My newborn baby girl has been diagnosed with IP. She appears to have the worst type of IP - the extremely rare form of IP which causes CNS issues and seizures which so far the doctors haven't been able to stop. She is currently at Cedar Sinai hospital being taken care by best neurologists and doctors. They are using the standard seizure medications - Topamax, Phenobarbatol, Penthobarbatol, Kapran, Versad - and working on dosages trying to find the right cocktail. Nothing has worked so far we are running out of time, as she is in an induced coma - which can only be done for a limited amount of time plus her little body can only take so much of all of these heavy drugs. We understand with newborns with IP - there is a possibility the seizures might stop - however there is no way to know for certain or when they will. Does anybody have any experience with such a case, know any neurologists who specialize in this type of IP? are there ay parents who are going through this? We are heartbroken and so scared for our little girl - any advice/input would be greatly apprechiated.Thank you.
Thank you for your concern, I really apprechiated somebody responding to my post, as I feel so alone. A day after I wrote this, it breaks my heart to write this, we lost our daughter, she was only 19 days old. Her seizures just kept getting worse, the doctors had tried all types of medications at all doses and they did not help. She had the best care, best doctors, neurologists but nobody could help. She was not able to go on living. She had no chance against Incontinentia Pigmenti. I have researched as much as I could; IP is so rare, seizures in IP are even rarer...but to hear of somebody dieing from IP, is practically unheard of...apart from my beautiful baby.
I recently found out I am the carrier of the Nemo Gene with the Common Deletion, I have zero symptoms. I never had a blistery skin rash as an infant (like my daughter), seizures, teeth/hair/nail issues....nothing, never. All I have is a tiny white scar on my inner ankle, thats it. Incontinentia Pigmenti is a horrible disorder, both my case and her case are so extreme, so rare, so unheard of.. so much of IP is such an enigma..the doctor's were perplexed and don't know what to make of it, they have never seen a case like this.
I am so sad for my daughter, so sad for me and my family and sad for all of you also having been touched by IP. But I am glad to part of this group, it makes me feel a little less alone. I hope nobody here has ever experienced such a loss due and that nobody will ever have to in the future. I will be starting process of IVF/PGD this January so that our next child will not have IP. The doctors are writing up my daughters case and there is talk of possible further studies conducted in relation to her case, I am hopeful and optimistic they might learn something new from our case on IP, maybe something that can help a future child with IP, I am so proud of my daughter and hopeful about this. I just wanted to share my story with you all...
I am so glad you have had the courage to post this I think this is therapeutic to share and just good for others to hear. I am so sorry to hear about your daughter, your post stuck in my mind indeed. I am sure you were just baffled being a carrier, having no symptoms yourself. Keep talking, I think this helps give strength to others on here.
Thank you, I agree it is important for others to read. I might repost it in the main IP section so more people can read it. I was and am totally baffled I have IP. I really have 0 symprtoms. I wish I had known, I wish there would have been a way to test for it....I do wonder if there is a common shared symptom in people with the NEMO GENE deletion (apart from the standard symptoms). All I have is a tiny/thin white pigmented line on my inner ankle, I wonder if everyone with the Nemo Gene mutation also has this? or if its just all so random...which the doctors keep telling me...but I feel like even they dont understand as there is such minimal research...Can I ask how are you affected by IP? do you or your children have it? I would love to hear your story....
I am 32 and was born with IP. I had the more classic symptoms, the rash, low birth weight, bad teeth, etc. I guess I'm one of the lucky ones. I've always known I've had IP. Ever since I can remember. My mother said that the doctor who treated me, was lucklily one of the few who were aware of IP, and was actually identified it right away! I in a study book apparenlty, from 1979. And he was from my small little hometown here in Petaluma, CA. My mom and grandmother now had an answer that explained my mothers condition as a baby. Which at the time, was totally unknown. They thought she has so many different ailments. But when I popped out with a rash, and bright red, the doctor knew.
I like to think I am pretty smart (I am an IT professional for the government) and I look normal, act normal... The only evidence left, is the pointy teeth, Which my mother tried so hard with braces, and retainers to get to go normal. They did for a while, but they spread back apart :), Well that was 5k down the drain" she says. They are still fairly normal, and I am not too embarassed by them, as it's the bottom teeth mainly. I look like a vampire. Considering I loved Dracula as a child, I thought I was special. go figure..
But I digress, sorry for the long winded story... I want to tell you that I hope everything turns out ok, and that your little baby grows up to be normal like a lot of us do.
My name is Penny and I have a precious granddaughter who has IP and like so many others it is the first case in our family. We are trying to find out how to deal with so many of the cosmetic effects of the condition, such as the thickening of the finger nails. We can't seem to find any web-sites that talk about these options. We would love to talk with you as to what you did and how you dealt with these issues growing up. She is such a bright little girl and we want her to grow up to be a strong young lady. It would be wonderful to talk with you.
Hi! My 2 year old suffers from IP and has all the problems, but not quite to the same surverity as your little girl! So sorry to hear how bad it is for you and your family, especially since I haven't had it this bad with my little girl. I hope she pulls through. At the end of the day, Only girls get IP because they are stronger. Fingers crossed for you all! X
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