9 Year Old Diagnosed with Crohns - is this common?

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LSF
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Date Joined Jul 2010
Total Posts : 32
   Posted 7/21/2010 1:45 AM (GMT -7)   
I just found out that a friend's 9 year old daughter has been diagnosed with Crohns.
 
This seems quite young to me. Does anyone else know of a diagnosis so young?
 
 
 
LSF
 
Diagnosed in 2005 after many years of wrong diagnosis (Gastric Migraines, IBS etc). One resection emergency surgery 3 months after diagnosis due to blockage.
 
Just taking Questran (colestyramine) with cranberry juice daily and the occasional immodiums now (I have them in every bag).


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 7/21/2010 2:12 AM (GMT -7)   
Sadly, yes. One of our long-term members was diagnosed at age five :-(, and we have the parents of some diagnosed babies here too.

I can't imagine having to deal with Crohn's while so young. It's heartbreaking.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


LSF
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Date Joined Jul 2010
Total Posts : 32
   Posted 7/21/2010 2:39 AM (GMT -7)   
They want to talk to me about it all which I am fine with.

I was also thinking of telling them about this forum but am worried that some of the tougher storys on here will scare them? Some scare me!
 
LSF
 
Diagnosed in 2005 after many years of wrong diagnosis (Gastric Migraines, IBS etc). One resection emergency surgery 3 months after diagnosis due to blockage.
 
Just taking Questran (colestyramine) with cranberry juice daily and the occasional immodiums now (I have them in every bag).


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 7/21/2010 3:43 AM (GMT -7)   
There's a forum for parents who have kids with Crohn's. I can't remember what it's called, though: Dragon somethingorother? Maybe one of the other members will be able to remember it.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


MaryS
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Date Joined Jan 2003
Total Posts : 1668
   Posted 7/21/2010 4:31 AM (GMT -7)   
This is the Board for Parents of Younger IBDers below. This Board itself is wonderfully fabulous but is definitely scary for a Parent of a young IBDer. I have been a member of the Parents Board for 11 years. My IBDer is an adult now so this Board is not so scary anymore!!

http://www.dragonpack.com/ibdsupport/parents/

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 7/21/2010 7:45 AM (GMT -7)   
It is unusual, but not unheard of.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


vixen
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Date Joined Jan 2010
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   Posted 7/21/2010 10:19 AM (GMT -7)   
It is great that you are happy to talk/listen with them and initially it does almost appear to consume every waking moment where if you are not talking or thinking about it you are researching it.
Some of the stories are scary but that doesn't mean that their child will suffer everything possible going. By reading posts they will probably get a better understanding of the disease and complications but I think it is better to be prepared as opposed to scared.

My son was diagnosed at 16, last year. I don't know what his future holds or how ultimately this disease will affect him I know how it could go but thankfully I think I am getting past the stage of dwelling on it too much-afterall pointless worrying about something that may or may not happen.

Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 7/21/2010 11:47 AM (GMT -7)   
I self diagnosed at 13. If I had been paying attention maybe I would have seen signs at an earlier age. I never really thought to ask my mother why she wasn't paying more attention and didn't push the doctors more since she was the one who had CD and the reason I knew what I had. But as a child a neighbors grand daughter had a resection at 5 for CD, this was in the late 60's or early 70's, so it really has been happening for quite some time. I think it is just something that people are getting more comfortable talking about.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


jdiane
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Date Joined Jan 2003
Total Posts : 1131
   Posted 7/21/2010 11:49 AM (GMT -7)   
The average age of diagnoses is getting younger and younger. There is some very interesting pediatric research going on now. I would have them look into Camp Oasis with CCFA. This is a camp for kids with IBD. It's an amazing experience.

http://www.ccfa.org/kidsteens/camp
 
 


sr5599
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Date Joined Aug 2007
Total Posts : 1202
   Posted 7/21/2010 1:28 PM (GMT -7)   
My daughter has a friend, 12 years, who was diagnosed a year or so ago. It breaks my heart... Best of luck and I hope they get her under control quickly!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09


DebbieCrohns
Regular Member


Date Joined Nov 2005
Total Posts : 174
   Posted 7/21/2010 1:38 PM (GMT -7)   
Hi,
 
I am sorry your friend's 9 year old daughter was diagnosed with Crohn's.  How is she doing?
 
My daughter was diagosed 17 years old and I looked all over for information.  One place I had found was the Pediatric Crohn's & Colitis Association at http://pcca.hypermart.net/index.html  Your friend might be interested in visiting this website.  I hope your friend's daughter is soon in remission.
 
