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
My son is one of the few out there that have been diagnosed with IP. He was diagnosed through biopsy at 2 weeks of age. I have asked several times about a misdiagnosis with several doctors, but I have been told that since it was a biopsy, it is an accurate diagnosis. He is now almost 18 months old and is the picture of health. We have no family history of IP and he has been tested, but he is not among the 80% with the common mutation of the gene. His case is now at Baylor for research testing to find out where his mutation is. We take him to the eye doctor regularly. He did have some abnormal tissue and underdeveloped vessels at birth that have since normalized. He has been in dermatology several times, but just for observation. Since he has no other major symptoms of IP, we are not involved with any other doctors other than his pediatrician. If you have any questions about your boy, please feel free to ask.
My family has a long history of IP in it. First my grandma, my mom, me, my sister, my daughter and my niece. We have all been born with the skin rash and it has cleared up within 6 months. Grandma had 2 miscarriages, mom had 2 miscarriages and my sister and I have each had one. My sister and I approached 11 weeks and that's when things stopped progressing; further testing told my sister and I it was a boy with IP.
Cone shaped teeth - some have had more dental work than others...all I can say is if you have a daughter with IP don't get rid of your dental insurance.
No seizures, no retinal detachment, etc.
My husband and I are trying for another baby and we have done the genetic counseling and are aware of the future with IP. I can't help but feel responsible sometimes. My husband is sweet and reassures me every day that it's out of my control. We have discussed possible Invitro but our daughter was a surprise (not planned) and we think she's perfect.
Sorry, here i am again, i am currently eight weeks pregnant and I also have IP, this is my first pregnancy and i am very scare to loose the baby if is a baby boy with ip...my question is, did you and your sister had any kind of symptoms before loosing the babies? or was it just something that happened all of the sudden at 11 weeks? please help me, and how are your others with ip doing? thank you in advance.
Hi, happy to hear that you're pregnant. Don't lose hope yet...my sister's first child was a boy and he's healthy, happy and a big lego lover :-) My grandma also had two sons and they are the best uncles ever.
I have to say that no warning signs ever happened to my sister and I. We both went in for ultrasounds and their was no heartbeat. The doctor asked me if I had any pain, but nothing like that happened to me or my sister.
All the girls are great in my family...we deal with some dental issues but it's amazing what can be done to help. I have one daughter(she has IP) and my husband and I are still trying for baby #2.
Keep me posted and please know I will be here anytime you need to talk.
Thank you very much! I appreciate it! i am hoping for the best, i will keep you posted, i have a doctor's appointment end of March, not sure what the doctor will do, i got a bunch of test done last Tuesday but i am sure it was normal test for a pregnancy.. i just need to hope fo the best and let time answer all of my questions. Thank you again. :)
i am a mother of 4. 2 girls and 2 boys.my fourth child is a girl and is now 7 weeks old .she was diagnosed by skin biopsy shortly after birth with IP. as far as i am aware there is know one in our family with IP. we live in australia and there doesn't seem to be any support groups here. i am interested to know how your son is doing? i have seen some photos on the internet of the hyperpigmentation stage with the lines , swirls and streaks and saw something very similar on the back of one of my sons leg when he was around 20 mths.he had one thin line running down the back of his leg. at the time i took him to a doctor because i had no idea what it was. i was told it was nothing. since then it has gone and in the spot where the line was it is pale. he has had mild gross motor and speech delay but no other health issues. the geneticists are not in any hurry to test him due to the cost and they seemed to dismiss any chance of him having IP. it is very frustrating because without DNA testing there is no other way to know if he has it. my other son and daughter have no signs of having IP
I live in Australia and my baby daughter was diagnosed with IP 3 days after birth. it took us 5 months to see the genetic doctor and they took blood from my baby. they said it is going to be a while before we get the result :(. my daughter is 5 months and 1 week now, she is very well and has had all the check ups. she has been good so far....we are hoping for the best. good luck
I have IP and im currently 14 weeks pregnant. I had my Nuchal screen done which showed my baby has 8.4mm of fluid behind its neck. Im getting an Amniocentesis test done in 2 days.
What I would lik to know is did your babies show any fluid behind the neck and how much??
Thanks Liddy87 :)
My son is currently 4 1/2 months old. He was diagnosed with IP at 3 weeks. He had a blister like rash on his left leg and we were referred to a dermatologist. She did a skin biopsy of the rash and diagnosed IP. We have been to neurologist, grneticist, and ophthalmologist. Mri was fine, eyes are fine & tested negative for Klinefelter. We have now been referred to a retina specialist and he looked at eyes and are currently fine but wants us to get a second opinion on the IP results since baby will need to be looked at every 3 months. I am not sure what to do from here. Do you have and recommendations on where I can get a second opinion to confirm it really is IP? How is your grandson doing? Hope all is well. This is so tough since not very many people know about this disease.