Page 1 of 2 1 2 >
Topic Options
#26139 - 04/04/10 04:26 PM Guide for Parents and Caregivers
Sideshow_bob Offline


Member

Registered: 02/10/09
Posts: 61
Loc: US, Midwest
Several of us have put together a guide to answer many of the questions you may have as a first-time caregiver to a child with Ichthyosis. Feel free to print a copy or bookmark the page for quick reference.

Thank you to all of the parents and adults with Ichthyosis who helped put this guide together. Please email me with corrections or additions and we'll continue to revise this guide to keep it current. Thanks so much for all your hard work!

Because the file is large, I had to create a separate web page to load it. Please follow this link to download the guide:

Guide for New Parents and Caregivers
_________________________
6 year old daughter with CIE (non-bullous)and a non-affected infant daughter.

Top
#26335 - 05/09/10 01:16 PM Re: Guide for Parents and Caregivers [Re: Sideshow_bob]
LiloMA Offline
Member

Registered: 05/09/10
Posts: 5
Loc: MA
This is a fantastic, well thought out and caring guide for caring for children with ichthyosis. Our second son, due 7/27 has been diagnosed prenataly with XLI and although my husband is following the "let's deal with it when it comes.". I like to be prepared for all scenerios and value these great tips on staying ahead of the symptoms. Now I just need to replace the humidifier son #1 broke... smile

Top
#26351 - 05/11/10 07:45 AM Re: Guide for Parents and Caregivers [Re: LiloMA]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
Fabulous job!
_________________________
Kim
Mom to Casey born Feb 17/08(?LI/CIE), Sara born Feb 18/06, and Kaitlyn born July 2/03
Casey has been tested positive for a genetic mutation in the ICHTHYIN gene (which is indicative of either LI or CIE)


Top
#26597 - 07/07/10 07:06 AM Re: Guide for Parents and Caregivers [Re: KimNL]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
Absolutely fantastic! Good job, well done by all!

The section about removing lotion from "everything" provide me with a few chuckles as it's so so so so true lol!!

J x

Top
#27433 - 02/25/11 08:43 AM Re: Guide for Parents and Caregivers [Re: Sideshow_bob]
ChristinaG Offline
Member

Registered: 06/12/06
Posts: 66
Loc: Woodland Hills,CA
Wow...I wish I had this 13 years ago! You guys did a great job! It's nice to see someone do something nice, out of the goodness of their heart and not just because they get something back for doing it...Very, very cool ladies!

Top
#27529 - 04/03/11 06:43 AM Re: Guide for Parents and Caregivers [Re: ChristinaG]
melangelmusic Offline
Member

Registered: 08/08/08
Posts: 42
Loc: UK
I've just tried to download this guide but for some reason I can't download it. I don't know if it's my computer that's the problem or not. Would very much so like a copy of this guide.

Melanie


Edited by melangelmusic (04/03/11 06:44 AM)
_________________________
My name is Melanie, I'm 32 years old and am from the UK. I have Bullous Ichthyosis (EHK)and have a baby daughter with Bullous/EHK also. I run the website below;
www.friends-of-ichthyosis.webs.com

Top
#27557 - 04/14/11 08:13 AM Re: Guide for Parents and Caregivers [Re: melangelmusic]
Sideshow_bob Offline


Member

Registered: 02/10/09
Posts: 61
Loc: US, Midwest
Melanie, it's a PDF file. You need Acrobat Reader to open it. Let us know if you still can't open it!
_________________________
6 year old daughter with CIE (non-bullous)and a non-affected infant daughter.

Top
#27622 - 05/12/11 10:09 PM Re: Guide for Parents and Caregivers [Re: Sideshow_bob]
Tatergirl Offline
New member

Registered: 05/12/11
Posts: 4
Loc: San Francisco
I too can't view the guide....I have Adobe.....The link just goes to a gray screen with nothing to open.

Would love to have this!
_________________________
May '15: baby boy
Jan '13: un-affected 2yr old daughter
March '11: Sweet baby girl, collodion baby/Lamellar ichythosis genetically confirmed through Yale study
March '09: un-affected 5yr old son

Top
#27625 - 05/13/11 09:05 AM Re: Guide for Parents and Caregivers [Re: Tatergirl]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
It worked for me. Oh...by the way, they FIRST office has moved and their phone number is different now. You'll have to correct it in the guide. The new number is 215-997-9400.
_________________________
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"

Top
#28042 - 11/10/11 04:30 AM Re: Guide for Parents and Caregivers [Re: Sideshow_bob]
marylyn Offline
New member

Registered: 11/10/11
Posts: 1
Deleted -- Spam


Edited by Sideshow_bob (11/12/11 09:17 PM)

Top
#30443 - 08/22/16 06:32 AM Re: Guide for Parents and Caregivers [Re: Sideshow_bob]
Derydeartact Offline
Member

Registered: 08/17/16
Posts: 23
Loc: Los Angeles, CA
Thank you. Gonna start reading it.
_________________________
Hello everyone!

Top
#30465 - 04/07/17 04:41 PM Re: Guide for Parents and Caregivers [Re: Sideshow_bob]
Derydeartact Offline
Member

Registered: 08/17/16
Posts: 23
Loc: Los Angeles, CA
we start to use ammonium lactate ammonium lactate... wish me good luck.
_________________________
Hello everyone!

Top
Page 1 of 2 1 2 >

Moderator:  marcsmom, Sideshow_bob 

Copyright 2012 Ichthyosis Information