Incontinentia Pigmenti Community
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Avatar universal

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?
3 Responses
658757 tn?1397800478
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.
Avatar universal
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
574259 tn?1217344406
Hello, I have a daughter who has IP also and is affected in all areas. She is 34 years old now. Back in 1979 when we first found out what she had and how extremely rare it is, they didn't have much information on it at all. Not until about 2006 did I discover this site on it. My daughter didn't walk until she was ten years old. She has the pointed teeth too. When her teeth came in, they were her permanent teeth, except for one. She is blind in the right eye and her whole right side is smaller than the left one. She has epilespy as well. I can tell you that over time your daughter should get better and the scars will fade to where they are hardly noticeable. My daughter went through many surgeries to be able to get to where she could walk. I carried her everywhere for ten years. I didn't have a wheelchair and after awhile a stroller was too small for her. I recommend you get a wheelchair if she can't walk because it will damage your back and later on, it will become even harder on you to take care of her. My daughter is developmentally disabled as well because of the scar tissue on the left side of her brain. She had coarse hair as well and it fell out easily around the scars on her head, but now it is a lot better and hair grows there on the scar and is pretty strong. So you have that to look forward to. My daughters hair is very very long and beautiful. The seizures also will get less frequent as time goes by. It is very hard on a person with a child like this and especially if they are alone. I would like to join your facebook community if you would let me. Just keep holding on and things will get better.
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