Welcome to HealingWell, Tinks Dad. I'm so sorry your daughter is having to go through this. I'm sure some of our parents will come along to offer you the benefit of their experience. There's also a support group just for parents of children with IBD that you may want to check out:
http://www.dragonpack.com/ibdsupport/parents/
Children typically have the same medication options as adults. Do you know what part of your daughter's colon is involved (proctitis, procto-sigmoid or throughout)? Often rectal mesalamine can help with rectal and sigmoid flaring. Some of us do better on Colazal than Asacol. Some children take Imuran or Remicade.
One thing you can do right now is to get her started on a good probiotic to replace the good bacteria in her colon. One of the ones I know people give children is Culturelle, and I believe you can get it at any pharmacy. Probiotics can help restore our colon health while our medications reduce inflammation.
Judy
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal, Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
Co-Moderator UC ForumThe information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.
Katmom
Veteran Member
Joined : Mar 2008
Posts : 1202
Posted 4/5/2008 7:29 PM (GMT -7)
sorry you have to deal with this for a 9 year old. Mine is 14, and it is hard enough.
When she didn't respond to the Pred., and 10 Asacols, and the Rowasa almost kept her permanently I t confined to the bathroom, it was time to check in the hospital. The bowel needed rest, and the IV fluids helped...not to mention the IV steroids, which brought her relief in 1-2 days.
Get the enzyme test for 6mp. Ours took 2 weeks(though 1 week is normal). The drug takes a long time to work too. Get the compatibility test done asap, so that you save a week, and have an alternate drug at the ready They can begin this and ween from the steroid, once under control.
Goodluck.
Daughter,14 diagnosed 1-08 w/ UC .learning from you all.
Rowasa, Asacol, Prednizone 50mg, major flare, Hosp. @U of C, Comers. IV steroid, no food, then low residue, home.
Now, began mp6, beginning taper of Pred, now 45mg, horrible acne, moon face, and fearful of future.
trying probiotics, Omega 3, and keeping up with doc visits.
UChick
Regular Member
Joined : Jun 2006
Posts : 173
Posted 4/5/2008 9:24 PM (GMT -7)
Hi!! I'm so sorry to hear about your daughter. She must be pretty tough to have deal with all this at age 9. I know it was difficult for me when I was diagnosed at 11. Most of the meds I've taken are listed in my signature, but here's my number one suggestion: ask about Remicade! In my case it always helped to jump start me back into remission after a couple of little flares. I think most people with UC take some sort of maintenance drug whether it be Asacol, which I've been on from the very beginning, or Colozal, etc. Some drugs like Azathioprine and 6-MP (immune-suppressants) are the same except one is a generic brand. (cheaper)
One time when I was hospitalized the dietitian gave me this flavored powder that you mix with milk, kind of like a milkshake, and I honestly can't remember what it's exact purpose was, but your daughter may like it.
Here's a "home remedy" that I found on somewebsite: Take two teaspoons of apple cider vinegar and honey three times a day and rinse with water.
Age 17
Diagnosed September '01 : Remission since July '02
Asacol- 4 pills 3xday
Azathioprine- 75mg 1xmorning
Centrium A-Z multi-vitamin
Took Remicade 3 times, BIG FAN!!!!
Have Taken: Prednisone, Flagyl, Zantac (for acid reflex)
JewelsOK
Regular Member
Joined : Jun 2007
Posts : 364
Posted 4/6/2008 4:14 AM (GMT -7)
Hi Tinks Dad and welcome. I have a 9 year old daughter with UC, too, and I have a 16 year old son that was dx with UC at the age of 10.
How long has your daughter been on the prednisone? With my son, it took nearly 2 weeks for the pred to start working. The doctor had us move his morning dose closer to lunch thinking that because morning was such a bad time with numerous trips to the bathroom that the pred. was likely passing through too quickly to be absorbed and by waiting to take it after things slowed down a bit it seemed to work MUCH better. Within a couple of days of that he started improving rapidly!
Asacol seemed to make my son's symptoms worse so instead he takes sulfasalazine. My daughter was allergic to sulfa, so she takes colazal. It is a large capsule and can be opened and put in applesauce, yogurt, etc. and doesn't really taste bad at all. Talk to her doctor about rectal meds. My son take Proctofoam or Canasa when he is flaring.
Definitely check out the dragonpack web site that Judilyn listed. I have read there for years and it has been so much help. There are some really great people there that know so much about dealing with children and IBD.
I am so sorry to hear of another child being dx with this disease! {{{hugs}}} to you both!
Julie
Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Vit/Min
Daughter 9 UC dx 08/07 Colazal, 6MP, Iron, Vit/Min., Culturelle
bookworm21
Veteran Member
Joined : Mar 2008
Posts : 1766
Posted 4/6/2008 8:45 AM (GMT -7)
Hi Tinks Dad. I've noticed with me that if oral meds aren't working/helping as much, then the addition of rectal meds is a good thing!
I'm so sorry your daughter is only 9 and has UC. She must be a tough kid--I had a hard time at age 18! Give her a hug for me!
Diagnosed August 2007 at age 18
3 Asacol 3x/day
1000 mg Canasa at night
Currently it is Wednesday, December 12, 2018 10:23 AM (GMT -7)
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