I'm new and I'm excited that I found all of you

Posted by: Elizas mom08

I'm new and I'm excited that I found all of you - 01/18/08 09:55 PM

I live in Nebraska and my daughter is 9 mos. and she has ichthyosis.They are doing genetic testing and have not yet found out what kind she has.They believe she has C.I.E our family does not have a history of Ichthyosis and I have 2 other children that don't show any signs of it. In Nebraska people don't know much about it. So if any body has any information for me it would be greatly appreciated..
Posted by: libby

Re: I'm new and I'm excited that I found all of you - 01/18/08 10:28 PM

Hi and welcome to the board! My daughter, Claire, is 12 and has nb-CIE. She was diagnosed when she was 5. Until then, we were completely in the dark.

What lotions/creams are you currently using? When Claire was a baby we used a lot of Cetaphil and aquaphor. Oatmeal baths were also helpful. Now we use Lachydrin mixed with glycerin and dead sea salt for bathing. I think that because she is entering puberty, her skin is getting a little bit better? I am hoping!!!!

Do you have a good derm. in your area? It's really hard finding someone who knows anything about ich due to the fact that it is so rare. I know that when I go to the dr.'s, it seems like I am educating them!!

If you ever have any questions, here is the place to ask or if you are having a bad day, venting is totally acceptable and understood!!

If you want to email me, I would love to chat! We are still learning and experimenting with new things. Some days are good while others are horrible. We still battle with build-up in her ears and her scalp is so dry and flaky. But, other than that, the dry winter air isn't posing too much of a problem, believe it or not!

Olivia
Mom to Claire age 12 nb-CIE
(I have 2 other daughters that are unaffected)
Posted by: Elizas mom08

Re: I'm new and I'm excited that I found all of you - 01/18/08 10:37 PM

Hi Libby its so nice to here from someone we are useing Equate Dry skin cream and we mix glycerin in it with a hand held mixer we put itch cream on her and at night she gets medicine to help her sleep because she gets really itchy in the evening. As for derms we have already gone threw 2 of them because they don't know anything. We are looking for a new one.
Posted by: cara&babyt

Re: I'm new and I'm excited that I found all of you - 01/19/08 01:04 AM

Hi there,
I'm Cara and my son is Teofilo. He has CIE also. Teofilo will be 2 in Feb. Welcome, you have found a great place for advice and help, this BB has been very helpful to us also.

Here are some pics of us. Take Care
http://i89.photobucket.com/albums/k220/carapg2/Picture457.jpg
Posted by: Elizas mom08

Re: I'm new and I'm excited that I found all of you - 01/19/08 01:29 AM

Hi Cara its so nice to see a picture of your sweet little boy. I was also excited to see that he has hair Eliza is just now starting to get hair.
Posted by: BraedensMom

Re: I'm new and I'm excited that I found all of you - 01/19/08 09:43 PM

Hi Elizas Mom,
So glad you found this site. You will find some of the best things to do for your childs skin here. I am a mother of an 8 year old who has Nethertons syndrome. He is growing up so fast. We had a rough first couple of years but he is improveing every year.
I too live In Nebraska and there are not alot of Doctors who know much about Ichthyosis here. We have found a very good DR. at the Omaha Med center. However we dont go see her much anymore. If you would like to e-mail feel free. Take care, Tammy