Are there any parents of children with harlequin ichthyosis here?
Any connection to such parents would be appreciated.

Thanks
Joni

Welcome! As fae as I know, there are 2 parents of young children with HI and 2 or 3 parents of grown children. They don't come on much, but I do see them on facebook. Find the group "friends of ichthyosis" and I'll hook you up with them. How old is your baby, and have you found FIRST yet?

Joni,

My daughter, age 8 years, is affected with Harlequin Ichthyosis. Are you a parent?

Shannon

Jennifer thank you, I will look for the group on Facebook.
Shannon, yes, I am a parent. My son, Omri, is now 7 weeks old and has HI.
Our biggest difficulties at the moment are with feeding him. We were given a special baby food by the doctors that is very high in calories. I'm not sure if it's related but Omri has trouble eating enough, and seems to have terrible pain from gas. He screams a lot and it seems to be related to digestion. When he eats he eats until he starts crying.

Shannon did your daughter have ectropion when she was born? Omri does and it doesn't seem to be improving. The eye doctor says he will not have eyelids really. So how do they close their eyes?

Brenna had to have skin graft surgery to create eyelids. In the meantime, both before and after, you have to apply eye ointment like Lacrilube or ClearEyes or GenTeal to keep the eyes moist.

Could your son have reflux?

Im a parent my daughter is 3 with HI,jane had ectropion and had surgery to correct it,it worked well i still Use eye ointment.

Thank you for answering everyone. I'm sorry I haven't replied. We are so busy just getting through every day and trying to get a little sleep in as well that I don't find the time for it.

We are in the hospital since the weekend because Omri had a temperature and they thought he has an infection in the blood. Turns out he may not have an infection after all though he's been getting antibiotics for several days. But he seems to still be feeling very bad and not eating well and crying a lot more than usual and sleeping very restlessly in the little time he does sleep.

We're very concerned now about his eating. I think he does have mild reflux though he doesn't spit up much. Did your children have unusual trouble eating? Did they seem to be in pain a lot of the time? How many baths did you give them a day when they were babies? How often did you put creams on them? Did the skin ever reach a point where it got too thin and even the soft pink layer peeled to reveal red raw flesh?

We have a skin doctor and many other doctors but no one seems to really have answers for us.

Joniba, have you contacted FIRST? I called and asked and they said that they didn't know about you. There are SOOO many resources available through them. 215-997-9400. Please call! Or give me your number or email via IGM and I'll get you to the right people. I hate to think that you're going through this alone.

Hi Jennifer, I contacted FIRST when Omri was first born and spoke briefly with Dr. Fleckman. But I am in Israel and he just referred me to the specialist here. I will try to call the number you gave me anyway. What is IGM?

Joni

Joni, that explains why no one has heard about you here. I didn't realize that you are in Israel.

I'll look into what contacts we have out there and get back to you. In the meantime, definitely keep in touch with the other posters in this thread, who also have children with HI. Another mom with a child only a few months older than Omri is here: http://blessedbybrenna.blogspot.com