Very Worried and Scared

[esatpil]

Hi Everyone,

My wife gave birth to our beautiful angel a week ago and she was diagnosed with IP.

Having not much knowledge on IP,I have been researching the internet.We have no history of IP in either parents family and my son who is 6 is perfectly normal so we cant understand how she got the genetic disorder.

I feel her pain when I see the blisters.I have a few specialists to visit for her eyes etc

What should we look out for?

Please any info will help

[snowy87]

hi im sarah, im 21 and i was born with IP.
when i was a kid i had terrible blisters on my legs and hands the doctors gave me some cream to sooth the pain n now i only have 1 or 2 blemishes on my leg. it does flair up when im ill but other than that it doesnt bother me, you may find that when shes is becoming ill even if its just a cold the rashes will get worse but there is all sorts of amaizing cream 2 sooth it.
as for the eyes i had to go to specialists for my eyes tested at the hospital its just a precaution as some people with IP get catoracts. its all routine to to make sure you child is ok.
you may find that your child might have problems with her teeth but ive found over the last 21 years that the treatment is fancastic and getting better all the time.
any other things just ask me and i will help you if i can.

[IPIFSE]

I'm the Exec. Dir. of the IP International Foundation. The first course of action is to take your daughter to a Pediatric Ophthalmologist to have her eyes examined.  Attached is a description of how this should be done.  It should be shown to ophthalmologist.  I would suggest you look at the web site for the foundation www.IPIF.org.

It is not uncommon for your daughter to be the first in your family to have IP.  It is known as a spontaneous mutation, which means that the mutated gene was not inherited but started in the fetus.  It also does not mean that your wife did anything wrong during pregnancy.  Spontaneous mutation is a very common occurrence.  I would also suggest that if you look at the web site you try to read some of the newsletters.  Many of your question are answered there.



EYE EXAMINATION OF CHILDREN AFFECTED WITH IP
Morton F. Goldberg, M.D.
Director and William Holland Wilmer Professor of Ophthalmology
The Wilmer Ophthalmological Institute
Johns Hopkins University School of Medicine
Tel:  [phone]  Fax:  [phone]   Email: ***@****

A dilated fundus exam as soon after birth as the neonatologist or anesthesiologist thinks it is safe.  Sometimes, if there are any suspected retinal abnormalities, an examination under anesthesia is required.  The important thing is for the ophthalmologist to look at the optic nerve head, the macula (in the center of the retina), and the far peripheral retina where, the typical pathologic events tend to occur.  This should be done before the babies leave the hospital.

Severe retinal disease is often associated with brain dysfunction and is a marker to pursue x-ray scanning studies of the head.  With respect to the eyes themselves, some babies with IP, and even some older patients, might benefit from laser treatment in an effort to prevent retinal detachment or vitreous hemorrhage from the consequences of the typical retinal neovascularization that occurs in this disorder.

Dr. Goldberg, would like to offer his services to any patients who might benefit from ophthalmic consultation and/or treatment under his personal direction.  He is the author of several articles on this subject, which NIPF can send reprints of to those who are interested. Dr. Goldberg is also a member of the Scientific Advisory Council of the Incontinenta Pigmenti International  Foundation.