Teen resources/support

[cassimw]

My newly diagnosed (nearly) 15 year old asked me today how many other kids at her high school might have Crohn's. I told her I'm sure a number of them do, but I honestly don't know the statistics. So the first question I have is - does anyone know where I can find some stats? I don't want the total number of people affected, I can find that - I want to know the percentage of teens affected.

Also, she's thinking of forming a club/support group at her HS. Right now she doesn't know anyone else with Crohn's and is feeling rather isolated and would like to connect with other teens with Crohn's. Does anyone know of a good online support group/website geared toward teens?

Thanks!

 

[Clash]

There is a teen suport sub group here on this forum here's a link

http://www.crohnsforum.com/forumdisplay.php?f=67

CCFA also has a group I believe as well as camps that range in age from kids to teens and even allow for the teens to come back as camp counselors. A lot of kids here go.

The local hospitals and children's hospitals have support groups for many things. Ours has a CCFA supported teen group that meets fairly regularly.

 

[crohnsinct]

There are also a few online bloggers and twitter people. Inflamed and Untamed and Dan Sharp come to mind. They are not teens anymore but they were young when dx'd and have a large teen following and offer good support advice etc.

IDK a lot about the percentages but I have read the teen years are the second highest age group for diagnosis.

Most hospitals have support groups.

In our small church of 150 families there was a girl dx'd 3 months before my daughter. Then 4 years later a boy was dx'd 4 months before my second daughter. When my daughter was on EEN and drinking her formula in the cafeteria a girl asked her if she had Crohn's because she had doe the same therapy. I think there are a lot more than we realize.

 

[my little penguin]

If you contact your local ccfa they can share member info of other parents of teens ( provided the parents are ok with that .)
That was how Ds met another child close to his age when he was dx at age 7.
He was the only one in his entire elementary school .

 

[my little penguin]

Over the past few decades, the incidence of IBD (Crohn disease in particular) has greatly increased. The age-specific rate in North America for children aged 10-19 years is estimated to be approximately 3.5 cases per 100,000 population. The only prospective pediatric epidemiologic study from North America showed that the rate of Crohn disease in Wisconsin was 4.56 cases per 100,000 population, or twice that of UC.[14]

And

About 30% of patients whose disease is diagnosed when they are younger than 20 years have a positive family history. The percentage decreases to 18% for patients whose disease is diagnosed at age 20-39 years and to 13% after age 40 years.

The first and best-described disease-associated mutations for Crohn disease were found on the NOD2/CARD15 gene, which is found on chromosome 16 and regulates intracellular immune response to bacterial products.[12] Stricturing disease necessitating early surgery, ileal involvement, and younger age at diagnosis are phenotypic characteristics that have been associated with recognized CARD15 mutations. Approximately 25% of white children have a CARD15 mutation, compared with only 2% of black and Hispanic children.[13]

Additional genes associated with Crohn disease have been discovered. An association between mutations in the IL23R gene and inflammatory bowel disease (IBD) has been confirmed, suggesting a major protective effect on susceptibility to Crohn disease. A predisposition to Crohn disease, specifically with ileal involvement, has been associated with a single-nucleotide polymorphism (SNP) in the ATG16L1 gene, which is involved in autophagocytosis, an essential component of the innate immune response targeted towards pathogen-derived proteins.

From
http://emedicine.medscape.com/article/928288-overview#a4

 

[my little penguin]

Affected Populations

Crohn’s disease affects males and females in equal numbers. The disorder is most common among Caucasians. Individuals of Jewish ancestry are affected approximately three to six times more frequently than others. Approximately one in 800 children in the United States have Crohn’s disease, and a total of approximately 400,000 individuals in the United States have the disorder. Approximately 25 percent of individuals with Crohn’s disease are likely to have a relative with either Crohn’s disease or ulcerative colitis.

Crohn’s disease typically affects individuals between the ages of 15 to 55 years. Most cases are diagnosed before 30 years of age. However, the disorder may also occur in young children and the elderly.

From
https://rarediseases.org/rare-diseases/crohns-disease/

 

[my little penguin]

So a small percentage of the population
Depending on the size of her school there may be one or two other kids

Unless they defy statistics ( like Ds he was dx at age 7 )
So he wouldn't be counted in the 1 in 800 numbers

 

[Maya142]

Some Children's hospitals have support groups - ours does. That might be another good way to meet teens. My younger daughter has one friend from school with Crohn's but my older daughter (in college) has met 6 kids with either Crohn's or UC in various classes/extracurriculars.

 

[cassimw]

There is a teen suport sub group here on this forum here's a link

http://www.crohnsforum.com/forumdisplay.php?f=67

CCFA also has a group I believe as well as camps that range in age from kids to teens and even allow for the teens to come back as camp counselors. A lot of kids here go.

