Sitting at the desk in the play room, I am no where near as happily typing as I am when I can just reach over and grap my laptop and type. All while still sitting in bed. Having the laptop at immediate hand is like a pencil and notebook at the bedside. Sitting at the desk is not. And when I can stay right next to Julia who is fast asleep, I am be more sure that she is not scratching in her sleep. Which she does. But I could not just lay for another hour or two upstairs. Boredom had set in after twenty minutes or so.
Best prognosis on getting the laptop back -- today at the earliest, Tuesday dependably. I am hoping for tomorrow.
Last week, last Friday, I took Julia to the pediatric dermatologist. It is one of those referrals that you wait months for. Funny, ridiculous, insane to wait months for a skin doc referral. Maybe I should say to wait for a referral for a condition that worsens and changes daily. When the referral and appointment was made I hoped that I'd have to cancel it because Julia was healed.
No such luck.
The doctor, an Asian woman, very nice skin, I had to notice, was very bright and condescending. I was asked to give the details of Julia's condition four times before seeing her -- first, written on a form, then to two nurses separately (one might have been a PA), then to the resident, and then to the doctor. I balked at the third retelling, asking to not have to repeat myself until I saw the doctor. The resident snapped back, "I am an doctor." And I stepped back but not as graciously as I might. No one had looked at Julia, they just wanted my words over and over again. I have only so many words. I don't change my story. And there is a point where I can hear that my explanations sound almost foolish. Added into my exasperation are the many phone calls to Julia's primary doctor and talks with receptionists and nurses where the same story has been told and retold. Bites, scratching, rash, nothing working with the itching, even without scratching, no healing.
The resident, very pregnant and clumsy getting around the small, not tiny but cluttered, examining room, did not take notes but circled the notes taken by the nurses. Really, it was the same story. She swept out of the room to the extent that she could sweep, and a few minutes later I could hear her conferring with the doctor right outside of the door to the examining room. She went through a check list of what it wasn't -- no scabies, probably no parasites, not an allergic reaction -- and commenting on my unpleasantness. Oy. Yes, I should have been more patient. I wanted answers from these people and my attitude was not helping that. I can justify and make excuses for myself, expect more from those medical professionals, but in the end I wanted information and help and my attitude however justified was not helping get what I came there for.
One more justification -- again, not a good one but one that is such an irritation to me -- is waiting for doctors. I was scheduled for 10 a.m. and asked to arrive at 9:45. We were on time, even a few minutes early since I knew I would have forms to fill out. Still, we were not taken to an examining room until 10:25, and then had to give the story to two nurses and the resident before seeing the doctor. I saw the doctor for about 20 minutes but that time didn't begin until after 11. Petty, yes. Irritating, yes.
Now on to the meat of the matter.
The most likely diagnosis was papular urticaria + neurotic excoriations with an element of dermatographism. And to translate that into something that resembles English:
Papular urticaria is a common and often annoying disorder manifested by chronic or recurrent papules caused by a hypersensitivity reaction to the bites of mosquitoes, fleas, bedbugs, and other insects. Individual papules may surround a wheal and display a central punctum.
Although the overall incidence rate is unknown, papular urticaria tends to be evident during spring and summer months; in some climates, such as that in San Francisco, California, this condition may affect children throughout the year. In addition, despite no known racial or sex predisposition, certain ethnic groups (specifically Asians) may be more predisposed to more intense reactions, and a small Nigerian study reported a slight female predominance for skin diseases such as papular urticaria and atopic dermatitis. This eruption is primarily self-limited, and children eventually outgrow this disease, probably through desensitization after multiple arthropod exposures. However, adults can be affected, albeit at a much lower rate.
Patients consciously create neurotic excoriations by repetitive scratching. Neurotic excoriations should be distinguished from dermatitis artefacta, in which patients create lesions for secondary gain. Neurotic excoriations can be initiated by some minor skin pathology, such as an insect bite, folliculitis, or acne, but it can also be independent of any pathology. Because no significant underlying pathology is present in the skin, neurotic excoriations are really a psychologic process with dermatologic manifestations. Many doctors lack an extensive understanding of neurotic excoriations and its treatment. The complex interplay of the mind and urge to create a neurotic excoriation even in 2010 continues to receive explication. Dermatologists are aware of this complex dynamic and continue to grapple with it.
