Editor’s Note: Young Chase has already faced several years living with psoriasis. His quest for treatment has been a challenge not just for him but also for his family and physicians. Here are excerpts from his mother’s open letter about this search for effective treatment. We have decided to publish this extensive chronology because so many families affected by psoriasis will be able to identify with it.
PLEASE NOTE: While very few psoriasis treatments have been approved for use in children, physicians are free to prescribe them “off label” to children who need them. We have decided to name medications in this piece because it provides useful context, but remember that doctors are working with limited information when treating children, and different physicians would treat Chase differently, which only adds to the complexity of developing a treatment regimen for a child.
My name is Jennifer and psoriasis is a disease that breaks my heart on a daily basis. I have a seven year-old son who suffers from severe psoriasis. I am writing his story so everyone can understand that psoriasis is not just a skin disease, but a life altering disease. There is a great
need for further research for a cure.
Chapter 1 - The beginning
I will start from the beginning...when Chase was a few months old I noticed a dry spot of skin on the back of his arm. I was told it was only dry skin. As Chase grew, so did the spot. In the summer of 2005, when Chase was three years old, the spot developed red borders. A pediatrician thought the spot resembled ringworm, so Chase was treated for ringworm. After two weeks of treatment the spot had not responded. Chase's pediatrician then referred him to a dermatologist.
Chapter 2 - First dermatologist
The first appointment with the dermatologist seemed to go well; as it turned out Chase did not have ringworm, but was then diagnosed with eczema. Treatment for his eczema consisted of a moisturizing lotion twice a day. After a few weeks I noticed Chase had developed sores on his scalp that resembled cradle cap. Back to the dermatologist we went. Finally the correct diagnosis was delivered, although not the one I wanted to hear. Chase had psoriasis. A prescription steroid shampoo (Clobex), and a non-steroid topical (Dovonex) were prescribed. [Editor’s note: Clobex contains a powerful (“superpotent”) steroid. The Clobex shampoo prescribing information states: “Clobex® Shampoo is not recommended for patients under 18 years of age. Children have smaller body sizes and have a higher chance of side effects.”] As winter approached, Chase's psoriasis had grown worse despite the treatments. When Chase went back to his dermatologist the next month, his body was covered. His dermatologist advised us that due to his young age of three, topicals were the strongly preferred line of defense. I asked about UVB treatments, but due to his age and inability to remain still, UVB would not be available to him until he was able to be still and remain in the light box by himself. Chase and I were given the news that psoriasis was something he would have to deal with for the rest of his life so we should get used to it. Was that ever an understatement. Chase was given a prescription for an antibiotic since his scalp appeared to be inflamed and very irritated and he was to continue the topicals. I left the dermatologist office that day feeling helpless. I did not want Chase to see me upset, so I put on my happy face and went on.
Chapter 3 - Psoriasis takes hold
The nights were the toughest. Chase's skin was so itchy that he could not sleep and would wake through the night crying. We got through the nights by applying layers of over-the-counter moisturizers, and then I would wrap him up in a blanket and hold him. We would then talk about funny things or tell stories to take his mind off of the itching. He would fall back to sleep; in the mornings there would be blood on his sheets from the intense scratching he did in his sleep.
Psoriasis had started to take a toll on Chase; he was constantly tired from lack of sleep; family and friends began commenting on how peaked and sick he looked.
Chapter 4 - Taking matters into my own hands
One evening after bathing Chase, as I looked at his body covered with sores, I could no longer hold in my emotions. With tears in my eyes, I told Chase I hated psoriasis and that I was sorry he had to deal with this. I made sure he understood that he was not alone and I promised him that "mommy would take care of him" and that together we would defeat his psoriasis.
The very next day I took off from work and made an appointment with Chase's pediatrician. I was unsure of what his pediatrician could do, but I needed him to validate that my child needed help. Chase's pediatrician had not seen Chase since he had referred him to a dermatologist. Once we were in the exam room, I undressed Chase then sat him on the exam table. I anxiously waited to see his pediatrician’s reaction when he walked into the exam room and saw Chase covered by psoriasis; 90% of his body was involved and his hair had begun falling out. The pediatrician entered the exam room smiling, but his smile immediately turned to a look of disbelief. He looked at Chase and then he looked at me with true compassion in his eyes almost like he could feel the pain.
Holding back tears, all I could ask was "can you please help my baby?" His response was "no I cannot. Chase needs to be seen by a Pediatric Dermatologist at a Children's Hospital."Chapter 5 - Pediatric dermatology
As it turned out, it would be a four and a half hour trip (each way) for us to see his first pediatric dermatologist.
