Incontinentia Pigmenti Community
Confused over when to expect symptoms with IP
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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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Confused over when to expect symptoms with IP

Hi

Just found this site and I am so gratefully to read other peoples experiences and get advise.

My beautiful daughter is 16 weeks old and she was diagnosed with IP when she was two weeks old. She was born with blisters and they determined it was a transcient rash but when she was 5 days old she had seizures and after a week of tests she was diagnosed with IP and genetic testing confirmed this in December. She is on medication for her seizures and it is working :) I am awaiting results to see if I have IP or if she is the start of the line. We believe it is more likely she is the start of the line.
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Her blisters cleared up within a few weeks and she is perfect now. From people's experiences when do the warts appear? Do you know if they hurt? We were told to put vaseline on any areas of sensitivity but that is it. When does the pigmentation colouration changes occur? We saw the dermatologist in December and won't see him again until next December and we didn't get a chance to ask some of the questions we needed to ask.

Anybody suffer from seizures or their child suffer seizures and how did you cope? Do you/they still suffer from seizures? Are you/they on medication permanently? In general her MRI was positive but there are areas of question and we are waiting to meet with Neurology to review it in more detail.

Is there anybody in Ireland that has IP or a child with IP?

I am sure I am asking basic questions but any help/tips/experiences would be very welcome.

Thanks

C

351246_tn?1379685732
Hi!

I appreciate your concerns. If the MRI was conclusive of CNS involvement and your daughter continues to have seizures, then in all probability she will need to take the medication life long. Also, she would need frequent ophthalmic consultations as she grows older to detect and treat visual problems. Regular dental care would be equally important.
The warts appear in the second stage of IP, usually after a few weeks or months of life and disappear over the next few weeks and months. This is followed by hyper-pigmented streaks which disappear by adolescence. Thereafter atrophic and hypo-pigmented lesions develop.
It is important to undergo complete genetic counseling and watch for all developmental milestones if there are brain lesions involved. Please discuss in detail with the neurologist, pediatrician and the specialist. Hope this helps. Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.
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