Incontinentia Pigmenti Community
IP very worried
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This patient support community is for discussions relating to incontinentia pigmenti, genetics, and breast, dental, eye, hair, nail, nervous system and skin problems.

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IP very worried

Hi there just wanting as much help as i can get i am 21 and have ip how ever even though i was diagnosed as a baby i was never aware that i really had it as my mum thought i was misdiagnosed however 2 weeks ago i gave birth to a perfect beutiful baby girl who also has ip we had her diagnosed last week so i have been doing some research because at first i thought it was nothing but now i am soooo worried can any one tell me what to look for she has the rash but iam worried about seizures and all the other serious side affects i really dont know what to do she is seeing the eye doctor tomorrow and has a great dermatoligist but just wondrering is there anything elese i can do i live in australia so we are a bit behind as it really rare over here from what i can find very worried and wanting some advice please help  
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Avatar_f_tn
You seem to be doing just fine.

You seem to be in very competent medical hands.  Have your baby's eyes examined according to the directions on the web site, and continue to do so about every 6 months.  Watch for seizures, and if they occur take the baby to a Neurologist.

There are quite a number of other cases in Australia, so you are not behind medically for IP.

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713118_tn?1229607053
hello
I just wanted to say hello...my youngest daughter and I have IP. She went through all the blistering stages but never had any siezures... I didnt relalize that seizures where that common in IP till i came on this site...
Has she had any siezures as of yet??
i wish you and your lil' one all the best for the future and if you ever need to talk...
i would love to hear how your little one is doing!!!
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Avatar_n_tn
Hi, I am a mother of a daughter with IP.  She is 7 years old.  She is a little, beautiful, african-american girl.  My daughter went through all the reported symptoms.  I know that each case is different, so I can only speak on her experience.  She is discolored on a majority of her body.  She is somewhat shy about  it and feels that people are always staring at her.  She hates summer because that is a time that clothes come off.  I try various types of make-up, but they don't help.  She has not experienced seizures, there is a developmental delay.  She finds school to be difficult and following instructions rather difficult too.  She finds it hard to focus and seems easily distracted by her surroundings.  I've never written in one of these forums before, so I don't know if I'm the right person for this.  I just know that my heart goes out to any parent that has a chld with this disease because there is so much we don't know about it.  I would like to know if her skin problem will fade or will this be something she'll have to deal with.  Right now she believes that this is something that she will grow out of and that her skin will be the same color as mommy's.
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