What we have is a story of an itch. This tale develops differently each day with new scenes that are alternately favorable or frustrating; but the basic theme remains unaltered--there is an itch and it persists. And it is a contagious itch that has taken hold of me and seeks to capture anyone who consistently spends time around Aaron.
Even if he does not get out of bed continuously at night to address his itch in the way he once did, I know when he is seized by it because my skin is burning as well and sleep will not come. Before he is up in the morning, I know what state he will be in by my need for an antihistamine or lotion to soothe the hives that now appear regularly on my skin. Fortunately there has been a shift in this consuming itch. After several interventions last week, Aaron is more often uncomfortable rather than strained to his limits and he has had continuous hours nearly every day suffused with sweet relief.
On Wednesday Aaron and I traveled to Boston to have a consult with a colleague from his Harvard days, Dr. Arturo Saavedra. Aaron finds him to be a brilliant clinician and believed that he might be the one to offer more insight than we had so far gleamed about the cause of this itch and any potential treatments that might work better than the options we'd already exhausted. Arturo is a dermatologist at Dana Farber who has a special interest in graft versus host and drug reactions. Within the first few moments of our visit, he explained that in his experience 40% of transplant patients will develop pruritis from their conditioning regimen. The autonomic nervous system is deregulated by the conditioning process and a dysautonomia develops with a specific symptom of itching. While there are a few theories floating around as to why this happens, apparently no one conclusively understands the precise mechanisms. It is not a reaction specific to particular medications as he sees it in patients regardless of the regimen. Though we may never be able to completely root out exactly what happened to bring about this itch, the good news is that from Arturo's clinical experience, most people will feel better by around week 12 post transplant. This improvement occurs because the medications are working well to control the symptoms, the symptoms themselves are lessening, and/or the patients becomes desensitized to the itch.
Arturo showed me evidence of his diagnosis on Aaron's back which was perfuse, red and irritated, but showed no signs of a visible rash. What was present, however, were small vertical lines scattered across his back. These are characteristic of the dysautomia as well as the wider and darker hair follicles. After this exam, he was all the more convinced that he held the correct diagnosis for the itch. After reviewing Aaron's drug protocol, Arturo immediately concluded that none of the medications that Aaron had been prescribed for the itch would help him.
He laid out the new regimen of topical and oral medications that Aaron would immediately begin. Aaron would first use a topical steroid called triamcinolone, then cover his whole body with a hydrated petroleum jelly that will push the steroid further into the skin. This cream, hydrolatum, delivers fat to the skin. It is modeled after lard and feels very greasy to the skin, but Arturo said that after your skin learns how to absorb it that most people become completely enamored of it and never want to use anything else. The look on Aaron's face indicated he was not convinced but he said he would definitely follow Arturo's prescription to the letter. Orally Aaron was prescribed Naltrexone, which is typically used to help get people off of narcotics and alcohol. Though it is not a skin specific medication, it has the greatest reaction with skin receptors. Arturo started Aaron at a low dose because of the risk of seizures. If all is going well, Aaron may be off of this regimen by day 100.
Aaron will also take zyrtec, an H1 blocker, for the next six months along with zantac, an H2 blocker, as they apparently work best together. Arturo stated that this regimen works for about 70% of patients. If it doesn't work for Aaron, there are other options. He also added that patients with low cholesterol seem to be more susceptible to this condition. Aaron has always had amazingly low cholesterol and was advised to consider increasing the amount of fat in his diet to see if that may also add some additional benefit. Though Arturo didn't fundamentally believe that any of the drugs Aaron had been taking over the past month would improve his condition, Aaron will remain on cromalyn, a mast cell stabilizer and doxepin, which he is using as an additional antihistamine.
As I sat listening to him outline this new protocol, I had to wonder why we had not heard of any of these options previously. Aaron has been itchy for over a month and we'd essentially been told by the transplant team that it was extremely unusual and that they had no answers. They'd also assured us that they had consulted dermatologists about Aaron, who was the talk of the transplant team for his rare symptom, and yet when I mentioned this to Arturo, who is on staff at Dana Farber, he said that no one had contacted him for guidance.
A few minutes later we found ourselves with our transplant nurse, Amy, detailing Arturo's plan. She said that we should follow his expertise as they had already pulled everything out of their bag of tricks. I think Dr. Soiffer and the team are incredible and yet this situation baffled me. How easy it would seem to consult your on-staff dermatologist who specializes in skin issues with transplant patients. Who were they consulting over those many weeks? Had Aaron needlessly suffered with this itch all of this time? I was frustrated with myself for not pushing to actually meet with a dermatologist sooner and reminded myself never to let things go on too long again without specialist consults.
We headed home full of hope, even more so because Aaron had another avenue of pursuit to ameliorate the itch. While still in Boston, Aaron began to consider the psychological components of itching and whether or not certain modalities might at least help distract his mind from the itch. He did not ask me for my insight into this, despite my years of psychological and holistic training, but naturally turned instead to PubMed where he could learn if there were any substantiated studies that methods such as hypnotherapy might benefit him. After scanning through several articles on prurits and hypnotherapy which illuminated a clear benefit, he began to look for someone in Boston with the help of our friend, Cheryl. As we ended up leaving just a few days later, Aaron ultimately found someone close to our home in Katonah, NY, and met with him on Friday for his first session.
From the moment I saw him after this experience, he seemed transformed. I could almost hear him sigh with relief when we drove home. It was immediately clear that he once again claimed and inhabited his body. When we returned home, rather than scooting back into the cool comfort of the house, he remained outside with Sasha and shot basketballs. I was anxious that he would get warm from the sun and moving around and that his skin would explode as it had over the past month with just a short walk around the block in darkness, but Aaron jumped about comfortably, smiling and laughing. As his mother and I sat watching him, she whispered to me that we had better get him another appointment in a few days time. When I mentioned this to Aaron, he said that he had one for two weeks from Friday because his doctor was out of town this week. Seeing him so happily himself, I wanted nothing more than to keep him exactly as he was and was delighted when he proclaimed himself committed to this new therapeutic option. He explained that he has home techniques to utilize each day and that he believed they would help on many levels.
The third component of our therapy involved scratching another itch. Since the day after his bone marrow transplant, Aaron began to pester his doctor for permission to resume intimacy. His first plea called upon his desire to celebrate his new birthday and when Dr. Soiffer gave him an ambiguous reply, the burden fell on me to be the responsible party that reminded him of the rules clearly laid out in the 12 inch thick transplant binder. There is a whole chapter on intimacy but I had somehow managed to forget our binder at home and had nothing in front of me to argue with his first night back in the hotel. And so he emailed his doctor, asking and asking again, why he should be denied especially as his counts were not that low.
By our appointment on Monday with Katy, one of the transplant nurses, she indicated that Aaron was the topic of the transplant team all weekend. While the teams was very pleased that Aaron felt well enough to even ask for a doctor's note for the issue, it was not going to happen until he had hit his nadir and his counts were going up. On Wednesday of last week, Aaron once again revisited the subject. To his great surprise and pleasure, he was given the all clear. But how was this possible, I inquired, when he was itchy when I even just held his hand. The hows and whys are up to you but as far as we're concerned, he's in great shape.
After hypnotherapy, Aaron was feeling more passion than itch and he convinced me that unsatisfied desire could be the very cause of this itch. How could I ignore this possibility and potentially inflict more suffering? Put this way, I couldn't despite my concerns for his health.
Our three pronged approach seems to be working. While Aaron felt better nearly every day this week, he still battles his itch and we had a few set-back days when we traveled back and forth to Boston. Still we are hopeful that this itch story will one day be just that--a tale from our past.