Psoriasis

This blog is a product of ta recent trip to Florida with the girls. We attended the Psoriasis foundation national conference where we met other children and families dealing with Psoriasis.

Eliza created PS Kids Connect to keep everyone connected after this event. I hope that what we share here will support others dealing with the physical and emotional effects of the disease.

The girls were 7 and 5 when Psoriasis entered our lives. I'm not sure exactly where it all began? I think it was a small red bug bite (or so I thought) on Katelyn's leg after summer camp.
Gradually over the next few months she had more "Spots" and her sister developed them as well. Last fall (2007) we were searching for answers. Nothing really made sense. Why did her sister also have the spots? Was it contagious? Why didn't I have any "spots"? We tried creams, Allergists, Dermatologists and of course our pediatrician. We had several different guesses at what was wrong. People stared, we cried and I struggled with so many different feelings. We had parents questioning our attendance at school and spent months on a strict gluten free diet.
In December it was obvious that Carly was now much worse than Katelyn. The lesions covered her entire body, her ears were covered inside and out and her scalp was covered by THICK lesions. The daily bumps and bruises of childhood led to pain and bleeding. Emotionally this was tough for everyone!

We found a great Dermatologist who diagnosed Strep and explained how Psoriasis is most commonly triggered by Strep. (Stress and Injury are two other triggers) He did a biopsy on Carly's spots and prescribed UV treatment three times a week for three months for both of my children. We also began trying tons of different topical medications, nothing was helping. Both girls were treated for strep on several occasions and in February we thought the UV Treatments were helping. Then suddenly they were worse! Strep again!
When everything else failed, we decided to take things to the next level. Our Dr. called some colleagues and we soon received a call from Children's Hospital of Philadelphia (CHOP), who wanted to see both girls right away.

By the time our appointment arrived, Carly was showing signs of Psoratic Arthritis. The appointment was rather intense and we were given some medication options. These were not nice options. They are serious drugs with serious side effects. We needed to be sure. Sent home with the information needed to make an informed decision. We researched the medications and chose to begin Methotrexate (MTX) Injections right away. Of course right away meant a few weeks .. however long it would take for the physicals and blood work to get a baseline for monitoring.

Our first injection for Carly was in the Pediatricians office. I didn't think I would ever be able to do it alone. She was wiped out after that injection. Just not her self and tired. Our next injection was at home and went rather well. I soon learned about the auto injector you can purchase to insert he needle in and that made it so much easier!
Soon, Carly started loosing her hair and Katelyn was becoming very self-conscious and withdrew. We decided to start Katelyn on MTX for concern for her emotional health and a fear she woudl worsen. Carly was soon fitted for a wig and before we knew it school was out for the summer.

We are now 4 months into our treatments and the girls are finally clear. Since the injections began we have seen few side effects and no complaints of sore joints.
There are so many details I can share about this journey. The thing to remember is that everyone needs to make the decision that is right for them. Finding the right Dr. and facility to treat your child is one of the most important thing you can do. And,as always, rust yourself to do what is right for your child!