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If it melts on the tongue, surely it would melt in the gut?!?!?!?!? J.

Gotta trust the mom.........seriously. We know!!! Hugs and wishes for a plan and speedy improvement! J.

A - I'm still mad. Any progress with Izzi's school? J.

You have had your hands full. You will find quickly that you need a comfort zone with this doc and at least it sounds like he's willing to admit when Mom's intuition was correct. :-) With us, the 3 month course of pred with a taper, allowing time for 6MP to build up was how we started. Her...

Um....I'm pissed reading this. I would ask for a meeting with the Coordinator. Tell them of the non-compliance with Izzi's 504 and ask to either meet with all the teachers in a conference again or double check the plan and tell them you'd like the copy that all the teachers have signed off on...

You are not a hijacker! We love you, mama. Vedo was our plan B. We went Stelara because the mechanism was the other end of the spectrum from the TNF blockers. Many insurance companies won't cover it because using it for Crohn's right now is technically "off label". Because of Claire's...

You are not a hijacker! We love you, mama. Vedo was our plan B. We went Stelara because the mechanism was the other end of the spectrum from the TNF blockers. Many insurance companies won't cover it because using it for Crohn's right now is technically "off label". Because of Claire's...

What is the bladder med? I probably missed it in the thread. That sweet girl needs a break! Hopefully Remicade will be her ticket. J.

Yay!!!!!!

Yay Gus' Mom! I love giddy! We are cautiously optimistic that things have taken a turn here too. Best fecal cal ever at 189. Still on 50% EN and still weaning Uceris but so far......so good. Claire gets dose 4 in a couple of weeks. J.

Yay Gus' Mom! I love giddy! We are cautiously optimistic that things have taken a turn here too. Best fecal cal ever at 189. Still on 50% EN and still weaning Uceris but so far......so good. Claire gets dose 4 in a couple of weeks. J.

👍👍👍 thinking of y'all!!!

Have her try the other side. They had told us to alternate but both times we've used the left, it's been painful. So out of 90+ days, only twice has she used the left. She says the right side is a better "tube side". Claire drinks a lot with the tube in but says it feels weird to swallow food...

Maya - She can do it!!!!!!! Hugs, J

Methotrexate is an immune suppressant as well. Typically patients start with 6MP or Azathioprine when they have IBD. Claire couldn't tolerate 6MP. Also, she has JRA and Methotrexate is used more in RA to help prevent joint damage. So between the intolerance to 6MP and the arthritis, we've...

Sally - What everyone else has said is dead on. Inflammation in the upper GI tract is related to Crohn's. These are some of the problem areas that were identified when my daughter was diagnosed. Don't let up! J.

I hope it goes well, Chocolatechick! Claire is also on Methotrexate. So we call it double-trouble. :-) But so far, we have not noticed any unusual side effects with the addition of Stelara. Keep us posted! J.

I agree. Given his age, I would want him seen at Cinncy or CHOP. He is a sweet little thing! Hugs, J.

We are in week 9 of EN via ng tube. We've been using Vital 1.5. Claire's stools are very soft but formed. First 8 weeks were 90% EN/10% food. We just moved to 50%/50% this week. The dietician told us some kids get formed stools at 90/10 but some stay loose/liquid. As long is the frequency...

Your post has MADE my day!