Chase had his first appointment in January 2006, one month after his fourth birthday. We set out at 5:00 am to make the 10:00 am appointment; Chase thought it was funny to be leaving when it was still dark outside. The doctor took her time and explained our options. We learned there are options for children with severe psoriasis that does not respond to topical treatments. But for the first month, she prescribed triamcinolone cream to be applied in the morning and coal tar for application at bed time. She also prescribed ammonium lactate cream for his scalp, to soften the plaques on his scalp so they could be lifted off, allowing the medications to penetrate the scalp and not be blocked by the thick plaques.
At the follow up appointment a month later, Chase's psoriasis had not responded like she had hoped. We then discussed Soriatane [acitretin], a systemic psoriasis treatment [link address: http://www.psoriasis-cure-now.org/methotrexate-cyclosporine-acitretin.php ]; we talked about the side effects and the benefits. She told me to go home and research Soriatane, and then if I felt comfortable she would prescribe it.
After a few weeks of research I decided to let Chase try Soriatane. After Chase had some preliminary blood work done to check his levels, the doctor gave us the go-ahead to start Soriatane. Chase started on a relatively low dose, one 10 mg capsule every other day. At first it was difficult to make a four year-old swallow a pill. I told Chase to think of the pill as a piece of food and swallow it. He is a pro at taking pills now, and prefers pills over nasty tasting liquid medications. Chase also continued the prescription topicals, and after one month on Soriatane my baby's skin was 80% clear, his scalp looked great with hair re-growth. I cannot describe the feeling that overcame me as I held Chase, rubbing his back.....and for the first time in a long time his skin was smooth. When I took Chase back for his check up and monthly blood work the doctor was very excited to see her little man (as she calls him) doing so well. His blood work came back fine and Chase continued Soriatane throughout the summer.
Chapter 6 - A year later
Chase's psoriasis remained in remission throughout that summer. Then as fall approached and the weather turned cold and dry, his psoriasis rebounded (though not as severely). The doctor raised Chase's Soriatane dose to 10 mg per day. The higher dose maintained the level of Chase's psoriasis flare, but did not completely clear him. The flare was moderate and his skin still looked great compared to where he had started. Chase went for check-ups and blood work every other month for that first year; he became a pro at having his blood drawn. He would climb up in the chair, hold his arm out and tell the phlebotomist "now I might cry but that's okay, I know it hurts a little," but he never cried. I am so proud of him; he has been through so much and seems to understand things that I cannot fully explain or understand myself.
Chapter 7 – Chase loses his dermatologist
In May of 2007 we found out that Chase’s doctor was moving across the country to begin a two year Fellowship. Chase went to see her one final time before she left. She sat down with us and we planned out Chase's future treatment. Since Chase's psoriasis responds well to sunlight she prescribed a Narrowband UVB [link address: http://www.psoriasis-cure-now.org/uvb-puva.php ] light therapy bed for home use. This is a 6 foot tall standing unit that resembles a tanning bed. We would decrease Chase's Soriatane dosage slowly, while controlling or maintaining his psoriasis with UVB treatments. By the beginning of 2008 we hoped to have Chase completely off of Soriatane.
Chapter 8 - UVB home therapy and insurance issues
The doctor wrote a letter of medical necessity to our insurance company. After looking into this matter I discovered that there are no Durable Medical Equipment companies in our insurance network that sell UVB units; therefore we had to go out of network. After contacting the insurance company and explaining our situation, they agreed to pay 80%, rather than the 60% they typically pay for out-of-network purchases. A few weeks later I received a check from the insurance company for only 60%. Once again I contacted the insurance company and the agent asked if I had received an approval code for the 80% coverage from the last agent. I had not so the process began again. Finally I received an additional check from the insurance to make up the difference of 60% to 80%.
But here's the kicker: our insurance pays 80% of its allowable amount, which was about $1,000.00 less than the retail cost. Since the light box company was not in network, they were not required to write off the difference. (I felt that since the insurance company had no UV device provider in network then the insurance company should have covered this difference.) The UVB unit price was $3,720.00 and insurance paid 80% of $2,789.00 (its allowable amount). We had to come up with $1,488.62 to pay the difference. We had a huge family yard sale and raised enough money from that and donations to pay for the UVB bed. Chase received the UVB bed in September of 2007 and began treatment immediately. Chase started UVB treatments at 30 seconds every other day raising his time by 15 seconds each session. [Editor’s note: as with all the other prescription dosages contained in this essay, UVB dosings must be determined specifically for each patient and closely monitored by a physician.]
