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Crohn's Disease Forum » Parents of Kids with IBD » 15 Year old just diagnosed


06-16-2017, 11:20 AM   #1
cdnrose
 
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15 Year old just diagnosed

Hi all,
My son just received his diagnosis yesterday after an MRI last week. His GI was pretty sure it was crohns after a visual look at his bottom but she wanted all the tests to confirm of course.

I also have crohns, was diagnosed about 2 years ago so I am familiar with the process, the meds and such but I was not prepared for the emotional state this would put him in. He is very depressed and I think embarrassed. After living with it for 2 years and having rheumatoid arthritis for 3 years prior to that I guess I just took it as a another bump in the road of life.

He has 2 fistulas (which I've never had) and about 16 cm of inflamed intestines. He is on 2 different types of antibiotics (metronidazole and ciprofloxacin) for 30 days which he will go off of once we get the approval for remicade and methotrexate. He's going for a colonoscopy next week and an MRE not until the end of August but he is on a wait list so hopefully he'll get in sooner.

How have you all managed the emotions of your teen?
06-16-2017, 11:39 AM   #2
my little penguin
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Big hugs
It takes time to grieve a dx and it doesn't happen in a linear fashion either
Kids just want to be normal
Some are go with the flow kids
Others are not

My kiddo was dx at age 7 so he doesn't remember anything really before dx
He is 13 now
A therapist for medically complicated kids is generally recommended since kids sometimes protect their parents from the bad stuff
Your GI sept should have one on staff

Otherwise I know there is a Crohns kids camp in Canada
Similar to camp oasis in the US

Great place for him to hang out and be normal for a bit
Once he is feeling better (next summer )
There is also a teen section on here as well
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06-16-2017, 03:53 PM   #3
Maya142
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It takes time. The first year is rough - it takes a while to get used to all the procedures, meds and even just "being different."

Most kids will have moments of being completely fine and moments of being frustrated/upset/angry/sad. That is normal. It's a process - it will take time for your son to get used to his "new normal" but after a while, he will.

My daughter saw a psychologist who specializes in kids with chronic illnesses. That was a HUGE help. She didn't want to go at first, but her GI insisted. It took a while to get used to it, but now she reminds me to make appointments because she knows it helps her!

Good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
06-17-2017, 11:27 AM   #4
Optimistic
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Psychologist with experience in this area has been life saver. At this age they don't want to go but I think are surprised at how much it helps.
06-17-2017, 08:16 PM   #5
Tubes
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I was 12 when I was diagnosed it was really tough for me and for everyone I knew.Being sick all the time and missing so much school made it hard to keep up with friends.In 94 when I was diagnosed my doctors never mentioned a therapist it was really just a deal with it kinda vibe I tried some teens support groups but they were useless cause while I wanted to talk none of the other kids did.I was in middle school then and my doctors told me after 2 months away from school to standup infront of class and explain what was going on because the last time they saw me I was barely 50lbs now I was 150lb so I did and it went poorly kids were immature as were some of the teachers.

Then when the time came to go to high school I picked a school that few people I knew were going I worried about having 4 more years of kids being jerks and it was the opposite nobody cared and that actually helped me get over with being sick while it wasn't ideal it was okay I had a permanent hall/bathroom and I could leave class without saying a word.I don't think there was anything anyone could have told me that would have made it okay especially at first you kinda just have to experience it get used to it and learn to accept it and there isn't really I time table for acceptance everybody's different heck I know kids that I first met back in 94 when I first got diagnosed that still haven't accepted it and their just miserable people that let their illness defeat them so it's a case by case basis.
06-17-2017, 08:27 PM   #6
kimmidwife
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I am so sorry. It is not easy. My daughter was age 11 when she was diagnosed it took her quite a while to adjust. Like some of the others said an experienced therapist makes a big difference. My daughter saw an art therapist for a year which really helped.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
06-19-2017, 12:43 PM   #7
cdnrose
 
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Thanks for all the replies. We had a couple of talks about it over the weekend and I think he is feeling a bit better about it all. He is tired of being poked and prodded but he doesn't mind missing school at this point

I'll will look into counseling for him but he has been very reluctant in the past with other issues, so I'll play that one by ear.
06-19-2017, 01:06 PM   #8
my little penguin
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Counseling works better when it's family counseling first
So it's not just him with an issue
Since Crohns affects the whole family that is a good starting point
06-19-2017, 01:48 PM   #9
Maya142
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My kiddo really fought going to a therapist. But now she is so glad we insisted on it. The first month or two were rough. It does take time. But we stuck with it and it was a HUGE help.

