DBA is a baffling, confounding, and all around pest of a blood disorder.
I decided, about a week ago, that we should start making green smoothies. Why? Well mostly because I have this old jar of Amazing Greens Superfood and I thought we should use it. In the past, we’d also noted that Adahlia tested positive for AFA blue-green algae, which is helpful as a blood-builder and also for removing viruses from the blood stream.
So I figured, why not?
I tossed in several great superfoods. Blended well, and she drank maybe a cup once a day for 3 days.
Suddenly, she wasn’t the same person anymore.
When I went to pick her up from school on Tuesday, she lost her sh*t on me. I apologize, but really, that’s the only way I can describe it. I showed up and her smile turned to a scowl. I tried to put her in her coat to go outside, and she began shrieking at me hysterically. Truly. Shrieking. Then she wouldn’t go to the car and was literally running from me. The teachers ended up having to call all the other children back into the school so that I could calm and corral her alone in the yard. It was an incredible regression — absolutely mind-boggling. Probably the worst of all her 3 year old tantrums magnified by at least 10.
The next day we had a play date with a close friend. She’d been looking forward to it all day. But when the friend arrived, again, she wasn’t herself. At first she just seemed over-excited, dashing from room to room, and I could not get her to settle, no matter how I tried. Eventually, once the friend started crafting, Adahlia calmed down, but it was only a settling into a super-bad mood. She glared at us, refused to play, and refused to do, well, anything. I tried several methods of redirection and calming and reframing and nothing worked. Her little 5 year old friend even tried several methods. Our friends eventually left.
That day, I decided enough was enough. I decided to “test” her for her supplements. In the past, we’d flown out to my mentor’s clinic, Heiner Fruehof, to do testing with his MORA machine. My parents paid for flights for awhile, and then I bought tickets for as long as I could, and then, I had to give it it up. Necessity being the mother of invention, and of course there’s the hand of God or Fate, I happened to attend a workshop where the instructor, as an aside, taught Fascia Testing as a technique for choosing which Extraordinary Vessel points would be best for a patient. It’s similar to muscle testing, but relies not on muscle strength but on a subtle fascia response. Since the best and most plausible physical theory of acupuncture channels is through their descriptions as Bon Han channels — channels of flow within fascia, where nodes have been found to correspond to acupuncture points, and where communication happens faster than through nerves — using fascia to test makes sense to me. I have, after all, been developing my ability to sense its subtle changes for a decade now. I adapted this instructor’s fascia testing technique for points to be used to test supplements, and it works amazingly well.
Anyway, I did fascia testing of perhaps 30 supplements that she’s taken at one point or another. Not surprisingly, her body DEFINITELY DID NOT WANT the super greens. Nor did it want the algae.
Surprisingly, it also did not want any of her probiotics. Nor her B-6 multivitamin. Nor her B-12 with folate.
But it did want the pure folate. And fish oils. B3 (NADH) and DMG… and two Chinese herbal formulas — one for children to help digestion, and one for settling the spirit. (I give her the one for digestion in the morning, and the “settling” one at night. Let me tell you, her quality of sleep is remarkably improved.)
There were lots of other things we tested.
Oh, here’s something interesting: she wants Oxygen-Infused Water — Seriously. I bought it as a curiosity, even as I was highly skeptical of it and figured it was a “snake-oil” sort of medicine. Her body reacted extremely favorably towards it, though. I tested it multiple times to be sure, and then just shrugged and accepted it. (It basically tastes like salt water. She loves it.)
On one hand, of course, it is a blessing to be able to do this testing. Within 24 hours, her behavior was restored to normal.
On the other hand, it only serves to indicate just how aggravating this bone marrow failure / blood disorder can be. Green “Superfoods” are packed with healing nutrients. But her body doesn’t want them. In fact, it reacted violently against them. As well as to the methyl form of Vitamin b12, the “best” form there is. What gives?
