Best GI doc for severe reflux in NY/NJ/PA

morahmommy2

Thu, Mar 28 2024, 7:46 pm

lotta wrote:

John F. Thompson, MD in Montefiore. I never used him, but my sister is thrilled!
I loved Dr. David Katzka in Columbia. I am not sure if he sees pediatric.

OP, my daughter had what we thought was bad reflux, it was FPIES. She was vomiting projectile, plus all the symptoms you wrote. Some ideas:
Choose what feels right.
1- You could ask your pediatrician if you could try Neocate or an allergy formula or do allergy testing. My daughter tested positive. She had two regular IGA meditated allergies that she reacted to in the environment with mostly GI symptoms.
2- You could check stool for inflammation and microscopic blood. My daughter's showed inflammation. That can help you see if you need to go down the FPIES route, stomach allergies etc.
3-You could see if there is a specific pattern. How long after eating... Is it worse when you eat certain foods? This can help the GI you ultimately see.
4- Some doctors recommend adding rice cereal to thicken the milk that it should settle and not keep coming up. Ask your doctor. Rice can be an issue with some stomach allergies, if any Dr. is thinking in that direction.
5-Don't shoot me and ignore if it's not your style. You could do energy healing on top of what your doing medically. Many people I know were helped tremendously.

Much luck from a Mom who understands! Know your doing the best you can!

I don't live in this area so I can't make a recommendation - there was another thread about this recently, I don't know if you're the same poster. I had two kids with some similar symptoms and one ended up being diagnosed with a swallowing issue (needed a bottle thickener) and a hypoallergenic formula because he had a milk/soy protein intolerance and an egg allergy. The other just had multiple allergies and my milk was the problem. We used reflux meds for both, did not help the first and the GI we saw took him off the meds, relieved symptoms a little for the second and once we diagnosed the allergies and I went off the foods he couldn't have we dropped the medicine (slowly) and he was fine.
Happy to share more about how we figured everything out if you want to PM me.

Hatzlacha! It is so hard when your baby is suffering and you can't help - and when specialists are so booked out it is very stressful. Sending hugs.

amother

Cobalt

Thu, Mar 28 2024, 7:53 pm

amother Orchid wrote:

He does not believe in treating reflux in most cases.
OP I was going crazy so I pushed my pediatrician and they agreed to prescribe prescription reflux meds, maybe Zantac? Was a game changer, I gave it for a few months and had no issues when I stopped.

He treated my daughter at 3 months. Have you seem him with a baby for reflux?

amother

Orchid

Thu, Mar 28 2024, 7:58 pm

amother Cobalt wrote:

He treated my daughter at 3 months. Have you seem him with a baby for reflux?

Yes, he said baby is gaining weight so he wouldn’t treat. I have heard the same from others.

amother

Cobalt

Thu, Mar 28 2024, 8:04 pm

amother Orchid wrote:

Yes, he said baby is gaining weight so he wouldn’t treat. I have heard the same from others.

I hear, interesting. My daughter was gaining weight very slowly so maybe that's why he treated her. In hindsight, I kind of wish I hadn't and that I knew then what I know now. Maybe my daughter would be in a better state than she is now at 10yrs old. I just keep reminding myself that I knew whatever Hashem meant for me to know And whatever already happened is exactly the way it was intended to happen.

Sunny Days

Fri, Mar 29 2024, 1:25 am

amother Cobalt wrote:

Do you mind elaborating?
Seems like you regret treating, care to share more?

amother

Silver

Fri, Mar 29 2024, 3:30 am

I'm sure you explored this avenue, but for 2 of my kids reflux was allergic- one had other symptoms as well so we did allergy testing, took her and me off a bunch of foods, did meds for 1 month to let her esophagus heal, and now she's great (except still allergic).
When my other kid was having reflux issues, ped recommended taking him off dairy, and it helped a ton.

4sure

Fri, Mar 29 2024, 4:09 am

Check for tongue tie. I wouldn’t use these strong meds unless it was diagnosed by a good GI. Talking from experience.

Comptroller

Fri, Mar 29 2024, 4:15 am

You know about reflux milk that gelifies in the stomach so it cannot come back up?

amother

Nemesia

Fri, Mar 29 2024, 7:12 am

Dr. Robert Greenblatt in NJ treated em for severe reflux as a child, he was the only one who helped.

I am not sure of he does babies though, worth asking.

amother

Fri, Mar 29 2024, 2:25 pm

Thanks for the replies and kind words. He had his tongue tie revised when he was 2 weeks old.

amother

Denim

Fri, Mar 29 2024, 4:03 pm

I'm the poster who asked for more info. Just saw that you posted more info. My son had terrible reflux. He was on zantac and then on prevacid. For us what helped was just around the age of your baby we switched to neocate. It didn't completely solve the problem but made it much better. I am very pro nursing, so I was sad to stop, but this was best for my child. Before that I had gone off of dairy, eggs etc. to see if he was sensitive to something. I just could not figure it out, and the neocate was a major blessing. If you want, you can pump for the first little bit to see if the neocate helps. That's what I did. I'm telling you it was really hard for me to stop but this was what was best for this child. This is spoken from someone who is still nursing my 20 month old. I can't say it will for sure be the answer but worth a try

amother

Denim

Fri, Mar 29 2024, 4:05 pm

Also, if you haven't tried cutting things out of your own diet, can of course try that first