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Anyone have a young child with UC (under 10 years old)?

Sat, January 25, 2014 7:55 PM

gillwill
Joined Jan 25, 2014

Thu, July 09, 2015 9:41 PM

Thanks to everyone for the replies. For some reason I am only getting notification on this 2015 post, not the previous posts from 2014.

Since my original post my daughter was finally moved off remicaid to vedolizumab. Remicaid did nothing. Thank goodness insurnace paid for it but it lasted about a week each time. We never made it more than 4 weeks between doses. That has now changed. What a HUGE difference on Vedo. She had an entirely normal 6th grade year and has not had any huge flares. Friends, sleepovers, bus trips, all without worry. She also has recurring cdiff that came back during a chest cold, but once the antibiotics kicked in the bleeding and pain stopped.

A big help for us over the year has been Camp Gut Busters in Livermore. She has been able to connect with other kids suffering from UC and Colitis. She looks forward to the annual event.

Sending good wishes and good health to everyone

jschelle
Joined Mar 13, 2014

Wed, July 08, 2015 2:52 PM

Reply posted for jschelle.

I was diagnosed at 8 and had my colon removed when I was 15, I'm 18 now. I took as many meds as my parents let me before I decided on surgery. It's a long road, especially being diagnosed so young.

rachellena
Joined Jul 8, 2015

Tue, October 07, 2014 3:08 PM

my daughter is 16 and was diagnosed earlier this year. she was on prednisone for 5 months - and had a terrible time with headaches while tapering off. it's been more than a month of almost daily headaches. the docs (GI & neurologist) don't think it's the prednisone. we just can't seem to get a mix of meds that are right for her. sorry to whine, been a rough day.

Hugs to all the mama's out there - it's hard for our kids and hard for us too. xo

aepstein1
Joined Oct 7, 2014

Mon, September 22, 2014 8:43 PM

Reply posted for gillwill.

My daughter was diagnosed at 11 and is 12 now. She takes delzicol 6 pills a day. She hasn't been feeling well the last few days. Stomach pains.

jenyetianye
Joined Sep 22, 2014

Thu, April 24, 2014 11:19 AM

Reply posted for lizzies mom.

Hi. My son is now 12 . He was diagnosed at 10. He has uc and extreme joint pain with his uc. He is currently on remicade , however it works for his joint pain, but not the uc. Just hoping to connect to other moms out there.
a.

young blessings
Joined Apr 23, 2014

Mon, April 07, 2014 8:06 PM

Reply posted for gillwill.

My son was diagnosed with Crohn's at 4 yrs old and he is now 11 yrs old and we was just told he was misdiagnosed and actually has UC instead. He has always taken Sulfasalazine. We he was younger it had to be compounded. Wishing your family the best!

pauletta24
Joined Apr 7, 2014

Thu, March 13, 2014 10:45 PM

Reply posted for gillwill.

My daughter was diagnosed at 7 and is now 10. It's very lonely and there are no real support groups. Happy to hear from others who are not in remission on remicaid. My daughter is very strong and does breathing exercises, she uses a hot water bottle to relax before bed. she wakes every three hours to use the bathroom. Lack of quality sleep since august of this year has made her depressed. I had to resort to ear plugs so I can function. We are patients at Stanford

jschelle
Joined Mar 13, 2014

Sun, January 26, 2014 1:44 PM

Reply posted for gillwill.

My daughter was 4 when she was diagnosed, she's now 14. I'm here if you need any advice or just a sounding board.

lizzies mom
Joined Sep 9, 2009

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