Personal Note: I have been absent for many months if you hadn’t noticed. I have had a parental nightmare going on so I neglected this blog with good reason. But some of my experience in dealing with my daughter’s health crisis is appropriate to write about here. I have decided to stay on topic of this blog’s theme in this post, and I will go into detail about my daughter’s condition in a separate post for those interested.
Way back in June 2014, my (then) 12 year old daughter had some hives that we couldn’t quite get to go away, and we could not figure out what was causing them. She had other health complaints which I will get into later. The hives would come and go and we gave her Benadryl, Claritin, or Zyrtec to combat them. The meds would work for a day or two and then the hives would reappear. She had them on her arms and legs and we tried using a sensitive skin laundry detergent, we were trying to track if it was worse after eating certain foods. We couldn’t figure it out. She had a patch of skin on the inside of her arm where the elbow bends that was raised and calloused. That skin was very itchy compared to the hives. That skin never cleared up like the hives did with allergy medicine and it spread along the inside of her arm. It then spread in a linear pattern down her arm and up the back of her arm around the back of her shoulder up over her shoulder and down her chest. The doctors we went to could not diagnose it and referred us to a Dermatologist.
In August, we went to the Dermatologist recommended by the Pediatrician we saw. This was not a Pediatric Dermatologist and I regretted the decision to see this doctor the minute we walked in. In the waiting room, there was a loop of “facts” on the TV monitors which focused on a few skin conditions, but of course, tanning beds were the ones that popped up the most often. I filled out a questionnaire for the “doctor” about my daughter’s habits; there were 4 questions specifically about tanning bed use. Not one question about sunburns from overexposure outdoors, sensitivity to sun, nothing about working outdoors, just have you ever used a tanning bed, how often, how long ago was your last visit and such. Then there was a question, and I quote, “Do you use sunscreen on a DAILY basis?” Not only did I circle no as the answer…. I circled it 20 times and added in parenthesis “use when necessary”. Daily basis? Are you kidding me? I thought my eyes were going to roll out of my head and we hadn’t even SEEN the “doctor” yet.
Once we were called into the exam room, things got worse. There were poster sized pictures of melanoma lesions plastered all over the wall. There were more anti tanning posters and flyers. My daughter was very uncomfortable and completely grossed out by it all. She looked at the floor the entire time we were there. I am almost certain there are a few other skin conditions that Dermatologists treat… but judging by the walls in that room, skin cancer was all there was. It really wasn’t an environment of comfort like other doctor offices aspire to achieve. Scare tactics of worst possible cases isn’t the best way to ease a patient’s mind, especially if that patient is a child.
The “doctor” came in and spoke to us briefly, mistook Tieryen’s aversion to look up as being shy and went on with her exam of her rash… the doctor was puzzled by it, took pictures of it and immediately wanted to take a biopsy of it right then and there. We told the doctor she was scheduled for a procedure at the hospital the following day and that she would be under general anesthesia, so if she felt a biopsy would be necessary, we would prefer to have it done when she is in the hospital. The doctor said she didn’t have rights at the hospital we were going to and pushed for us to do it there in her office. We again declined and told her the doctor we are working with had offered to have someone else do the biopsy and he would consult with her when the results came back. He also would like to consult with her about the exam she was currently doing in order to get all input on what was going on with Tieryen. She reluctantly agreed, recommended a topical cream for her rash and sent us on our way with a “goody bag” full of free sample products. As we were checking out with the desk, they asked if we wanted to purchase any of the products they had. Wait, did I just attend some Mary Kay party or something? When was the last time you went to a doctor appointment and then were offered to buy products from the office? And they were just skin products. It wasn’t like they were offering the cream she prescribed. It was bizzare. Apparently it isn’t unusual in Dermatologist land to have a retail store of products. It is just further proof that they are in bed with the cosmetic industry, and that is why they push SPF daily, they are salespeople for Neutrogena and the like. I couldn’t wait to get out of there. My distaste for dermatology intensified that day. The entire visit lasted about 20 minutes and she gave us absolutely no answer to what was going on with my daughter’s skin. It was a complete waste of time and money. I still have the “goody bag” of products that are untouched. What a scam.
