This is Wesley's Mom

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Originally posted by Donna

Hello all and thank you to all of you who have been trying to make Wes feel better. It breaks my heart that he has to go through this. He developed the red cheeks right away as a baby. We have been to many doctors throughout his life with no help whatsoever. I also have Kp on my arms and legs. My 2 daughters age 12 and 7 seem to be developing it as well. Wes is the only one of us that has the red cheeks. I would give anything to take it away. I am wondering if Asthma and allergies have anything to do with it as we all have them. I have learned over the years to just deal with it.I dont get as embarrassed anymore. I have other medical issues which I deal with daily...Fibromyalgia and Chronic Fatigue Syndrome so those seem to take priority to my KP. I am glad that we found this site. We have bought many otc products for Wes and have wasted tons of money, as I have with my conditions as well. I dont want ot do that anymore. I am hoping to sort through posts here and see if there may be something we can try. But best of all....Wes has a place where he can come to now and vent, listen to what others have to share and maybe be of encouragement to another child his age(14). He is a wonderful kid and most of the time, his humourous, and caring personality pull him through. Thank you for being so kind to him.

Hugs to all
Donna

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Originally posted by kim r

thanks for posting- you have a good kid there. i am glad he has found our board. let him know we are all here for him. i know if my son ever ends up with KP (his skin is GORGEOUS for now, thank God) i will want him to have a good support system. on an upnote- the guys i know who have kp seems to outgrow it more successfully than well, me. 14 is a tough age with or without KP. Tell wes to hang in there.

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Originally posted by Robin

Hi Donna..my name is Robin..and I am new here..my son is also 14...when he was a baby he was diagnosed with kp of the cheeks...given lachydrin(that made his skin burn)and I was told not to worry that he would "outgrow" it....Years went by...the little pimples went away, but his face was always flushed...over the last couple of years it has become more troublesome to him...kids always ask him "hey why is your face so red???".."have you been in the sun all weekend???"....When he went to the pediatrition for his 14 year check up i asked for a referral to a dermatologist....Well then all the running around began...first he said that my son just had red skin...but that maybe it was rosacea...so he ordered metrogel ...that did nothing..Then a fwew weeks later we went back and he said"I think he has a rare skin condition called ulertyhema oophyrogenes(how ever you spell it)...he ordered RetinA and told us to come back in a month...the retinA only made his skin mopre RED!!!!...the dermatologist said the only treatment was laser surgery,,,and that we should go to a large city like boston where they do it all the time..I was so stressed out I couldnt even talk..But once I got home I told my husband that we were going to get a second opinion!!! We got a second opinion the next week...That Dr. said my son had ECZEMZA and ordered hydrocortisone cream...we tried to tell the Dr that my sons face was dry from the RetinA...but he wasnt listening.....we used the cortisone ointment for a few days..but then stopped....at this point my son was very frustrated and decided that nothing was going to work.....A few weeks later we contacted a dermatologist that works at a laser surgery facility to get his opinion..He trained at the Mayo clinic, so I figured he would be a good physician...he took one look at my son and announced that he DID NOT have ulerythema oophorogynes...he said he just had red cheeks, probably made more red by hormones...He wanted him to take nicomide tablets..a new med used to decrease the redness of acne, and also to begin using Primacy serum 20(a vitamin c serum applied to his face)...my son followed the instructions everyday...and when we returned to the office a month later i thought there was a slight improvement...We were to come back in a month....at this point my son didnt think that it was doing any good so he eventually stopped all treatment...plus he was going away to sleep away camp for a week and dint want to take all the cream and pills with him....I think that his skin is as red as before, but he says "it doesnt bother me anymore"...I dont know why all of the sudden he has decided that it isnt a problem, but if it doesnt bother him anymore i dont want to make a big deal about it...I hope to read a response from you...where do you live???? I am, in new york...Robin