Incontinentia Pigmenti Community
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This patient support community is for discussions relating to incontinentia pigmenti, genetics, and breast, dental, eye, hair, nail, nervous system and skin problems.

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Please help

I am 29 year old female with IP.  I have no major symptoms other that a patch on the back of my head, some brown swirls on the back of my legs, no wisdom teeth.  I have found out I am nine weeks pregnant.  My partner and I are very excited but we're also concerned.  I have been to my GP and have gotten a date for my first ultrasound scan at 14 weeks (another 5 weeks away).  I it normal to have to wait for this length of time before we have our first scan?  Any advice would be greatly appreciated  
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690874_tn?1263054040
After finding out my daughter and I have IP the genetic doctor informed me that if i were to get pregnant again there was a test they could do to see if the baby also has IP. I think the test can only be done at 20 but i cant be sure. You should connect a genetic doctor.


Lulu
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690874_tn?1263054040
I meant to say 20 weeks
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762496_tn?1235061997
Hi there,

I have IP as well, i am 28 years old, when i was born i even had scars on my skin already and new blisters on my skin, my condition was really bad, but nothing else than my skin, i am normal, same with me regarding teeth, i am 29 weeks pregnant and everythng looks normal... i decided not to find out if the baby has ip or not even before me and my husband decided to get pregnant, we decided to go for it, i am having a girl, my doctor says that i will find out until i give birth to Abigail, i am hoping for the best, i am really concern but this is a chance that i took in life.. i don't want to get older and regret not trying to have a baby. i got my first ultrasound when i was 16 weeks when i got my first real ultrasound, the first one was at 11 weeks just to confirm that the baby had a heart beat... keep us posted, you are not the alone. :)
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Avatar_f_tn
Have you been tested through Baylor for the mutation?  If your mutation has been identified, they can do a CVS at 10-11 weeks to determine if the baby also has IP.  The ultrasound will not be able to tell if the baby has IP.  If not, it may be helpful to also do a CVS to determine the sex of the baby.  A boy with IP would abort naturally, so if you knew it was a boy and if you didn't miscarry, you would know it was healthy.  If you haven't already, I would definitely talk to a genetic counselor.  My husband I have recently been doing a lot of research and testing regarding family planning so if you have any other questions, please let me know.  I am the same as you, very minor symptoms.  However, we will take the steps necessary not to pass the disease on to a child.  When do have kids, we will try naturally first and we will do the CVS.  If that pregnancy is not successful (if the baby has IP we will terminate), we will move forward with IVF with PGD after that.

My genetic counselor broke it down for me like this.  All boys with IP will miscarry (ideally).  So what's left will be an affected girl, an unaffected girl, or an unaffected boy.  So of all full term pregnancies, there is a 60% chance it will not have IP.  Best of luck to you!

Kim
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Avatar_f_tn
Thank you so much for sharing your experience with me.  We have had some wonderful news.  We met with a genetic counselor since I last posted.  She discusssed everything with us told us that we could have the CVS, that there would be risks but it could ease our worries. We had a blood test to determine the sex of the baby.  We are now 13 weeks (tomorrow) and are having a boy.  We are delighted.  We decided not to go for the CVS and add any unnecessary risks.  We are taking one day at a time, we realise that we could still miscarry in the second trimester but we are defintely on the road to having a heathly baby boy!!!!!!!
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Avatar_f_tn
I am 5 weeks pregnant and very scared, I am having a dating scan at 6 weeks, sexing scan at 9 weeks and then the test to see if baby has IP  14 weeks, so all systems go! I will be terminating if they have IP as I want this gene mutation to stop at me, so my children don't have to go through this. Very scared about having multiple miscarriages though.
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