3-month-old son was just diagnosed with IP

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What should I do? I looked up the website, and I am so scared. I would rather suffer all of his illness. I am desperate, but I still need to be strong. I tell myself spend the rest of my life taking care of him.

[IPIFSE]

I don't know where you live, so I cannot refer you to a physician.  I would suggest that you go to a geneticist in your area and learn more about your son's condition.  If you wish I can send you a bibliography of articles written for medical journals about IP. which you should show to all your son's medical providers.  They can then order any number of articles from me at no charge.  Several of the articles refer to boys.

Susanne Emmerich
Exec. Dir. IPIF
www.ipif.org

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Yes, that would be very helpful. My email address is ***@****. Would you please email me the journals and I shall study more on the IP.
Thank you very much!

[DNV]

My daughter was diagnosed with IP about 10 days after she was born. It was very scarry for us as well but we did everything that the doctors suggested and followed up with all different doctors, neurologist, eye doctors, skin doctors, genetesits. She is now 6 months old and doing great. Yes, she has some scarring on her legs and streaking discolorations on her stomach but other than that she is a beautiful normal 6 month active girl.
i recommend talking to your pediatrician and asking him or her for a referral to a neurologist and then take it from there. Dont be scared, take it day by day and just love your son .
Take care.
Diana C, New Jersey

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Thank you so much. I can not help crying when I read your message.

You are right. I should be positive and try my best to take care of my son. I also live in New Jersey. My email address is jiechen36 (at) hotmail.com. Can we contact each other by email? I really need some support here.

Good luck to your family!

Thanks.

Jie

[DNV]

I want to join the support group. I need support as well. We just went for our high risk appointment, the doctor said she looked great and that what she has on her body was typical of the disease . but everything else looks fine. he also said that i had to keep a close eye on her on her development and to follow up with the eye doctor often and the neurologist . it kind of made me sad because she looks so great, i thought she was out of danger but i was wrong, she has to be closely monitored to make sure she keeps on developing normally. i will give you my email at work because that is where i spend most of my time and i will also send you a picture of my kids, Ivana is the baby of the family.
Dont cry, you have to be strong to take care of your son whatever the case may be .
i will give you my home email in my other email.
talk to you soon.
Diana

[Moosespb]

I have two daughters with IP, and lost 4 sons by miscarrage to this disease. I was under the impression boys could not have the disease because of the X cromosome being messed up unless he has another genetic disorder that gives him an extra x cromosome. What have the doctors said to you? How is his development? I hope im not scaring you, I have IP myself so I know what youare going through. Please message me if you would like to talk!
Jessie adreibsome (at) yahoo.com