The rash on her arm did clear up when she had treatment for her disease. Once that treatment stopped, the rash started to aggressively return. We were referred to another dermatologist, this time a pediatric one, and she was able to diagnose the rash as Lichen Striatus. We were told it was rare and has unknown causes. There is no research being done on it and it generally goes away on it’s own anywhere from 1-2 years. While I did like the second dermatologist more, (the office wasn’t as offensive with propaganda/pictures of gross skin conditions, and there were only 2 questions that were uncalled for on the form I filled out,) we still had no treatment, only a diagnosis in the sense that we knew what to call it now.
What I came away with from both dermatologist experiences is that dermatology has no interest whatsoever in researching unknown rashes such as this and the answer is a simple shrug of the shoulders and a recommendation to wait it out until it goes away. If it isn’t skin cancer, they don’t seem to want to invest their time. They don’t bother learning about these conditions, so when they do see them, the first thing they want to do is cut into the skin and figure it out. While I understand this approach is a good way to learn and get good information, I don’t believe it is completely necessary each and every time they come across something out of the ordinary. Once we got the diagnosis of Lichen Striatus, we googled it and found a lot more information about it on our own than what either so called specialist knew. If our Hematologist had that kind of attitude, my daughter would not be alive today. He worked day and night to figure out what was wrong with her. He didn’t just say, “Wait it out and hope it clears up on it’s own.”
Another recent interaction I had with a dermatologist proved to me that there is a sense of self-importance and misunderstanding of how damaging their message can be. What I mean by that is the ignorance of how the constant message of avoiding any and all sun has been repeated so often, the general public believes this is good advice, and by following it we are endangering ourselves of so many illnesses associated with Vitamin D deficiency. I spoke with a dermatologist at an outdoor event a few weeks back. He was there selling sunscreen products and preaching about how important it is to wear all the time. He did not know his own Vitamin D level and when asked, he said, “Here in Colorado, we do not really see a lot of cases of Vitamin D deficiency, it isn’t an issue because our state is so sunny.” He also said that he really didn’t know how long a person needs to be in the sun to get Vitamin D, but he had heard it was less than a half hour. He made no mention of how a person’s skin type is what would need to be taken into account. No mention that a fairer skinned person like me would take less time than someone with darker skin tones. When that point was made, he didn’t have anything to say either in agreement or disagreement. It was like he hadn’t thought of it that way before, or didn’t know. Someone who specializes in skin should have a better understanding of skin types and know that information.
I feel that dermatologists are illogical when they push for legislation to regulate tanning salons. They testify that the sun is dangerous and how UV causes skin cancer. Then they turn around and administer phototherapy to patients using UV equipment, just like tanning beds used in salons, and they intentionally burn the skin as a treatment for psoriasis. Therefore increasing that patient’s risk of damage and issues associated with overexposure. They then charge insurance companies and patients hundreds of dollars for that phototherapy treatment. Tanning salons offer the same UV light, without burning, at a lower cost to the patient and limit exposure based on skin type to minimize risks. No wonder they want salons regulated and limited or outright banned, they are the competition. The strategy is to misinform people that UV is dangerous unless done by their practice and they want to convince lawmakers that they are the ones being responsible.
So after saying all of that, I feel I should also state that I do believe that Dermatology is needed, but not to the extent of what dermatologists themselves recommend. Skin cancer is very real and there certainly should be treatment and specialists dealing with it. The dermatologists I have encountered want us to believe we ALL should go to them for regular checkups and cancer screenings, just like we would a general practitioner for an annual physical. Would you go to a Cardiologist or a Hematologist every year if you had no history of heart issues or cancer? They say we all should wear sunscreen every day, even if the sun isn’t shining. They warn us about skin cancer over and over. But there are many, many other skin conditions that they should also focus on, or at least familiarize themselves with, yet they ignore. It seems….Illogical.
Wow, I had a lot to say and I apologize that I did ramble a bit, and I wish it flowed better between my daughter’s story and the other experiences I’ve had with the profession. (You should have seen what this was like before I edited it.) I would like to invite you to read my next post that I will publish in the next few days (hopefully, currently it is twice as long as this rambling post.) about my daughter’s diagnosis and disease. I truly believe that by sharing this story, more people will know about HLH. And the more aware we are, the better the chances of diagnosis and survival and eventually a cure.