PLEVA in children

[kelly]

I have an eight year old son who has PLEVA.  He was finally diagnosed correctly about 18 months ago after suffering with this for over a year.  The Dr.'s at first said it was chicken pox, flea bites, and eczema.  Anyway, what kind of treatment options are there?  I was told light therapy, but he is too young for that, it will increase his risk of skin cancer; tetracycline, but he can't have that because all of his adult teeth have not come in; chemo drugs, but he is too young for that.  I was told the only thing we can do is give him erythromycin and use Desonide on the "spots".  The EES helps if some of them are infected, which they do get infected, but once the infection is gone, it really does nothing.  The desonide really doesn't seem to help either.  I don't know what to do next.  Luckily his face has been spared but the rest of his body is just terrible.  They make these big holes, like ulcers and sometimes they are so deep I have to clean them with q-tips and peroxide.  They scar.  The other kids make fun of him and he is terribly self conscious about it.  Any help you can give us will be greatly appreciated.  Thanks.

[Rafael]

When he was 7 years old my son had PLEVA. Now, he is 11 years old and the disease continues, but in a very very mild degree. He is not conscious about the disease and his face has allways been spared. His oncles, friends, grandparents, etc. are not conscious too. I can not speak english with the necessary fluency to say Kelly that she must have hope, because this disease goes to less very slowly, but goes to less (some times there are news outbreaks of papules, BUT THE BALANCE IS ALLWAYS TO LESS). Drugs are not usefull except for pruritus, and can be dangerous. Your boy will be health in his adolescence and his grown and general health will not be affected. But your psychological wellfare (of Kelly) can be deteriorated, like the mine, if you can not forgott the disease. Even, if you see and count your son

[Alan Rockoff, MD]

Kelly:

It seems to me that most of what bothers you and your son are the red marks left over after the PLEVA spots become inactive.  These marks take weeks or months to disappear, but they generally do not "scar," in the permanent sense.

My advice is: Keep up the EES (erythromycin) as your doctor recommends.  Apply bacitracin ointment twice daily on all scabby spots.  Apply Vitamin E-containing cream daily on all red spots.  If your child scratches, provide him with Sarna lotion (OTC) to apply as often as needed, every 10 minutes if necessary.  This will cool the skin and prevent itching.

The prognosis is good, but both medical and emotional support are needed.

Best.

Dr. R

[tye121]

A related discussion, Where do you turn? was started.

[arvinpatel]

A related discussion, PLEVA in adults was started.

[amanda]

Kelly,
  My 3 year old son has PLEVA. He has had this for almost 4 months.At one time he was almost completly covered with lesions.
Even his little face. We have been going for light treatments at the dermatologist office. They were the only thing that helped.He
also had 2 steroid injections.He is doing well.I strongly suggest trying light treatments or sun exposure.My son is totaly unaware of how bad he looked.He just thinks he has bobos.I have hope that this will be over soon.I can not imigane him having to go to school with this condition.I know what you mean about the scars from infected lesions my son has them also but they are not as noticable now I believe they will continue to get better.
Again reconsider the risk factors associated with light treatment verses the relief it could possibly bring your son.
                           good luck and best wishes;amanda

[amanda]

Kelly,
  My 3 year old son has PLEVA. He has had this for almost 4 months.At one time he was almost completly covered with lesions.
Even his little face. We have been going for light treatments at the dermatologist office. They were the only thing that helped.He
also had 2 steroid injections.He is doing well.I strongly suggest trying light treatments or sun exposure.My son is totaly unaware of how bad he looked.He just thinks he has bobos.I have hope that this will be over soon.I can not imigane him having to go to school with this condition.I know what you mean about the scars from infected lesions my son has them also but they are not as noticable now I believe they will continue to get better.
Again reconsider the risk factors associated with light treatment verses the relief it could possibly bring your son.
                           good luck and best wishes;amanda

[kathi]

unfortunately, i have a close friend who also has pleva, and contrary to what the doctors tell you, the scars will become permanent. if you contact me at [email protected], she
can perhaps give you some direction or moral support.
Good luck

[Laura]

I just read  the question posted by Wendy,  I'm sorry you were diagnosed with Pleva (MuchaHabermann Disease).  Isn't it the strangest thing you have ever experienced???  I have had Pleva for, it's going on three years now.  It's been a  long three years, I wonder everyday if it will go away, and Wendy my life has not been the same since I had my first outbreak..  I have been living with it because my dermatologist doesn't seem to know what to do for it anymore.  He wants me to go back on the metho (chemo) to try to kill it again, I tried the metho about a year ago, it helped for a while.   They the lesions cover my whole body, and the have no mercy where they attack.  It has definetly been a very trying thing to live with, not to mention a very emotional time.  My husband has been very supportive.  I feel I  have the most unattractive skin around, it does nothing for  your ego, I try not to be vain, but it is bothersome.  The part that frustrates me so much is that they don't know much about it, and really have no answers for me, when I have so many questions.I will begin light therapy again, Tanning bed, it dries them up a little faster, then I will probably try the metho again, because spring summer is coming and I like to wear tank tops, shorts a bathing suit.  I hope you come back to this Wendy, we could talk.   Laura

[Wendy]

I am a 34 year old female and have just been diagnosed by a Dermatologist as having PLEVA, Mucha Habermann's Disease.  I had a biopsy and I still can't believe it.  I want a second opinion and don't know who specializes in this.  I made a appointment at the U of M Medical Hospital.  Do you have any suggestions for me?  I feel like my life will never be the same.  I have it all over and some on my face.  I have had it for 1 month now.  How much worse will it get?

[Laura]

i just read your your question about PLEVA in your young son, my heart aches for him.  I am 38 and two years ago was diagnosed with pleva also known as muchahabermann disease. It is a terrible thing to have, I have waves of outbreaks, and currently have a good one going right now.  I had a biopsy to determine mine.  I have tried all the drugs you described and none of them worked for me, the light therapy only dried them up a little faster.  they take so long to heal, being an adult woman, it is very frustrating and embarrassing to have, i can imagine your sons pain.  I'm sorry for him.  There are no answers, everywhere I have gone only tells me what I know already, but no real answers.  I tried the chemo, it works for a while then it does come back.  I tried the chemo because my body was covered, I mean covered , it has no mercy this pleva, i have had a few outbreaks on my face, thankyou God that it has spared my face unlike the rest of my body.  I hope the mom who posted this question comes back to here, we ,could talk.laura