|February, '00 | Briefing
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|Five Year-Old Sons Story
I'm the mom of a 5 year-old son with psoriasis. We took him to the derm in April and was told he had psoriasis. We received medications and brochures. We have tried several different medications and COMBINATIONS of medications. He's having a flare currently.
I found your website on New Year's Eve, when I was feverishly searching for DOCUMENTATION to send to the Y so my son could swim. Needless to say the derm's office was closed so I couldn't get a note faxed from the doctor's office. The Aquatic Director left me a voicemail saying she was concerned about my son swimming and some of the staff had concerns about him being in the pool. This was quite frustrating since I thought I had resolved the situation on Wednesday (after he was not allowed to swim on Tuesday). On that Tuesday before New Year's Eve, the lifeguard thought he had chicken pox and mosquito bites. My son proceeded to tell them it was psoriasis but I guess they thought "what does a 5 year old know?" Here I was in my office on New Year's Eve trying to explain that he is not contagious and they are not open wounds. I am crying mid-sentence.
And at school . . . boy, can kids be mean. There's one little hellion in my son's kindergarten class who has made fun of him a few times. My son was sitting in the bathroom after his bath and looking at his skin. He said, "I wish this psoriasis would just go away; I just wish I could die," and began to cry. I began to cry. I didn't dare let him see me, but it was the most pain I've felt as a parent.
Neither my husband nor I have P. So far my daughter doesn't either (she's 4) and I just keep holding my breath hoping she doesn't get it. This isn't anything you can put a band aid on or a boo-boo you can make feel better.
Putting medicine on MANY MANY places all over his body and his scalp, and 2 times per day EVERY day I might add, is SO frustrating for him. I had to talk to his teacher to request that he not be sent to the bathroom with other children because children were asking him "What's that on your skin?" over and over again. His teachers at school have been great about accommodating that request.
Today we went to his basketball game and I was saddened as I watched him scratch and scratch. And I'm sure other parents noticed and I can only imagine what they were thinking: My kid is playing with a kid who has lice!
As I mentioned before, my son is currently having a flare. The derm referred us for light therapy. We started the light therapy this week. We are also putting coal tar ointment on and he is sleeping with it on. We are taking him to light therapy daily and that is a real time commitment given the fact that I have a full-time professional job and so does my husband. Thank God for understanding, flexible bosses. The light therapy, after only 4 days, seems to be working. But so did the other medications initially. We hope we continue to see progress with the light therapy. We are in the process of getting one for home approved by the health insurance.
I apologize for rambling but I guess I'm typing this e-mail as a means of release for myself. I know we have a long, never ending road ahead of us with his P and the increase in taunting and teasing scares me. My son has a big heart and sometimes wears his feelings on his shoulders. Thanks for your website. As a parent of a child with P it has been helpful. I''ve especially enjoyed reading some of the archives. -SH
Eds Response: Im very glad we were here for you, SH, and only wish there were more concrete things we could say about parenting a P-kid. I imagine, since you found us around New Years, that you read Dedos story. I havent heard back from her about how the light treatments are faring for her 6 year-old daughter, but she did say she was going to move, so she may be off-line for now.
What you are going through is never easy. Even Dedo, who lived with her own P as a child, has struggled. I guess the trick is to help the child accept his condition, to regard it as it should be regarded, and not as others regard it.
I have high hopes for the National Psoriasis Foundations new initiative for P-kids. They havent provided many details and Im sure things are still being planned. I sincerely encourage you to join NPF on behalf of your son. While the web site is always there and an invaluable resource, it pays many times over to be on their mailing list as a member. Annual dues are whatever you can contribute.
Until you join NPF and receive some of their brochures, you might want to download and print out some copies of this file at their web site: Faxing this to the unknowing who may be trying to keep your boy out of swimming pools and other environments might help.
And of course, please stay in touch with us! Good luck. -Ed