The local hospitals and children's hospitals have support groups for many things. Ours has a CCFA supported teen group that meets fairly regularly.

I thought there was a teen support group here, but for some reason I couldn't find it -- thanks for the link! It doesn't seem like it's frequented a whole lot though :-( Plus, and this probably makes me a bad mom, but I'm really hoping that she won't go and read some of the more scary things that can happen with CD. Not that I would ever lie to her, but info overload at the beginning could be overwhelming.

We have reached our to our local CCFA chapter and plan on going to the next meeting, but they only meet once every other month. I'm not sure what to expect or how many kids there will be her age. I hope it helps. They're actually having an info. meeting about that camp Oasis, so maybe that would be helpful too.

 

[cassimw]

There are also a few online bloggers and twitter people. Inflamed and Untamed and Dan Sharp come to mind. They are not teens anymore but they were young when dx'd and have a large teen following and offer good support advice etc.

IDK a lot about the percentages but I have read the teen years are the second highest age group for diagnosis.

Most hospitals have support groups.

In our small church of 150 families there was a girl dx'd 3 months before my daughter. Then 4 years later a boy was dx'd 4 months before my second daughter. When my daughter was on EEN and drinking her formula in the cafeteria a girl asked her if she had Crohn's because she had doe the same therapy. I think there are a lot more than we realize.

Thanks for relating your own experience. This is helpful. Just from talking to people, I know of two other girls at my daughter's high school that have CD. I'm sure there are more...

 

[cassimw]

There are also a few online bloggers and twitter people. Inflamed and Untamed and Dan Sharp come to mind. They are not teens anymore but they were young when dx'd and have a large teen following and offer good support advice etc.

IDK a lot about the percentages but I have read the teen years are the second highest age group for diagnosis.

Most hospitals have support groups.

In our small church of 150 families there was a girl dx'd 3 months before my daughter. Then 4 years later a boy was dx'd 4 months before my second daughter. When my daughter was on EEN and drinking her formula in the cafeteria a girl asked her if she had Crohn's because she had doe the same therapy. I think there are a lot more than we realize.

Thanks, this is helpful and gives me some idea of how prevalent CD is. Thanks for the blogs too - I'm going to check that out.

 

[cassimw]

So a small percentage of the population
Depending on the size of her school there may be one or two other kids

Unless they defy statistics ( like Ds he was dx at age 7 )
So he wouldn't be counted in the 1 in 800 numbers

3.5 in 100,000 is such a different number than 1 in 800! Thanks for doing this research - I hadn't been able to find these sorts of stats. 1 in 800 sounds more right to me, since I already know of 2 just in my daughter's HS (although it's big - 2,700 kids) and there have to be more, right?

That's tough about your Ds who was the only one in the whole school!

 

[cassimw]

Some Children's hospitals have support groups - ours does. That might be another good way to meet teens. My younger daughter has one friend from school with Crohn's but my older daughter (in college) has met 6 kids with either Crohn's or UC in various classes/extracurriculars.

Wow! I can't believe your oldest has met 6 others! This is very useful info. Thanks! I tried looking at the local children's hospital website for more info on support groups, but I think I'll try harder.

 

[Clash]

Same as Maya142 with my older non IBD daughter. She has met at least 8 or 9 people with CD but like maya's older daughter she is at University and there are 35,000 students.

Both kids went to a college prep military school so it was small. There was one kid, a year older than my daughter with CD, he'd graduated by the time C was dxed. C had a friend that had digestive issues that required an ng tube and hospitalization but it wasn't CD.

At the local public HS there were 2 kids that had CD around my son's age.

He's at a small college now and so far there is one kid he has met with UC.

 

[Mehita]

Not a solid statistic, but in our high school of 1300, we know of 4 kids plus DS.

I believe there are a couple of Facebook (uncool, I know!) groups for teens with IBD. You'll want to peek first though. One is kids only with a lot of misinformation, while the other has a couple of adults who help monitor it.

 

[Cross-stitch gal]

Here's something I found. Looks like it might have something for both teens and parents. Seems to have some good info!

http://www.justlikemeibd.org

 

[malorymug]

Our hospital has monthly meetings, kids in the playroom socializing with air hockey and parents in another room. We had never gone because we thought CD was on the sidelines. But looks like we are going to need to go. I'm looking forward to meeting some folks in the area. My child is still rolling his eyes, I hope I can get him there.

 

[mayas_mom]

I've found a lot of teens with IBD on instagram that my 13 yr old daughter messages with. We know nobody around here with IBD so we've found social media to be the next best thing