What am I supposed to do? Test EVERYTHING we eat? EVERY vegetable? Fruit? Meat? Cheese? Tea?
These things can change every few weeks. I cannot imagine CONTINUALLY retesting everything.
But I suppose I must?
Recently, another parent posted how her child has happily gone into remission. She credits “healthy” lifestyle: Fish oils, goji berries (those are chinese herbs friends — gou qi zi), using essential oils instead of chemicals, and the like. I’m very glad her son is in remission.
But I think this story pretty well indicates that if a parent achieves remission for their child while stumbling through “heathy” lifestyle, it’s really luck. Luck and timing. When they try to mimic the success, most parents don’t get such results. It is not because the parent who got lucky “knew” more. It’s just that they just tried the right something (or a combination of somethings) at the right time and it worked.
I want to know why its working, or not working.
I am seeking common threads from these stories of both success and failure, and trying to come up with an understanding of what should be used when.
But in the meantime, it has become BLAZINGLY clear to me that these things are highly individual, both in terms of place (the child) and time (in the child’s healing journey). There have been times when Adahlia wanted the things her body no longer wants. Treatment is not static. It’s kind of a weaving process — certain base threads must remain the same to provide stability, but the pattern may shift dramatically, as one moves through the design.
Overall, the trajectory of the herbs and supplements Adahlia wants is encouraging. She has moved from “seriously medical” and strong herbs to more “nutritional” and mild herbs. We just had her annual hearing and vision test, and her chelation medicine has still not harmed her. We’ve been able to preserve her sensory function and health on many levels.
I do think I have an overarching big picture of what’s going on. But the details are still being sorted out. My hope is that when this story is done, I’ll have something truly valuable to offer people struggling with this illness — actual understanding of what’s going on and a roadmap to restore balance to the system.
While getting something out of a drawer this past week, a small slip of paper fluttered to the floor. It was a fortune from a fortune cookie — who knows from how long ago? It said:
Faith is knowing there is an ocean when you can only see the stream.
My darkest moments with this illness have been when I lost faith. Not necessarily faith in God, but faith that this was happening for a reason. A purpose.
I have explored this sort of work with myself in the past, as my life has not been, well, “happy” since at least young adulthood. I did not, for example, “enjoy” West Point and my military service. It wasn’t until I started working through this, and living in Portland Oregon, that I finally achieved true happiness, feeling peaceful and good about my life, who I was, and my future. I thought I had come through the worst. I began working with other people on this, who were also struggling with purpose and light in the darkness, and I truly thought I had learned the lesson. But then, Adahlia was struck with DBA, I nearly lost my kidneys post-partum, and I realized that there were still deeper levels to it. My faith was struck.
Having this depth of challenge has forced me to go even further and deeper into what I thought I had already understood. It pushes me to know it fully, so that I can become truly centered in it, so that nothing can sway me.
I am grateful. I have learned much on the soul level, the medical level, and the relationship level.
I am not sure what the ultimate lesson will be, or if I will be able to offer anything to anyone else of any great importance.
But, because of her need, I have learned how to balance out my five-year-old’s moods so that she is happy, friendly, and creative again. Sure, I would have preferred her to simply be happy and healthy without this incredibly taxing song-and-dance of medical stress, intervention, and supplements, but the bottom line is that I’ve learned a song-and-dance that is working.
Is there value in learning? Is there value in the journey?
I think so.
While I’d love to be in the destination, I think that the old adage is true, and the journey has value.
Yes, we are certainly in the stream. But I do know that there is an ocean out there, a whole water cycle.
And I’m rediscovering the power of that, on a deeper level. To know that the water cycle exists, and that we are small, but vital players in it. To not despair when my own stream runs dry, but to dive into what I do know of the water cycle, of the many other expressions and paths of water, to creatively seek answers and alternative courses of action.
PS: Here’s a fun picture of me and Adahlia at her transfusion right before Halloween. We dressed as wolves and went to the hospital for her transfusion on Oct 30th, howling through the halls.