Debbie

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 7/21/2010 4:59 PM (GMT -7)   
This is more common than once was I was diagnosed back in 87 when I was 8 and they were surprised since it wasnt common then compated to now
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 7/21/2010 5:25 PM (GMT -7)   
JMHO, but I also think that doctors are becoming more aware too...I know I was "officially" diagnosed when I was 28, but I had symptoms back as early as 8 years old...the ped docs just said it was a "nervous stomach" (and gave me tagament to an 8 year old!)or "growing pains"(with the pain was so bad I was crying and couldn't walk, and then said it was because of "flat feet"), or lazy (when I just didn't have the energy to move, I was sooooo tired)...it was when I was 28, that blood was coming out in large quantities, and that made it quite easy to diagnose. So what I am saying, is that doctors are not as quick to just call it a "nervous stomach" anymore, but actually do a bit more investigating...

So I agree, yes it is young...and I am hoping that she does well with treatment...
"The earth laughs in flowers"


comedybob
Regular Member


Date Joined Jan 2010
Total Posts : 241
   Posted 7/26/2010 9:10 AM (GMT -7)   
My son was diagnosed at 9 as well. It is a hellish experience for anyone let alone a child. on the other hand, research is turning up all kinds of treatments for all kinds of manifestaitons. tell oyur friend about this place. she can come here and learn lots, including that she is not alone.

bob b
13 year old son diagnosed at 9,
one month of pred at beginning 
2 years of immuran ineffective
SCD seemed to help(less pain gained 8 pounds in three months)
considering Remicade


LSF
Regular Member


Date Joined Jul 2010
Total Posts : 32
   Posted 7/28/2010 4:57 AM (GMT -7)   
I have had a chat and they told me their doctor specifically told them NOT to look on the internet! I said probably best for now.

The parents are worried about steroids and surgery (they know I had surgery and have been good since but I skipped the steroids). THey just want her to be well to go back to school in September.

They are waiting for a follow up appointment but I'll keep you informed.
 
LSF
 
Diagnosed in 2005 after many years of wrong diagnosis (Gastric Migraines, IBS etc). One resection emergency surgery 3 months after diagnosis due to blockage.
 
Just taking Questran (colestyramine) with cranberry juice daily and the occasional immodiums now (I have them in every bag).


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 7/28/2010 5:19 AM (GMT -7)   
I sort of agree that it is best not to look on the internet because it is scary for Parents new to IBD to read all the worst case scenarios. I did and my Daughter was already 17 and it was pretty scary until I found the Parents of IBDers board. It actually saved my sanity to be able to vent and get firsthand info from others who had been or who were walking in the same shoes.

When the Parents are ready I do suggest that Board. There is much that can be learned especially if IBD interferes with their Daughter's schooling and a 504 Plan needs to be put in place for her. Soooo many experienced Parents there of young IBDers from Toddler age on up.
Mum of an IBDer since 1999. Daughter diagnosed at age 17 with Crohns/Colitis. This disease s*cks!!


LSF
Regular Member


Date Joined Jul 2010
Total Posts : 32
   Posted 7/28/2010 5:21 AM (GMT -7)   
What is a 504 Plan?
 
LSF
 
Diagnosed in 2005 after many years of wrong diagnosis (Gastric Migraines, IBS etc). One resection emergency surgery 3 months after diagnosis due to blockage.
 
Just taking Questran (colestyramine) with cranberry juice daily and the occasional immodiums now (I have them in every bag).


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 7/28/2010 5:53 AM (GMT -7)   
A 504 Plan is an educational plan that can be put in to place when IBD or other disabilities interrupts the life/education of a student. Normally used in grade and high school. In College it is called Disability Services or Vocational Rehab.

[url]http://specialchildren.about.com/od/504s/f/504faq1.htm
Mum of an IBDer since 1999. Daughter diagnosed at age 17 with Crohns/Colitis. This disease s*cks!!


Aussie1971
Regular Member


Date Joined May 2010
Total Posts : 115
   Posted 7/28/2010 6:15 AM (GMT -7)   
My eldest Daughter is just about to turn 10, and has been suffering from severe stomach pains since she was 8 and they have no idea why. I actually asked if it could be Crohn's and they told me definitely not. I told them that I got told for over 20yrs there was nothing wrong with me - how can they rule it out without testing? So I agree, it's just a case of some Dr's becoming more aware. I wish her all the best, it's a horrid disease to have as an adult, let alone as a child.
39yr old Single Mum of 3 Girls living in Sydney, Australia. Diagnosed with Crohn's April 2009 after suffering for over 20 years.
 
