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#22973 - 10/22/08 03:33 PM Sarah's October Topic...EHK etiquette
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
I've been thinking about this one for some time now. As we all grow up and then teach our kids we learn about etiquette or how to act and behave in public. The basics can be a little different for kids with EHK. Here are some of the things that my Mum taught me along with the usual "don't pick your nose", "cover your mouth when coughing" and "don't speak with food in your mouth".

* Don't scratch or pick in public
* Check for flakes and brush off chair when standing
* If changing at a friend's house to go swimming use a towel on the floor to catch flakes.
* Don't respond to rude with rude
* Check your nose for flakes, others might think it's a booger
* After a sleep over, strip the bed, collect the flakes and flush them as your host isn't used to it.

What do you think of this? Some might feel that it is setting the child apart but my Mum taught me this stuff along with the rest so it seemed normal to me.

Do you have anything to add?
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#22982 - 10/23/08 02:00 AM Re: Sarah's October Topic...EHK etiquette [Re: Sarah Helen]
Evan's Mommy Offline
Member

Registered: 08/11/05
Posts: 165
Loc: Portland, ME 04106
Hmmm...

We haven't traversed this terrain yet b/c Evan is only 3. We have been very proactive about EHK education in Evan's circles. We sent a letter to all of other families in the preschool, talking about EHK and that it is not contagious and how to answer their children's questions about Evan's skin. We did talk with the teachers and the school director about how his skin will flake and how it will worsen through winter.

We hope that Evan developes good self-confidence and learns to take EHK in stride. So far, so good.

Other topic ideas:
Exfoliating through the ages
Best doctor story/worst doctor story
Victories in EHK, example: Evan is climbing, jumping and taking a gym class with his peers or I finally found a cream that I like.

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#23031 - 10/27/08 06:01 PM Re: Sarah's October Topic...EHK etiquette [Re: Evan's Mommy]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
This hasn't been a big issue for us because none of the family has flaking issues. One thing we do try to do is bathe in the morning to reduce the keratin smell. If at other people's homes, bathing happens around laundry and dish and non-affected bathing schedules so we don't suck down all the hot water. Fortunately, this is usually only at grandparent houses.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#23041 - 10/28/08 05:07 PM Re: Sarah's October Topic...EHK etiquette [Re: Hearsay]
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
That's a really good point Hearsay! If you take longer baths/showers etc then be aware of your host's hot water needs.

BTW - how is baby Oliver doing?
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#23045 - 10/28/08 10:00 PM Re: Sarah's October Topic...EHK etiquette [Re: Sarah Helen]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
He's doing great. We don't have health insurance for the 3 weeks that Brian started the new job - enrollment is Nov 1st - so I'm not going to the doctor unless it is necessary. No point in paying for COBRA if I don't have to! So his 2 month appointment will be after Nov 1st. I'm guesstimating his weight is around 7.5 pounds at 7 weeks old. He eats like a pig - all day long, and what I'm producing isn't enough to sate him, so I'm throwing in a bottle or two during the day. He's a really easy baby, though. None of the issues his brothers had. Nathan was chronically sick and kept having respiratory distress, and Elliot had hearing problems from fluid in his middle ears. He still has tubes and constant infections.

New pics:
http://s5.photobucket.com/albums/y170/12hearsay12/

password is jennifer
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#23052 - 10/29/08 02:11 PM Re: Sarah's October Topic...EHK etiquette [Re: Hearsay]
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Sigh... you're family is too georgous!
Thanks...
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#23055 - 10/29/08 04:57 PM Re: Sarah's October Topic...EHK etiquette [Re: Hearsay]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
Amazing pics! You have a beautiful bunch! But can I show my ignorance and ask how RIE presents as your little one's skin looks great?

Jx

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#23056 - 10/29/08 05:51 PM Re: Sarah's October Topic...EHK etiquette [Re: BritMum]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
The skin is very fragile when wet or forced. Elliot tripped and abraded off his whole chin yesterday. Nathan has fallen on his knees about 6 times since school started and torn his skin all the way through. Their hands and feet crack and bleed when the put pressure on them, so they can't really run and jump and most fine motor kills like using a pencil are harder because of the force needed to write. Also, we keep it very well maintained.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#23062 - 10/30/08 06:45 AM Re: Sarah's October Topic...EHK etiquette [Re: Sarah Helen]
may3332 Offline
Member

Registered: 08/01/02
Posts: 15
Loc: tacoma, WA
I like your post. It is so funny to me becuase I do not have EHK but I have been teaching my daughter most of these things. It is refreshing to know that its okay to tell her this.

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#23121 - 11/03/08 12:16 PM Re: Sarah's October Topic...EHK etiquette [Re: may3332]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I had my own "sleeping bag" for sleepovers, made from a sheet folded in half and sewn down the side. My friends knew that I had "special skin" and I simply said that this was to make sure that I didn't get lotion all over their sheets. The reality is that it captured any shedding in a very discreet fashion!

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