Page 1 of 2 1 2 >
Topic Options
#25156 - 09/18/09 06:34 PM Thanks
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Hi,

It's been 1 year since Ivy has been born and I can't believe where the time has gone. I just wanted to thank everyone who has helped us with advice over the past year and also wanted to share some photos of Ivy's birthday weekend!! The cow cake was my handywork!!! I got the idea searching the internet - she loves animals!!! Although not many people were convinced it was a cow!!

http://i393.photobucket.com/albums/pp16/Emmalina0/P1030531.jpg

http://i393.photobucket.com/albums/pp16/Emmalina0/P1030547.jpg

http://i393.photobucket.com/albums/pp16/Emmalina0/P1030523.jpg

http://i393.photobucket.com/albums/pp16/Emmalina0/P1030542.jpg

Take care

x

_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

Top
#25157 - 09/18/09 11:31 PM Re: Thanks [Re: Ivy's Mummy]
Melanie UK Offline
Member

Registered: 09/16/09
Posts: 21
Loc: Manchester, UK
Awww Emma, what beautiful photos, Ivy is growing so fast and is adorable. Happy Birthday Ivy!!! Looks like she had a lovely birthday, and love the photo of her on her bike so cute. Thanks so much for sharing the pics and just in case you're wondering, it's Melanie here from 'Friends of Ichthyosis website.... formerly 'melangelmusic' on here until I had to re-register as I was having problems with this forum.

Take care and all the best
Mel xx
_________________________
My name is Melanie, I'm 32 years old from the UK and have EHK Ichthyosis. I also run the website: www.friends-of-ichthyosis.webs.com

Top
#25159 - 09/18/09 11:46 PM Re: Thanks [Re: Melanie UK]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
What a beautiful girl!!
Thanks for sharing!
_________________________
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
#25160 - 09/19/09 12:55 AM Re: Thanks [Re: KimNL]
anaronni215 Offline
Member

Registered: 10/13/08
Posts: 37
Loc: Rhode Island, USA
She is a little princess. I just love love love that hair of hers!!! Happy Birthday sweetheart!!!
_________________________
My name is Julie and I am the proud mom of 2 CIE children born with a collodion membrane. My Ana is 13 , GIovanni is 6 and I have a uneffected daughter Francesca who is 18 months old

Top
#25164 - 09/19/09 04:05 AM Re: Thanks [Re: anaronni215]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
She's gorgeous! Happy birthday Ivy:) oh and I think you did a great job on the cake!
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

Top
#25176 - 09/22/09 01:41 PM Re: Thanks [Re: brandynsmum]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
Awe she is gorgeous and I love all that hair! We have lots of crazy hair here too and its one of my fav things about Kallie!!

If you don't mind me asking, what do you have on her arms and legs? We are new to the ick world!
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

Top
#25178 - 09/22/09 06:13 PM Re: Thanks [Re: MomofPrincesses]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Hi Kati,

Ivy has bandages on her legs, arms and torso. When she was born we used to cream her head and keep a bandage hat on there too. But as you can see her hair grew pretty rapidly. We only kept it on until her head was free from the membrane. We have been told by our derm that the bandages hold the moisture in her skin a bit longer and it certainly helps keeping grease away from her clothes.!!!! We've always used them. When it's hot we take them off. I know that when we use the really greasy vaseline type stuff on a night it really helps keep the moisture in as we grease her skin and then put a layer of grease over the bandages on her arms and legs and then double the bandage over.

_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

Top
#25183 - 09/23/09 12:58 PM Re: Thanks [Re: Ivy's Mummy]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
Love the pics Emma! Give Ivy a big belated birthday kiss from all of us here! Must meet up in half term. Will text u to arange.
x

Top
#25185 - 09/23/09 06:41 PM Re: Thanks [Re: BritMum]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
Interesting, thanks for sharing!! Is it just normal bandages or is there something special that you use?
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

Top
#25213 - 09/26/09 04:03 PM Re: Thanks [Re: MomofPrincesses]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
They're called Actifast and are just normal bandages.
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

Top
#25215 - 09/27/09 01:07 AM Re: Thanks [Re: Ivy's Mummy]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Wow Emma I never thought of doing that but it makes perfect sense. Does it reduce the amount of scaling because the skin stays moist? I know for example that there is no scaling in brandyn's nappy area because it's always moist... I think I may try this on his legs as the scaling is so thick there it may reduce the scaling smile
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

Top
#25219 - 09/28/09 06:33 PM Re: Thanks [Re: brandynsmum]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Morgan,

Ivy doesn't really scale as much as she used to. When she's going through a really dry patch then there are scales and flakes to go with it. But the majority of the time her skin is ok (for her!!). I can always tell when she's going to peel though as she scales then and obviously a peel follows. It's about once a fortnight at the moment.

Sometimes when we take the bandages off she's still greasy!! It's like her skin is at saturation point.

I just thought she didn't scale as much because she had a mild case - although no-one will officially confirm or deny his!! But maybe the bandages do have that effect. We were told when she was born that maybe she could just use the bandages at night if her skin improved but we still use them all the time. We change them daily in the morning and by the time she gets to night time they're soaked in cream so her skin stays relatively greasy during the night.

The bandages hold the grease to the skin. Sometimes though when we take the bandages off her skin is very flaky so it doesn't really keep the skin moist as a nappy would. I imagine it's because nappies are waterproof.

Have a go and see what you think. We use the green line for her legs, red line for her arms and yellow line for her torso. I know you can buy excema suits but we're quite happy with bandages. The next size up from green is blue.

http://www.activahealthcare.co.uk/products.php?q=ActiFast

I know this is a UK site but it could give you some ideas!! I hope Brandyn is well and keeping you on your toes!!!

Let me know how you get on.

x
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

Top
Page 1 of 2 1 2 >

Moderator:  marcsmom, Sideshow_bob 

Copyright 2012 Ichthyosis Information