Incontinentia Pigmenti Community
Future family planning
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Future family planning

Hi All.... I have a 17 month old daughter who was diagnosed with IP at 6 weeks of age.  We are very blessed in that her condition is very mild.  My husband and I would like to have more children but fear having to go through what we went through with my daughter.  Does anyone know what the chances of this happening again are?  I have not been genetically tested (nor has my daughter - she was diagnosed by skin biopsy) but I do not think I have it.  Our doctors believe it was a spontaneous mutation.  I also also have a 3 year old son who is not effected.  I was just curious if there is anyone out there with a similar situation or who knows what the chances might be of it occuring again in this family.  Thank you for any advice you could give.
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Hi,
I was also a spontaneous mutation (28 now).  The drs. determined that she did not have IP based on physical diagnosis and she went on to have 2 more healthy children after me.  My case is also mild.  Baylor is the only place in the US that tests for IP.  You could send them a blood sample to find out for sure.  Your genetic counselor will be able to help with this.  The test is around $500 if your insurance does not cover it (mine did not).  In 80% of cases the gene deletion can be identified.  This could also be important when the time comes for your daughter to have a family as there are many options for not passing on the gene.  If you have any other questions, feel free to ask.  I've done a lot of research recently for family planning purposes recently.  Best of luck to you!

Kim
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Avatar_f_tn
My daughter (8mos) & I have both tested positive for IP via genetic testing.  I too, and wanting more children but am very concerned about future pregnancies.  I am not sure of the odds if you are not a carrier, but I know in my case, I have a 50/50 chance of having a boy or girl and a 50/50 chance of the disorder being present.  Hope this helps.  Pam
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Avatar_f_tn
I am 30 with a 7 year old daughter that has IP.  I would love to have another child but have not been tested myself and the doctors at Baylor told me it was most likely a spontaneous mutation.  Maybe 1 day I will decide and just have the testing done on me to be sure.  I don't want to add stress to my pregnancy.  During my pregnancy with my daughter I had to be on blood pressure meds the entire pregnancy and I think that might of caused the mutation or I could just be grasping for an explanantion.  That being said I would never take anything no matter my health risks during a pregnancy.  So I am kinda at a stand still.
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Hi There! My daughter Rachael was diagnosed with IP around 10 weeks old (shes 2 1/2 now).  We had herself and me tested and I am not a carrier--so therefore she was a spontaneous mutation as well. We got a letter outlining IP from our genetic counsellor and i beleive she suggested doing testing should we choose to have more children, but that the likelyhood of another one of your eggs carring the mutaion was somewhere around 2-3%. Hope this helps!!
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