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#25142 - 09/17/09 10:23 AM Mum to be of X-linked boy
KiwiMum Offline
Member

Registered: 09/14/09
Posts: 15
Loc: Gisborne, New Zealand
Hi, I am due to have a baby with x-linked ichthyosis in about 4 weeks time and there are no other children with this in my area that is known of.
I would like to hear how other parents got on in the early months and what I need to know.
How did you get on at bath time etc?
Any advise would be great.
Thanks

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#25146 - 09/17/09 06:38 PM Re: Mum to be of X-linked boy [Re: KiwiMum]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
How do you know already?
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#25151 - 09/18/09 01:02 AM Re: Mum to be of X-linked boy [Re: MomofPrincesses]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
XLI runs in families and can be tested for prenatally, unlike LI that appears out of a completely unaffected family.

Kiwi, My kids don't have your type, so I'm not much use, but there's a poster here called threerxli that has many posts with very helpful info. Do a search for her.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#25152 - 09/18/09 04:52 AM Re: Mum to be of X-linked boy [Re: Hearsay]
KiwiMum Offline
Member

Registered: 09/14/09
Posts: 15
Loc: Gisborne, New Zealand
My father is affected by it but we didn't know that it could be passed down at the time. I had a blood test that came back abnormal. It said that there was a 1.18 chance of the baby having smith-lemli-opitz syndrome so doctors did an amnio test. I saw gene and fetal medicine specailists and after the amnio and the scans all came back normal they questioned my family history. That how we found out what it was (as well as having it comfirmed by another test) and why the uE3 levels had come back so low.

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#25223 - 09/28/09 09:53 PM Re: Mum to be of X-linked boy [Re: KiwiMum]
jrmiss86 Offline
Member

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
My 4 year old son has xli and kallmans syndrome. As an infant he was very easy. We bath him once a day, usually in the evening for at least 10 min, usually closer to 20. We then use Aveeno Baby cream. It is the kind with the dark blue cap. He is always better in the summer with the warmer weather and the more humid weather. In the winter is when he gets dry and itchy. We just respond by giving him a second bath in the morning with more lotion. For us it has been a relatively easy thing to deal with. It does not affect his day to day life at all. Everybody sees him as a normal little boy with dry skin. The only thing that has been any kind of problem has been the overheating. We don't know the exact reason but he overheats very easily in the warm weather. This is not the case with all people with xli though. I know there are plenty of people on this board who do not have that problem, and of my two brothers, who also have xli, only one has a problem with overheating.

If you have any questions, feel free to email me

jrmiss86@jrmiss86.com
_________________________
Heather
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

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#25226 - 09/29/09 01:25 AM Re: Mum to be of X-linked boy [Re: jrmiss86]
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello All
I would just like to comment on some of the overheating issues. Christina G from Woodland Hills, CA posted a site about overheating in X linked affected people. The study explained we have less sweat glands and was posted not long ago. My overheating problems are mostly in the winter months when my skin is tight, but my x-linked cousin is affected all year round. Our mothers both experienced "failure to progress in labor" and would be interesting to see if it could be genetically pre-determined through a blood test or DNA. In fact at next weeks Regional 8 meeting in Las Vegas, its a good question to ask.
Sincerely
Les
_________________________
Les Avakian

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#25284 - 10/15/09 07:45 AM Re: Mum to be of X-linked boy [Re: KiwiMum]
10Jpappa Offline
New member

Registered: 10/15/09
Posts: 1
Hi, certainly hope all is going or went well!
We got the same scare/confusion while pregnant. Took a lot of the fun and excitement away from the last few months. We prepared for the worst, hoped for the best. After 42 weeks our sin was born after a c-section. Tough first two years with too little sleep. Do not be afraid to ask for help! At night!
Itchyosis ( ;-) ) in our case came with uncontrollable itching and alot of holding hands at night to let him fall asleep, and stay asleep. Tried dozens of creams, before we found grandma's Swedish hand cream. That did it. 4.5 yrs later, we all sleep well and the itchiness is < 10 % of what it used to be. Wow.
We stayed away from daily baths as they tended to dry out the skin even more. Showers with dad turned out to be fun!
One thing that help mom and dad was a thing the third ped derm (the first two were close to useless) said: "All the attention your son gets will bring you much closer to him and keep the family together." And yes, our daily snuggle sessions are highlights. Gotta love the ped's insight for the parents!

Many hugs
H
_________________________
Son 4.5 XLI
Daugther 1.5

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#25287 - 10/16/09 10:10 AM Re: Mum to be of X-linked boy [Re: 10Jpappa]
KiwiMum Offline
Member

Registered: 09/14/09
Posts: 15
Loc: Gisborne, New Zealand
Hi
Thanks to all for all your advise. Lochlin was born on the 7th of October (2 weeks early). Labor was not to bad active labor ended up being only 2 hrs 45 mins (total labor being about 12 hours) and he was born without any assistance and only spent 2 hours in neo-natal unit. At this stage it looks like he only has a mild case with the hands and feet being the worst affected but it seems to be coming up in others parts of his body as the days go by (but not as bad). We are working with doctors to sort out the best treatment for him. His hands and feet are cracking which is causing him some pain but the creams/ baths seem to working so far and it is improving (slowly) by the day. We are hoping that it continues to work but are looking into other products in case. We see the doctors again in 3 weeks to check progress.

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#25288 - 10/17/09 12:45 AM Re: Mum to be of X-linked boy [Re: KiwiMum]
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Kiwimum
Many congragulations to you and your family on the birth of your son.
Sincerely,
Les
_________________________
Les Avakian

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#25289 - 10/17/09 08:30 AM Re: Mum to be of X-linked boy [Re: Les Avakian]
Samiha Offline
Member

Registered: 07/26/09
Posts: 48
Loc: Dhaka,Bangladesh
Congrats:))
_________________________
Samiha

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