My 3 year old dd has been diagnosed with UC - still in a flare - ugh!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

momof2gr8kids
New Member


Date Joined Nov 2007
Total Posts : 2
   Posted 11/23/2007 4:21 PM (GMT -6)   
My 3 year old daughter was recently diagnosed with UC after much testing and a colonoscopy and small bowel follow through to rule out Chron's.  She's had blood and stool testing galore as well, for everything from bacterial to Celiac. 
 
She's currently in a pretty bad flare.  As a matter of fact, I'd say since the colonoscopy and starting Azulfidine several months ago, it's getting worse instead of better.  She has several very loose bm's a day with a significant (to me) amount of blood and mucous.  All of this is after she was diagnosed at age 18 months with juvenile rheumatoid arthritis (poly type).  Her arthritis was brought under control (remission?) with methotrexate weekly injections, which came after we tried naprosyn and prednisone without any long term success.  Now she's off all of the arthritis drugs and has been for almost a year, but she's on prednisone and the azulfidine, along with prilosec and iron supplement. 
 
I've been finding very little information out there regarding UC and children this young.  For this reason alone, I'm wondering if her diagnosis is correct.  That and she's been on the pred almost 3 weeks and the azulfidine several months with no apparent improvement in her symptoms.  I am just so fearful that perhaps something was missed.  She has a lot of stomach pain now, much more than before the drugs....this is so frustrating.  I don't even really know what I should ask, but I guess I'm just looking for somewhere to go to get info about this disease as it relates to very young children.  Anywhere you can point me to get info and to maybe discuss with other parents?  I don't even know enough to tell whether her doc is a good one or not.  Thanks in advance!
 
 

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 11/23/2007 6:54 PM (GMT -6)   
There is a site one of the other mods recommends that is for parents of children w/ UC. Let me try to find it for you. If I can't hopefully someone will chime in w/ it.

I didn't even welcome you...Welcome. I am sorry your 3 year old has had to deal w/ so much. Does she see a pediatric GI?
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 11/23/2007 6:55 PM (GMT -6)   
Check out this forum specifically for parents of IBDers:

http://ibdsupport.dragonpack.com/


Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 

Post Edited (princesa) : 11/23/2007 5:12:28 PM (GMT-7)


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 11/23/2007 6:56 PM (GMT -6)   
You beat me to it! I just found it:)
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 11/23/2007 7:11 PM (GMT -6)   
I had to look it up... I remembered it had something about "dragon" in the name.

To the OP, being diagnosed with IBD at such a young age is somewhat unusual, but it does happen. From what I've read, the majority are diagnosed in their 20s and 30s, but it's not uncommon for people to be diagnosed younger or older than that.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


haileys letter
Regular Member


Date Joined Nov 2006
Total Posts : 296
   Posted 11/23/2007 8:37 PM (GMT -6)   
Please email me.
 
 My daughter was 15 months old when she was diagnosed with UC.
 I know how you feel.
 
She is currently 7 and she has been off of all medications for over a year now.
 
You can read her story under my signature. I really hope to talk soon.
 
Dave & Kelly
Daughter 7
Diagnosed at 15months with UC (pancolitis) then  Selective IgM defiency
Took many medications, no relief,GI wanted to start her on Imuran.
Took her to a natural doctor. He did a detox on her body.
Going to the restroom 15 times a day, developed pneumonia,recieved shots of Rocephin (wide sprectrum antibioitic) within24 hours of Rocephin bowels were formed.Going on Eight months without any medications and she is doing great She takes Forvia multi vitamin ,Natures Way Primadophilus Reuteri, Viactiv calcium chew, fiber chews daily
 
 
 
 
 
 
 
 
 

Post Edited (haileys letter) : 11/23/2007 7:58:57 PM (GMT-7)


wildfire07
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 11/24/2007 9:24 AM (GMT -6)   
For all the poor babies out there suffering with this horrible disease, and the parents. I don't offer any kind of help in the way of info, but I will offer my sympathy & prayers, I hope nobody minds...
             
