Crohn's Disease Forum » Your Story » My 10 Year Old Has Cutaneous Crohn's

10-05-2014, 09:19 PM   #1
Join Date: Oct 2014
Location: Portland, Michigan
My 10 Year Old Has Cutaneous Crohn's

Let me first start of by saying how happy I am to find this forum! I've been searching the web forever trying to find someone that is going thru the same or similar thing with their child. I just stumbled upon this one tonight!

I"ll try to not make this super long!

First of all my username is my daughter. She has been thru so much it amazes me how happy and funny and sweet she is thru the whole thing! She is 10 years old and in the fifth grade. She started showing symptoms of Cutaneous Crohn's when she was 7 years old. We just got a diagnosis this August. It's been a long 3 years! So her first symptom was a bump that appeared on her butt cheek. It started off small and stayed that way for a few days. Then all the sudden it got to be about 3 inches big. Took her into ER because she was in a lot of pain. They drained it and cultured it to check it for MRSA. She felt instant relief from the pressure. The sore to this day has not healed. Throughout the years she ended up having about 6 total that would come and go. Some got pretty large and would require trips to the ER to have them drained. We went to doctor to doctor to doctor for 2 years. I've heard everything from bad hygiene (I was really pissed) to Hidradenitis Suppurativa.

Last September we were at University of Michigan Motts Childrens Hospital at a pediatric gynecologist appointment. She wasn't feeling good. She ended up having a seizure (she gets them too) in the waiting room. We get that over and get back in the room and the doctors takes one look at her bum and vaginal area (lesions there too) and sends us to the emergency room. She had a high fever so they admitted her and did surgery the next morning. We were in there for a week. They kept testing her for Crohn's disease. I kept getting upset because I kept telling them she has no intestinal issues. No one ever told me there were different kinds. So the tests didn't make them too sure Crohn's was the answer. For about 6 months they kept her on all different kinds of meds. A lot of antibiotics! I also forgot to mention how even when her lesions are small she has a lot of drainage that comes out of them. Things were so bad that she couldnt even sit down. She didn't ride a bike for 3 summers. Sitting in school was so painful to her. It's changes the way she walks. Before diagnosis and treatment I was pushing her in a wheel chair where ever I could. It was heartbreaking! She's lost a lot of her carefree childhood. So she had another surgery and more biopsy's in July with a definate yes to Cutaneous Crohn's. They say it's really rare for a 7 year old to devolop Cutaneous Crohn's with no other Crohn's symptoms.

We have had probably 4 or 5 treatments of Remicade. She was crying days before her first treatment because of the IV. Now she is excited when it's treatment days because they keep making her feel better! I'm so relieved that the medication is working! I was so depressed about this. It breaks your heart to see your child suffer.

She also suffers Adrenal Hyperplasia. We have to drive down to Ann Arbor once a month to get a injection of Lupron to help with her hormones. Because of this condition she started puberty at age 5.

She also gets seizures. She hasn't had one since the waiting room. They say that one was probably because of the fever. The say she will hopefully outgrow them.

Thanks for reading! I'm hoping to learn lots here!!
10-05-2014, 09:26 PM   #2
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi and welcome. Your little one has been through so much.

We have a fantastic group of parents here.

Sending both of you my support. I'm glad the Remicade is working.
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10-06-2014, 08:25 PM   #3
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Join Date: Apr 2012
Location: Michigan

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Welcome to the forum from another Michigan family.

First let me start by saying that we have a wonderful Parents group
Please come join us anytime.

Wow, what a little hero you have. I have one of my own that's 5.
These kids amaze me at how much they can take.
I'm always so proud of my dd.
But I wouldn't hastate to trade places with her if she could live without pain and discomfort.

I'm so glad she's doing better. I pray it continues.
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,
10-06-2014, 10:05 PM   #4
my little penguin
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Join Date: Apr 2012

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Hugs and welcome.
Vaginal lesions /mouth ulcers can also be a sign of bechets .
Which mimics crohn's and is very rare as well.
Sorry you had to join us
But glad you found us .
The parents section is great .
My DS is 10.
He was dx at age 7.
DS - -Crohn's -Stelara -mtx
10-07-2014, 12:35 PM   #5
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Join Date: Dec 2013
Location: Maine

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I'm glad you found the forum. Your little girl really is a hero.
"It does not do to dwell on dreams and forget to live."
10-07-2014, 01:10 PM   #6
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Join Date: Sep 2014

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Oy. So sorry. Best wishes for a continued recovery

Just to clarify a couple of clinical points.

1) Cutaneous crohn's is indeed very rare especially in children- HOWEVER, in the rare instances it does happen it almost always PRECEDES the GI symptoms, so the fact that she was not having and GI issues prior to the skin presenation would actually be expected.

2) My Little Penguin- VERY astute thinking- Bechet's can indeed mimic crohns, and genital/skin lesions are classic for Bechet's. Bechet's is a vasculitis- inflammation of blood vessels- often in the skin, eyes, genitals, but can also cause GI symptoms as well.

3) Little hero... I'm not trying to be a new cook in the kitchen, but I'm assuming they have confirmed her adrenal hyperplasia is congenital? Seconday causes in children are also very rare, but with the history of seizures, I would always make sure to rule out secondary causes.

Either way, I'm glad to hear she has improved and at least you have a diagnosis. Please do keep an eye out for GI issues- as mentioned before, in kids the skin issues will often precede the GI ones.

It sounds like she is in very good hands both in the medical world and at home.

Best wishes.....

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