Chapter 9 -Chase starts Kindergarten
In September of 2007 Chase began Kindergarten; I think I was more nervous than he. I had prepared Chase's teacher by giving her information on psoriasis [link address: http://www.psoriasis-cure-now.org/school-psoriasis-fact-sheet.php ] and a list of known side effects from the Soriatane. The major side effect that Chase experienced was dry mouth and thirst; his teacher was wonderful and kept water in class for Chase. I also let her know that if she should see Chase lightly smacking his arm or leg it was okay; that is his way of stopping an itch without scratching and damaging his skin.
Chapter 10 - Search for a new pediatric dermatologist
Since Chase was still on Soriatane, monthly blood tests were needed and were continued with a standing blood work order by Chase's pediatrician. Over the next several months, we tried out two pediatric dermatologists. One wanted Chase to begin on Enbrel, a biologic approved for adults with moderate to severe psoriasis [the FDA is currently considering an expert panel’s recommendation that Enbrel be approved for minors [link address: http://psoriasis-cure-now.org/enbrel-for-children.php ] ]. I agreed to start the insurance process with the understanding that if insurance approved Enbrel I would then consider whether to start using the biologic. In the end the insurance company made the decision for me. The insurance company had found a loophole; although Enbrel was approved to treat juvenile idiopathic arthritis [formerly called juvenile rheumatoid arthritis], it was not approved to treat psoriasis in minors. In the end, after two levels of appeals, several letters and pictures, Chase was still denied coverage for Enbrel. [Editor’s note: Insurance coverage of psoriasis treatments for children, including biologics, varies by insurer, often on a case by case basis.]
Meanwhile, because I had so much trouble reaching or hearing follow-up from this doctor, we decided to keep looking. The next pediatric dermatologist Chase saw was concerned about Chase still being on Soriatane. She ordered a bone scan to make sure that the medication had not caused any irregular bone growth or premature growth plate closure. The bone scan came back fine, but that doctor, too, was disappointingly inaccessible, so we continued our search. Chase continued to follow the plan that his doctor had mapped out months ago. I took Chase in for blood work monthly; I slowly lowered his dose of Soriatane and continued his UVB treatments.
Chapter 11 - The third replacement - finally a new dermatologist
In January of 2008 I decided to try a local dermatologist who was not a pediatric specialist. As it turned out she was wonderful and willing to treat Chase's psoriasis aggressively if needed. The doctor agreed it was time to taper Chase off of Soriatane completely. By March of 2008 Chase was completely off of Soriatane. Chase's skin remained mostly clear with UVB treatment. He did have a rebound but it was not nearly as severe as when he was initially diagnosed. Chase's scalp psoriasis is difficult to control with UVB treatments; his scalp had rebound and was covered with thin plaques that burned and itched constantly. The doctor prescribed a trio of prescriptions for Chase's scalp: Derma-Smoothe Scalp/FS; Topicort, a topical steroid; and Clobex shampoo. Chase was also prescribed Taclonex [a Dovonex-steroid combination] for his body and Protopic [an eczema treatment sometimes used off-label for psoriasis in certain body areas] for his face and groin area. [Editor’s note: the Protopic prescribing information includes, among other warnings, recommendations to avoid tanning beds, and when treating children, to use the milder formulation (0.03%).] The new topicals seem to work well; they have not cleared Chase's stubborn psoriasis spots but have diminished the redness, making them less noticeable.
Chapter 12 - Altering life around treatment
Treatment is a constant struggle each night for Chase. He dreads having to stop playing to begin treatment which consists of applying two topicals to his body, skin hydrating lotion, and two topicals to his scalp. Then he sits in front of me as I comb the dead skin from his scalp and hair so it does not fall off on his clothes or desk at school the next day. After the topical and combing treatment, Chase stands in front of the UVB unit every other night, now for four minutes each side. Those eight minutes of UVB treatment seem to last forever to a seven year-old wanting to watch cartoons. Then in the morning before school I wash the oil from Chase's hair, combing out any dead skin as best as I can from his scalp and hair. Then I apply skin hydrating lotion to his face and scalp. Sometimes if Chase has chosen a dark shirt to wear to school and his flakes are bad, he will change his shirt to a light color so the kids won't notice any flakes on his shirt. It is a tough pill to swallow seeing him take off his favorite Spider-Man shirt because it's black. Chase often gets frustrated and I always give him the option; I simply explain to Chase that if he does not want to continue with these treatments he does not have to. He understands that when he stops treating his psoriasis, it most likely will return with a vengeance. I then walk away and let him decide if he wants to continue. Chase usually then grunts and walks over to me or his light bed as he calls it and says “I am ready.”
