Pregnancy- baby with Ichthyosis & without....

Posted by: robinlynn9901

Pregnancy- baby with Ichthyosis & without.... - 05/28/05 01:46 PM

Hi, I have two boys and am 33 weeks preganant with my third [img][/img] This new baby is so active, and its a lot of fun, but it makes me wonder about him. Has anyone who has had kids with and without Ichthyosis (I have EHK and so do my first two boys)noticed a difference in the pregnancies?

For example with my first two, I was very tired and had excessive trouble with swelling and blistering of my legs. By 33 weeks with my first two I was ready to deliver and just exsausted. With this little guy I have so much energy and I feel great. Ive had some but not severe trouble with my legs and this baby is so active, and my first two moved around, but not like this!

Now we dont know if this baby has EHK, but I wonder if maybe he doesn't becuase the pregnancy is so different. I know each pregnancy is different, but maybe there is a connection. Anyone experienced these things?
Posted by: Anonymous

Re: Pregnancy- baby with Ichthyosis & without.... - 05/28/05 02:19 PM

Maybe it's a girl this time? Aren't girl babies normally bigger and stronger at birth then boys? Just a guess. Let us know how things go.
Posted by: ShaunaJ

Re: Pregnancy- baby with Ichthyosis & without.... - 05/28/05 05:57 PM

Ryley has LI, but I do recall her being less active then the other two who don't have Ich. I always worried there was something wrong because she didn't move around as much as the first child. I think the doctor was tired of me and my worries. That is all I noticed that was different though. Keep us up to date though!

Posted by: Hearsay

Re: Pregnancy- baby with Ichthyosis & without.... - 05/28/05 09:22 PM

I don't know that you could tell if a child has ichthyosis or not just from the activity levels. The skin doesn't develop the keratin layer until well into the 3rd trimester. In the womb, the skin is well hydrated and the child is kept warm by mom's insulation, so all of the problems they have after birth shouldn't play a role - especially in the case of EHK.

Nathan (affected) was a pretty quiet baby, but I've had friends that had very active boys and girls, so gender isn't reliably determined that way, either.

Have you done the genetics for your EHK? If you have, you could tell by doing amniocentesis.
Posted by: Deidra

Re: Pregnancy- baby with Ichthyosis & without.... - 05/29/05 10:41 AM

Hi, Without testing, I doubt if there is really a way of telling whether a baby has ichthysosis during pregnancy or not. I will say my first son is ichthyosis free and 20 months older than my second son. I can remember rubbing my belly with my second son, who has EHK, and telling him, "We love you baby, we want you to be ok." I'm not completely sure what I thought was wrong, but I knew something was. I think the main reason was, how little he moved.
Good luck with the remainder of your pregnancy. Almost there now! I bet you can't wait to meet your new baby.

[This message has been edited by Deidra (edited May 29, 2005).]
Posted by: robinlynn9901

Re: Pregnancy- baby with Ichthyosis & without.... - 05/29/05 03:28 PM

thank you for your replies. It really is wonderful knowing I can post a concern or question and ill get some answers & support from all of you.

First I'll say, this baby is definatly a boy [img][/img] We've seen crystal clear [img][/img] so the gender thing isnt the issue, although we though it may be before we found out he was a boy.

I know we could definatly find out through an amnio, but im not interested in any prenatal testing for that purpose. But thank you for that suggestion.

Overall I feel this baby is just different. He may have a good strong personality or he simply doesnt have the skin condition- which would be a whole new experience for me [img][/img]

I guess we will just wait and see [img][/img] Yes we are so excited to meet our little one- especially cause hes so different than my boys were. Yesterday he gave me a good swift kick in the ribs... the first time ive ever experienced that!

I will update everyone. For now I can say our little one will be here in 4 weeks unless some issues with his other medical problems change and we have to deliver earlier.

Thank you all for your support.
Posted by: Lisa for Jake

Re: Pregnancy- baby with Ichthyosis & without.... - 05/29/05 11:05 PM

my two pregnancies were totally different, with alex my first, i had a great pregnancy, he was very active, i "bloomed", had a few weeks of morning sickness, but on the whole felt great, he was born 2 weeks late after six hours of labour, jake was born 2 weeks early, i felt sick almost every day until his birth, i had to be induced because i started to bleed, i thought i had gone into labour, but then it all stopped. I was in labour with jake for 2days, alex was delivered by ventouse, and jake with forceps. i guess i am not too good at the "push" i couldnt get either of em out for the life of me. with alex i had gas and air,,,,with jake i had the same and pethadine,,,,,,not sure if that made it a little more difficult for him, the doctor wanted to send me for an epidural with jake,(something i didnt really want) but luckily i didnt need one. gosh i do ramble, take care
Posted by: Veronique

Re: Pregnancy- baby with Ichthyosis & without.... - 07/17/05 07:12 PM

ok, it isn't relevant for the person starting this topic,anymore, since her baby is born "long time ago" now... Just wanted to mention in my case the baby with EHK (the youngest)was very much more lively during the pregnancy than the oldest, who doesn't have EHK. Aparently it says more of caracter than anything else. They are both girls by the way.
Posted by: Hearsay

Re: Pregnancy- baby with Ichthyosis & without.... - 07/18/05 02:07 AM

Actually, it probably isn't that far off. Her due date had to be this past week. I hope Robin comes back soon to let us know.
Posted by: toyahmiss

Re: Pregnancy- baby with Ichthyosis & without.... - 07/20/05 03:53 PM

This thread brings up something I had always wondered about too. My first (with ich) moved well when I was pregnant with her to start with but then this dropped dramatically, and in hindsight she hardly moved at all towards the end. I was worried, but I was a first time mum and had no reason to suspect anything and the docs/nurses can be quite impatient I find if you ask lots of questions. With the 2 after (no ichthyosis) I couldn't believe how much they moved/rolled etc. I felt sad that I hadn't been strong enough to ask more questions when I thought something wasn't right, but I was newly married in a new country, no family or friends to talk to either.

That's why I always say, ask and question, push and cajole to get what you need.

So even though I had no test avaialable and nothing but the level of movement to go on with the last 2, I had a secret hope that they were okay and they were.

It would be interesting to see whether this anecdotal evidence supports less/no movement = higher risk of ichthy.
Posted by: jrmiss86

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

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.

Posted by: robinlynn9901

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

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]
Posted by: Ursula

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

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.