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[Devynnsmom]

Hi, my name is Samantha. My 10 year old daughter was *unofficialy* diagnosed with IBD in Dec 2009 when she was 8 years old. She has been on Pentasa ASA ever since. We lost my Mom in July 2011 and she has been having problems ever since. Her dr upped her Pentasa to 4 - 500mg pills daily (2 in the morning, 1 after school, 1 before bed). Saturday (Jan 7th) I took her swimming, and about an hour after coming home she told me her feet felt funny. She took her socks off and immediately panicked. The skin on her toes was loose and kind of hanging. It looked almost like a blister, but there was air instead of liquid. Within a few hours, the skin started coming off the underside of her toes. By Sun night, the skin was off of 3 toes on each foot. We went to our family dr who said it looked like a contact allergy, and gave her HydroVal cream to use 2x daily. I posted some pics on Facebook and a friend with IBD told me that it looks like something that has happened to her, and is Crohns related. I called her GI and they are in the process of booking her for another upper and lower scope ASAP. I am hoping to talk to people and gain more knowledge about this disease. Devynn has 3 siblings, 2 sisters and 1 brother. She is the youngest.

 

[chrisnsteph1022]

So sorry to hear about your daughter's diagnosis. It's so hard to see a little one go through this. I've never heard of a complication that involves skin falling off. The closest thing I can think of is pyoderma gangrenosum, which is open sores. Those go really deep, though, and aren't just skin-deep. I hope you get it figured out soon!

 

[Angrybird]

Hi Samantha and welcome to the forum. I have not heard of this exact skin problem either but it is not unusual for the skin to be 'affected' if the crohns is acting up. Apart from this what other symptoms does Devynn have at the moment? Have you been told on when you would hear about appt dates for the tests? I would say if you have heard nothing by Monday to chase this. Also have a look at our parents of kids w/IBD sub-forum if you haven't already as you will find a lot of people in the same situation as you are and can really relate to the worries you have to deal with being the parent of a poorly kiddie. Sending lots of hugs and support your way :hug:

 

[Devynnsmom]

Thank you Stephanie, I hope so too.

 

[Devynnsmom]

Hi Angrybird,
She has pains in her ankles, a very loud belly, and pain in her abdomen that comes and goes right now. The pain is mild, not at all like when she has a bad flare up. They said I should get a call about an appt by the end of the week, and they will book us in ASAP which she said will be by the end of the month. I willl def call them if I don't hear from them by Fri. I just found the parents of kids link and have been reading around in there a bit. Thank you for the welcome, and the hugs and support
OT- how do I add a pic to my name like everyone else has?

 

[Devynnsmom]

testing

 

[Angrybird]

I hope I am wrong but but those symptoms sound like there is definetly something going on. Let us know how you get on with the appts.

Picture: First find the pic you would like to add, I think it has to be fairly small in resolution size and perhaps have it easily accessible on your desktops perhaps. Then go to the User CP tab at the top of the forum, then scroll down on the left hand side and there will be an 'edit avatar' option, you then get the option to browse for one to add which you click on and then find the one you have ready to go. I think the rest of the buttons then tell you what do to. I hope this helps, I can't remember it all exactly - I had to have my hubby help me

 

[Angrybird]

Never mind, I see you have sorted it

 

[Devynnsmom]

Thank you, I figured it out
I can't find the link now to the parents of children with IBD, can you please link me or tell me how to find it. I found it once, but have no clue how.

 

[Angrybird]

See if this works:

http://www.crohnsforum.com/forumdisplay.php?f=49

 

[Devynnsmom]

It did, thank you very much.

 

[seaofdreams]

Welcome Samantha To be honest, I've never hear of skin issues exactly like that so your doctor was probably on the money with an allergy diagnosis but her other symptoms are definitely Crohn's-y. I hope the scopes lead to more solid diagnosis and hopeful Devynn can get on some medication to help settle everything down. Very adorable name, I must add!

 

[Devynnsmom]

Thank you Nicci Our family dr thought it was an allergic reaction, but when I spoke to her GI she said it is def a Crohn's symptom. I didn't even think of it being Crohn's, but a friend who has Crohn's looked at her pics and told me to call my GI and tell them right away. I just want my baby to be better. I hate seeing her hurting. Her toes looked a bit better this morning, but when she came home from school they looked worse. I guess her feet were sweaty all day

 

[Gabismommy]

I'm so sorry to hear about this. I hope things get better. Things must be terribly stressful. Good luck and try to keep your head up!

 

[Devynnsmom]

Thank you very much. I just want her to feel well. I hate seeing her sick and in pain all the time.

 

[Gabismommy]

I'm sure you do hun. It's gonna take some time but it WILL happen. I hope sooner rarer than later. Stay strong, you're doing great! It's wonderful to see a parent that cares. Not enough of them do these days. The parents on this web site are great and I hope it provides support and strength for you.

 

[Devynnsmom]

Thank you, it seems like a great place for support and information.