New member - teeange son has PLEVA

[Active Mom]

My son was recently diagnosed with PLEVA.  He just turned 17.  Compared to some other posts I've read, he's been fortunate in that the time from onset to diagnosis was only about 6 weeks.  He's had the condition for probably 3 months now and they appear to be clearing up. He's just started Tetracycline, but as I mentioned, the lesions appear to have been clearing up on their own. I was extremely disheartened, however, to learn that some of you have had this condition for years!  The dermatologist didn't tell us it will recur and so far I haven't had the heart to tell my son.   It's been tough on him:   his regular doctor had him tested for syphillis (how embarassing!) his girlfriend broke up with him (who knows the real reason?) some kids have actually been a little afraid.  I read on a medical web site that strep is a possible cause?  He did have a sore throat right around the time the first lesion appeared.

I'm interested in hearing more about potential triggers, treatments that work, and what my son might be in store for.  Is this a lifelong condition?

[MJC]

Hi,

17...what a difficult age to contract such a disease!

Was your son diagnosed thru skin biopsy?  It's very important to get a definitive diagnosis.  I only mention this because I've never heard of this disease just 'clearing up' on its' own....or being 'burned-out' with Tetracycline alone.

We aggressively & tenaciously treated this disease...it's so hard to find the right answers!  But we are convinced that the UV light treatments were key to rapid recovery!  Of course, this is not the only component of our treatment.  But we never missed a dosage or treatment...including cortisone & AquaPhor applications.

Please read my previous posts regarding our successful PLEVA  treatment.  My son was diagnosed in 9/05 and completely PLEVA-free by 12/05.

Good Luck,

Deidre (MJC)

[totalfolly]

Hiya, Active Mom, and welcome to SkinCell!

I'm sorry to hear your son has had some difficult times with his condition.    Hopefully, you (and he) will get some good info and support here.

totalfolly

[Uncle Matt]

Hi there Active Mom!
Welcome to Skincell!

Hope you find something on here to help your son.

Kindest Regards,

Matt C.

[Kbaugh01]

Hello!  My 14 year old daughter was just diagnosed yesterday, after 3 years of different doctors with questionable answers.  Actually, I was relieved that the new dermatologist knew exactly what it was, until I got home and did some research on it.  Anyway, he also said that they didn't know what triggers it and that it was rare.  He said that he wasn't sure if it would come back (but it has faithfully shown up for the past 3 years) but if it did he would be able to stop it at onset.  So we will see.  Right now we are just working on clearing up what she has now.  She is a mess, completely covered from her neck down (trunk, arms, legs, hands, feet).  He prescribed 3 cycles of Azithomycin (5 days on, 5 days off, 5 days on, 5 days off, and 5 days on) and triamcinolone cream to be applied 2x daily.  He also told her to get into the sun.  I am praying this works, she has semi-formal next month.

As for triggers, I am not sure.  She gets this every year between December and February and it lasts until May or June.  There is one thing, she did have seasonal allergies that seemed to disappear when this began.   Good luck to your son, I know how you feel, my heart breaks for my daughter everyday and she is so good about it, rarely complains.  I will let you know she makes out with this treatment.   Regards, Jacque