So much has happened in the last few days. And the sum of it is this: I feel like Adahlia — like a 2-year-old taking in, in, in — I am always learning.
First, I have made a few absolutely wonderful and indispensable friends in the DBA community. Similarly active in the care of their children, similarly interested in integrative medicine and finding and addressing the root issues of this mysterious disorder, I have learned a lot from their experiences. After comparing our children’s situations, I am a little in awe of the complexity of the situation we face, but I’m ultimately encouraged that this does all make sense, even as it might appear not to make sense. Much like you need to stand back from a tapestry to see its design, and if you stand too closely, all you will see are threads going this way and that.
One very interesting thing I’ve learned is that strep and herpes potentially occupy the same cells in the body. Now, I have yet to discover if this is actually true, but it was said by a doctor, and it was unsolicited information, so until I can look it up on my own I’m going to accept it as potentially true. Since some of what I’ve discovered about our illnesses has pointed to a virus, of the herpes family most likely, and other things have pointed toward bacteria and strep, I find this rather mind-blowing. And imagine, if both are in the system, in the same cells, and multiplying, could you blame the body for getting dysfunctional and becoming auto-reactive?
Another interesting thing I’ve discovered is that Adahlia actually has plenty of B12. Plenty, that is, in her blood stream. Actually inside her blood cells? Well that’s another situation altogether. Now of course there are a few forms of B12, and the methyl- form is most biologically active, and often recommended in B12 issues, because it’s already methylated and the body doesn’t have to perform a step that can be tricky for people with undetected genetic conditions (unrelated to DBA) that don’t properly methylate. Lots of people have this issue, and methyl-cobalamin (B12) does wonders for them. But that’s not the issue here. Even the methyl form doesn’t seem to do anything.
Biochemistry is complex. There are several cellular friends and steps necessary to bring B12 into the red cell from the blood stream. The good news is that her low cellular B12 is not a gut absorption issue. So we can rule that out. B12 is making its way into her blood stream… in vast quantities, in fact. It’s just that it’s kind of just stuck there, floating around, not getting to where it needs to go. The bad news is that I can’t really test her red cells directly, like I tested her white cells, to see exactly what’s wrong in them, what nutrients they lack, because all the red cells in her blood stream these days are donor cells. Yet, I can assume, from talking with my new DBA comrades, that Adahlia probably has a deficiency similar to another DBA child, who is responsive to steroids and so her red cells are her own, and whose red cells were tested for nutritional deficiency and found to be deficient in lithium.
Lithium? you ask. Bipolar disorder? Wasn’t Kurt Cobain on lithium?
Not exactly. That’s lithium carbonate. Designed by a pharmaceutical company and available by prescription. I’m talking about a natural mineral, lithium orotate, which participates in many neural functions, and is necessary to the biochemistry of the body, including the act of bringing B12 into red blood cells. Tiny doses of lithium orotate have been used to treat ADHD, Alzheimer’s, and many other conditions. Guess what? Lithium also inhibits viruses.
(And here again, we have yet another clue that points us to this disorder’s involvement with the brain.)
Lithium orotate can be supplemented with trace minerals (or ionic) minerals. In actuality, I’ve already dabbled with giving her trace minerals, as someone once strongly suggested it for her, but I’ve only recently started giving it to her on a regular basis, because of her persistent selenium deficiency. Selenium, a trace mineral, is also a necessary component to many reactions in the body, and it is used to activate antioxidant reactions and remove free radicals. With this new knowledge, we will keep using trace mineral supplements.
I’ve also learned more about the hormonal component of DBA, the use and side effects of steroids, the benefits and consequences of bone marrow transplant. The truth is that biomedicine is nearly entirely focused on treating the anemia of DBA, and has paid little attention to the many other symptoms and complications. It is a shame. The hormonal aspect of DBA is fascinating. The difficulty with detox and absorption, the imbalance of pH in the blood, the tendency to accumulate toxins and microbes — it is all very important and provides a clue to unraveling it as a disorder.
Adahlia is doing absolutely fantastic after her umpteenth blood transfusion on Tuesday. (Notice her doll is also getting a transfusion… The Dalmatian puppy was presented to her by hospital staff, they were giving them out to all the children in the oncology/hematology clinic.)
Her Ferretin is lower than last month, which is good, the sort of trend we want to see. She is growing like a weed. Last night, she counted her watercolors pigments in their tray, up to eight. Then, she tried counting backwards! She skipped six and went straight to five, realized she erred and stopped, unsure. Her dad was thrilled, told her that he understood what she was trying to do, and to keep at it.
She sings songs and dances, by herself or with me or with her cat. We have long conversations about whether we should wash the car or not, if the snow is coming and what that means, and if she can have a treat or do a favorite activity now, or if she needs to eat her food first.
Today, at dinner, she showed that she understands another kind of humor: Out of the blue, she picked up her fork, looked at her dad, shook her head and said: “dinglehopper.”
We laughed. We had just bought The Little Mermaid a few days ago, and she’s really taken to it. We said: “You’re right! It’s not a dinglehopper. That seagull was making things up! Do you know what that is?”
