Guide for Parents and Caregivers

Posted by: Sideshow_bob

Guide for Parents and Caregivers - 04/04/10 09:26 PM

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
Posted by: LiloMA

Re: Guide for Parents and Caregivers - 05/09/10 06:16 PM

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
Posted by: KimNL

Re: Guide for Parents and Caregivers - 05/11/10 12:45 PM

Fabulous job!
Posted by: BritMum

Re: Guide for Parents and Caregivers - 07/07/10 12:06 PM

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
Posted by: ChristinaG

Re: Guide for Parents and Caregivers - 02/25/11 02:43 PM

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!
Posted by: melangelmusic

Re: Guide for Parents and Caregivers - 04/03/11 11:43 AM

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
Posted by: Sideshow_bob

Re: Guide for Parents and Caregivers - 04/14/11 01:13 PM

Melanie, it's a PDF file. You need Acrobat Reader to open it. Let us know if you still can't open it!
Posted by: Tatergirl

Re: Guide for Parents and Caregivers - 05/13/11 03:09 AM

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!
Posted by: Hearsay

Re: Guide for Parents and Caregivers - 05/13/11 02:05 PM

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.
Posted by: marylyn

Re: Guide for Parents and Caregivers - 11/10/11 10:30 AM

Deleted -- Spam
Posted by: Derydeartact

Re: Guide for Parents and Caregivers - 08/22/16 11:32 AM

Thank you. Gonna start reading it.
Posted by: Derydeartact

Re: Guide for Parents and Caregivers - 04/07/17 09:41 PM

we start to use ammonium lactate ammonium lactate... wish me good luck.