Saturday, June 25, 2011
Well, after a couple of changed appointment times, we finally went back to the dermatologist. I don't worry as much about me. I have Rosacea. Honestly, until I started treatment for it, it wasn't all that bad. It's only since I've been using prescriptions that I've had crises. I was happy to get back to report that Differin was NOT working for me but making things worse. Dr. K prescribed me 2 different topical antibiotics that should help reduce the inflammation. My face is really bright red. I look sun burnt. I'm not. I find it fascinating. I don't really care what other people think, and I do use make up to feel better about it, but I don't worry so much about it like some people do. I guess I'm just not that insecure.
My son's issues... different story there. His psoriasis has been spreading in ways that were really freaking us out. Right now it's taking about an hour to properly cream him, and every night we're finding new areas that are trying to erupt. It's very frustrating. Despite using a steroid carried by oil for his head, his head was just so bad! We were instructed to use this twice a week with a flare; we used it two days in a row and it didn't seem to touch much of it. I spent a very long time combing through his scalp, using a brush to gently coax the skin up, alternating with the comb. The next day brought a snow storm of flakes. So, I wanted to bring up Enbrel to our doctor. I know that Enbrel is very, very expensive. I also have 2 boxes in my fridge. If he started at a small dose, say .4ccs, I could have enough medicine for 2 months. That should be enough of a trial because Enbrel is like a miracle. Or, they also use Methotrexate for psoriasis. I'd really rather use the Enbrel because MTX can affect the liver and he would need frequent labwork, but it's worth a thought.
I expected a fight. Instead, the doctor brought it up to me upon entering the room and seeing his head. However, as ready for it as I thought I was, she brought up a few things that I hadn't considered. The biggest point was that there aren't very many meds for psoriasis, and so there won't be many choices later in life if we exhaust this one early. Also, since "kids don't get psoriasis", very little research is done on the effects of these products on children. Granted, we have been down the Enbrel path before, but of course the arthritis that my daughter has made it easier to justify. So, I am at a crossroads with this. The main eczema creams (Protopic & Elidel) did nothing for him. Halobetasol is about the only thing that works for him; the one that we have tried to switch to did NOTHING for him. I'm tempted to try it again, but this time use Aquaphor over it. This way, we'll be switching off of it for a while and giving his skin a break from the Halobetasol, and hopefully the Aquaphor will keep enough moisture in to help. We tried the other one without Aquaphor before. Since we added it to the Halobetasol it seems to work better. I dunno. She ended up doing steroid injections into 2 different areas. His knee was thick, scaly, really bad and itchy. His head... one of the many plaques up there was really bugging him. So, she chose one area on his head and the knee. Oh, did he sob :( If I didn't understand the power of steroids and know how much they could help, I wouldn't have agreed. Poor little man didn't want to hear it. He sobbed for quite some time. Once he felt better we went to the beach :) The knee looked purple & black there. Kind of scary! Only a few hours later the knee looked wonderful! While it isn't clear, it certainly looks much better than it did.
The other big DOH! with this is called Olux-E. She gave us this to try. Now, if I were a normal person that didn't research the heck out of everything, I'd probably have just used this stuff blissfully unaware. Thank God, I am not a normal person. I started looking into this tonight. What I found on the Olux-E site was this: "Use in pediatric patients under 12 years of age is not recommended because of the risk of HPA axis suppression.
After two weeks of twice daily treatment with Olux-E Foam, 7 of 15 patients (47%) aged 6 to 11 years of age demonstrated HPA axis suppression. The laboratory suppression was transient; in all subjects serum cortisol levels returned to normal when tested 4 weeks post treatment." They say that with kids 12+ those symptoms occurred much less often.
What is HPA axis? Well, I haven't exactly figured that out yet, according to this downloadable PDF file, it can appear with or without any symptoms, and it can be fatal. According to the Wikipedia entry, "The hypothalamic-pituitary-adrenal axis (HPA or HTPA axis), also known as the limbic-hypothalamic-pituitary-adrenal axis (LHPA axis) and, occasionally, as the hypothalamic-pituitary-adrenal-gonadotropic axis, is a complex set of direct influences and feedback interactions among the hypothalamus, the pituitary gland (a pea-shaped structure located below the hypothalamus), and the adrenal (or suprarenal) glands (small, conical organs on top of the kidneys).
The interactions among these organs constitute the HPA axis, a major part of the neuroendocrine system that controls reactions to stress and regulates many body processes, including digestion, the immune system, mood and emotions, sexuality, and energy storage and expenditure. A wide variety of species, from the most ancient organisms to humans, share components of the HPA axis. It is the common mechanism for interactions among glands, hormones, and parts of the midbrain that mediate the general adaptation syndrome (GAS)."
So, I guess that is one less medicine we will be able to use. The side effects are absolutely terrifying. We have enough medicine worries with the meds that my daughter has to inject to feel somewhat normal; we shouldn't have to deal with this for skin problems! Very frustrating.
At the moment we are choosing to not focus so much on this. We are very excited to be going to the Juvenile Arthritis Conference! We will be in Washington D.C. next month for about a week. We plan on visiting several Smithsonian museums, the National Zoo, of course see the historical sites, and then on the way home we'll go camping! I NEED a night or two in the mountains. We found out that we can camp at the base of the mountain that I will one day call home. I could very happily live in a cardboard box here. My heart belongs in God's land where I feel more connected. I feel at peace, at home with the mountains, the trees, the wind on my face. My heart just soars seeing the sun come through the trees in the forest a certain way. And the waterfalls? Ahhhh... Home. Yup, I'm a sucker for nature. It won't be long now :)