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Crohn's Disease Forum » Your Story » Ulcerative colitis and my 7 year old Daughter


11-27-2017, 06:44 PM   #1
sapmansports
 
Join Date: Nov 2017
Location: los angeles, California
Ulcerative colitis and my 7 year old Daughter

Hi, my daughter is 7 years old and was diagnosed 3 months ago with Ulcerative colitis, they started her about 3 months ago with Imuran and Solfasaline, her Esr was at 56 and dropped to 26 and now just got back new blood results and it went back to 54, can anyone tell me why? is the medication not suitable for her? are there other medicines they can give her to lower the ESR?
We are pretty freaked out right now as we were not expecting to see the higher rate. Three months into the medicine , we expected drastic better results. Are there reasons why her est would go back up?
11-27-2017, 11:09 PM   #2
Maya142
Forum Monitor
 
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Hi and welcome! Check out the Parents of Kids with IBD section - lots of parents there who have been in your shoes.

Her ESR could have gone up for several reasons. If she has had a virus recently that could do it. But it could also be that the medications have not fully kicked in or are not working for her. Unfortunately, sometimes it takes quite a bit of trial and error to find the right combination of medications.

Imuran takes a while to kick in, but by 3 months you should have some idea of whether it is working. It is possible she needs a biologic like Remicade or Humira in addition to Imuran. Pediatric IBD is aggressive and often needs to be treated aggressively. The goal is remission to prevent complications and surgeries.

I'll tag some parents some you can hear from them:
crohnsinct
Tesscorm
my little penguin
Pilgrim
Farmwife
Jmrogers4
pdx
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-28-2017, 01:01 PM   #3
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
Hi there. Welcome to our group although I am sorry you had a need to find us.

Maya is right about ESR. Both of my girls will be solidly in remission with normal ESR's for a while and then suddenly blip way above normal once and then go right back down. To make matters worse, we can never connect it to an injury, cold, virus or what not. Once could be a blip but she is early in treatment so I would watch the trend.

How are her symptoms? Are they ramping up? Any new things going on that might point toward active inflammation?

How about her other labs? HGB? CRP? Albumin etc?

Hugs It takes a good year to get used to all of this. We are here for you until that time. Ask away!
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
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