Current meds: 6mp, Salofalk granules, somac, Vendolizumab clinical trial, mobic and panadol osteo.
 
Also dx with Spondyloarthritis of the sacroiliac joints and psoriasis.


LSF
Regular Member


Date Joined Jul 2010
Total Posts : 32
   Posted 7/28/2010 6:46 AM (GMT -7)   
MaryS - we are in the UK. I wonder if there is a similar plan in place here?
 
LSF
 
Diagnosed in 2005 after many years of wrong diagnosis (Gastric Migraines, IBS etc). One resection emergency surgery 3 months after diagnosis due to blockage.
 
Just taking Questran (colestyramine) with cranberry juice daily and the occasional immodiums now (I have them in every bag).


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 7/28/2010 7:57 AM (GMT -7)   
Hmmmm. Another good reason that the Parents of IBDers Support Board might be a handy tool as there are some Parents there from the UK.

This is from Crohns Colitis UK Foundation:

nacc.org.uk/downloads/factsheets/TeachersCanHelp.pdf


nacc.org.uk/content/services/parents.asp
Mum of an IBDer since 1999. Daughter diagnosed at age 17 with Crohns/Colitis. This disease s*cks!!

Post Edited (MaryS) : 7/28/2010 9:08:01 AM (GMT-6)


vixen
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Date Joined Jan 2010
Total Posts : 794
   Posted 7/28/2010 2:09 PM (GMT -7)   
 
I would also say that the NACC site is a good site for information, took a while for me to navigate around the pages but all the info is there(some very good information sheets that can be printed out informing school of the condition, how the school can help, problems the child may have etc)It also runs local support groups and there are people there at the end of a phone if they just want to chat. Also the cicra sit which is specifically more geared to children and their families and as already mentioned, dragonpack ibders.
 
My son's consultant actively encouraged me to research online and to join NACC(done both :) )and although initially it is scary I think that it is more to do with the shock of the diagnosis and you believe that your child no longer has a life. There was a fair few nights where I sat and cried. but now, 8 months down the line I am better educated (thanks everyone wink ) son is still the same boy that he was and things have somewhat settled into a routine. Yes he has the medication, blood tests, hospital visits, and sometimes a day in bed cause he really isn't feeling too good but by in large life goes on.
 

milkthistle
New Member


Date Joined Jul 2010
Total Posts : 11
   Posted 7/28/2010 10:59 PM (GMT -7)   
In Nz we have one of the highest rates of Crohns in the world. Substantial numbers of of these are children.

MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 7/29/2010 12:42 PM (GMT -7)   
My daughter was diagnosed with Crohn's at age 9 also...just last year.  She is doing well now, but of course not perfect. Life does go on, and she does normal things... mild anemia is a continuing issue and her stomach is still sensitive to several foods, but all in all life is good. I'd be happy to communicate with your friend if you think it would help.


  • Sunaddict
    Regular Member


    Date Joined Jun 2009
    Total Posts : 354
       Posted 7/29/2010 12:56 PM (GMT -7)   
    I'm so sorry to hear about this. However look at it on the bright side. I was 9 when I started getting all the symptoms. Ending up in the hospital once or twice a year. They'd always send me home saying it was just a stomach flue, one year we even had a doctor tell my parents that I was faking to get out of school. So all of those years I was going undiagnosed with no treatment. Finally at age 18 I was diagnosed with crohn's, at this point it was so spread out I have it in my colon, stomach and small bowel. If it would have been treated at age 9, my crohn's would most likely be in remission or not as bad of a case that I do have now.
    Also another big factor was I had to start off with 10 pills day, it's very hard to remember to take them when they haven't been a pat of your routine most of your life, maybe because the child is 9, they'll have a better chance of adapting.
    Good luck that that family!! all the best
    Tracy from montreal. Dx with Cd 7 years ago but un-Dx for 10 years. Meds currently taking;Imuran (1 and half tab daily)Humira (bi-weekly) pentasa, been on prent 4 times but horrible side effects doc wont use this on me anymore. Humira has put my CD into remission, after using remicade for a year and half which caused remi induced arthritis. I am currently (most days) arthritis free. Currently dealing with endometriosis.

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