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Forgot to add that in my experience going from 20mg to 15 pred was a nightmare. Maybe not for her bc she has so much experience with pred?

I really shouldn’t give advice because I’m sort of in a sh%#show myself with a young “adult”. I know our power over them is limited especially when dr is on their side. But 1.5x class load is ridiculous for a sick person. If you pay for her school can you say you only pay for regular load? I...

Nelsonshan, Offering $500 to eat a burger? Love it. You are my people! Reading this made me realize my son had crohn’s for as long as I can remember. It wasn’t just picky it was weird. He ate was made him feel ok. His frequent “bugs” and stomach pain, constipation, random “food poisonings” and...

Yes. Always. When my son was coming out of a flare his fcp was great, other labs great, no symptoms. Scope looked “perfect”. Biopsies told different story. Even now when he gets a “clean” scope dr says to remain skeptical until biopsy results. Hope it goes well.

Milk products are allowed only if lactose sugar has been removed - such as fermented (homemade) yogurt and aged cheeses. I think a2 still has lactose sugar. Their thing is only one protein which is supposedly easier to digest. May be but it isn’t a fit with SCD. Did you make almond or cashew...

Glad she is with you. We will take the signs of progress. Do you think the exhaustion is expected with two trips? How does her GI feel about FCP? I think some patients and GIs look at levels and changes as an indicator of amount of inflammation. My son’s GI thinks high is high and doesn’t feel...

Oh man O really is an amazing young woman. It is amazing how can she can hold up so well emotionally, plan travel and be so determined to go back to school. I forgot where but I think she goes to school in my region. If she does (so hopeful) you know I will gladly go put eyeballs on her for you...

Ha! Meal prep, such fun. I tried unsuccessfully to get rest of family to eat like him to save me some work. No luck. We do pretend we enjoy cakes made with avocado or black beans for his birthday, with homemade cashew milk! Our GI has several patients who have had success for a few years...

Hi. My son has used SCD as part of his treatment for about 5 years. He left hospital on EEN and steroids. 8 weeks later he was feeling pretty good and FCP improving but no approval yet for remicade. He tried to wean steroids and and would not do more EEN so we tried 50% SCD and 50% EN as sort...

If those are worst things that happened I would call it a huge success, and celebrate YOU! O must be thinking about whether she can return to school in a month or so... You are one day closer to seeing her GI. I think she is going to show up to see him with some good progress.

I’m not trying to hijack here. There is all Team O. Just saying that these are adults who need different approaches than “bc I said” or “we can watch a fun movie after you start tube”. I don’t know what the approaches are though! And in my case when drs waiver or think out loud things are more...

I’ve not been on here for years but I’m glad I checked in to join the sideline support team for CIC and O. On the teen/young adult treatment issue... Years ago even if my son didn’t like a procedure he responded well to threats and bribes. Oh have things changed. Last week after good MRE...

So sorry.

Hi I’ve not been on here in years (password issue) but something pulled me to it now. I am so sorry that O has gone through so much and hope this turns in better direction soon.

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HI. I’m just chiming to say I’m sorry you are going through this. The “unusual” cases are frustrating and it is so hard to have no definite or a floating diagnosis. We went through a year and a half of symptoms and wonky labs that were attributed to all sorts of things other than IBD. It took...

Hi Momtob. You don't have many options in ATL. GICFK is dominant. While their are two more prominent drs, I think the practice uses some team thinking. They also seem to have good connections to the top children’s IBD centers in other markets. That being said, you shouldn’t have much problem...

I am sorry to hear about your daughter. I hope they can sort this out and point her towards remission soon! My son has used the G tube for the MRE. Yes, it hurt, a lot he said, but that test is the gold standard for tracking his disease. Can you bribe her? :) Can you tell me more about what...

No magnesium or polyps here. In fact, the one time I convinced - well I won’t say name bc it might show up in a search 😘 - a GI IBD specialist at Boston to switch to carafate, which he said would not work, horrible reflux returned but worse...the next biopsy showed trace inflammation in duo...

Hi. From birth my son was always a weird throw up kid, usually on airplanes or school plays or malls. Every time he got sick it included a stomach issue. He would get nauseous at times. We just thought he was different! He was - he had Crohn’s! Tums never did much. He started a PPI when...