Is there anyone else who has a child with pretty much all the symptoms of IP?
Hi! I have a 2 year old little girl who was born with IP. I had my daughter at 18 in January 2010. I took her home the following day agter having her. When she was three days old, she has a big red lump on her head, like a blister, so my midwife took myself, my daughter, my partner and mum to the hospital. When we arrived, her whole body had gone red, like sun burn, and when the redness disappeared she was left with these marble looking swirls and big brown patches on her body. We had 6 consultants look at her, not knowing what was wrong, so resorted to giving her antibiotics everyday for a week through a cannular. They let us go home when she was a week old with some epiderm to keep her skin clean since they still had no idea what was wrong. Ittook three months for a doctor to identify her condition, followed by finding out that she had all the problems that comes with IP. Finding out she was blind in her right eye at 6 months old,Detached retina, left sided weakness from birth, found out she was brain damage at 18 months old, alopecia from birth, first teeth at 13 months old,coned.epilepsy at 1 year after having a seizure at 8 months old, and of course the skin pigmentation. She's 2 and 7 months old and is working at the same development rate of an 11 month old baby. She cant walk nor talk. On the 20th July, I found her fitting in her bed at 10 in the morning after letting her sleep because she was tired more than usual. She was rushed to hospital, and by 12 that afternoon had never woken up from her sleep, yet had multiple seizures, was barely breathe and almost died. I'm blessed that she's a fighter and the doctors managed to bring her back to us. I would love to talk to some who has or has a child with IP and is goin through the same thing?
my daughter is 4 years old now and has been through the same thing as well. she was born with ip, and has had sezuires since birth. she has leftsided weakness, doesnt walk, talk or crawl. she is on 4 kinds of anti sezuire meds. lesions on the left side of her brain, as well as her brain has shrunk. if you need to talk to someone i am here and i understand. she is on the g tube now, and on oxygen at night. if you have any questions please let me know.
Hey! Thank you :) I have set up a little group on face book for IP for people like us going through this. I'm blessed in a lot of way that my little girl isn't as bad. I really hope you gorgeous girl gets better x
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