My son was 6 when he was diagnosed with UC a little over a year ago. Took him what seemed like forever to feel better. He is in the middle of a flare right now and nothing seems to be helping. He just started Uceris on Saturday and it doesnt seem to be helping at all. We're so frustrated and not sure where to go from here. His GI mentioned a biologic agent. Seems so scary! It just kills me to see my 8 year old living like this!!
Reply posted for lizd.
Hi lizd,
I have found that educating the teacher(s), the school nurse, and even the school counselor, at the start of each school year, about our son's UC was a simple, yet effective, approach to having everyone aware of his potential limitations, absences, tardiness, and medical appts. The school has been great. We don't have a 504 plan yet but will likely institute one in the next year or so and definitely before middle school hits.
Hope this helps.
Reply posted for artsychic323.
Artsychic,
It is very hard to think about giving your young daughter a potent medication such as Remicade. We anguished over the decision but we didn't have long since our son needed something other than ASAs and prednisone. He's now 7 y.o. and has been receiving this treatment/infusion therapy since October. Though still tough to see him go thru the infusions, this treatment has made his quality of life soooo much better. I knock on wood when I say this but it's like he doesn't have UC...it's that effective...for him. It doesn't work for everyone and it can stop working but he's as active as ever and has just picked up another sport - ice hockey - and we'll take that!
Reply posted for gillwill.
My daughter, age 6, was diagnosed with UC in May of 2014. She has had one hospitalization requiring a blood transfusion. Currently she is taking Pentasa, Flagyl, Cultrelle, and Carafate.
Any advice on how to help her manage her disease while at school?
Reply posted for gillwill.
My daughter was diagnosed a month after her 3rd birthday last summer. She is 4 now. It is SO hard watching her go through all this, and I worry about hospitalization, too. We've had a hard year of flares and I feel like she is on so many meds. If she goes off steroids this time and there are issues, we are looking at Remicade, but IV infusions for a preschooler just sound horrible. :(
Reply posted for vivacemartin.
My daughter was diagnosed two years ago with UC and she is now 6. She has been hospitalized every two to three months literally for the last two years due to flares. She keeps getting viruses every time we are weening off the steroid. She has tried all types of meds and is now taking humira and 6mp in addition to prendisolone. Does anyone know of ways i can help her stop getting infections besides washing hands? Also if there are any tips to help my baby. I am exhausted with how to help. I dont want her to get surgery!,,
Reply posted for gillwill.
Not UC but my oldest son was diagnosed at the age of 3 and youngest son at the age of 9 with crohn's disease...so I feel your frustration.
Reply posted for gillwill.
My daughter is 9yo and was diagnosed at 7 with ulcerative colitis..She has been hospitalized one time for 2 weeks.. We are constantly changing her meds to get them right as she has rectal bleeding with every BM. She has had 3 colonoscopy and cant even count how many times she has had blood work done.. This disease is frustrating and unfair!!
Reply posted for gillwill.
Hi, Yes my daughter was diagnosed with UC at age 6 and she is now age 14. If you want to ask questions you can email me at vivacemartin@gmail.com. She also has had multiple flares and had a colectomy last month. We were not given a choice because she became steroid resistant. It is a tough disease for them, but we stay positive and have many experiences.
My son has Crohn's and is currently in jail. T....
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