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That is a really helpful list--thank you! Is tuition insurance something that you were able to purchase through the school? And obviously it must be possible to get a policy that covers preexisting conditions? We need to talk to the health center about shots. I think that E is willing to do a...

In that case, it really seems like it would be good to be in the same city/town as his doctors. Even an hour drive would be a hassle with that many appts.

Wow, time flies! E starts college next year, and while she has made leaps and bounds in terms of what she can handle on her own, she really wanted to be able to come home for infusions and her regular appointments. Since Oregon doesn't have that many colleges and she wants to study...

Oh man--big hugs to all of you. We tried SCD early on when my daughter's intestines were a mess, and while it did reduce her pain, it did not reduce inflammation and she lost weight--not from lack of eating enough calories, but because she wasn't able to absorb enough with her damaged...

Hope things go well at the appt.

Thanks for the update! I know that a lot of our kids aren't really kids anymore, but it's great to hear how things are going with them. Glad to hear about the good lab numbers, and I hope that the Stelara infusion and addition of mtx are helpful.

Thinking about you all--hope O is doing OK.

I'd be tempted to at least try methotrexate, since it looks like you may be getting close to losing Humira as a treatment option. My daughter does have side effects with it, but they are pretty minor. You can always drop it if your daughter has problems with it. Let us know if you'd like more...

That is a great update--hope things continue to go well!

Thanks for the update, and I hope that whatever you end up trying next works well for him.

!!! That is so crazy! Hope that the new supply comes in time.

Sorry--no experience with Crohn's in the duodenum, but I'm glad to hear that everything else looked good. Has she been having Crohn's symptoms?

Hope your daughter is feeling better soon and that the new treatment works for her.

That is a great update, and it's so cool that Jack wants to be a teacher and coach! I really appreciate hearing all the details about college and young adults who are starting to take over responsibility for their health care--I've got all this coming up soon.

We don't have Humira experience, but my daughter had a similar experience with Remicade after she had been on it for 2 years. She was flaring, and when her levels were checked, her Remicade level was on the low side, and her antibody level was detectable (but low) for the first time. We decided...

That's great that her cal pro is so low. I know you're not big on methotrexate, but it worked wonders for my daughter's remicade-induced psoriasis; it completely resolved when she went back on mtx, and her dose is pretty low--12.5 mg/week. (I wonder if an even lower dose would have worked for...

Yes, big hugs to you and O. I'm glad your doctor shared his thinking with you, and thanks for sharing it with us too. I think you're not giving yourself enough credit, though. For 2+ years as O was getting worse, you kept trying to get her doctor to look past the IBS diagnosis, and he wouldn't...

I think you did the right thing to push for the higher dose--sorry that you got so much pushback from your doctor. And really sorry to hear about the fractured wrist. Ugh!

Great to hear this! So glad that the FMT worked and that she was able to finish spring semester. And that she might be able to get rid of the tubes! Hope that this is the year that her arthritis comes under control as well.

Agree with all this. Maybe you could talk to O about how she has a much better chance of going back to school (and making it through the year) if she is using a tube rather than a PICC line, since there's so much less chance of complication. Also, keep telling her about all our kids'...