Ped GI says to stop breastfeeding??

[Anonymous]

My pedi called a pediatric GI doctor to talk about DS’s symptoms (see post below). Pediatric GI doc thinks it’s too late for this to be showing up as MSPI/MFPI (DS is 6 months, but was born 3 months early). Soo…he wants a belly xray done and suggested stool cultures to be sure it’s not salmonella or something else. I’m fine with both of those things but the part I am NOT fine with is that he said to stop breastfeeding and put DS on Neocate. He said I could pump and then try again if DS’s stools clear up. He’s concerned because DS has had bloody stools for a month now. Anyone else get advice like this? did you try the Neocate and go back to breastfeeding? I just don’t think i can give up breastfeeding after all I went through to get to this point (8 weeks of pumping before DS could feed at the breast, even then only 1-2 times a day for quite a few weeks). How do I find a new pediatric GI specialist? I’m in the Raleigh/Triangle area. Thank you!

[Anonymous]

If he doesn’t think it’s MSPI/MFPI then why is he suggesting neocate. I personally couldn’t work with a doctor who told me to give up BF as if it’s nothing. There’s a link in Laura’s intro for GI recommendations (stickied under the introduce yourself forum). I’d also try another opinion. Don’t give up BF, you can try the elimination diet.

[Anonymous]

Oh, I’m so so sorry. I would definitely look for a new Ped GI (check out the sticky under the Specialist area).

My ds (Evan) had bloody stools for 10wks before they resolved & both my general ped & Ped GI said they didn’t want me to stop bf’ing.

Hang in there…

[Anonymous]

Wrong!
Breastmilk is the best for MSPI or GERD (with TED).
My daughter is GERD-free at 5 1/2 month.

[hellbennt]

THIS is why I cannot leave this site!!!

erg!!!!

please do not stop breastfeeding if you do not want to!

Shelby bf best for reflux baby; https://www.infantreflux.org/forum/forum_posts.asp?TID=10133&PID=87611#87611

[Anonymous]

early on in sylvia’s reflux, the ped wanted me to try not breastfeeding and try alimentum. i bought the formula, but kevin really did not want me to stop nursing her. his gut instinct was right, because she didn’t have any food allergies or sensitivities—-she had a hiatal hernia and we could have medicated and formulated her till her eyeballs floated, and she would not have gotten better. she just needed surgery.

there was a gal on the board at the time who really tried to talk me into trying neocate before doing surgery, but i had alot of faith in our ped gi, and he was right about her needing surgery—we knew she had alot of esophageal damage, but they didn’t find the hernia until they went in to do the fundo.

[Anonymous]

Hi there,

I’m so sorry to hear about your situation! I breastfed from baby’s age of 8 months through age 2 (right at 24 months) on a restricted diet that eventually included dairy, soy, beef and gluten. My cousin is currently on a restricted diet because her baby had blood in his stools. I’ll email her to find out how long he had blood before it resolved. I think it was possibly two months of blood and her on the special diet before it cleared. She was adament about continuing to nurse. I also have a friend in the Raleigh area who might have seen a ped gi with her daughter….I’ll check.

I understand what it’s like to put so much into making the nursing work (I also pumped 8 weeks and used the SNS system to teach my first how to nurse) and then when they suggest you give it up, it seems heartbreaking. I can’t see any reason why you can’t do a restricted diet, beginning with the TED to figure out what’s going on. It seems to me that if you removed the offending foods, which is the same thing that going on Neocate would do — (remove the allergens/problem proteins) then it would take the same amount of time to heal internally whether you were on Neocate or bfeeding. Actually, because bfeeding is so wonderful for the body, it might have healing properties that would help the gut heal FASTER than if you were on neocate. To me, all going on Neocate would tell you is that there is a problem food in your diet that you haven’t removed yet. Well, you probably already know that this is the case. Removing many of the major allergens until the bleeding resolves is a drastic but probably effective strategy, too. The TED, or total elimination diet, has you clear your body of everything, you begin with rice and other foods that classically cause no problems and then add in other foods and when teh baby reacts to a new food, you take it out. In your case, since the bleeding has been there a while and will possibly take a while to resolve (possibly even after the problem foods have been removed), you could just take out many of the major allergen/problem foods and stick with that until the bleeding resolves. My cousin did this: she was off dairy, soy, gluten, eggs, peanuts, tree nuts, fish and i cant’ remember what else. She thought she might go crazy but held on and the bleeding stopped and she is now adding back in foods and the baby is 10 months old. She and I, with our limited diets came up with a lot of yummy foods that you can eat while doing this sort of thing. I’m no doctor, but i would think if you were willing to take out even just the dairy, soy and peanuts or the “classics” of allergens (my lactation consultant immediately has moms take out dairy, soy and peanuts if they see blood– I did this with my second baby just recently) this could put you on a better track. I would not quit just because this doc said to. You probably know this already, but trying Neocate means you have to do all that pumping, the baby will probably be miserable because he can’t nurse and you put your milk supply at risk as well since pumping doesn’t keep your supply like nursing does. I seriously considered doing this with my first when we could not figure out what was going on. He didn’t have blood in the stools but life was so miserable and he could not sleep AT ALL. DH really wanted me to do a neocate trial. And it would have worked, because we didn’t know at that time that he was reacting to gluten in my diet, and I would never have known that unless I did it the old fashioned way, with taking out foods. If we wold have tried Neocate, we would have proably had the problem all over again with introducing solids and not been immediately sure the problem foods later on with him.

