hey, we are in the same boat. If you browse through the forum there is a post of someone who 's mother has IP and had a stroke at an early age. If I recall correctly I also read about somoene who said that his or her mom (perhaps the same post I cannot recall) had seizures as an adult with no apparent reason in the setting of IP. I am no expert but it seems to me from what I've read that IP is a diagnosis you carry for life and regretfully your daughter (just like mine) will be more prone to have these kind of problems. I think you should do what you are doing and take day by day and hope that everything goes in the right direction.
HI there! My daughter Rachael is 15 motnhs old now and is doing great! She may have some dental problems--but that is just wait and see what hapepns. As far as seizures go....the dermatologist that daignosed her told us to watch her for seizures up to age 1. Some dermatologists will say age 1, and some say age 2. From all the people I have met and talked to who have babies that have had seizures and neurological problems--it seems to me like if there are going to be seizures they are more likely to occur shortly after birth if they are going to??? not 100% on this but thats my feeling anyway? As far as I understand if your baby does not have any seizures up to age 1 (or 2) she is just as likely to have one after that as any other "normal" child. i hope this made sense and helps to releive your worries a bit.
I Agree I don't think it is nearly as grim as it seems. We have met with a number of specialists since my last post and they have made me a lot more optimistic about things. I read somewhere that if seizures do not appear in the second week of life, the prognosis is better. We are only two months down this road but it seems that things are going in the right direction. Rachel's mom is right........ just keep up the good attitude ...... I think our daugther will be normal after all.
is does get easier day by day and week by week, month by month. I found that I worry a bit less each day but its still always in the back of my mind. The first few months are so overwhelming! We just treat Rachael like any other baby and love her as much as we can!
Also, my daughter was born with IP. Now she is 2 months old. Seeking a conversation mum Latvian, Lithuania, Estonia.
My daughter was born in 2003, it took about 3 months to get her diagnosed. My husband and I were basically told to go home and pick her up as little as possible. To first time parents this was very scary. We still do not want other kids, my husband feels more this way than I do. I would not try for other kids it would have to be an accident. Noone in our family has ever been diagnosed with IP. Kaylee is now 7 and is a very bright child. The only problem we have had since the blisters is her teeth. Her jaw is not fully developed and she is missing a bunch of teeth. We go next week to a new dentist who will hopefully be able to do something for her. There is one side of her mouth where she has no teeth at all on the bottom. She calls that her drinking side. I am glad to have found this site and be able to hear others stories. It makes me feel a little better.