Because patients create neurotic excoriations, the lesions have the quality of "an outside job," that is, clean, linear erosions, crusts, and scars that can be hypopigmented or hyperpigmented. The erosions and scars of neurotic excoriations often have irregular borders and are usually similar in size and shape. They occur on areas that the patient can scratch, particularly the extensor surfaces of the extremities, the face, and the upper part of the back. The distribution is bilateral and symmetric.
The manifestations of neurotic excoriations vary widely from unconscious picking at the skin to uncontrollable picking at lesions to remove imaginary foreign bodies. Picking is usually episodic and irregular, but it can be constant. The picking can have the quality of a ritual and may take place in a state of dissociation.
Dermographism or "skin writing") is a skin disorder seen in 4–5% of the population and is one of the most common types of urticaria, in which the skin becomes raised and inflamed when stroked, scratched, rubbed, and sometimes even slapped.
So, Julia is particularly sensitive to bed bug bites, has very sensitive skin, and has scratched herself into a skin condition. The good doctor did not bother explaining this at all. If she had, I guess I could have said, "duh"!
Do I sound disgruntled? I am annoyed. I was annoyed when I was at the appointment and as I dissect the opinion, I am more so. The patient instructions are no better.
The doctor poo-pooed the herbal Wound and Itch Ointment that we've been using. That fact, that I told her, that it is the only over the counter remedy for itching that has worked with Julia, made no different. She suggested Eucerin Calming Cream, Aveeno, Calming Cream, Sarna lotion and ice. The Sarna, which works very well for Julia on bug bites is of no use. Ice it great but it only works if an adult is sitting right next to her. She does not reach for it on her own no matter how many reminders are around her. The sentence that says that the picking can take place in dissociation is particularly relevant.
The doctor prescribed a stronger steroid cream which I am using very judiciously twice a day. It does shrink the sores and it is the most useful part of patient instructions.
The doctor upped Julia's dosage of ceritirizine from 10 mg in the morning to 10 in the morning and 20 at night. Cetirizine is an antihistamine that reduces the natural chemical histamine in the body. Histamine can produce symptoms of sneezing, itching, watery eyes, and runny nose. It is used to treat cold or allergy symptoms such as sneezing, itching, watery eyes, or runny nose. Cetirizine is also used to treat itching and swelling caused by hives. The 10 mgs during the day seem to help Julia, however even 10 mgs at night make it impossible for her to sleep and after a dose at night (10 mg) and another dose in the morning, she was hyperactive all day.
The doctor advised that I spray Off or another insect repellent on Julia twice a day. She explained (although she did not write this down in patient instructions) that body mites may be aiding in the reinfecting of the skin and contributing to the secondary papules or bumps that appear as a sore heals. I am spraying her as instructed just in case this mite theory is true but it sounds to me more like something that I am suppose to believe in without proof. Thus, carrying stones and crystals seem as likely, if not more, to aid in Julia's healing.
The final instruction is to "wet wrap" Julia at night to decrease the inflammation, hydrate the skin and provide a physical barrier to discourage scratching. This is in lieu of the band aids and bandages that I put on Julia, which were also poo-pooed by the doctor.
This procedure might work in a hospital with a heavily sedated patient, but with a 10 year old with cognitive challenges and hyperactive on antihistamines, it is a bust.
The directions: Soak in a warm, not hot, bath for five to ten minutes. Shake off excess water and apply the prescribed medication to the damp skin withing 2 to 5 minutes after leaving the bath. Immediately after the medication is applied, put on moistened , 100% cotton tightly fitted long underwear. The long underwear should be immersed in very warm water and wrung out so that it is very damp but not dripping wet. This layer should hold moisture for 6-8 hours. If it begins to dry out, wet it again. Next, apply a dray 100% cotton sweat suit over the moistened layer. This layer is to prevent the wet layer from drying out. If hands or feet are involved, wet, white cotton socks and wet dermpak gauze gloves. Note: You may become chilled while wearing the wet wraps so use extra blankets for warmth. Although the doctor said that this would be comfortable, no one else I've talked to thinks so. I don't think so.
Julia does not want to wear wet clothes at night. My attempt to put wet socks on her was a failure. I would like to try it for one foot and one wrist, both of which she scratches at night and both of which resist healing. I have not figured that out.
