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Glad to hear it!

Ohhh! Thanks for breaking that down for me. That makes a lot of sense. Wish the doc would have explained it that way. That's the thing about this doc - I don't doubt that she knows a lot, she just isn't good at communicating her rationale for things. Be that as it may, I'm just glad she was...

Update: So here's what happened at the appointment. The doctor reviewed results of scopes/biopsies (all good) and said that since my daughter has been in remission for at least a couple of years, she recommends lowering the dosage and possibly getting off Remicade at some point (I'm unclear if...

lol! Can I just say how much comfort that last statement gave me? I was like: Hell yeah - I've got the Crohn's forum moms on my side! I've got back up! ;-)

Thanks for responding and thanks for tagging the others ;-)

That’s my thinking too. She’s on 400mg every 8 weeks per the infusion center. I thing that’s 10mg? Maybe they could notch it down a bit? But I’ve just never heard of this and since they only check her levels like twice a year due to insurance, we won’t even know it that’s going to keep her...

This particular resource was created by the Parent Advisory Council of ImproveCareNow (a collaborative community where patients, parents, clinicians, and researchers work together to improve the health and care of children and youth): Accommodations Toolkit - the goal is to help you better...

Remicade question - decreasing dose?: My daughter has been on Remicade for Crohn's for 5 years has been doing well. Recently her GI left the practice and we started seeing a new GI there. After my daughter's scopes last week, the GI said she wanted to talk with us at the follow up appointment...

Hi everyone, It's been a while since I've posted. My daughter just turned 18 :ywow: I'm thinking about her going off to college in a few short months... One thing I know that I need to get ASAP is a Power of Attorney. Have any of you done this yet? There are a few forms online that I...

I help run a parent of kids with IBD support group in Northern VA, and this post is actually for a friend in the group. Her son is 11 and was diagnosed at a young age. He was mostly asymptomatic for about 5 years, and then had a terrible flare that sent him to the hospital and led them to...

Thank you all for your responses! I don’t have her actual labs, I am only going by what the doctor told me. She said that we would test her ferritin levels at her next infusion in two months but suggested that I may want to make an appointment With a hematologist To follow up in the meantime...

Hi everyone - happy to say I haven't been to this forum for a while, but I'm back in search of your collective knowledge! So my daughter has been "slightly anemic" for quite some time. They say her hemoglobin is low, but her iron levels are okay. She's tried iron supplement, but it doesn't do...

Everyone, I posted about a month ago asking for suggestions on what to take with us to the hospital when my daughter had her surgery and some of those suggestions were priceless -thank you! I just wanted to post an update to give some encouragement to those whose kids might have to have a...

Agree with Maya. This was very similar with my daughter. She's at 10mg now, but started at 5 and worked her way up. No side effects.

This is SUCH good information! Thank you SO much! I told my husband that I posted on this board last night and that I was taking notes on what to bring/ask/expect. He seemed puzzled, as if it was pretty self-explanatory. This is exactly the sort of stuff I would have never thought of...

I love that this forum is worldwide. I love learning new UK terminology ;-) Thanks for all of your suggestions!

Another old friend - good to hear from you Farmwife! Thanks so much for the suggestion - I wouldn't have thought of that :-)

I didn't know there was such a thing as a pain specialist. Thanks for the suggestion! I'll certainly ask about that...

Thank you KatieRose! Very good suggestions! Sorry to hear you had an emergency situation (that's what we're hoping to avoid), but very glad to hear you had a fast recovery!

Thanks so much for your responses! Like I said to MLP, it's so comforting and reassuring to get advice from you guys. I would have never thought of things like heating pad, bed rail or shower seat - but all make a lot of sense! Hugs to you and your family.