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#11470 - 04/03/06 01:24 PM Should I be doing something more?
Momoftwo Offline

Registered: 03/28/06
Posts: 25
I'm almost 22 weeks pregnant and we suspect that our baby has x linked ichthyosis. I'm pretty much positive actually, but we are awaiting the amnio results which could take another week.

I have a few questions. First, for the past week we have been in a holding pattern just waiting to get results. My doctors know nothing about ichthyosis. They are waiting to see my results and also to send me to a specialist that deals with higher risk pregnancies.

I'm wondering if I should be having anything done now (ultrasounds, measuring amniotic fluid, etc?). Is it okay to wait a couple of weeks, get the diagnosis, meet the doctors, and come up with a plan for me? I feel our son kick all of the time and just want that to continue. I worry about him in there!

Also, if I don't need anything differently done now, will there come a time when I will need more ultrasounds or non stress tests or what? At what point should that happen? Finally, can the doctors measure for amniotic fluid by ultrasound, or is there a better way?

Thanks everybody. If it weren't for all of you and knowing I could get advice I think I'd lose my mind this week.

#11471 - 04/03/06 03:58 PM Re: Should I be doing something more?
jrmiss86 Offline

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
When I was pregnant with my son, I did nothing out of the ordinary for the x-linked. Occasionaly the steriod sulfatase deficiancy can cause failure to progress during labor, or so I have been told, but that did not happen with me. Really for us the major stuff with our son has had nothing to do with the icthyosis but with the kallmans syndrome.

Hope that helps

Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)


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