Topic Options
#10064 - 11/24/03 06:46 AM Being cared for
Brixton Offline
Member

Registered: 11/22/03
Posts: 9
Loc: Minnesota
Hello,
I am new to this website and forum, but I wanted to sign up so that I could say hi to all the people-- wow!-- and maybe get advice or offer feedback when I could.

One thing I wanted to say to parents taking care of kids with this, is please be so very careful to act like it is the most normal thing in the world. I mean, I know it isn't, but there was something that I still think sticks with me about my mom dragging me to dermatologists all the time, explaining it to people who never asked, and having to get all the special products and being prodded into the whole oils/lotions/etc routines.

I really wonder how (physically) uncomfortable I would have felt if no one was pointing out to me that it was unusual. I don't remember feeling so dry as a kid. But my parents sure were telling me I was.

I have a son now, who at 11 has the "goosebumpy" skin. I never point it out. When he says he feels dry, I just say "Use some lotion" like I would to anyone else. He does not have some of the other sypmtoms I had when I was a kid (which I do not have anymore, thick scales on my scalp and a constant sore behind my ear) so perhaps his skin will never become as bad as mine is now (I did not have the really flakey skin until my teens). However, I am hoping that if he does develop more than the bumpy skin, he will, as an adult, think "Yeah I have dry skin, so what" and not have the self-consciousness/self-esteem issues I will probably have forever.

My tuppence, thanks for reading.

Top
#10065 - 11/24/03 11:49 AM Re: Being cared for
Angel Offline
Member

Registered: 09/17/02
Posts: 94
Loc: Ontario, Canada
Thank you so much for your post. It really hit home. I do all of the things your parents did. My daughter is only two, but she is starting to understand. I am definitely going to make a conscious effort to stop. I even have a bad habit of picking off some of the large bits of skin that are dangling on her feet. She has actually started to tell me "Don't pick, Mommy". Thanks, again.

Angel

Top
#10066 - 11/24/03 04:39 PM Re: Being cared for
Beth Engerman Offline
Member

Registered: 08/23/00
Posts: 106
Loc: Indianapolis, IN USA
That was such good advice. I will say that my parents made me feel as normal as possible. I was really lucky. It took going to middle school with kids from 3 different schools to realize how other people saw me. By that time though I was old enough to understand and deal with it. Plus, I had a very large and loving support system with my family in and out of school.

Also, I think that is so funny about picking your daughter's skin. I used to hate that so much. I remember telling my mom the same thing. I loved for her to comb the scales out of my scalp though as well as having my ears cleaned out. They were special things that only I could do with my mom and I loved it.
_________________________
"Our greatest fear is not that we are inadequte; but that we are powerful beyond all measure." Nelson Mandela

Top
#10067 - 11/24/03 06:40 PM Re: Being cared for
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Brixton,

You're right on. Kids should be treated as if they're perfectly normal and not have parents go on and on about how dry they are, etc and so forth. After all, for that child, having ichthyosis is normal!

Don't take it to the extreme to where the child can't admikt that they're having a bad day in regards to their skin, but I must wholeheartedly agree about going over the entire routine with a stranger on the street.

Your child needs to know that s/he does not need to answer every stranger's question and recite their medical history and care routine whenever asked. Your child deserves personal privacy as much as you do. Feel free to say something like "Thanks for your concern, but we're busy right now. Goodbye" and then walk away. If you want, carry a business card with the web address of this site or FIRST's on it, and hand it to folks so they can go look up info themselves.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

Top
#10068 - 11/26/03 12:56 AM Re: Being cared for
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi guys...

I absolutely loved my mother cleaning my ears, and especially combing the skin out of my hair...It was so relaxing, I would almost fall asleep...And when my scalp was itchy, I would plead for mum to stop what she was doing, and comb the skin out, just to get that scratching the itchy sensation...ABSOLUTE HEAVEN...

I also hated my mother following me around in public, pulling me up, so she could "get that big bit of skin that was hanging out of my scalp, or from my face or ears"...I would always tell her off, it was embarrasing, just like kids hate their mum blowing their nose or wiping their mouths...

Top
#10069 - 11/26/03 09:27 PM Re: Being cared for
Annamarie Offline
Member

Registered: 07/22/03
Posts: 64
Loc: La Mesa, CA.
Even though my son Ryan, requires much more attention to his skin than most, everything is done as part of a regular routine. He now even does his tube feeding without my prompting him at all.

Please have that sore behind your ear checked out. It probably isn't anything, but Ryan had something on his scalp that looked like a sore, and would bleed, it turned out to be skin cancer. It was removed, and so far he's fine.

Top
#10070 - 11/27/03 03:40 AM Re: Being cared for
Brixton Offline
Member

Registered: 11/22/03
Posts: 9
Loc: Minnesota
Annamarie,
Thank you for your concern, but like I said, it was something I had as a child. Finally when I was about 6 or 7, a dermatologist gave us something for it, and it went away forever.
Brixton

Top

Moderator:  marcsmom, Sideshow_bob 

Copyright 2012 Ichthyosis Information