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#10511 - 07/20/05 09:48 PM Re: Pregnancy- baby with Ichthyosis & without....
jrmiss86 Offline

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
While I was pregnant with my son, who is now 6 months old and has kallmans syndrome and x-linked ichthyosis, I was very often worried that he did not move enough. I even was sent to the hospital the day before he was born to get a non-stress test done because of his lack of movement. He seems to be making up for his lack of movement while I was pregnant now however because now he never stops moving.

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

#10512 - 07/21/05 06:02 PM Re: Pregnancy- baby with Ichthyosis & without....
robinlynn9901 Offline

Registered: 12/30/04
Posts: 40
Loc: Scotia, NY, USA
Hello everyone! Its been a while since I been on here- but we've been wrapped up in baby [img][/img] Evan Michael Thomas was born on June 29th! He weighed in at 4 lbs 11 oz- definatley a little guy!

My assumptions were correct- Evan doesnt have ichthyosis, and what a blessing for him because, as some of you already know he has some kidney issues and things would have been very complex if he had EHK too. Evan was admitted to the NICU because of his kidney problems. He stayed there for 2 wks and came home ast wednesday. [img][/img] Horray!

(For those of you who are interested or looking for an update, Evans left kidney became severely dialated durring my pregnancy and it now has no function to it. The kidney was drained out durring labor and they pulled 3 cups of fluid out of it. After many tests, it is decided that Evan has just one kidney. So far things seem to be great, however there is a small something (could be more cysts) on the good kidney and we are still looking into it to see what it could be. But we are grateful for the blessing weve been given. Evan is a wonderful boy and so good too. He is doing well and growing like a weed. He already weighs over 6 LBS!

After this baby, I feel strongly that the EHK effects the babys before they are born. My two effected were less active and had growth trouble. The pregnancies were hard and stressful. This last one was classic textbook pregancy. Everything went so well- I wanted to stay pregnant longer [img][/img]LOL!

Anyway- thankyou for all the replies and support. Its good to have you all out there. As for my theory- well see if it holds up next time [img][/img]

#10513 - 09/03/05 10:21 PM Re: Pregnancy- baby with Ichthyosis & without....
Ursula Offline

Registered: 04/07/04
Posts: 6
Loc: Northern Ireland
Congratulations on your new baby!I hope all is going well for you all. My son is now 4 but I had to add to your topic- while pregnant with him he was very active all through the pregnancy, even when he was a few hours old, he was kicking his legs. He is on the go alot still and loves dancing and singing,as well as being a very bright little boy.I think he has a kind of larger than life character!

I should have said, he has had ichthyosis from birth and we are waiting for a definite diagnosis as to what type it is at the minute (thanks at last to a concerned and thorough dermatologist). He is getting fed up with the creaming and waxing at times, but copes really well on the whole - the main problem is getting him to stand in one spot for long enough.

Anyway, we have a baby girl who is ich free (so doc thinks x-linked) and she was much quiter in the womb. She has a more serene disposition, active as well but more contained! So just to add to this interesting topic, I think maybe character will out over any problems our children have and I wish you all the best with yor new baby.

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