All Journal Entries Journals
Previous | Next

Elena

Dec 21, 2008 - 2 comments

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.

Comments
Post a Comment
713118 tn?1229603453
by Madisonsmum, Apr 27, 2009
Hi im so glad they finerly diaognosed you correctly!
My daughter Madison has i.p and as i have it we were as prepared as we could be... dont know how we would have got through it if we didnt even know what the problem was, at least by now your daughter should be over the worst of the skin blisters and it should start to settle down... I hope you manage to sort out the problem with her eye! madison has been very lucky i suppose as she only shows signs of having problem with her skin and teeth and her hair is a little frizzy but that can often be tamed with a bit of preserverance, i live in Northamptonshire, if you have any questions or just want to chat please just message me - jody mum to Tiani 10 yrs, Madsion 2yrs & 4mths and Riley 8 & half mth old bump!!!

Avatar universal
by MelanieMarshall, Apr 28, 2009
Thank you for your reply, Elena has had surgery on her eye 2 weeks ago, they done an examination under anesthectic and found some blood vessels that were not quite right, they then lasered then she will need this to be checked again in 2 months to make sure the laser has worked, and pretty much the next 8 years, Her skin is fine now only a few brown pigmentation patches on her belly & groin. also she is a right little madam but i believe that is normal for 14 months and this will continue.
frizzy patch of hair at back but leave in conditioner works wonders, the next thing we have to deal with is her teeth, only has 4 of them and they only started to apear 6 weeks ago and they are  very mishaped we are waiting to be refered to a dentist.
How are your daughters teeth and skin now.
Sorry to ask you so much have you had your pregnancys screened, we would like another child eventually but we are waiting for myself to be tested.
Good luck with your bump.
Melanie.

Post a Comment