Doctors supporting SCD

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AvivaY
Posts: 75
Joined: Fri Feb 05, 2021 8:55 am

Doctors supporting SCD

Is the patient healthy now? Because my daughter's doctor wouldn't take a patient off medicine even while on SCD if the patient isn't very healthy and in remission.\n\nIf it were me, if I was starting my 17 year old with a new doctor, I would just go to an adult doctor and not pediatric.
Nechama
Posts: 105
Joined: Mon Nov 02, 2020 6:02 pm

Doctors supporting SCD

Just adding my two cents here: I started at 19 with a pediatric doctor; he was ok to see me until I'm 21.\nHe was a great doctor and it was well worth starting with him, even though I needed to switch later
Lea
Posts: 34
Joined: Sat May 07, 2022 9:27 pm

Doctors supporting SCD

is this doctor in New York? because I'm looking for a new doctor?
AvivaY
Posts: 75
Joined: Fri Feb 05, 2021 8:55 am

Doctors supporting SCD

I don't see how to PM you, so please email me for my doctor's info if you want: [email protected]. He's an excellent doctor; I'm just not sure he'll take a patient off meds because of the diet but he should support you if you're on the diet.
Ysam
Posts: 30
Joined: Thu Sep 10, 2020 4:12 pm

Doctors supporting SCD

hi, try to get an appointment with Dr Phillip Kazlow. he is jewish and a highly respected Pediatric Gastro in Columbia (in NYC, right over the GWB). I had to leave him due to my age, but he helped me a lot. he is very open to trying the diet. he is a believer of the "bottom up" upproach. which basically starts with mesalamine (lialda) and the diet and you take it from there.--\n\n you can call me if you have any questions 845-641-9005
elitr
Posts: 8
Joined: Wed Jan 05, 2022 7:44 pm

Doctors supporting SCD

I'm sorry you are going through this , my son was 16 when he was officially diagnosed with Crohn's ( probably started with light symptoms a couple of years earlier but a different story) so we started with very simple stuff pentasa I always asked if there are any diets, and the Drs. answer was every person is different so no not really, the only thing she said is to stay away from hard nuts and seeds so they don't stay stuck in the intestines. Eventually he ended up in the hospital with an abscess in his stomach that's when they decided to put him on RAMICADE , I wasn't thrilled and didn't know once you start they never take you off. In any case after the first Remicade he felt fine but not for long after the second one no change and that's when I started looking around and fell into the SCD diet I read the book and listen to a webinar that Elaine G. gave. At the beginning I told my son we will start with gluten free stuff and his response was " I'm not celiac" that was true he came negative to celiac ...\nafter a while still being with a lot of pain he came to me and said he is willing to try this diet, and we started form the beginning with just chicken soup for three days then little by little adding thing ,I made mistakes because it was new to me etc.. but we learned, the dr. first was concerned because she said its very limited he is not going to get enough nutrition ..by the next appointment surprise he gained a lot of weight . So she was on board with the diet and didn't discourage it but wanted us to speak to the nutritionist (that didn't really helped much). So it is a very hard diet specially in the beginning and specially at your sons age , like someone else said on the comments he has to be on board, so maybe yes limit some basics like switch sugars for honey limit the wheat products, and maybe one day if he is willing to do the diet will be easier . I know for a fact my son had narrowing in the ilium and few years after on the next colonoscopy the narrowing was gone not sure if its dew to the diet but it could be . \nI'm sorry i don't have a specific answer or recommendation but I hope my story helps you in some way
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