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Thank you so much for all the advice. We got the MRI results which showed no signs of active Crohn's, which is interesting because her fcal is over 2000. What it did show was an abnormal enhancement on vertebrae t12. So we are instructed to follow up with our family doctor. Her back pain is...

Well at this moment she's drinking barium so that's not fun. I did end up taking her to the chiropractor and he really did help her pain and mobility. It's a stop gap so she can manage without Acetaminophen.

She was able to take a cancelation spot for mri this weekend for GI referral. Does anyone know if a GI mri is useful for Rheumatologist or will it be a whole separate deal after referral.

Unfortunately, we go to the adult ER. If I can, for GI emergencies I will arrange it so that they can contact her team by phone while she's in there. It's useful if she needs IV fluids or an xray. The have a CAT scan if it was really bad. Not ideal. Usually, I just call the peds IBD nurse for...

I don't know if it would be smart to have her in ER in Manitoba right now. Covid cases are already affecting patient backlogs and I know she wouldn't be prioritized - it's a mess there. It's 4 hours away. Would love to go to SickKids but I'd be looking at driving 4 hours and then a flight to...

Good advice. We will document the length of time of stiffness and other details. She said the shower this morning helped better than a heating pad. The Tylenol helped at the larger dose.

Our only other option is to go back to ER, otherwise it has to wait until the last week of December. She did well for about 6 hours on 650mg of Acetaminophen then repeat. In some instances it seemed worse after getting up. She had me pick her up from school because her pain became intolerable...

I will have her see the GP but if he agrees that she needs a referral I will call in a favor with GI to get it done faster.

She also had restricted movement when they checked. Couldn't slide her hand down her legs down too far on either side or bend very much toward her toes.

The back pain is in her lower mid back and spreads a bit laterally on both sides. It includes her vertebrae. Her urine was checked for signs of kidney issues. She is responding to extra strength Advil (although we have stopped the Advil per GI) it lasted 6 hours before pain ramped up. I'm trying...

I have her booked in to GP after Christmas, probably would see a referral to Rheumatologist at that time. It's important to me to sort it out in the next few months the because if she does fail Stelara then I can make a push for Remicade instead of Entyvio to try and treat both issues. She...

Thank you. As a parent it's super disappointing to be taking care of one issue and then just have some weird thing arrive alongside the first problem. Fortunately, her attitude is amazing.

Also if I buy a TENS unit what do I look for?

This is getting more complicated. For the past week she's had unexplained back pain. I had been giving her Tylenol to manage it plus a heat pad. She couldn't manage at school yesterday and I had to pick her up early and decided to get her looked at by a doctor. His thought was possibly axial...

Infusion for loading dose, then 90 mg every 8 weeks. H wasn't responding/low drug levels at that dose so moved to 90mg every 4 weeks. H has good drug levels at that monthly dose but fcal is up so she is doing 6-10 weeks of EEN. We'll see if that helps her. We're hanging around in emerg for a...

Also @Maya142 I am buying 3 double wall stainless water bottles identical to her actual water bottle and those will hold 1 plus calorie Ensure each. She said if anyone asks she will refer to it as her smoothie. She cried for a few hours first but then formulated her plan.

It turns out that her repeat calpro was similar to her last one (2000+) but her levels were great for Stelara at 11. So what he wants to do is smack down the inflammation to allow the drug a better chance to work before considering a switch to either Entyvio or a double biologic. Her choice was...

We went to Ustekinumab after losing response to Ada after many years of use. But my daughter has duodenal involvement. GI seemed to think it is a better choice for small bowel disease but that remains to be seen. Vedolizumab seems like a good option. I would look into what works best for...

We recently had a big fcal jump so we retested but unfortunately the numbers were similar. It doesn't cost much in time/effort to retest and will put your mind at ease.

If the GI isn't telling you what food to use, then starting CDED on your own to improve chances for remission doesn't change anything for the GI. You can do it alongside Remicade without any permission. We found a local registered dietitian who was happy to work with us on the CDED diet. We...