Seeking a network with other parents of lamellar

Posted by: lexilove

Seeking a network with other parents of lamellar - 07/20/10 10:01 PM

I'm a new parent to a daughter born with lamellar ichthyosis in March 2010. I'm hoping to meet other parents with infected children. I live in Eureka, California. We are five hours north of San Francisco on the coast. If anyone is interested in sharing or giving advice, please contact me or leave your contact information.
Thanks,
Suzanne

Posted by: Meghan

Re: Seeking a network with other parents of lamellar - 07/22/10 04:17 AM

Hello!

Our daughter will be two in a couple of weeks and is diagnosed with lamellar. We live in the LA area and would love to chat.

Meghan
Posted by: where2be08

Re: Seeking a network with other parents of lamellar - 08/24/10 02:14 AM

My brother who is now 15 has severe lamellar and we have been using many many different creams throughout the years to help keep his skin in good condition
Posted by: MonkeyMama

Re: Seeking a network with other parents of lamellar - 09/22/10 04:21 AM

I'd love to chat with you! My daughter is 2 and a half and has Lamellar. We live in Georgia.
Posted by: KimNL

Re: Seeking a network with other parents of lamellar - 09/23/10 08:59 AM

My daughter, Casey, is 2 and 1/2 - more than happy to share.
Still up in the air if Lamellar or CIE. The gene which has mutated ICHTHYIN can cause either and she exhibits symptoms of both.
Cheers
Kim
Posted by: Ivy's Mummy

Re: Seeking a network with other parents of lamellar - 09/23/10 08:50 PM

Hi Suzanne,

my daughter is 2 and has Lamellar. Although we are in the UK I would be more than happy to share our experiences.
Posted by: MonkeyMama

Re: Seeking a network with other parents of lamellar - 09/24/10 05:26 AM

Wow! It's so neat to see so many others who are close to Cate's age who are also Lamellar (or CIE, which is how Cate was originally diagnosed). Where are all of you located? Where are you in the UK, Emma?

I ask because we know that Georgia is not the best place for us to live with Cate's LI and are searching for a better place to be. Is anyone in a good temperate climate?
Posted by: cschaap

Re: Seeking a network with other parents of lamellar - 09/24/10 01:32 PM

Hi, my son just turned 16 months. He has been diagnosed with Lamellar. We live in Crown Point, Indiana about 40 min. south of Chicago. We do our best to try and just keep it simple, maintain it as best we can and let him be a kid:)
If I can help in any way I would be glad too!

Candace
Posted by: Ivy's Mummy

Re: Seeking a network with other parents of lamellar - 09/24/10 05:39 PM

Hi Sam
we live in Yorkshire. This summer was pretty warm (for England) and last winter was very cold. The extremes haven't really affected Ivy's skin however she does go red in hot weather but it's never that warm for long! We were in northern France in August and it rained for most of the time and Ivy's skin was the best it's been in ages!
Posted by: KimNL

Re: Seeking a network with other parents of lamellar - 09/24/10 10:55 PM

Hi Sam,
We live in Newfoundland, Canada. Living on the coast ensures moist air at all times and it is rarely, if ever, hot. We do have central air and humidity control in our home, though, which also helps.
We spent some time in Toronto this year and while Casey seemed fairly OK, the 30+ Celsius temps made her turn bright red if out to long and I thought she seemed drier than usual.
Our climate, though not warm enough for me :), seems perfect for her!
Take care
Kim
Posted by: TiffanyJ

Re: Seeking a network with other parents of lamellar - 09/29/10 07:42 PM

I have a 6 year old girl and a 3 year old boy, both with li. We live in MS. We have problems may be 3 weeks a year with the heat but our kids seem to do better with the hot moist air. We spend a week or 2 in Florida each summer and their skin looks normal after a few days. 1 good thing about MS & GA is that every building is air conditioned. So other than when it gets to 100 degrees we don't have many problems.
Posted by: lexilove

Re: Seeking a network with other parents of lamell - 10/01/10 03:36 AM

Hi!
I've always wondered about the climate. We live in the Pacific Northwest. It never gets too hot or too cold here, and the air is relatively moist. We spent 2 weeks in GA this past August. I thought the air conditioning was bad for their skin, since it dries the air so much. Glad to hear it does well for your kids. We we're so afraid to keep her indoors during our visit, because everyone had the air conditioning blasting. Alexis seems to do really well in our climate.. I think! She's still adapting and evolving her new skin!