6 Year old with UC

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WorriedParents
New Member


Date Joined Aug 2007
Total Posts : 3
   Posted 8/23/2007 8:37 PM (GMT -7)   

Hello all, I am new to this forum.  My 6 year old son was diagnosed with mild UC about 6 months ago.  His symptoms began after 5 days on an antibiotic which he was taking for strep throat. We first thought it was a reaction to the antibiotic.  However, after multiple stool samples, blood tests (he has marker for UC) and a colonoscopy, we were told it was not related to the antibiotic.  He was put on Pentasa which after a few weeks seemed to work, but after about a month the UC symptoms reappeared.  We tried a couple of suppositories (can’t remember the drug names) none of which worked.  He was then put on prednisone and taken off of the Pentasa.  His UC symptoms went away pretty quickly, although at the expense of the prednisone side effects.

 

As the dosage of prednisone was being reduced we started Pentasa again, this resulted in another flare up.  The Pentasa was then stopped and the flare up ended pretty quickly, all the while still on the prednisone.  The doctor determined that he should not take Pentasa or any other drug in that category due to his reaction to the drug. 

 

The doctor recently prescribed Imuran.  After reading a little about this medication my wife and I are really very concerned, especially given our son’s age.  This seems like such a strong medication to give to a 6 year old as a maintenance drug which could last indefinitely.  Any opinions would be greatly appreciated.


doors12
Veteran Member


Date Joined Jul 2006
Total Posts : 637
   Posted 8/23/2007 9:24 PM (GMT -7)   
I apologize if this is off topic - but you mentioned a marker for UC in a blood test?  To my knowledge that is something that Crohn's & Colitis Foundation's sponsored research is still trying to discover, ie none exists yet.
Diagnosed with Ulcerative Colitis 6/2006 at age 26 after sudden E.R. visit
~Affecting Transverse Colon
 ~I had Mono in 2000
On Colazal 3x3/day; Folic Acid 1mg; Calcium/Magnesium/Zinc combo, Biotin
In remission about 2-3 months after E.R. but not back to normal!
 
~Interested in finding a cure/making sense out of U.C. and philosophical and psychological aspects of UC and "Stress" and Personal Development issues with Chronic Illnesses. 


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 8/24/2007 5:44 AM (GMT -7)   
I am so sorry to hear your son has UC. I have a 15 year old w/UC, dx at age 10, but likely had if for a few years prior and my 8 year old daughter was dx a few weeks ago. Both my kids are currently on prednisone and my son is also on Imuran. My daughter will be starting 6mp (very similar to Imuran) in 2 weeks.

HealingWell is such an awesome site, but I would like to recommend http://www.dragonpack.com/ibdsupport/parents/ This site is especially for support to parents of kids with IBD and is a wealth of information pertaining to treating children and great support for what we as parents face dealing with our children.

I wonder why your son's doctor did not try other drugs like sulfasalazine, asacol, etc.

My daughter had markers for UC and my son's tests were negative for both Crohn's and UC but biopsies and scope say UC. His blood test was the older test (First Step). My daughters was the IBD serology 7

Again, I am so sorry to hear that you all have to deal with this. Pop over to DragonPack and check it out.

WorriedParents
New Member


Date Joined Aug 2007
Total Posts : 3
   Posted 8/24/2007 5:58 AM (GMT -7)   
Thanks for your reply.  Please review the attached from an article published in 1998.
 
 
"Perinuclear antineutrophil cytoplasmic autoantibodies (pANCA) are a well recognised marker for ulcerative colitis."
 

WorriedParents
New Member


Date Joined Aug 2007
Total Posts : 3
   Posted 8/24/2007 6:06 AM (GMT -7)   

Keylime, thanks for your reply. I will certainly check out the site you've recommended.  The reason the doctor did not prescribe sulfasalazine, asacol, etc. is that they are too similar to Pentasa and would my son would likely have the same side affects from those medications.

Sorry to hear you have two children with UC.  Do you have any concerns regarding Imuran? Has your son had any side affects?

Thanks again!


Harpo
Regular Member


Date Joined Jul 2007
Total Posts : 262
   Posted 8/24/2007 7:20 AM (GMT -7)   
WorriedParents said...
<SPAN style="FONT-SIZE: 10pt; FONT-FAMILY: Arial">Hello all, I am new to this forum.<SPAN style="mso-spacerun: yes"> My 6 year old son was diagnosed with mild UC about 6 months ago.<SPAN style="mso-spacerun: yes"> His symptoms began after 5 days on an antibiotic which he was taking for strep throat. We first thought it was a reaction to the antibiotic.<SPAN style="mso-spacerun: yes"> However, after multiple stool samples, blood tests (he has marker for UC) and a colonoscopy, we were told it was not related to the antibiotic.<SPAN style="mso-spacerun: yes"> He was put on Pentasa which after a few weeks seemed to work, but after about a month the UC symptoms reappeared. <SPAN style="mso-spacerun: yes"> We tried a couple of suppositories (can’t remember the drug names) none of which worked.<SPAN style="mso-spacerun: yes"> He was then put on <SPAN style="COLOR: black">prednisone and taken off of the Pentasa.<SPAN style="mso-spacerun: yes"> His UC symptoms went away pretty quickly, although at the expense of the prednisone side effects.

