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Hey everyone, my son has developed what seems to be a chronic rash/break out/dryness in his face and neck. He woke up in major pain today. Dermatologist can’t seem to figure it out and said it’s dermatitis. But it keeps coming back. Anyone else deal with this? Could it be a side effect of Inflectra?

Our Insurance will no longer cover Remicade...if you’ve made the switch, any issues? I suppose we don’t have a choice so just hoping and praying it will work well!

Hey everyone, My son has been having terrible pain in his tailbone area for the three weeks that doesn’t seem to be going away. He’s had no falls. It doesn’t hurt when touched...just there when he moves in certain ways. His GI Dr. checked him out and said that it doesn’t look like it’s Crohn’s...

Thank you so much @pdx @crohnsinct @cassimw ... you have been so helpful. just to give you all an update, we had a meeting with the school and have a good plan in place. Hoping it will all work out next year when he goes to school in person!

Thank you so so much @pdx. This gives me hope that we can make it work for my son. His counselor is not proactive either given my experience. My email is [email protected] if the dm doesn’t work. Your template will be very helpful. So once the health plan is in place, who do I contact for the...

Hey everyone, Does anyone here have experience setting up a 504 plan for high school? We just set up a health plan with his school’s nurse, and would like to move to the next step? Anyone have a template or advice as to what I should ask for? For eg, his grades slipped after his hospital stay...

Thank you @Jo-mom and @my little penguin...this has been really helpful. He hardly has an appetite any more, but is still forcing himself to drink the ensure plus shakes daily. Hopefully we will find the dose that works soon.

Hey everyone, Just got the test results back for blood test on 4th infusion, and sadly looks like low remicade levels detected for my son. Dr. said he would up the dosage at his next appointment. Hoping for it to work. Any experience with dosage adjustments?

Yes, he’s still on shakes. He’s been able to stick to 7 ensures daily since November with limited food. But for the past week (surely due to the prednisone dose ending) he’s sick and tired of them. Yesterday all he had was 4 shakes, and some food here and there. I’m afraid that this will become...

Thank you (and everyone else for your responses!) I’ll keep all this in mind. I suppose I’m getting ahead of myself. His Crohn’s does not seem to be under control yet. His major symptoms like throwing up and weight loss are not there anymore thank goodness, but now that he’s no longer on...

That’s great for your son! Yes, I think maybe his Crohn’s was caught later, so we lost time unfortunately. I’ll try the bone scan and see.

Hey everyone, I was wondering if any of your kids have had an increase in height and when did you see the results. My son is 16 and 5’6”...hoping to see some growth over the next year or so. He went from 89lbs in November to 111lbs today. That’s such an improvement.

Have any of you dealt with this?

Hey everyone. It seems like when one symptom improves, something else creeps up:( My son is quite fatigued, bloated and his stool has been an odd greyish color. No pain, just stomach is hard and noticeably distended. We gave him an iron pill day before yesterday, and yogurt with no added sugar...

Thanks guys.

Hey everyone, My son has been complaining about inflammation and “burning” during bm. He said that a sac is poking out. It doesn’t hurt, but is there. Does this sound like hemorrhoids?

Thank you for sharing! I’m hopeful...he has ups and downs but on the whole doing better.

Thank you so much for telling me your daughter’s story. It gave me hope!💕

Thank you for responding! I hope it works for him and that these side effects are minimal and temporary. Glad to hear something worked for you...Wishing you well!

My son has developed a rash on his chest. He’s on prednisone also so I’m not sure which meds are causing this...any experience with this? He has his 2nd infusion tomorrow. Thanks!