So much for experts. I debate whether to call the doctor back to ask for help with the antihistamine and suggestions regarding the wet wraps. I don't know whether she will be of help.
And one more thing. Before the end of the appointment, I mentioned Julia's struggles with her early life and trauma. The doctor clearly stated that she was looking at only the physical conditions. "Let's treat her skin first and worry about the rest later." Maybe this statement, more than anything else, forces me to believe that I do not have an ally here. In the information I just copied, it says: "Many doctors lack an extensive understanding of neurotic excoriations and its treatment." So, even after the doctor provided the diagnosis, she appears to lack the exact understanding stated. She wanted pure physical explanations and solutions, and that is all she intends to help us with.
It strikes me that in David's case, we looked for a purely physical solution. That is, he got the replacement part, a new heart, and then pushed himself to resume the life that he had known before his heart started failing. I cannot blame him or me or us for this. It was our nature. We have not been afflicted with disability that changes a life or that molds a life into a particular form. I have always fought my stuttering -- not that stuttering can compare to a failing heart or a damaged brain -- but it was the only disability that I/we knew intimately. Bully our way through. Fight to be like normal. Don't feel sorry for yourself, just do what needs to be done. All of that echos in my head when I think of my life. David's life. And all of that failed with David after the transplant.
This is not to blame. Not at all. This is our culture, our intellectual heritage. These days, I bully Julia. Pouring math facts, math games, number puzzles, and more into her head. Being fiercely frustrated and angry when she cannot remember, cannot understand, cannot do the operations that I required her to do. I break them down, I repeat and repeat, and it does not stick. I am close to abusive in pushing her to learn.
David bullied himself. He did the physical rehabilitation after transplant with rock solid resolve. He went to that reading of his play two weeks after transplant. He was back at work, part time on paper, but really more, less than three months after the transplant. He wanted to resume life much too quickly. We did not know that resuming was not the option and we believed that anything less than resuming was for weaklings, under-achievers, ne're do wells. We had no idea. We had my stuttering and Julia's limitations as a hint, but we ignored both of those. I did not see the lesson at all. I was totally oblivious to it. Sitting here now, typing this, I am stunned by our stupidity. I don't mean that there were medical professionals out there who were giving us some information about life changing and we were ignoring it. They were are ignorant as we were. They applauded David's "getting back on the horse."
And here I sit, typing, with this lesson. Have I learned it? I can say that I see it. It was so far from my conscious mind at the time of the transplant that I can't even imagine that if I had only talked to David about it . . . we knew nothing. We were so set on our path to recovery and normalcy. I want to write, if only . . ., I wish someone had said . . ., If only we could have read . . ., but I am not sure it would have done any good at all if the idea, the thought, the realization was not already somewhere inside of us. And it was not. As Julia does not have a neuro-typical brain, David did not have a biological-typical body. As Julia cannot learn like other kids, David could not live like other people. We made a choice between typical life and death. I see now that it was an absurd choice but in so many ways, it was the only one that we chose, that was presented to us, that we steadfastly believed in. It is because I believed, and I can really only speak for me even though I use "we" over and over again. I guess it about David. I can only know it about myself. It is because I believed that life has only one path.
Oh, this sounds much too simple. Much too direct. Much too distilled. How could I be so foolish to believe that life has one path? Yet, there it is.
Julia is not on that path. And I am STILL not comfortable with that. I STILL do not embrace her difference as her. She is not her differences but she is herself living differently from typical children. She may intersect with typical children in some ways but she must be developed, be helped to develop in that unique way that is herself.
When asked about Cheshire's upbringing, I say that the best that we could do was to stand out of her way, provide her with what she needed and allow her to grow. It was not that simple but I do believe that it is, in essence, what we did. For Julia, I do not follow any part of that advice. I do, I interceed, I teach, I push, I punish, I do anything and everything in an attempt to develop her the way that I perceive is a close to normal as possible. I need to follow my own advice, my own parenting method. Not the same way, of course, but in the unique way that would benefit Julia.
And I think that when I resolved right after David's death to live deliberately, it was the closest I had come up to that point of understanding all of this. I did not even know what I meant when I said it. I still don't know exactly.
My head is crowded with ideas that I cannot write. My head aches in sadness of realizing this now. My eyes cloud over. It is astonishing to make discoveries, to grow just a little bit, but it hurts so much as well.