mother of 8 year old with colitis...What else can We do?

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sams colitis
New Member


Date Joined Sep 2007
Total Posts : 4
   Posted 9/5/2007 6:32 PM (GMT -7)   
My son was diagnosed with uc almost a year ago.  So far we are on our 2nd round of pred.  he takes colazyl 2pills 3x day.  At this point they have said he is steroid dependent and I think next week he will start taking a 6mp.  He is good for a few months, but always begins bleeding again.  We tried canasa suppositories, but he ended up having more diarhea with that.  Anyone who could give me any advice as to where to go from here or what has worked for you, I would greatly appreciate it.  What does anyone know about Remicade for children....It's just really is scarry.  Please any advice on meds or anything. Please respond.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 9/5/2007 7:02 PM (GMT -7)   
Have you tried probiotics or dietary modifications? Omega-3 supplements (fish and flax oils) are natural anti-inflammatories. There are a lot of natural therapies that can be helpful in reducing the need for meds.

Has your son used any enemas? How far has his colitis progressed? Do you know how much of the colon is affected?
Diagnosed with ulcerative colitis spring 1999
Possibly misdiagnosed
 
Maintenance dose sulfasalazine
Probiotics, l-glutamine and fish oil caps
 
 


sams colitis
New Member


Date Joined Sep 2007
Total Posts : 4
   Posted 9/5/2007 7:10 PM (GMT -7)   
thank you for your reply.  We are going to start florstor(probiotic) and he does take a fish oil vitamin daily.  When he was 1st diagnosed, it was just in his lower colon and rectum..thinking it was not a severe case, but we cannot get it under control. I'm very afraid if this is just the beginning what he is in for. confused

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 9/6/2007 6:01 AM (GMT -7)   

Hi Sams Colitis, and welcome to Healingwell. It's always so difficult to hear of a child going through the heck of UC, so my thoughts are with you as you help him battle with the symptoms. You might want to try the enemas along with the 6mp, as one of our members has a motto....."treat from both ends," and this has worked for a lot of folks. I am on Remicade and have been for over two years; just had another one yesterday and I'm doing fine on it. I've had no side effects at all and live a pretty normal life with very few symptoms, and most of it is fatigue or achey joints every so often. Here's another website you might be interested in that is for children with gastro problems:

www.dragonpack.com

Hope this helps, and my best to you and Sam.


Carol

Remicade - will have my 18th infusion on September 5.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/6/2007 6:19 AM (GMT -7)   
If your son isn't seeing a pediatric GI I recommend that you switch to one. The needs of children are a lot different than that of adults. I feel your pain, I cannot imagine anything worse than watching your child struggle with a chronic illness.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 9/6/2007 6:49 AM (GMT -7)   
Good recommendations on seeking a pediatric GI and looking into treating with enemas - particularly hearing that his colitis is limited to the end portion so far. Because enemas are not systemic, they don't have the side effects an oral med does. I'd certainly look into Rowasa or even steroid enemas before I'd bring out the big guns of oral steroids or immunosuppresant drugs - particularly at his age.

Again, I'd highly recommend some dietary changes to see how he responds. If nothing else, I'd try eliminating gluten and dairy for a period of three or four weeks. There are ALOT of misdiagnosed cases of celiac disease. Because UC is somewhat unusual at such a young age, I'd want to make sure there wasn't something else going on.
Diagnosed with ulcerative colitis spring 1999
Possibly misdiagnosed
 
Maintenance dose sulfasalazine
Probiotics, l-glutamine and fish oil caps
 
 


Harpo
Regular Member


Date Joined Jul 2007
Total Posts : 262
   Posted 9/6/2007 10:33 AM (GMT -7)   
I may try this..

http://www.drdahlman.com/index.shtml
Male 36yrs old. Indeterminate Colitis 6 yrs.

100 mg 6-mp
Lialda 2 a day

Protonix
multi vitamin


Horus
Regular Member


Date Joined Feb 2007
Total Posts : 190
   Posted 9/6/2007 1:28 PM (GMT -7)   
Oral 5-asa pills won't help if the inflammation is in the rectum. You must use enemas if he is not able to use canasa. There are also a few other rectum meds he can look into such as rebamipide, sucralfate, and lidocain.
 
All the meds in the world won't fully help if his diet is irritating.  Tell us what you feed him.
 
You really need to be super attentive on reading food labels to avoid things like pepper, yeast extract, wheat gluten, MSG.  Also go easy on the fruit juices.  If his rectum is inflammed almost everything will aggravate him.  Start with HOMEMADE chicken soup NOT FROM A CAN.  Avoid preservatives and raw veggies.  Stew things to soften them up.  Avoid red meat.  Look at his vitamins and cut out IRON.  He might be a little aneamic but it's better to get iron infusions that taking vitamins with IRON.  IRON will upset his already irritated colon.  I can't imagine what you are feeding him for breakfast.  I'd stick with corn flakes or plain rice puffs in rice milk.  Most stores have rice milk in various flavors.
 
Eventually your goal should be to incorporate as much fiber into his diet as you can get away with.  This means resistant starches.  WARNING this will cause gas.  Gas pains are bad and so you need to start off SUPER SLOW but build up gradually over the MONTHS.  Slow and steady wins the race.  He will need the butyrate formed from the starch to help his colon.    You can get this from fiber choice with multivitamins that doesn't have iron in it.  Most stores carry this.  However a child only needs like 1/4 of a tablet at first.   Cold rice has 15 % resistant starch in it.  Slightly green bananas also have this starch.  But the most starch like this comes from beans.     This starch helps form into butyrate that is the most important thing you can get down to his colon of anything you can get into the diet.      Start incorporating curcumin / tumeric into his diet as a flavoring as it is very good for colitis.  The least irritating spice to flavor his food will be celery salt.
 

Post Edited (Horus) : 9/6/2007 2:46:55 PM (GMT-6)


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 9/6/2007 2:28 PM (GMT -7)   
I second the suggestion to check out dragonpack: http://www.dragonpack.com/ibdsupport/parents/ is the link to the parent support group! It is wonderful - lots of information geared specifically about treating children, but also lots of cyber hugs and emotional support for what we as parents go through watching our kiddo suffer.

My 16 year old son was diagnosed when he was 10, but I'm certain he had it for at least 2 years prior to that and my 8 year old daughter was just diagnosed last month. My son just weaned from prednisone (3rd time on it) and my daughter is down to 10mg. My son takes Imuran (similar to 6mp) and my daughter will start 6mp today.

Please come by the dragonpack site. I love HW, but DP is really aimed at treating children. Some of the kiddos are as young as 2.

sams colitis
New Member


Date Joined Sep 2007
Total Posts : 4
   Posted 9/6/2007 6:09 PM (GMT -7)   
Wow!! I 'm overwhelmed with information!!! Thanks to everyone and your feedback!! We are seeing a ped. g.i. I am going to take the advice of monitoring his diet much more!!

This has given me much more hope.

porclein
New Member


Date Joined Aug 2007
Total Posts : 15
   Posted 9/6/2007 7:24 PM (GMT -7)   
My GI's daughter has been taking imuran for 10 years and he says she is doing great on it. She was diagnosed with Crones at a very young age. Her life is completely normal and active. She is a teenager now.
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