My daughter was 16 and we gave her a choice - she could have me in the room or not. The first few times, I stayed in the room, but after that she preferred to be alone with the psychologist.
06-26-2017, 12:10 PM   #10
cdnrose
 
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He had his colonoscopy on Friday and he starts his remicade this week (Wednesday). He seems very much ok with things now. I'll keep my eyes and ears on him to really see if it is a show or not but I'm thinking he might be ok after the first initial shock. Like I said, he is used to the life of crohns since I have it so maybe it won't be so bad. Fingers crossed.

I do have a dr appointment set up for him to get a referral to a someone to talk to, just in case.
06-28-2017, 09:01 AM   #11
ajs5153
 
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I was diagnosed at 11. It can be very hard. I grew up with just myself and a single mom. It almost tore us apart. My way of dealing with Crohn's was to act out.

Now at age 30 I have a great relationship with my mom but it took years.
07-01-2017, 11:12 AM   #12
amw2003
 
Join Date: Jun 2017
Location: Deland, Florida
My daughter was diagnosed April 2016 with advanced Crohns of small and large intestine,gastric ulcers,ileocolitis with severe ulceration, perianal disease. She had weighed 60 lbs at age 13 (spent about 10 days in hospital) and some medicine they gave her caused her to lose half her thigh length hair. Since she started Remicade she has had no symptoms other then a lot of anger, calls me names like idiot, tells me to shut up, throws things, has hit me, lies constantly, etc. recently she was able to go approx 3 weeks with no anger but it started again. She was wonderful and a completely different person before this started. She alienated her friends and does not take joy in things she used to love like going to the beach. She was healthy and happt her whole life and I do not know what to do.
07-01-2017, 12:22 PM   #13
Maya142
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She should see a psychologist. Poor kiddo. Some kids have a really hard time dealing with this disease. It is really tough to suddenly have an illness you will have forever, deal with medications, needles, loss of privacy, feeling "different" etc.

Remicade is unlikely to be the cause of her anger.

I would definitely ask your GI for a referral to a psychologist. Usually they will either have one on staff or will know of one that works with kids with chronic illnesses. My daughter did NOT want to go - she really fought it. But her GI insisted.

It took a couple months, but she was a much happier, less anxious kid. You can have the whole family see the psychologist or do a one-on-one approach - whatever works for your kiddo.

As for hair loss, I'd ask her GI about that - it could be malnutrition or a vitamin deficiency.

The other thing you can do is see if she's willing to go to Camp Oasis - the CCFA camp for kids with IBD. Or you could see if your hospital has a support group. It might help her see that she's not alone and LOTS of other kids are dealing with all this too.

Hang in there!!
07-01-2017, 12:41 PM   #14
my little penguin
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Amw2003
Does your dd see a psychologist?
I would ask your gi office .
Remicade does not make people mad
Teenagers and chronic illness are extremely tough
Might start with family counseling
07-01-2017, 12:47 PM   #15
Maya142
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I wanted to ask - is she on steroids? Those are known to cause mood swings, especially when they're on a high dose. My daughter becomes very cranky and tearful on 40 mg Prednisone.

But Remicade really does not do that - it's more likely that she's having trouble coping.
07-01-2017, 12:57 PM   #16
amw2003
 
Join Date: Jun 2017
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She is not on steroids. I have read on other websites by doing a search that there are some people whom have anger issues that are caused by Remicade.
Folic acid/biotin stopped the hair loss. I will look into a counselor that specializes in teens with Crohn's.
07-01-2017, 06:58 PM   #17
DanceMom
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Methotrexate caused hair loss for my daughter. Malnutrition has as well.

Definitely look into summer camps and family retreats for kids with chronic illnesses. Counseling would be a great idea too if she's not resistant to going.
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07-03-2017, 09:09 AM   #18
Optimistic
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She is not on steroids. I have read on other websites by doing a search that there are some people whom have anger issues that are caused by Remicade.
Folic acid/biotin stopped the hair loss. I will look into a counselor that specializes in teens with Crohn's.
Does it seem to correlate with other events? My son is in remission but has frequent labs, tests and scopes because of his treatment plan. I think he pretty much forgets about disease until there is some reminder and then it comes out. It is almost like it is really not "present" and then he has to cope with diagnosis and longevity of it again and again.

I'm sorry. I hope you can find someone for her to talk to and you figure out how to get her to go!
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