Preston's Skin Update

The "skin bed." Preston goes to bed with clean sheets and wakes up with skin flakes all over them. I gathered them into a pile for a picture.

A bad morning. Preston is miserable because he cannot walk by himself and he hurts. He had just finished asking for some pain medication before I took this picture.

Some mornings he would have to walk with his mini cane because he couldn't straighten out his legs.

So, Friday was finally Preston's day to see the pediactric dermatologist at Primary Children's Hospital. Guy and I took Preston to see Dr. Vanderhooft. She is the only pediactric dermatologist in Northern Utah and we have been waiting for over 2 months for this appointment.

Preston has suffered terribly with his skin for several months now. As you all know we have used creams, lotions, salves, ointments, both perscription and non-perscription and we have seen several doctors and spent a lot of money trying to help him with his health.We always knew he had allergies and eczema (atopic dermatitis) but starting in Feb-March, his skin looked and behaved differently than ever before. Something triggered his skin to start producing tremendous amounts of skin cells. He became even more dry than before - he has cracked lips, nose, earlobes, eyelids, tops of toes, bottoms of toes, sides of his hands, behind his ears, heels, etc... He sheds a tremendous amount of skin each night ( like a snake - you have to see the pictures to believe it). His body is hypersensitive to the touch. He is a walking open wound. Some days he can barely walk and uses a cane to get around. Other days he wakes up crying in pain, cannot walk, and has to be carried to the living room. He gets terrible itchy attacks and cannot stop scratching the itch, no matter what you use to distract him. We have spent many hours of many days just rubbing his skin for him and helping the pain and itch to go away. Furthermore, Preston cannot regulate his body temperature. He is always too cold or too hot - rarely is he just fine for long. He cannot fall asleep by himself. We have to rub his arms, legs and other problem spots to help him calm down and finally sleep. Most nights it takes about 45 minutes to an hour to calm him down and get him to sleep. Then, he wakes up itchy, bleeding and crying at least once a night. And then he has to be calmed down and put back to sleep all over again. Needless to say, we are sleep deprived at this house. Preston is super-tired, or having an itchy attack, there is hardly any inbetween.
So, here is what happened at PCMC. The doctor and her assistant were great. Dr. Vanderhooft perscribed what she calls Preston's "Rescue Kit" to help stabilize him. This includes an oral steroid, a stronger oral antibiotic, and a stronger oral antihistimine for the next 2 weeks. They also took a biopsy and a culture of Preston's skin. She says she has seen severe skin conditions like this before and called his condition erythrodermic dermatisis / erythodermic psoriasis (auto-immune diseases). Once he is calmed down, she is looking to treat him systemically. She mentioned putting Preston on low doses of a a systemic drug they use to treat adult psoriasis and cancer called methotrexate (I have said for months that his looks like a weird form of psoriasis). Along with this, another drug called Cellcept which is an anti-rejection drug for people who get organ transplants (Guy has said for months that Preston was acting like he was allergic to his own skin - looks like the Dr. is thinking the same thing.)

We know these sound like extreme measures, however Preston is suffering and miserable. The doctor says she will use low doses on Preston as he is a child. We will do whatever we can to aid in his relief. His skin condition has been debilitating. Most of you have witnessed his pain. He couldn't make it through more than a few hours of school a day in May, and I think he would not be able to go back to school in the Fall and do well unless drastic measure are taken to get his condition under control.