Treating IBS | Imamother

amother

OP ↓

Wed, Mar 08 2023, 11:55 am

NYC location

We've been to a few highly recommended GIs with my teen, who diagnosed him with IBS. He tried FODMAP diet, IBguard, taking extra fiber, nothing helped.
DS is in pain almost daily. I'm not sure if it's truly IBS or just a convenient label after some major things were ruled out.
What helped you or your child?
Any excellent GI who specializes in this (NYC area)?
Can holistic Drs help? (Never went to them for anything yet)?
Acupuncture?
Anything?

amother

Junglegreen ↓

Wed, Mar 08 2023, 12:26 pm

Dr Marla Dubinsky at Mt Sinai is the premier expert in pediatric IBD. My son saw her for several years. She is wonderful. When it was clear my son was stable and doing very well BH he switched to Dr. Elizabeth Spencer who works under her. Dr. Dubinsky monitored my son for 2 years before putting him on medication. He is on Humira and in complete remission bchasdei H-shem.
I should add that I also tried a holistic route but it did not work. My son was diagnosed with Crohn's but does not have outward IBD symptoms BH (no pain except for initial episode, no problems with bowel movements, no nutritional deficiencies etc). Maybe holistic can help with that. I heard the diet can help with symptoms too. The Humira has completely healed the ulcer he had at his Ilium.

amother

Springgreen ↓

Wed, Mar 08 2023, 12:28 pm

Functional medicine. Alternative approaches can work but functional will run special in depth testing to help you narrow down your root causes. Fodmaps for the most part doesn't address root causes. You need a gut healing diet like gaps or scd or aip. If you're willing to go down this road. Mainstream medicine sucks at this and you are right, it's a wastebasket diagnosis. Another way of saying your digestive tract is a mess and we have no clue why.

amother

Poinsettia ↓

Wed, Mar 08 2023, 12:30 pm

amother Junglegreen wrote:

OP is talking about IBS not IBD.

amother

↑ Junglegreen ↓

Wed, Mar 08 2023, 12:39 pm

amother OP wrote:

Thanks, Junglegreen! DS will be turning 18 in a few months. Will she continue treating him or we should find an adult Dr right away?
Maybe I should have asked this question in a regular health forum, not Children's...

My son is now 23 and can continue at Mt.Sinai pediatric IBD until he is 27.

amother

↑ OP ↓

Wed, Mar 08 2023, 1:50 pm

amother Junglegreen wrote:

It would be worth it to get a proper work up by Dr. Dubinsky. She monitored my son for 2 years before giving her diagnosis.

Oy! And he continued suffering for those 2y before getting diagnosed and treated?
Is there a reason to go specifically to a pediatric GI at almost 18?
I also wonder if she's treating IBS cause her center is for IBD...

amother

↑ OP ↓

Wed, Mar 08 2023, 1:53 pm

amother Springgreen wrote:

Petrified at how much it'll cost, but what exactly is functional medicine? Are they legit Drs? I realize they must be looking at the whole body instead of just intestines, but how is it helpful with IBS?
Any good names in NYC?

amother

↑ Springgreen ↓

Wed, Mar 08 2023, 1:59 pm

amother OP wrote:

Functional medicine drs are medical doctors with extra training in treating root causes of diseases. It is typically more of a whole body approach, but since the gut is pretty foundational, I'm sure there's plenty to look at just there. For example, they can run specialized stool testing that can look for different strains of bacteria that are either high or low so you can know which strains of probiotics to use, can pick up if there are parasites that mainstream testing will usually miss, can test for yeast overgrowth and other gut infections. They can look for inflammation in the gut, gut based food sensitivities, if there's low stomach acid or low pH that's preventing proper digestion. They can test for any treat bacterial overgrowth, see if there are motility issues etc. Then whatever issues they find, they treat with targeted treatment.

Some of this can be done with mainstream Dr's as well,.you just need to know what kind of testing to ask for, find someone willing to do the testing for you, and knows how to treat and won't just dismiss.

Has your child ever had a full celiac panel done? Complete stool testing? Food allergies and sensitivities? Sibo? H pylori? Yeast? Have you trialed a dairy and gluten free diet?

Dr. Raphael Kellman might be a good place to start. Yes, he'll probably be very pricey 😞 Or dr Keith berkowitz

amother

↑ Junglegreen ↓

Wed, Mar 08 2023, 2:05 pm

amother OP wrote:

No he did not suffer bH. He was symptom free. She did a camera endoscopy every 6 months to see how the ulcer in his ilium was looking. She tried a course of oral very targeted steroids and it worked twice but the ulcer came back. After 2 years it she was ready to call it Crohns and put him on Humira. With Crohns it is very very important to catch it early and treat it properly right at the start. Then the prognosis is excellent with HKBH's help. During those 2 years we tried holistic approach with Aloe pills and then a ton of supplements from Dr. Debbie Altshuler at Integrated Health Solutions. He also went to someone in Bnei Brak who supposedly Rav Chaim recommended. Perhaps the alternative route helps with symptoms but BH my son did not have any. We needed to heal the ulcer.
I liked that the office is Pediatric, I think they are extra sensitive to adolescent life style etc...
I think it's worth going to get a diagnosis from her. "IBS" is not very helpful. And if it is IBD it's best to have it treated asap for best outcome. Hatzlocha!

amother

↑ Poinsettia ↓

Wed, Mar 08 2023, 2:45 pm

amother Junglegreen wrote:

It would be worth it to get a proper work up by Dr. Dubinsky. She monitored my son for 2 years before giving her diagnosis.

Slightly off topic, but what did the Dr think it was before you got an IBD diagnosis? Was there suspicion that it was IBD?

OP, was your child scoped? Did you get a fecal calprotectin level? These can be diagnostic for IBD.

amother

↑ Junglegreen ↓

Wed, Mar 08 2023, 2:57 pm

[quote="amother Poinsettia"]Slightly off topic, but what did the Dr think it was before you got an IBD diagnosis? Was there suspicion that it was IBD?

OP, was your child scoped? Did you get a fecal calprotectin level? These can be diagnostic for IBD.[/q

He had an ulcer near his ilium and inflamation in his small intestine. So that could be Crohns. But he had no pain, no problem with his bowel movements, his calprotectin and blood work were normal. So she watched and waited. When the ulcer came back twice she called it.

amother

Beige

Wed, Mar 08 2023, 4:18 pm

does your child exercise? daily exercise is crucial and figuring out the correct amount of fiber is crucial as well start slowly and then add a little more each day until it works.

Also only natural foods and no dairy. Eat as healthy as humanely possible no nosh non juice, no soda.

Chamomile and peppermint tea can help as well.

Try making some homemade apple sauce, sweet potatoes, corn all amazing for IBS.

amother

Dodgerblue ↓

Wed, Mar 08 2023, 4:22 pm

amother Junglegreen wrote:

Dr Dubinsky also came highly recommended to us from someone very involved with people who deal with GI issues. We never ended up seeing her because our case was straightforward so we stayed local but she’s supposed to be the best.

amother

↑ OP ↓

Wed, Mar 08 2023, 4:50 pm

amother Beige wrote:

Yes, he walks a lot daily. One of previous Drs kept on increasing fiber, but DS was saying it made the pain worse...
He drinks water, soda only occasionally, on Shabbos. Chamomile, lavender, fennel, or peppermint tea don't help.
I'm pretty sure apples are major offenders for IBS?