School is Mistaking Daughter's P for Head
Mr. Ed Dewke: Hello. Like everyone else I feel compelled to write. That's probably because after discovering your web site I stayed up until 4:00 a.m. reading all the old mail [Archives]!
The good: I am 24 and have had P since I was 5 years old. Nineteen long hard years. I used to think I was afflicted with a terrible disease. I now thinkbased on pictures I've seen on the NPF sitethat my P has mellowed with age. I haven't been to a derm in about 5 or 6 years. Can you guess why? I knew you could. (Bad experience with the derm ... the med wasn't working anyway....) So I just live with it. For the record: Stress doesn't trigger an outbreak for me, and pregnancy did get me 100% clear but it was short lived. The P came back almost immediately after delivery. Natural sunlight and tanning booths that offer UVB and UVA have always helped during the 'bad' times. Also, swimming in a pool helps me.
I am very happy to find this community, and I am ready to join Tim at the beach (from Archives: End is Nigh) ha-ha! I am glad to finally be educating myself.
The Bad: My six year old daughter has just been diagnosed with P. It just came on her one spot, then two. Finally I said, "You know, that looks just like my P." Five weeks later, she has lesions on her head, face (one right on the lower edge of her eye, others on her cheeks), neck, torso (it's not so bad there), back (very bad), arms, buttock, legs (P on knee is cracked down the middle), and feet. So basically, head to toe, she has various sized lesions and very bad itching. Her lesions display hard yellowish scalesnot the light flaky typewith swelling, redness and that raw look around the edges.
I'm sure now you understand my sudden desire to know everything and try everything. I guess I didn't care as much when it was just me, but to see her suffer is breaking my heart .
She is on a two week course of topical steroid ointment. It's called IC Fluocinolone .025%. It's softening the scales. Her pediatrician prescribed it. She also told me to give her Benadryl® for the itching. Coal tar shampoo twice weekly. My daughter has an appointment at U of M derm center next week.
The Ugly: I have to say that growing up with
P is difficult. I personally have MANY bad memories from school.
It's true that children can be so cruel. Also the uninformed
educator can be cruel. School just started and my daughter has
had many inquiriesWhat's that?from her classmates.
I did what I thought was a good thing: I went in and discussed
my daughter's P with her teacher. We asked the school nurse
to come talk to the kids, which she did. (Although, I think
she was not sure what she was supposed to be talking about since
she never even said the word P. She just talked about health
in general, what kinds of foods to eat, etc.) The nurse said
that she noted my daughter's P in her record and included some
info about P that I had brought.
What about all the time I have spent there dealing with these peoplejust to make sure they know what she has? I have no choice but to conclude it was a big waste of time!
She doesn't have lice. I repeat, she does not have head lice. I know this because I check her scalp daily.
Yet, the principal said he checked her, and according to him, she does have lice.
I could have no complaint if my daughter did in fact have lice. However, I performed the combing and close scrutiny of her hair and found nothing but the patches of P, and flakes, and more flakes. So, if the guy even bothered to check her head he must not know what lice look like.
So, I got all pissed off because here I have been trying to make things easier for my daughter than they were for me.
Did they forget my visit and explanation about P? Does her record not get opened prior to her being dismissed on a false diagnosis? Don't they see it on the rest of her body? Or, perhaps I should be asking, Why can't I find these lice or their nits?
I shouldn't have, but I went to the school. (If he considers my daughter's P a form of lice and she can't go back until it's gone I hope he's prepared to help us all find a cure.) I asked to see both him and the nurse. It turns out the nurse wasn't even in today, so I got to speak with the brainy principal all by myself. I told him that my daughter does not have lice, she does have a chronic skin condition called psoriasis. It causes itching. He looked at me like I was the idiot and said, "I know what psoriasis is. I can see it on her arms." Ok so why is she being dismissed because of head lice? (Mind you, I had just looked through my daughter's hair before coming to the schooljust to be safe.) A huge screaming match ensued . The half-way point being that the school nurse will meet me and daughter in the principal's office before school for a lice check. Then when the nurse tells this jack-ass that my daughter doesn't have lice, she has P, then he is going to give me and my daughter a much deserved "I'm sorry." At least that's what was said in his office this afternoon.
One other thing for the ugly: The makers of Exorex should be ashamed of themselvesashamed about the kind of marketing they are doing. My well-intentioned flakeless brother saw a Maury Povitch show on which people talked like Exorex had cured their P. He got excited and told me about it in front of my daughter, so she got excited, too. I found the Exorex web site and also the Hall of Pshame (great info [see Other Places]). I was disappointed to read that Exorex is just coal tar. Needless to say my daughter was disappointed, too.
So that is the good, the bad, and the ugly.
Thank you for listening. -Dedo (dee-doe)
Ed's Response: Your daughter has you going for her, and that's a lot. I've said here before that I wished, if some children have to have P, that they have in their environment a caring adult who also has it. P can be alienating enough for a well-adjusted adult, but for a child whose world view is formulating with every experience, P can be insidious.
I also applaud you, Dedo, for your diligent search for knowledge. Hopefully you have learned that enough new therapies have emerged to make your return to a P-savvy derm worthwhile. I'm hoping, when you visit the derm next week, he'll have encouraging words for both your daughter AND you.
I had to shake my head throughout your head lice story. My daughters have been going through the same thing with their six year-old daughters here in central Kentucky. One of my granddaughters missed four days of school two weeks ago because examiners kept seeing nits' in her hairthis despite two trips to her family doctor that both resulted in "no lice" notes. Both mom's finally set the schools straight, but nana and papa (me) came darn close to getting into the fray. Neither of my granddaughters has P (knock on wood) so our situation was different from yours.
I'm sorry about the two of you becoming excited about Exorex, but pleased that you did your homework before spending a lot of money on little-or-no relief.
Let us know, Dedo, how things turned out in
the principal's office! -Ed