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It has been 18 months since my daughter's CD diagnosis. So it was time for a re-scope to see if the outside signs of "clinical remission" were matching what it looked like on her insides. Yesterday was upper endoscopy and colonoscopy day. What these kiddos go through and handle like champs just...

I so very much understand your worry and concern. I was right there with you about a year ago. My daughter (now 13) has been on combo therapy of Remicade and MTX injections since last May. We tried Remi only for a few months but she was just getting worse and worse. Finally her GI said that...

My daughter also had a reaction during her 3rd infusion. Same type of thing ... hot and flushed and felt a tightness in her chest. Her GI doc said a reaction can be most common during the loading doses. They stopped the infusion right away and treated with Benadryl and we tried again the...

My daughter is on Remicade every 6 weeks. We tried just Remi for a few months but her body was just not having it. This was last Jan-May, after she was first diagnosed, and the inflammation was extreme. Her Remi levels when they would do a blood draw were at zero, and that was after 4 weeks...

I know this is a scary decision. I always felt like this was one of those "damned if you do and damned if you don't" type of decisions. But this board and all the parents on here was SO helpful to me ... helped me think more calmly and rationally in a time where I was so worried and scared and...

Yes, I do believe the denial is because of the high dosage (500mg) and the shorter frequency (4 wks) vs the normal lower dose at 6-8 weeks. The only reason we are at this protocol is because she was retaining NO levels of Remicade between infusions. And that was even still going every 4! So...

So sorry to vent here ... but I knew you would all understand!! I would say, during this whole horrible experience of my daughter being diagnosed with Crohn's Disease, that I have tried very hard to maintain my optimism and positive outlook. I have tried to see the positive side of the cards we...

My 12 year old daughter was diagnosed in January and we rode a very emotional roller coaster of feeling better, feeling horrible, feeling better, back to stomach pain and losing weight and vomiting. Our GI said that these kiddos, especially at the beginning stages when inflammation is so...

Yes, she has prescription folic acid to take. And they gave her zofran to take before the shot to help with any nausea. Thanks for all the well wishes! I know we are all in the same boat ... and we just need to keep rowing, rowing, rowing :)

So as with this disease, things change every day! Spoke to the doc last week and we decided to add MTX weekly injection to the repertoire. DD is just metabolizing the Remicade too quickly at this stage. We did a mid trough blood draw last Monday (just about 2 1/2 weeks after her infusion) and...

Thank you everyone for all the thoughtful advice! I do believe I am leaning towards the MTX first as I just feel more comfortable with that route ... maybe unfounded comfort, but my heart and head are leaning that way. Her doctor did say that if she was able to remain remission for at least a...

I just talked to my daughter's GI doc. We did labs today to get a Remicade level "mid infusion cycle" to see where we are and why she isn't feeling well just 12 days post infusion. (results are not back quite yet) She said she thinks it is time to add another medicine to the Remicade because...

DD re-developed her mouth ulcers over the weekend. And her throat is sore so I imagine they are running through her digestive tract again :( The mouth sores were one of the first clues that the GI nurse practitioner used to diagnose her Crohn's at the beginning. (what two other doctors said...

Wanted to add there are options besides Remicade and Humira. Cimzia and Simponi are other TNF inhibitors. Neither is approved yet for kids, but they are being used off-label. Entyvio is a completely different kind of biologic which is approved for Crohn's and UC in adults (but again, is used...

Trying to learn to navigate this board and how to reply to everyone :) THANK YOU all for taking the time to read our story and reply with your thoughts and advice. While I am deeply sorry ANY of us are here ... it is helpful to know that there are other parents and kids out there riding the...

Sorry this is going to be long. I am a new Crohn's parent and I have soooo much to ask! My 12 year old daughter was diagnosed in January with Crohn's disease ... moderate to severe with perianal presentation and fistulas. After all of the blood work, scopes, and MRE and what her GI doc calls...