have to say, if you are being strict with your elmination diet and they still had this issue, it may not be the problem, or only part of the problem.

Everything I've read so far says to eliminate all milk and soy products from your diet for at least two weeks (I'd assume to see if it works). I'd say that maybe you were getting soy/milk products in things you didnt think of-but if you were only eating rice, oatmeal, etc, obviously that couldnt be the case. So...that means either they dont have this problem and its something else, OR its a combo of problems including this one. I did also read Nutramagin only works for 15% of the kids with this problem...so again, I'd question the diagnosis. I am glad that at least you've found something he CAN eat though!

As for what to do with breastfeeding, well, again, I'd seek more of a diagnosis myself. Theres no reason that you should be causing problems in him when you have eliminated the culprits entirely from your diet. (Again, make sure you arnt accidentally eating something that has milk or soy or is even produced in factories with milk and soy, as some kids are soooo sensitive) If you still cant figure it out and you still want to give him breastmilk, you could always pump part time, just maintaining some of your supply, and freeze it for later use. And with that, you could try every few months to see if he is still having trouble with it. I'm kinda doing that myself with this one-for way different reasons, but I'll be testing him out every few months as well for his intolerance.

I hope you figure this out, hugs!!!!
post #3 of 4
please pm me- my son is almost a year old and is being considered for this diagnosis. i've been EPing for him since birth, as he never learned to nurse, but he's currently on elacare (i have been supplementing with ebm for 2 months, but he is getting worse; i am pumping and freezing until we get a firm diagnosis).

my son's gastro and allergist both called this an allergy, not an intolerance- i will be interested to hear what else your doc had to say.
post #4 of 4
Thread Starter 
Dear Cari,

Thanks so much for the support. I was pretty careful on the non-dairy/soy/egg elimination diet, and though I am not sure, it seems to me that unlike an allergy, I should have seen improvement after two weeks/five days even if there were still trace amounts of some of these in my milk. But I am not sure. My allergist told me that I would not have seen such an immediate reaction if the culprits were milk, soy and egg! UGH!

Dear Rachel,

So sorry to hear you are going through some of this as well. I went to see an allergist for clarification, and it seems that intolerance and allergies are not the same. The good news with intolerances in infants is that they many times outgrow them by age 1, (which is exactly what happened with my first son -- he now eats everything) and most by age 3. My allergist also said that if eliminating dairy and soy didn't work, the chances are that we will never know what the intolerance is to. My sons never had vomitting or rashes, just incredible discomfort eating and blood in their stools. Does this sound familiar?

Good luck, Noosh
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