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Agree with the others on CBT. My son doesn't do well with needles either, but after a couple months of CBT with his therapist, he chose to do an IV straight on (no creme or j-tip) because he felt ready. Unfortunately, the nurse missed and blew the vein, but the point is that CBT provided him...

Talk to me about college and having IBD. What has been your kid's experiences? We're starting college visits this summer. Should we visit the disability offices during these visits? Or wait until he's more sure of where he wants to go? What accommodations have your kid's needed and used? Any...

Is there a reason the GI wants to do Humira first instead of Remicade?

Finally got the biopsy results back... all negative. No inflammation in any of the ten spots they tested. Happy momma right now! :dusty:

My son has no interest in taking about his Crohn's either. I think you hit the nail on the head when you said he feels well, so might not see a reason to talk about it (that and the girls). On a positive note, if he really likes his therapist, I bet he would, if he ever needed to, open up to her...

Is your son on any other meds? Even over the counter? Anything else that could be causing this (tho I agree with the others that it does take time)?

A high fecal cal can sometimes show up with Celiac Disease. You can ask for a Celiac panel to be run and, as long as they are going in for an endoscopy, they can do biopsies and check for blunted villi as well. Just don't jump too far ahead and pull gluten from her diet yet. She needs to be...

What specifically is scaring you about the biologics? Side effects? The administration of them? Just that they're strong meds? I was afraid of the meds too. My son started on Pentasa, it didn't work. He ended up having a resection at the age of 12 and flared again three months later. He started...

You might want to consider tracking his labs in a spreadsheet over time to help you figure out what are good indicators for him and what his "normal" is. For example, CRP has historically been a good indicator of inflammation for my son, but the tricky part was that while he was still in the...

How are you doing, momma? That's a lot of stuff going on. Are you taking breaks, taking care of you?

I didn't mean for this to sound like its about me. I was just trying to offer a place for the parents to voice thoughts and frustrations that we sometimes keep bottled up for whatever reason. Simply a place to vent a little, but if comments are going to be analyzed and judged... then never mind.

I'm not sure if I'm going to follow through on this, but thought it would be a good thing to discuss here anyway. If you were to write an open letter to your child's ped GI, what would you want them to know? For example, our GI didn't know the Anser IFX text for Infliximab was $2500 and a pain...

Thanks for asking! It went well. He was up really late playing video games with friends, so I'm not sure if the 12 hours he slept was from that or the mtx or simply being a teenager, but he was fine all weekend. So, next silly question... Remi in two weeks. He's doing mtx on Friday nights and...

He takes the mtx before school? And no nausea? Do you think kids who are prone to cause more likely to experience it?

I think it depends on how elemental you're going. If you're going to the hospital to start it, I'm assuming you're doing tube and pretty elemental. Most of the more elemental "drinks" aren't very palatable from what I hear. My son did Boost/Ensure for three weeks, but they're much more...

DS is going to start oral methotrexate tonight. He's on a 7.5mg dose weekly (along with 1mg folate daily). Should I give him Zoran first? Or go without this first time and see how it goes? Based on what I've read here, many of you have your kids take it right before bed, right? Should I have...

I just started "The Light of the Fireflies" by Paul Pen which was free from Amazon First (Kindle). Other recent favorites: The Boy on the Wooden Box by Leon Leyson A Dog's Purpose by Bruce Cameron Touch by Claire North JMRogers - Check out a series called Gone by Michael Grant. It's a teen...

The CCFA site is a good resource, but I get most of my information here. Your next big decision is likely going to be what maintenance med to put your son on. The elemental diet is the first step to getting his disease under control, but you'll need a maintenance med to keep it under control and...

I'd think this one would be a tough read for the mommas. I cried my way through Fly a Little Higher by Laura Sobiech because it hit so close to home (and literally, geographically - Zach went to the same infusion center as DS and high school in the next town over). Let us know what you think of...

Yes! The Rose Gardner series. Looks like the first book is free for Kindle. Twenty-eight and a Half Wishes is the first book of eight by Denise Grover Swank.