Also, for what it’s worth, I had to dump my first ped gi — not for the same reasons but she wasn’t on the same page as me…. and my cousin who did the crazy diet went to see her ped gi for the first time and left in tears and called to say that they didn’t tell her anything really, didn’t answer her questions and suggested giving up breastfeeding. She and I both found another specialist who was more on the same page as us. She lives in Richmond, VA and I’m in southern california. So, I think this is unfortunately often the case where you have to find the right fit with the docs. I hope this helps and I’ll email Alison, my cousin and see if she can shed any light on the length of time the blood was there for her little one. I think it was quite a while. Hang in there!! If you want some food ideas, let me know….

[Anonymous]

I agree with all that’s been said…. I, too, had a ped. that tried to convince me to not BF (and that was only for a 2 day trial). I had the same reaction as you. She didn’t have a logical explanation for me–so i dumped her. you can find a better dr. And…good for you for working so hard to breastfeed your baby. You can keep breastfeeding as long as you want to… The TED isn’t as bad as it seems!
Anne–i’m in San Diego and in need of a new ped. GI. Is that where you are? Who is your dr.?

[Anonymous]

Thanks everyone. It REALLY helps to know we’re not alone. I’m going to keep breastfeeding because I fully believe it’s best for him. I’m on day 10 of TED (5 weeks of being dairy/soy/peanut free). Hopefully we will see some results soon. I emailed two of our favorite NICU nurses to see if they have suggestions for a ped GI. I will also talk with our pediatrician and if she can’t see eye to eye with us on the breastfeeding issue, we will look for a new one.

Anne – if you have a rec for a ped GI in the Triangle area, I would love to get it. I looked through the posts here and found only one recommendation for a doctor in Winston-Salem (close to 2 hours away). I’m sure with Duke and UNC in the area we must have some competent and understanding doctors!

[Anonymous]

I don’t know if this helps at all but the lactation consultant was very helpful in finding out what was bothering Eli. Eli actually broke out in hives and she helped more than the dr did.

[Anonymous]

here’s what my cousin said….

“It can take 2-6 months to completely resolve the bleeding and from all my professional sources here that is OK! We “found” the blood at a little after 2 months and by 6 months he was clean. It takes a while to heal their little systems–especially at the cellular level. And my pediatrician said as long as it is not spoonfuls small trace amounts is fine–and with these kids they can even have “spotting” from time to time. When they get older –like Taylor is now, the blood is generally not eh main symptom—it switches over to things like crying, not sleeping well, excema, vomiting, diarrhea. I took several hemocult strips into the GI doc at 10 months and they were all negative –even on some strips that contained a food that he did not respond well to. She said he was likely over that part of his life—YEAH! So please pass along to keep on nursing because all the docs here agree that if no conflicting parent/child allergies are involved, breast milk is still the best!”

She & her docs are in Richmond, VA

[Anonymous]

Hi,

I’m sorry, I didn’t realize you were already doing all these dietary things already… I don’t think I’ve read any of your other posts– I have a newborn with reflux myself and have been only reading/responding to the posts that really sound familiar to things I’ve been through where my two cents might help.

I have a friend in Raliegh and I’ve emailed her to find out if her dd want to a ped gi or not. I think I remember that their ped did a lot of her care, but then she went to Duke (?) maybe, to do some testing when she was around 18 mos old. I’ll post as soon as I hear from her.

Also, what is your name? If you go to the settings section, then click on profile or edit profile, it will allow you to put your name, the baby’s name and birthday and medications or problems. That way we can remember each time we see your post a bit about you.

[Anonymous]

Finn’s mom: We are near Long Beach in Lakewood. Our ped gi is in Torrance, just south of LA. A pretty far drive for you!

[Anonymous]

I had an idea…. maybe someone at MARCI-kids with Univ of Missouri is connected to or knows of a doc at Duke or UNC? It’s worth a try, since MARCI-kids seems to have their house in order in regards to reflux. Just a thought.

You probably already know about this site, it’s an excellent resource but just in case: http://www.marci-kids.com

[Anonymous]

Here’s what my friend Angela in Raleigh had to say about her ped gi experience:

“As for our Ped GI doc, we went to Dr. Berman at Duke. The Duke Ped GIs are the best around, but we had to wait 5 months (of hell) until our first appointment. Even once we were “in”, we still had to wait weeks for follow-up visits. I’m sure they prioritize kids who aren’t thriving though. I liked Dr. Berman, but he really just helped us rule out big things. I had already been dealing with it for so long I kind of “diagnosed” it myself and he mostly agreed. I’m not sure how supportive he would be with the breastfeeding. The Ped GIs at UNC are supposed to be okay, but not as great as Duke. My regular ped said the guys at Duke were worth the wait. I just read this week in the paper that the UNC ped specialists just opened up a clinic at Rex Hospital in Raleigh, so that may save some driving to Chapel Hill if she sees them. Please pass this along to the mom poster – you can give her my email address as well.”

Her email address: [email protected]

Her daughter was a lot like my son, gained weight well for a refluxer, looked like a butterball, and couldn’t sleep a wink- ended up on prevacid, probiotics, and specialized diet. Angela (the mother) did not continue breastfeeding with all the feeding issues….she already had another older child and decided she would go the formula route. I can’t remember which one she used. Anyway, she might not have had the breastfeeding conversation because of that, so I thought i would let you know that. She’s VERY thorough in terms of her reading and research into the topic, and pretty good judging people in my opinion. At least you have some sort of info on somebody, it’s better than nothing.

[Author]

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