Chapter 13 - Accepting his life with psoriasis
I think psoriasis has become such a part of Chase's life that to him his condition is part of who he is. Chase seems to handle his psoriasis better than I. He gets irritated daily but bounces back well. But he also says he is not normal and I assure him he is. Having psoriasis has made Chase more compassionate to others who may have a disability. He tells me often that he met so and so in school and "guess what mommy they have psoriasis too!" I always say "see I told you, you are not alone." Most of the time the child whom he is speaking of does not have psoriasis, only dry skin, but I don't have the heart to tell him. When someone asks him about his skin he replies "oh, it's just my psoriasis" or if he is aggravated he says "a shark bit me" then goes on. You would think his friends or other kids would ask him about his skin but the truth is it is the adults who ask him. I get irritated when an adult looks at me or him and asks "what's wrong with your skin?" This actually happened and I bit my tongue and replied "oh, he has psoriasis" when what I really wanted to say was "what's wrong with you asking a child that?" I don't mind asking me in private, I understand their concern. I don't like the word "wrong" used in front of Chase..I don't want him to feel as if something is "wrong" with him. Another thing that is not as irritating as it is funny, is when I respond back to someone that Chase has psoriasis, most of the time they say "oh, my child had that when they were little" or "have you taken him to a doctor?" I want to respond "thanks I never thought of taking him to a doctor" duh! Or “no, your child did not have psoriasis;’ while for some it might go into remission, psoriasis does not go away, it is a chronic skin disease with no cure.
Chapter 14 - My feelings about Chase and his psoriasis
Worry about Chase consumes me; I worry about him every day. I worry about him growing up, and will kids tease him? I worry about his self confidence, I want him to have enough to tell the kids about his disease and make them understand. I worry that parents who see Chase and don't know that psoriasis is not contagious might keep their children away from him. I worry about my son being on systematic or biologic medications for the rest of his life; there are so many possible side-effects and no one knows if 10 or 20 years down the road he won't develop complications related to their use. I look at my son every day and wish he didn't have to deal with this disease; it breaks my heart. As I sit here and write this emotions of anger and sadness that I can't describe go through me. When I feel my heart break I have to remind myself that there are mothers in this world that have a child with a terminal illness and that they would trade places with me and Chase in a heartbeat. I know psoriasis, if controlled, is not life threatening, but it is life altering and I am going to make sure it alters my son's life as little as possible. I am going to educate his teachers and friends and his classmate's parents and anyone else who will listen. Then when he gets old enough he can continue to educate people and decide his own treatment plan.
I don't know what Chase's quality of life would be like today had we not found that first pediatric dermatologist. She truly went above and beyond to help improve Chase's life. I cannot express in words the gratitude we owe to her. She brought hope and encouragement back into my life. She has made me realize that there are doctors in this world who have compassion and she taught me to do research and bring that new knowledge with me to appointments. I also have learned to trust my mother's intuition; if you feel something is not right then do something about it. It is sad that I had to drive eight hours to get my son his initial treatment. I always thought West Virginia was just as up on things as everywhere else -- I guess I was wrong. There is a big need for pediatric dermatologists in West Virginia (although I know there are many great dermatologists here who treat children).
Postscript - Prescription costs to control psoriasis
I wanted to address prescription medication costs associated with treatment of psoriasis but I really had not set out to write a book. So I will keep this brief. Chase's prescriptions, even with insurance, are expensive; $30.00 to $50.00 co-pays per prescription and Chase could easily go through 10 prescriptions a month. Chase’s doctor provides him with samples of some medications, so that helps a great deal. The level of Chase's psoriasis currently is manageable without biologics, but should Chase's psoriasis severely rebound I will consider Enbrel. Enbrel's list of possible side effects frightens me, as it is an immune suppressant. But by then it might be approved for minors, so our insurance would help cover its cost. I would go to the end of the earth and back to get my son the medical treatment he needed, if I couldn't afford it.
The last thing I will say about prescription medications to treat psoriasis: they are so expensive that if an individual afflicted by psoriasis did not have medical insurance, they could not afford to treat it properly ... well, unless they are wealthy. That’s sad.
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