Anyone with positive experiences with babies with KP???????

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Originally posted by Sherri

My beautiful 1-year-old daughter was just diagnosed with KP after being misdiagnosed as having simply "Baby acne". I am absolutely DEVASTATED, as I'm sure you all are. I never even knew that I had KP until now. I have a VERY mild case - a TINY bit on the back of my arms - you would never even know. I always thought it was just dry skin. Guess not! I don't even care about my KP - I want to help my daughter. I've been crying for days at the thought that she could suffer with this for YEARS!! And it's all my fault. She has it on her cheeks, shoulders/arms, and thighs. I would say the worst of it is on her face. I can deal with it on her body, since it's not even really that bad (YET, I suppose). But HER FACE!!!!!!!!!! I can't even deal with that. She's is truly the most gorgeous baby girl in the world, and this is terrible. I know I'm being selfish because I should be happy that she doesn't have a terminal illness or anything. But of all things, why this??? I feel like God is punishing me. We just started treatment (she was just diagnosed 10/11/02). They have us using Erythromycin Gel and Azelaic Acid - both twice a day. I have to say, we've used it only twice so far and I have seen some improvement - even though supposedly it could take about a month to see results. I am really trying to be as positive as possible about this, but I'm really having a hard time. My husband doesn't understand. He thinks I am over-reacting. She is only one-year old and is already suffering with skin problems. My poor girl.

Does ANYBODY out there have anything POSITIVE to tell me about your experience with a baby with KP??? PLEASE!!! I would appreciate any positive comments - feel free to email me personally at:
slabouef@charter.net

Thank you!!

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Originally posted by alison

I have a 23mth old son with it, pretty severe. Started around 9mths and has gotten much worse. I started out feeling the way you are feeling now, but the anger, shame, pity fade away. Bottom line is that there is nothing you can do about it (I mean, all the feelings aren't going to help). So you just have to deal with it, and start trying out different types of treatments. Right now, we are trying the carmol and SA powder mixture. It is working quite well for the bmps, but not the redness. Spencer has it on his face, arms and legs. Both sides, but left is worse. He doesn't seem at all bothered by it. Much more bothered by our treatment approaches LOL... My hope for him is to have the face under control or resolved by the time he enters school. From everything I've read, this is pretty reasonable anyway. Most face cases do clear as the child ages. BTW, he has a twin sister who is just beginning to show signs of it as well, though a much more milder case of it.

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Originally posted by BL

Think on the bright side (i know there isnt really one with KP sufferers) but at least u are helping ur baby from the start at an early age. I wish my parents took me to a dermatoligist when i was a baby and then maybe if they had started treatment then i wouldnt have it now....

My baby cousin has KP on her arms and cheeks, her mother had it too but it faded as she grew older. When ur child grows up make sure that u don't make TOO much of a big deal over it, because it might just make ur child feel more concious of it, however on the other hand, be there to support ur daughter. My parents havent really supported me much with and it kinda ****es me off. Sometimes i do get bitter and blame it on my parents for giving it to me even though neither of them actualy have it (if they did it mustve been a mild case). So make sure ur there to suport ur daughter.

I don't want to have kids as i dont want them to inherit it off me My bf has a bit of KP i *think* on his back....so i'm scared if we ever had kids...they'd just pop out as little KP's! lol stupid thought i know! It'd be good if somehow we could get this disease extinct somehow....so other generations wouldnt have to be stuck with it.