We told our doctor we wanted to get an amnio to determine if the baby has IP. My wife already got tested and the mutation was identified by Baylor. We went to see the genetic counselor today and she called Baylor and they said we were cutting it very close. My wife is 19 weeks pregnant and it would take 2 weeks to grow the cells from the amnio and another 3-5 weeks to test. By the time we find out she'd already be 24 weeks. So its our fault we didn't get this done earlier. Our doctor never mentioned it but I dont think he realized it took that long either.
Anyway, we got an ultrasound also today and the tech thinks its a boy. She still cant tell 100% though. So basically we got a 50/50 chance of the IP being passed onto the boy and him not being born. But I cant find anywhere online on when the miscarriage typically happens and our genetic counselor did not know either.
Hi there, I also have IP and is currently 5 weeks pregnant, i have the same questions as well.... how are you guys doing? any updates??? i really don't know what to do, i would never get rid of my baby even if they told me that it had ip... i am very stressed :(
I have a mom and 2 sisters with IP. My mom had 3 girls. She did have 4 miscarriages (we believe they were probably all boys). My older sister had had quite a few miscarriages herself (no live babies -- but she also has other health issues). I, myself, which I don't have IP (have 2 boys). My younger sister, which does have IP, did have 2 miscarriages. The doctors told her to just keep trying for girls. But don't lose faith -- she has a healthy 1-year old son. All of the miscarriages were earlier on in the pregnancy. God Bless You All!
My first pregnancy was identical twin boys with IP, and they died naturally at 12 weeks, although I had what's called a "missed miscarriage" - nothing came out, so I didn't find out that they died until my next ultrasound.
My second pregnancy was another boy with IP, and we got our test results back at 12 weeks, and terminated the pregnancy, and he was still alive at that point.
hi there, i am currently pregnant for the first time, 22 weeks, i confirmed that i am having a little girl, i am not running any tests, i am just hoping for the best, i will keep you guys posted, she will be born on October 10, 2009. i am so worried but i wanted this, i didn't want to get older and regret not trying, my mom had two boys and myself, i am the first in the family with IP, i am assuming that you also have IP. keep trying and let God decide for your baby. let me know if you have any questions.
I am 25 and have IP, and also have a 7 month old baby with IP too. She is wonderful and has nothing wrong with her except for the blister when she was first born. I even think her case may be milder than mine, which all I have are a few faint streaks on my legs remaining. We will continue to have natural births and put it in Gods hands. If we have all girls, we will feel very blessed!
Thank you for your comment, i was wondering, when i was born, i was already born with blisters on my skin, reallt bad ones, in fact, my mom describes that i have most of them dry already and new ones were growing on top of the old scar ones, i am so nervous, i just hope that Abigail (my baby) does not come out like i did, i have seen pictures of babies with incontintial pigmenti and i can help it, i always think the worse, i guess trying to prepare my self just in case she comes out like i did. Let's hope for the best. let me know if you have anything to say about what i think...
i have just joined this discussion group to get some support from others who know about IP. my daughter is 7 weeks old and was diagnosed with IP. it was a huge shock as we had never heard of it before. as far as i know it is not in the family. i have an identical twin sister and we have both had 2 miscarrages but i am not getting tested for IP as i am not having any more children. my daughter is getting her DNA tested and we are waiting to find out where the mutation occurred. i hope your pregnancy is going well. when we planned for our last pregnancy we tried for a girl. God blessed us with a girl- who happened to have IP. at the moment she is doing very well. she was born with the ugliest,most horrific rash. she developed blisters that turned yellow and grew on top of each other. some even went green. i felt so sorry for her but she didn't appear to be in ant pain. my biggest concerns when she was diagnosed with IP was how she will be in the future. i am really scared about central nervous system problems and how her teeth will develop. we are taking each day at a time and praying for protection against any complications. i am enjoying my new little girl and wouldn't swap her for the world.
Hi, I just recently lost my son at 15 weeks due to IP. I have IP and so does my daughter. I have done alot of research on the genetic disorder. Everything that I have read has said that there is no certain set time when miscarriages happen, but most commonly in the 2nd trimester (14-18wks especially). The specialists that I have talked to have said that it is not uncommon to lose them after the 18 week point. I don't want to be a downer but I just want you to know it could happen at any time. I thought it couldn't happen to me and I was devistated. I wish you the best and I pray that you have a healthy baby!
i'm 17 weeks and i have IP everything is good so far. i went to the doctor at 16 weeks and all was good but they didnt do any tests. i can get the sex of the baby within the next week or 2. maybe 3. but i only had one mild blister when i was born. no rash or scarring or anything. and none of the other symptoms that go with it. hopefully i'll get lucky. i've heard of women having perfectly healthy boys too.
We recently terminated a pregnancy at 17 weeks following CVS results telling us that is was boy with IP. He was still alive at that point. I had assumed that if I was going to miscarry, it would have been earlier in the pregnancy, but learned that is not always the case. The right choice for us was to go ahead and end the pregnancy rather than waiting for it to happen naturally. We will move forward with IVF with PGD next.
Ive known all my life that I've had IP. My parents found out when when I was born that something wasn't right. My mum does have it but only affects her teeth.I was born with the pigmentation on my stomach which has now disappeared and very lightly on my legs. It has affected the growing of my teeth and I have not seen it on here yet but I am also blind in one eye, affected by IP. A yr ago I had my first miscarriage and also had one last week both being 12 weeks. I never thought that it would affect me in in miscarrying only that their may be the possibility of passing it on. I am now awaiting to see a specialist on the best way to go about this. I was wondering if ppl have done IVF to stop passing IP on and whether it has wrked. I have faced some difficulties in life but have always come out stronger and wouldnt change anything.
We actually didn't go through with it. We talked to the genetic counselors (locally and at RGI in Chicago, where we would have done the IVF) and were ready to start the process, but it was like there was just something telling us to try again naturally. We did and I have a healthy 10 month old son now! We had another CVS, but instead of using Baylor, we used Gene DX and got result back in about 10 days.
I am 35, and just diagnosed with IP, I had 1 miscarriage at 9 weeks, and a stillbirth at 20 weeks. My stillbirth was a male. It has taken its tole on me, and we are now trying to get pregnant again. Keeping up the faith that God will provide for us. I do have a healthy 12 year old son, which I am very blessed to have!
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