10 year old son with cutaneous crohns

[ahocevar]

My son presented with genital swelling in August 2015. Scrotum swollen and shaft of his penis swollen. We saw urologists, rheumatology, gastroenterology, and dermatology over several months. In October 2015 he started with right lower lip swelling. December 2015 we did a lip biopsy which confirmed granuloma tissue and he was diagnosed with cutaneous (skin) crohns. He was started on prednisone and flagyl. Prednisone helped with the lip swelling with a slow taper but did nothing for the genital swelling. January of this year he had a EGD/Colonoscopy and all was clear. Dermatologist presented my son's case at a conference and it was suggested by all there that humira or remicade was the drug of choice for him. We needed something to reduce the swelling in the genital area. I was hesistant. We chose to go with the remicade. He has received only two doses and did well. No relief yet in the swelling. Otherwise, my son is healthy. Just wondering if anyone has any similar experiences. And how their child has been doing on remicade.

 

[smt]

This is a case from India, wherein the patient had cutaneous Crohn's Disease along with GI Crohn's Disease:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2763745/

Your son seems to have only cutaneous manifestations. But lips are a part of the GI tract, and hence, I would think that the GI tract (only lips) has been affected as well.

 

[my little penguin]

Big hugs
We have a parents group found here
http://www.crohnsforum.com/forumdisplay.php?f=49

My son is 12 and was dx at age 7.
He was on remicade at age 8 for 8 months until he had two mild allergic reactions
He was then switched to humira
He has been on humira for the past 4 years.

He does not have cutaneous crohns
But does have sweets syndrome which is associated with crohns and causes lesions on his skin


Remicade took every bit of 7 -8 weeks ( 3 plus infusions ) to work for Ds at the time
Humira took longer 4-5 months to work

Hope things improve quickly for your kiddo


Tagging
Clash
Tesscom
Jmrogers
Crohnsinct
Maya142
Farmwife

 

[Maya142]

Hi and welcome! Like MLP said, check out the parent's section. There are many parents there with kids on Remicade. My daughter started on Remicade and Methotrexate when she was diagnosed with Crohn's. She did very well on it and about 8 months later, her scopes looked MUCH better - all the inflammation in her colon was gone and there was only mild inflammation in her terminal ileum.

It did take her a while to respond to Remicade though. She saw an improvement after 2 infusions but really did not get much better till after her 4th infusion. We also did need to increase the dose and the frequency of Remicade. So don't give up hope yet!

We have no experience with skin manifestations of Crohn's. You could try searching the forum and seeing if you can find any more info on it - I know I have seen a couple cases mentioned on here.

I really hope Remicade helps him SOON.

 

[David]

Welcome to the community. I'm so sorry to hear about what your son is going through. I can't imagine how hard that is

Was the diagnosis of Crohn's based solely on the presence of granulomas? Do you by chance have a copy of the pathology report you can post?