06-14-2018, 09:51 AM   #1
my little penguin
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Changing crohns

We know Crohns changes in kids as they grow

Did your kids symptoms change as they went through puberty?
Did Crohns get harder to control woth puberty ?

Ds is 14.5 and things are changing in the Crohns front
DS - -Crohn's -Stelara -mtx
06-14-2018, 11:46 AM   #2
Jelly loves Peanut butter
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Sorry to hear this MLP! Hope your son is feeling better soon!

Mom of Lincoln (age 11)

Dx. Crohn's 9/2016 (age 9)
Dx. Juvenile Spondyloarthritis 9/2017 (age 10)

6-Mp 9/2016-10/2017
Remicade started 9/2017
MTX started 9/2017
06-14-2018, 01:15 PM   #3
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My kiddo was only diagnosed at 16, so no idea on the Crohn's front.

But I know from a JIA perspective, that things do change during puberty/the teenage years. Sometimes kids go into remission (sometimes even drug free remission vs. medicated remission) and other times the disease gets much worse .

That did happen with M - from 12-14 her arthritis was moderate, but after that her arthritis became severe.
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
06-14-2018, 06:34 PM   #4
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A does not have Crohn's...but I remember very clearly what her Immunologist told us when discussing her future. She said puberty would be very telling. Either her symptoms would improve and that'd be a good sign for the future. Or she'd get worse and we'd know that her road will be a difficult one. She's 13 now and her symptoms are definitely changing. Her asthma is more problematic, she has new leg symptoms (her legs have never been an issue) and we've seen some other troubling things that are new as well. Puberty seems to be exceptionally rough for our kids.
A is 13

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies, Intestinal Lymphangiectasia

Treatment: Hizentra, Advair, Zyrtec, Cellcept
06-14-2018, 07:35 PM   #5
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This is happening with Grace and her eds.
She's starting towards puberty (I was an earlier bloomers as well) and issues are creeping up.
We were warned early on it might happen.
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
06-14-2018, 10:18 PM   #6
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We're not there yet. C is 9, and H is 7. But I was wondering about this the other day. I was hoping the body would be so busy developing.... that Crohn's might be distracted. Maybe that explains why it's more prevalent between 15-30 years old.
I pulled that out of the air, btw.
What is your ds going through?
06-18-2018, 09:37 AM   #7
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Location: Ontario

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S was in the mid of puberty when diagnosed so I can't say if it 'changed' other than it may have been a factor in 'starting'.

But, my friend's daughter was diagnosed at 10 years old. At approx. 12-13, she did flare fairly severely with difficulty bringing it under control (ie 2-3 week hospital stay, abscess, possible surgery, etc.). In the end, she did not need surgery. She'd been on only metho up (and steroids, when necessary) until that point. Once the abscess was dealt with, remicade was added and she's been fine since (approx. 4 years).

If puberty was a factor, in her case, it seemed that what had been working before, needed to change but then she stabilized again.

(And, I'm so sorry he's having problems... I hope a new plan/change in treatment will help quickly.)
Tess, mom to S
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
06-26-2018, 01:00 PM   #8
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Location: Chicago, Illinois

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I was diagnosed with Crohn's at age 10 and it was pretty severe almost to the point where I had to be hospitalized. I got a colonoscopy, and afterwards, they put me on prednisone and pentasa. I was able to taper off the prednisone successfully and be on the pentasa for almost six years without any symptoms at all. Not until my 16th birthday did my symptoms reappear, but not nearly as bad as the first time. I am now finally getting it back under control again, but I do believe puberty does play a role in how it can affect Crohns.

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