New to this

My daughter is 5 weeks old and i have just been told that she has IP and that i need to see all these diffrent doctors for her care its so hard because i have had 3 miscarriages and then I have this one baby and here i am a single mom who child may have all these problems and may not grow up normally me my self i have not seen a lot of hope out there for what she has it seems in one way or another something will be wrong then i fight my self for wanting this baby and bring her in to the world where she will have to deal with kids who are so rude and have no understanding of whats wrong with her skin she was born with the light brown spots now she have blisters on mostly one side of her body nothing on her face at all just her chest down and on her back and bottom but what i want to know is how do u keep hope that she will be ok when just about everyone who has it has something wrong i love my child she is the only one i have then all these appiontments are so late in the months so all u do is think of what is wrong

[veronica2104]

Hi nishamom. First congratulations for your baby girl. I am 23 years old and I also have IP.  I'm not sure if you have checked this website. http://www.********/index.html. From what I know it is important to do regular check ups of the eyes.

I don't know any other IP patients personally besides my mom that has it too, but we both develop well mentally and physically, well besides the random spots on our skin. For me it affected the development of my teeth. I believe 80% of IP patients have this.
Growing up my condition did not affect me much, my mom from an early age told me about our disease and how it could affect me. If you see me it wouldn't even cross your mind that I have IP. Kids did asked me at times what was wrong with my teeth, I would just say nothing I didn't let it get to me. On th positive side teeth is a cosmetic problem that can be fixed
The disease is not as bad as it sounds, i'm pretty sure your baby girl will be fine. Just remember to do regular check ups, and try to inform yourself as much as you can. And please don't loose hope, there is a lot about the disease out there. When my mom was born no one knew what it was and dr's didn't know how to deal with the problem. We are blessed of living in a time where we know what it is, and know we are not alone with this "problem"

I wish you all the best,

Veronica

[JennLynn23]

Hi there!

I am 25 and also have IP, I too just had a daughter and she has IP as well. However, like Veronica said, it never really affected me either.  I have only a few spots on my legs which no one would notice and also had teeth problems here and there, but nothing braces and a few surgeries couldn't correct.  Now my teeth are healthy and normal!  My daughter seems to have inherited the same affects as myself, she is only 5 months but her eyes have checked out fine so far and she just gets small outbreaks (rash) now and then.  I will keep you in my thoughts and prayers!

Jen

[Laylasmom]

Hello, I too have a baby girl with IP. She's now 6 months old. I didn't know I had IP until I had my daughter. My daughter is doing very well, she had blisters all over and now she just has the hypopigmented streaks and patches. The two most important specialist for your daughter to see is the neurologist and the optometrist. If she hasn't had any seizures than thats a very good sign. Also make sure you keep her eyes stimulated. If you have any questions, I'm here for you. Good luck and use god has your shield and your baby will be ok.

Lulu

[jojo421]

Hello,

I am a 44 year old with IP, dx as an infant by a Dermatolgist. He told my parents,"he felt sorry for this poor unfortunate girl". Well, he was wrong. Vision problems(anybody can have) fixed with contact and later LASIX Surgery here in Nashville. You have to be checked out by an Ophthalmologist, a Medical Doctor.  I do have a small bald spot my crown but easily covered.  I had only 21 teeth. But with braces,bridges,dental work my teeth are normal in appearance.. I have mild hypopigmented in areas on both the lower part of my legs.  They do fade over time. My fingernails
seem fine. My MRI of the brain is normal.  
The year 1996, My husband and I had a daughter. When she was born, she had a  rash that later blistered. Then it would wart over and fall off.  The blisters stopped appearing on her at exactly age 1. Her blisters were in her lower extremities.and on the sides of her feet The blisters never caused her pain.She was also taken to the opthomologest  ifor the first 12 months of her life. ... She is now 13 years old and doing fine. She will Ineed deal with an Orthodontist for her teeth.    Our daughter with IP is in the 7th grade  and has normal cognitive function.    The first year was a  lot of fact finding ,appointments.....Just pray about it and God will sends you his answers. My advice is to keep a full, original set of medical records from day one including x-rays.

[jojo421]

more info.  The medical community is learning more and more about IP.. Patients with IP have varying degrees of IP.
I was very worried her first year of life. I took care of her in all the ways I could medically. It's important to treat her like you would with any child with or without IP.  The eye check by an Ophthalmologist usually a Pediatric Ophthalmologist. My MD also knew what to look for with IP patients. Every month I would take her in to see the MD.  We received a clean bill of health 1 year later. The Dermatologist also had knowledge of IP and what to look for.
She has 20/20 vision. She met all of her milestones. Her hair is normal. The only issues were the rashes to blisters to the hypopigmented areas and dental issues Also, see a Pediatric Neurologist. She does not like the mild streakiness on her legs, she's not fixated on her legs. I as a child was very self-conscious but did grow out of that phase.  I felt like I had to add to my above comments and let you know I was so worried, felt sick to my stomach.  Just take it one day at a time--keep loving your baby. My daughter is a smart girl, loves tennis just a typical 13 year old. We live in Nashville and our doctors are at Vanderbilt  Medical .  Vanderbilt also has a genetic department that can answers questions. Any person with or without IP can have eye issues, dental issues.  Hang in there-enjoy your baby-God Bless. I remember how  felt when mine was a baby.