<SPAN style="FONT-SIZE: 10pt; FONT-FAMILY: Arial"><SPAN style="COLOR: black"><?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>

<SPAN style="FONT-SIZE: 10pt; COLOR: black; FONT-FAMILY: Arial">As the dosage of prednisone was being reduced we started Pentasa again, this resulted in another flare up.<SPAN style="mso-spacerun: yes"> The Pentasa was then stopped and the flare up ended pretty quickly, all the while still on the prednisone.<SPAN style="mso-spacerun: yes"> The doctor determined that he should not take Pentasa or any other drug in that category due to his reaction to the drug.<SPAN style="mso-spacerun: yes"> <o:p></o:p>

<SPAN style="FONT-SIZE: 10pt; COLOR: black; FONT-FAMILY: Arial"><o:p> </o:p>

<SPAN style="FONT-SIZE: 10pt; COLOR: black; FONT-FAMILY: Arial">The doctor recently prescribed Imuran.<SPAN style="mso-spacerun: yes"> After reading a little about this medication my wife and I are really very concerned, especially given our son’s age. <SPAN style="mso-spacerun: yes"> This seems like such a strong medication to give to a 6 year old as a maintenance drug which could last indefinitely.<SPAN style="mso-spacerun: yes"> Any opinions would be greatly appreciated.<o:p></o:p>



The lady next to me her cousins child got it at 4...

They went on the SCD diet and the kid is fine now as far as i know.. I've never tried it because Im a glutton.. But hey it may work..
Male 36yrs old. Indeterminate Colitis 6 yrs.

100 mg 6-mp
Lialda 2 a day

Protonix
multi vitamin


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 8/24/2007 9:06 AM (GMT -7)   
Oh yes, I do have worries about all the medications my children are on, especially the Prednisone and Imuran/6mp. I just tell my self that the dose he takes of the imuran is so much lower than that which is used in organ transplant patients and that the drug has been in use for a very long time. It is tough to come to turns with all of this, but my son was so sick, we had to do something, and it helped!!

His main side effects besides the regular prednisone ones are hair loss which we think is from the imuran although the dr. thinks it could just as easily be from having been so ill/weight loss and the stress that that caused. The hair loss seems to have leveled off now and all in all he is doing quite well! He had been flaring for over a year! His blood is drawn every 2-3 weeks to check liver and white/red counts and alot of over things, and we did have to lower his Imuran due to slight liver activity, but his blood work is all good now (well, we go for another blood draw today to make sure).

He take Pred, down to 10mg from 40mg, Imuran 50mg, 3/500mg sulfasalazine 3 times per day, folic acid, probiotic, canasa every other night (rectal suppository), vit/min supplement.

My daughter is on Pred. 15mg down from 25mg, and will be starting sulfasalizine tomorrow (1 500mg am & pm) and 6 mp 12.5mg in 2 weeks.

Surgery seems to be the only was to avoid these meds., but what if it turns out that is was really Crohn's disease? It is all very overwhelming. I just try to take in one day at a time and sometimes that is even too overwhelming and I live minute by minute.

Julie

UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 8/24/2007 5:54 PM (GMT -7)   
WorriedParents - first, sorry to hear about your son.
as for Imuran, as someone who was put on it 2 months ago, I guess my feeling is that it is a better option than prednisone. so, I would get a second opinion. perhaps from someone who specializes in pediatric IBD if such a MD exists. have you looked at the mayo Clinic to see if they have a specialist?

But, if your son really can't take the ASAs - and some people really can't - then unfortunately he has to bump up to imuran/6-mp, as those are likely better options for a developing child than prednisone. prednisone is deceptive because it is cheap and works so quickly, and because some Gis give it out so readily, but it is a really big deal drug, unfortunately.

one thing I find encouraging about Imuran is that it is not necessarily a life-long drug. As I am sure you know, UC is unpredictable, meaning it can get worse but it can also get better. it is completely possible that he will need it for a few years and then be able to get off it for at least a few years. at least, that is my hope for him and for me.

hope this helps.
29/Female/NC
Pancolitis dx 3/07.
Currently on 12 Asacol a day.
*100mg Imuran b/c steroid dependent. (will dose up to 125 or 150 eventually)
*back on prednisone while Imuran kicks in. Down to 5 mg on 8/13.
Various vitamins, probiotics, fish oil.
Engaged: June 1, 2007

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