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I have two children with Crohn's, a boy your son's age and a daughter who is 11. My son loves sport. Not competitive sport but is motivated by spending time with friends. Lately he started an outdoor job. That keeps him moving AND he is making money - the money is motivating. Also loves gaming-...

H had the same thing happen in the past year. Her H & H were fine, ferritin was 5 or 6, and there was a serious fainting episode. As in her front teeth were broken. At emerg we had her go through all tests and they decided there was no explanation. They disregarded the low ferritin because...

Oh my goodness! 😂

Hoping for all the best today. Good news, good results.

I've said it before but can't help repeat that O is amazing. I hope she heals quickly and honestly the world will need to watch out when this young woman emerges full power. It will be incredible.

It may not matter at this point but I have heard a Stelara rep say that 12-18 months is a realistic time frame for Stelara and recently they are moving to a second infusion several months in - to up the drug levels. So besides switching drugs - there are a variety of options within some of the...

Sorry about that! Stelara syringes are SO weird, too, I still never feel like I'm doing it right and it's been about a year, every 4 weeks. The retracting needle, the big click...you are great to set up help for him.

You may able to get a referral from your Humira representative for a nurse at a clinic nearby or one that will come to his residence in his new location. I would reach out to the Humira representative!

P My daughter with Crohn's (now 11) started Humira at age 4 and by age 9 had Humira trough levels of 36. She was continued at weekly dosing for another year at those levels. The problem for her was she was developing significant secondary and opportunistic infections. Shingles, psoriasis...

Sent a submission. Hope your efforts are successful!

Zinc deficiencies did show up for H when Albumin was low and she wasn't doing well. The GI office would advise us to supplement. Sometimes inflammation causes an inability for the small intestine to absorb nutrients from food properly. I would call and see if you need to supplement, if so it...

We did SCD years ago and it didn't work for her. I think I relied too heavily on replacing my baking with almond flour and honey based items. She doesn't tolerate almond flour well. We used Ensure/Boost and comparable generic brands instead of Modulen for CDED. I did the course they (Modulife)...

I remember thinking I would support my 4 year old (at the time) with her first round of 6 week EEN by drinking the shakes too. I didn't get through one.😂 They aren't delicious and my kids (2 with Crohn's) both had 1 or 2 preferred flavors from specific brands and didn't want flavor changes...

Thank you so much. I am writing down even minor complaints in a calendar so that we can monitor changes and duration thanks to the good advice here.

#4 a year ago. If it's out guess the GI? He'll probably try #2

Also it really does help to work with a registered dietitian.

We have a LOT of experience with CDED over the past year. We used Ensure because we have used it successfully for EEN (formula only diet). Lunches: I was able to get some recipes from the CDED recipes Facebook page which is still up and running. For us: 1. a salad with allowed veggies, grilled...

That was our situation. Be patient. For us the Stelara took many months to kick in and it's still not perfect. We've had to add EEN for 6 weeks recently and last April we did strict CDED for 12 weeks and both things helped Stelara work (or maybe just helped in general). I've had more than one...

Good consult with GI this week. With her 6 weeks EEN she brought that Calprotectin down from over 2000 to 800's. All her other labs look great so she's continuing with Stelara for now. She chose to move to online schooling for the rest of the year to rebuild strength. Bonus that she can play...

My daughter would get sick each time she had to restart Methotrexate. It would take 4-6 weeks of injections for her to sleep through the nausea, and not vomit. I guessher body had to learn to process it.