Dec 21, 2008
Hi, our little girl is 11 months old, we have just been told that she has ip, she first had a rash when she was 2 days old we went to doctors he told us baby eczema and implied we were being over anxious as new parents, we have had many visits since and seen other doctors who also said it was eczema, when she was about 6 weeks brown blotches appeared on her trunk also told that it is down to her having sensitive skin and it will fade.
When Elena was 4/5 months it was noticed by a health visitor she had a problem with one of her eyes we have seen a eye specialist and she has a vertical squint we are awaiting an operation to sort this out.
Since this was diagnosed we saw a Paediatric Consultant he recognised that she has ip, he has refered us to great ormond street hospital to see a neurologist and a genes specialist. She has had a frizzy patch of hair on her crown since she was born.
We are now aware that all of these symtoms are obvious that we have been misdiagnosed untill now, as far as we know at the moment me or my husband have never heard of ip untill now.
We have had a very traumatic week so far untill we found this web site it has put our minds at rest and we now know that Elena's future is not as bleak as we first feared. Would be great to get in touch with other familys especially UK.