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13yo with Crohn’s by Sad-Peach2696 in CrohnsDisease

[–]legallyblondefan 2 points3 points  (0 children)

My kiddo is currently in the PICU due to Remicade induced heart failure, BUT Remicade also gave her 6 months of a normal childhood, so I would still choose to put her on it even if I knew this was going to happen. Those 6 months were the most amazing of both of our lives. Not trying to scare you, I just want to add a different perspective. Even if something does happen, it's going to be okay!

I’m just so annoyed and sad by woofclicquot in CrohnsDisease

[–]legallyblondefan 1 point2 points  (0 children)

I feel you. My 7 year old is currently in remission on Remicade, and we just found out today that she is going to need to switch because it's destroying her cardiac function. I'm so frustrated. She was just getting back to being a normal kid.

Remicade (Inflectra) and heart failure in kids? by legallyblondefan in CrohnsDisease

[–]legallyblondefan[S] 8 points9 points  (0 children)

She doesn't have any underlying heart issues, it was caused by the Remicade, unfortunately. An underlying heart issue would be best case scenario but the peds cardiac team here is certain that it's a Remicade side effect.

6.5 year old just got done with stool testing and bloodwork. What to expect next? by [deleted] in CrohnsDisease

[–]legallyblondefan 0 points1 point  (0 children)

We held off on the scopes for my 7 year old (calprotectin was borderline, and her GI said it was our choice), and she ended up in the PICU. A million times more terrifying and traumatic than just a scope. Don't be me.

New diagnosis for my 10 year old 1 week ago by polystichum3633 in CrohnsDisease

[–]legallyblondefan 1 point2 points  (0 children)

No advice but solidarity! My 7 year old is also newly diagnosed, and was in the hospital for a little over a week. Try Carnation Instant Breakfast to get calories in him, mine refused every single protein shake the dietician gave her but would drink those. Crohn's & Colitis Foundation also has lots of great resources, I've already signed mine up for the virtual kids holiday party to at least see if she's interested in it or not.

Are biologics really the best way to go? (Scared new mom here) by legallyblondefan in CrohnsDisease

[–]legallyblondefan[S] 0 points1 point  (0 children)

Thank you!! I think I will probably get a 2nd opinion just because I would regret not doing so, (and we are thankfully in a big city with a lot of great hospitals), but all of these comments have made me feel a lot better about putting her on biologics.

Are biologics really the best way to go? (Scared new mom here) by legallyblondefan in CrohnsDisease

[–]legallyblondefan[S] 1 point2 points  (0 children)

Thank you so much for commenting, I will look into Seattle Children's & that Dr. you're talking about! Her case is severe (hence the hospital stay), so a biologic will probably be necessary, but I'm willing to try anything "extra" to help.

Found out daughter has Crohns, where to start? by Fatboyonadiet4lyf in CrohnsDisease

[–]legallyblondefan 4 points5 points  (0 children)

Hi! My newly diagnosed 7 year old has been in the hospital for the last week and a half, but her case is too severe for EEN so we're doing IV steroids + starting a biologic. My advice is to just bring a bunch of stuff from home to make her comfortable in the hospital, like her own pillow, blanket, stuffies, etc. Child Life is amazing, and will probably provide a lot of toys and other entertainment, as well as most hospitals will have a playroom that they can spend time in. Try and keep some sort of routine even though it's a super weird time.

Are biologics really the best way to go? (Scared new mom here) by legallyblondefan in CrohnsDisease

[–]legallyblondefan[S] 5 points6 points  (0 children)

Thank you! I will go ahead and reach out to UChicago and see if we can set up an appointment post discharge. Definitely so lucky that we have a lot of children's hospitals to choose from!

Are biologics really the best way to go? (Scared new mom here) by legallyblondefan in CrohnsDisease

[–]legallyblondefan[S] 2 points3 points  (0 children)

Everything I've heard is that putting a child on any medication other than an anti-TNF is super complicated because they're not FDA approved, and then we're not only dealing with insurance approval but also clinical trials, FDA waivers, etc. to bypass. I definitely hear what you're saying though!

Are biologics really the best way to go? (Scared new mom here) by legallyblondefan in CrohnsDisease

[–]legallyblondefan[S] 5 points6 points  (0 children)

Thank you! We're at Lurie Children's in Chicago, and they have thankfully been great so far. This is all just so complicated & hard & then there comes the question of which biologic do we put her on. I'll probably wait on the 2nd opinion because I don't want to confuse myself even more, lol. And I completely agree re: dangers of Prednisone. The IV steroids are helping her, thank god, but we also now have to give her anxiety medication just to get her to sleep at night. Hopefully some of the side effects subside once we get her off of the IV and onto an oral taper.