“Fork,” she said sighing. Then she grinned, ran it through her hair, and threw it on the ground.
The child amazes me.
We had a fabulous day the day prior to transfusion: we unexpectedly discovered that a friend was in town, and was staying at a house where there were horses and huskies. They invited us over, and Adahlia got to pet and feed horses, which was a big treat for her. And then, she got to go dog sledding. No joke! I stood on the back rails and steered, and she rode in the sled. It was incredibly fun!
Adahlia was hesitant at first to even get on the sled, but by the end, she climbed up on the rails, wanting to drive it herself. An absolutely magical time… The sort of thing that I feel so grateful to give her, even when it’s more an act of providence or fate than anything of my own doing. After all, who gets to drive a dogsled these days? A dream come true!
And let’s not forget that Adahlia did all this on the day before her transfusion, which means she had a Hb of 6.5. (Less than half of the red blood cells that you or I function with).
Today we made a paper dragon puppet for Chinese New Year at the town’s museum and then met our friends for an afternoon playdate at their neighborhood park. Adahlia was really sweet to the little boy, just shy of 2 years. She really likes him. For the past two days, she’s been talking about how she wants to trace his hand. She seems to want to share things she loves with him: her cat, her rocking horse. She had the biggest grin on her face just riding in the wagon with him. It’s wonderful to witness.
I’ve also learned, or reawakened, my appreciation of acupuncture. On Weds night, I had my first treatment that I didn’t give myself (ie, another acupuncturist did it for me) since last July, and it was sheer, heavenly bliss. My kidneys were very happy, and I slept deeply that night, awaking refreshed.
On Sunday night, I had managed to really mess up my right foot by twisting my ankle, and falling forward on top of it. That night, when I awoke to use the restroom, and when I woke up the next morning, I could not put my weight on it.
Great. I thought. How will I take care of her, lift her, and the transfusion is in 2 days?
I needed to do something and didn’t have the luxury to rest, so I put 2 needles in my left ear at the foot zone and began doing slow circles with it. Instantly, the pain was significantly reduced. Within a moment or two, I could put weight on it. In a few minutes, I could walk on it. An hour later, I was carrying Adahlia across a busy street, limping a little, but functional. And by that evening, I was balancing on the rails of a dog sled, my entire weight on that injured foot as I pushed vigorously with my left foot to help the dogs thru the snow.
Tonight Joe showed up with a severe muscle pull from overdoing it with a sprint workout. He doesn’t like acupuncture… and that is putting it mildly. Eventually he agreed to ONE needle. In his ear.
Acupuncture is amazing.
So I cracked open my shonishin pediatrics acupressure text and began to read. I had tried treating Adahlia before, in her first year of life, but as I read, I realized how impossible it had been at the time. Back then, my brain was a foggy, muddled mess. The text seemed impossibly complex, the language difficult to follow. I could not focus on it.
Now I was reading the text. I could think about it. I understood it without straining, although there were still paragraphs I had to reread a few times. I reflect back and can only wonder at what carried me through those very difficult months — such a sick baby, and so sick myself, but in ways that no one, not even my family, or doctors, could see. I could only try to express my fatigue and pain, but such things are invisible to others.
As my new acupuncturist friend said, “Just think about the elderly, how they must feel trying to express what is going on with them, and their children and doctors writing them off.”
“Or anyone not educated in the system of medicine we’ve learned…” I replied. “If it weren’t for the fact that I knew better, that all these symptoms actually did fit together in the oriental medicine model, I might’ve been convinced that I was weak, or being a hypochondriac, or whatever. It was hard enough for me to believe myself… to keep pressing forward. If it weren’t for our education, I might have decided it would be easier to just let it go, and do what doctors wanted me to do, and tried to ignore it until things got so bad that it was too late.”
Remember, that in the oriental medical model, the kidney, brain and bone marrow are all considered together as part of one system. In the western model, they are very separate. But in the oriental medicine model, they are always considered together. They serve as the deepest layer of the body, the most critical reservoir, the place where yang is held and contained within yin, where it transforms to yin before it turns to yang again.
I can only thank the chinese herbs that we’ve been taking, that have been working to clear this strange infection-like, autoimmune-like condition from Adahlia’s body and mine, from our brains, and for the recovery of my faculties. For the fact that I can read an academic book again without my head clogging up and spinning.
And I’ve been putting it to good use. I actually found my old medical school biochemistry binder and have been going through my notes. I’ve read up on the herbs in Adahlia’s most recent formula: I wouldn’t have thought of them myself, but I am a novice looking at formulas devised by a world-famous expert, and they are perfect, absolutely perfect, for relieving her symptoms and the underlying energetic dysfunction. I’m 3 chapters into the shonishin pediatric acupressure book and, with the unequivocal success of my last (and only) recent attempts at acupuncture, I am reinspired to help her.
This is a crazy journey.
And it’s never about the answers.
It’s not about the conclusion.
It’s about learning.
About claiming yourself.
And so many things.