 
Diagnosed with UC Sept. 2007
Diagnosed with Degenerative Arthritis, 2006
2 asacol 3x daily for UC. 
Canasa suppositories, also 3x 1x daily, up to 3x as needed
3tsp. Donnatol every 6 hours.
1 depacote 3x daily for bipolar disorder
 


momof2gr8kids
New Member


Date Joined Nov 2007
Total Posts : 2
   Posted 11/24/2007 12:23 PM (GMT -6)   
Thanks for the link...I'll check it out

Kelly,
I pm'd you

Wildfire, thanks for your kind words and prayers. I certainly don't mind, as we need all the help we can get!

lipgloss
Regular Member


Date Joined Jan 2008
Total Posts : 70
   Posted 1/9/2008 12:33 PM (GMT -6)   
Hi, i'm so sorry to hear that your daughter is suffering. Really it bought a tear to my eye.I really hope and pray she gets well, but don't lose hope, there is alot of help out there. just keep looking.
I found this site days ago and find it good talking to poeple who know what it's like.
there is another group i've joined recently which might be of help' they can advice you on anything and are supportive.
It's a national association for colitis and crohns disease,their web site is www.nacc.org.uk.
i really hope they are some help.
Also i'm so glad that Haileys letter sent you that mail, cos the best thing is speaking to someone who's been thru it.
All the best, sorry couldn't be much help, but i pray god makes her better.

samie xxxx

JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 1/9/2008 12:44 PM (GMT -6)   
Please to come to the DragonPack site posted above. There a several little ones the age of your child there. Two of my 3 kids have UC, but they are a bit older than your little one.

Welcome and I hope your daughter finds some relief soon!!!
Julie - Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Biotin, Vit/Min
& Daughter 8 UC dx 08/07 Colazal, Prednisone, 6MP, Iron, Vit/Min.


lipgloss
Regular Member


Date Joined Jan 2008
Total Posts : 70
   Posted 1/9/2008 12:50 PM (GMT -6)   
hi, keylime, again so sorry to hear that your children have UC. to think that they go thru what i do is terrible.
I'll pray they get better.

samie xxxx

WhiteSox1
Regular Member


Date Joined Oct 2007
Total Posts : 135
   Posted 1/9/2008 1:13 PM (GMT -6)   
Momof2gr8kids
 
I can't really offer any advice but your daughter is in my prayers.  Three years old is far too young for this.
Asacol 4 pills 3x's daily
Imuran 125mg.
Prednisone 15mg.
Multi-Vitamins
Calcium with Vit. D Tablets


JsMom
Regular Member


Date Joined Jul 2006
Total Posts : 57
   Posted 1/9/2008 2:01 PM (GMT -6)   
Hi and welcome, I am so very sorry your 3 year old is going through this. My son, now 9, was 4 when diagnosed. It's heartbreaking, but there is lots of hope for relief. It's real important to find a good pediatric GI and a good primary pediatrician as well, make sure they listen to and respect your concerns and answer questions to your satisfaction and are accessible (can you call or email them any time and get responses within reasonable time). If they don't measure up, swtich.

It's also very helpful to have this forum as you gain the benefit of other's experiences.

Stay optimistic. Although you're scared, maintain an upbeat attitude with your child (they need to see light and sparkle in your eyes, especially now).

Make sure also to research suggested medications before you agree to them because many carry substantial risks and side effects that can appear later, so you'll want to weigh these against the potential benefits and the duration of such benefits.

As for a misdiagnosis, I suppose it can be possible, but given all the tests she's gone through, it sounds a little unlikely.

I'm thinking about your little one and praying for her. Also, visit www.ccfa.org if you haven't already.

JsMom
Son UC diagnosed at 4yrs. Now 9years. Refractory to all meds, incl steroids. Refused remicade. Colon and rectum removed 2007. Opted against J-pouch. Permanent ileostomy. No meds. Doing great.

jayce
Regular Member


Date Joined Nov 2007
Total Posts : 393
   Posted 1/9/2008 8:36 PM (GMT -6)   
mom-Chrons and Colitis Foundation of America- -my daughter was recently diagnosed at 19. i found this forum and the people are great, very helpful.
also the CCFA is a national organization, and it offers support groups that can be a great resource for information.
at my first parent support group i met parents of kids that were diagnosed as young as yours , and younger. Those kids are teens and 20's now.
it is worth looking up the organization. Wish you the best.
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily-discontinued
colazal 3 3x daily/switched to 4 4x daily
proctofoam 3x daily/1-2xdaily
mesalamine enema 1x daily
canasa suppostiories 3x daily /switched to court supp 1-2x daily
culturelle probiotic 1 daily/switched to danon activiea?
chewable vitamin
hydrocortisone enema at bed time

Post Edited (PLEASE) : 1/9/2008 6:43:23 PM (GMT-7)

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, August 14, 2018 9:56 PM (GMT -6)
There are a total of 2,992,748 posts in 327,987 threads.
View Active Threads


Who's Online
This forum has 161200 registered members. Please welcome our newest member, kum70885.
318 Guest(s), 7 Registered Member(s) are currently online.  Details
BossJ, Gear, Sara14, Pratoman, Verucasalt2.0, InTheShop, Tall Allen