new here

Posted by: kekonen

new here - 12/16/09 03:49 AM

We just found out yesterday that our 5 month old has Ichthyosis. We're not sure what type yet, and we weren't told anything about the condition except that there are many different types and that we'd come back in Feb for the derm to check the baby's skin. We were told to use CeraVe cream on her skin several times a day and to add RoBathol bath oil to her daily baths. Does anyone have any experience with these? The pharmacy had to special order the bath oil, but we started the CeraVe right away. Annalie's skin seems to be less dry, so hopefully we'll continue to see improvement.

Annalie wasn't a collodion baby. She was born with really peely skin that dried out right away and became dry and scaly. The nurses all thought that she was overdue, but I delivered at 39 weeks and the baby never measured ahead at any of my ultrasounds. Our pediatrician believed that her dry skin was just normal baby peel, but after 2 months of no improvements I called for a referral to a derm. It took almost 3 more months until we could get an appointment (where we went yesterday).

It's been a long journey so far trying to figure out what is wrong with Annalie's skin, and I am glad that I pushed the ped to get a referral to a derm. I'm so glad that we're finally getting some answers, and although I was completely overwhelmed yesterday with all sorts of info about Ichthyosis, I think we'll be okay. Thankfully Annalie seems to have a pretty mild case, and from looking at pictures it seems to be CIE or lamellar. She doesn't have any on her face, but the rest of her body including her scalp is very dry. She has rather large scales on her scalp, but the rest of her skin is just dry and flaky.

I'm sure I'll have many questions to ask and would love to be able to hear stories of how other parents are helping their young children deal with this condition.
Posted by: KimNL

Re: new here - 12/17/09 01:23 AM

Hi and welcome!
It can be VERY overwhelming! I had a similar experience when Casey was born - the nurses thought she looked overdue (no collodian) - but I knew right away because my Mom has ichthyosis. Casey is either CIE or Lamellar - sh e has a defect in the ichthyin gene (extremely rare) which can lead to either and she has characteristics of both.
From our experience, her condition is cyclical (she is now 22 months old). She'll have long spells where her skin looks almost "normal" and then she'll go through a bad spell and have a big peel and then it continues on.
This site is FABULOUS! You'll get loads of useful info and support. We didn't get the full extent of Casey's skin picture til she was about a year old. Initially, it seemed only her arms, legs, belly and parts of her scalp were affected but it is now almost everywhere.
You can email me anytime if you want or find me on facebook - I have loads of pics posted of Casey and my other girls so you can see if there are any similarities.
Good luck and don't worry, you'll find a routine that is helpful. Something a little different for everyone, it seems.
Take care,
Kim
Posted by: kekonen

Re: new here - 12/17/09 02:43 AM

Thank you so much! I sent you a pm.
Posted by: Les Avakian

Re: new here - 12/17/09 06:26 AM

Hello Kekonen
Welcome to our ichthyosis family and happy you found our site. We have an ichthyosis foundation called FIRST (Foundation for Ichthyosis and Related Skin Types) and our website is: www.scalyskin.org. FIRST can provide you with very useful information on ichthyosis. You can contact Jean Pickford or Moureen Wenik at: info@scalyskin.org or call (215)619-0670. I hope to see more of your posts. Take care.
Sincerely,
Les
Posted by: kekonen

Re: new here - 12/17/09 03:38 PM

Thank you, Les. Scalyskin.org was the first website that I found on Monday after we received Annalie's diagnosis. It has been incredibly helpful and informative! It has definitely eased my mind about what we're dealing with, and I am confident that we'll be able to give Annalie the best care possible.
Posted by: MomofPrincesses

Re: new here - 12/18/09 08:24 PM

This is all extremely overwhelming but this board has been my savior through all of this. PLEASE do not hesitate to reach out to me or anyone else. There are lots of pics of my Kallie on my facebook, Kati Hartselle Nelson if you want to add me there if you are on facebook or I can email some to you or you check around here, I have posted some here too! My email is KJsMommy27@yahoo.com