Allergist and/or GI recs for infant who is reacting through breastmilk

[Anonymous]

My almost 4 mo breastfed son has had signs of food reactivity from the beginning with blood in his stool early on. By 1 month I was dairy free and by month 2 I had cut the remaining top 8 allergens. Spit up, mysterious rashes, watery eyes persisted. At 10 weeks he stopped gaining weight and I cut a few other foods: rice, oats, corn, poultry, beef. He started gaining again, slowly, and after I accidentally had rice and he broke out in a rash I believe that had been a food trigger for him.

Anyway, he’s falling weight percentiles and I am doing my due diligence on hypoallergenic formula vs BM, so no advice needed there. I want to talk to some good specialists to assess his current GI health, get input on his current feeding plan, and to also have a plan before starting solids on when and how to introduce allergenic foods to such a reactive baby. I am finding that not many docs are knowledgeable about these issues in breastfed kids. I would appreciate names of any pediatric allergist, GI or other docs or even dietician type professional who could help.

Note that this is not an issue with how much he is eating, as I have worked with ped and LC extensively and even switched to exclusively pumping so as to more carefully track quantity and weight gain.

[Anonymous]

Dr Sharma at Childrens or Dr Darbari at Childrens were both great and knowledgeable. Never questioned reactions to dairy from/through breastmilk. Dr. Sharma is also aware of FPIES, which my son has.

[Anonymous]

Thank you. I am suspecting fpies since he doesn’t seem to be reacting to the classic allergen foods except milk. Very frustrating and hard to pinpoint what’s going on!

[Anonymous]

Anonymous wrote:Thank you. I am suspecting fpies since he doesn’t seem to be reacting to the classic allergen foods except milk. Very frustrating and hard to pinpoint what’s going on!

FPIES group on FB is helpful. Rice is one of the biggest triggers along with dairy and oats. Avocado is starting to increased in incidence as well. These are all first foods btw if you notice - avocado, rice cereal, oatmeal, etc. On the FB group there is a researcher whose son has FPIES and he has now altered his direction of research towards FPIES. There is a lot of new information and it seems that increased intestinal permeability is a potential cause. A lot of FPIES kids also have issues with CMPI, MSPI, colic, etc. because they react to larger food proteins due to that increased intestinal permeability.

The FPIES website is a great resource as well and has a lookup for physicians based on location.

[Anonymous]

Dr. Adora Lin at CHildren’s National is very good

[Anonymous]

We used Pediatric Specialists of VA and Spectrum Pediatric highly recommend them both.

https://psvcare.org/our-services

http://spectrumpediatrics.com

[Anonymous]

Not what you want to hear, but you need to supplement. Use a hypoallergenic formula. Your baby should not be gaining the bare minimum - he should be gaining well and making up for lost time.

My baby went through a similar cycle, and we were blaming the slow weight gain on "allergies to breastmilk." Turned out it was just not enough calories. Instantaneous change when he started getting 4 oz of Nutramigen a day.

I'm not sure why you want to see an allergist before you try the hypoallergenic formula? There's only so much you can do. What are you even "allowed" to eat now? Such a restricted diet isn't healthy for you.

[Anonymous]

Anonymous wrote:My almost 4 mo breastfed son has had signs of food reactivity from the beginning with blood in his stool early on. By 1 month I was dairy free and by month 2 I had cut the remaining top 8 allergens. Spit up, mysterious rashes, watery eyes persisted. At 10 weeks he stopped gaining weight and I cut a few other foods: rice, oats, corn, poultry, beef. He started gaining again, slowly, and after I accidentally had rice and he broke out in a rash I believe that had been a food trigger for him.

Anyway, he’s falling weight percentiles and I am doing my due diligence on hypoallergenic formula vs BM, so no advice needed there. I want to talk to some good specialists to assess his current GI health, get input on his current feeding plan, and to also have a plan before starting solids on when and how to introduce allergenic foods to such a reactive baby. I am finding that not many docs are knowledgeable about these issues in breastfed kids. I would appreciate names of any pediatric allergist, GI or other docs or even dietician type professional who could help.

Note that this is not an issue with how much he is eating, as I have worked with ped and LC extensively and even switched to exclusively pumping so as to more carefully track quantity and weight gain.

How long are you going to do "due diligence" before you just start getting more calories into your baby?

[Anonymous]

My cousin's baby was like this and refused the hypoallergenic formula. My cousin went dairy free, nut free, gluten free, corn free and soy free until the baby got to a year. A couple of years later her son was diagnosed with celiac, probably worth getting him screened. Gluten is hidden in many things that you wouldn't think about. Your pediatrician can do an initial screening through bloodwork.

[Anonymous]

Anonymous wrote:My cousin's baby was like this and refused the hypoallergenic formula. My cousin went dairy free, nut free, gluten free, corn free and soy free until the baby got to a year. A couple of years later her son was diagnosed with celiac, probably worth getting him screened. Gluten is hidden in many things that you wouldn't think about. Your pediatrician can do an initial screening through bloodwork.

breastmilk is gluten free. so is nutramigen.

https://nationalceliac.org/celiac-disease-questions/does-gluten-transfer-to-breastmilk/