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So sorry to hear all this. Unfortunately, I don't think SCD is going to touch this. Maybe EEN with an elemental or semi-elemental formula could help, but that probably can't happen until she's back home. When is she scheduled to come back?

Sorry, Tess. I do really think that availability will open up sooner than predicted. Appts were really scarce in my state for the first few months, but it's finally getting easier to make an appt.

That's good news, Lisa. Thanks for reporting back.

That is such great news!

The Atlantic published an article today on vaccines and immune suppressed people: https://www.theatlantic.com/science/archive/2021/04/immunocompromised-vaccine/618596/

Congrats to both O and M on their college graduations! I'm so impressed at what they have accomplished.

My daughter was on combo treatment (remicade + methotrexate) for the first year after diagnosis, and then her doctor had us try stopping the methotrexate. After about 6 months, she was in a flare, and that was when her remicade levels came back low, and with antibodies. We added methotrexate...

My daughter had that exact situation 5 years ago--low infliximab levels and positive antibodies. If the antibodies are too high, it can mean that you have to stop remicade. But in my daughter's case, her doctor increased her remicade dose and added methotrexate and the antibody levels dropped...

Have you checked Remicade levels recently? I'd want to do that before changing or adding anything, even EEN. What's her current dose? Isn't it 5 or 7.5 mg/kg every 6 weeks? She could go up to 10 mg/kg every 6 weeks before needing to jump to every 4 weeks.

Ugh--really hope that the options you're pursuing come through.

Hope everything goes well!

Yeah, that spot behind the ears was E's biggest location for Remicade-induced psoriasis. Is H still off methotrexate? E's psoriasis started up when she went off mtx, and went away completely when she went back on it.

Yes, it's only a problem to mix antibiotics and methotrexate when you're on very high levels of mtx; the levels used for IBD are actually really low compared to some uses.

Many of us have found that our kids put on weight first, and then height followed 6 months or a year later, even when they are past the age of the typical growth spurt. I'm pretty sure that jmrogers' son didn't start Remicade until he was 14 or 15, and he had a big growth spurt after that.

I should add a story too. My daughter graduated from high school in June as one of her class valedictorians and is now a college freshman studying engineering (at home for now, but hopefully she can be on campus in the fall). She was really sick when she was diagnosed with Crohn's at age 12...

Thanks for posting, Lizzyg. I love all these stories!

Sorry to hear about the throwing up--not fun for anyone. I agree that the vomiting might not be from the methotrexate... but if it is, definitely look at the suggestions above. Taking folic acid every day helps, and taking zofran 2 hours before also helps. (Zofran is a teeny tablet that you can...

Wow--what an amazing change. Thanks for sharing!

Inpatient is so hard, and I can only imagine how much harder it must be with Covid. Maybe you're already doing this, but I recommend having you and your wife trade off time at the hospital, so that you can each get some good sleep and time away.

Hang in there! It is very hard at first, but it will get better when his treatments start to work. My daughter also had badly aching legs and fatigue when she was 7, along with slowing growth and high blood inflammatory markers. She didn't get a Crohn's diagnosis until she was 12, though, so at...