My little girl only got diagnosed a little while ago you will need to see an othmoligist (i think that is how you spell it to get his eyes checked for retnal damage and the dermo should tell you how to care for his skin we also went and saw peadiatric genetics doctor he was able to explain everything other symptoms at this stage your biggest concern would be seizres hope this helps good luck
my daughter is 7 months old and has ip also. we have seen a genetics specialist, opthamoligist, neuroligist, and pediatrician. she is blind in her left eye, has 2 lesions on her brain, she is on medication for sezuires that won't stop, and she has the skin pigmentation. your best bet would be to see a genetics doctor asap, i am not trying to scare you, but this is so rare that it can be dangerous to your grandson. god bless you and your family, i will be praying for you, and i hope everything turns out alright. if you need anything, or just to talk, let me know.
I would get a second opinion on the diagnosis from the dermatologist. Did they do a skin biopsy? Also go to the genetics department and have blood work sent to the Baylor School of Medicine for a complete test of his genes. This would definitely be a first( a boy withliving with IP). He may have Ectodermal Dysplasia. That is also a organization(National Foundation for Ectodermal Dysplasia (NFED) that offers a LOT of supprt, conferences, ect. They might have more to offer as far as direction goes to get the right answers. My daughter will be 4 this next month. She has I.P. She also has a very mild form of it. She was born with blisters on her body, legs, scalp, but it was ALL gone by 4 months old. She has had NO seizure activity. Just be calm, bold, and curious. Do your homework, be a headache to the dr. world. Especially when it comes to something not really "normal"..I want the best care for my daughter, and so far she has received it ( we also have state insurance). We have been blessed with Drs. who don't hesitate to do all that they can for her best interest. If he for sure has IP, get his eyes check out ASAP. Amaris, my daughter, did have surgery to prevent a retinal detatchment @ 6 weeks old. Her eye is perfect ever since. Welcome to the group. Where are you located? We live in San Luis Obispo, Ca.
Thank you for the feed back. Baby Christian is doing well and all seems very normal, except for the small dots on the back of his legs. Eats, sleeps, well, all is good. I am trying to educate myself and my family if Christian has IP, we want to have all bases covered.
We have a list of questions for the attending doc and a list of demands for an action plan.
AN appointment has been arranged for an eye exam.
We live in Pine Falls Manitoba Canada.
Thanks all for the info
I have IP and my second daughter also has it...
I am 19 wks pregnant with a little boy and like yourselves I have always been told a boy with the effected X chromosome would not survive, so when I reached 12 - 15 wks, we thought all was well.
Then I heard there was 1 or 2 cases where boys had survived with IP but a milder form!? I just wanted to ask How your Grandson is doing as he must be coming up 8 wks now and how has it effected his skin and hair??
I take it you don't have any family history of IP?
Sorry for all the Questions but if Your Grandson does have Incontinetia Pigmenti, it is extreamly rare, espeacially with no family history.
Well I hope little Christian is doing well and if its IP that it is like I said very mild?!
I live in uk
It is extremely rare for a male to have IP but it is possible. I would suggest that a genetic test be done. IF you live in the US contact the DNA lab at Baylor College of Medicine in Texas. You would not have to go there for the test.
Medical Genetics Laboratories •Baylor College of Medicine • 2450 Holcombe,Houston,Texas 77021-2024
Grand Blvd.- Receiving Dock • 713-798-6555 • 1-800-411-GENE (4363)
Fax:713-798-6584 • Email:***@**** • Website:www.bcmgeneticlabs.org
Meanwhile to be cautious I would have an eye exam done according to the directions on the web site.
Founder & Exec. Dir. IPIF