Step 1: Stop the Destruction

I’ve mentioned it before, but in China, DBA is approached as an autoimmune disorder.  Whenever I describe the disorder’s symptoms, remissions, and treatments to naturopathic and other professional, holistic health care colleagues, they all respond the same way: 

“Whoa,” they say, eyebrows raised.  “Sounds autoimmune to me.”

And I agree.  

Sure, there’s a genetic aspect to DBA.  But there’s a genetic aspect or tendency to most autoimmune disorders.  

And I maintain DBA is triggered by an overburdened, stressed and compromised immune system.

It is, after all, impressive how many DBA babies are born to women going through or just graduated from medical or nursing school (or paramedic training).  Is it autoimmunity as a result of a virus that proliferates wildly during pregnancy, stressing the mother and fetus? Is it a susceptible gene tied to mental/emotional stressors? Why can’t it be either and both?

Those answers aren’t coming in the next few weeks.  Or maybe years.  But I’ve got some good news to report:

Adahlias last transfusion of 2015 was at 8.8 Hb, 5 weeks and 1 day after her previous transfusion. 

Yes, that’s right.  She could have easily gone 6 weeks, but we transfused her because we were going on vacation out of state, and didn’t want her to need a transfusion while out of state.

6 weeks between transfusion is a record for her.

Of course, it could potentially be attributed to a fresher bag of blood.  A slightly larger bag of blood.

Maybe.  

Doubtful, when her transfusion previous to that was at 6.6 or 6.8.

Today is Adahlia’s first transfusion of 2016, and she is being transfused at nearly 5 weeks at 8.0 Hb.

Not that impressive? It’s not a jaw dropper, but when you consider that I was uncharacteristically spotty in her medicine compliance (except for the exjade – we protect her organs from iron overload at all cost) her Hb may have been higher, had I been more compliant. We were traveling, it was the holidays, I was tired, excuses, excuses.  

Last week, at 4 weeks, we did a finger-prick test to check her Hb and it was 8.3.  This disappointed me a bit, so I immediately resumed a more dedicated medicine regimen with her.  Even so, I was expecting she’d be around 7.5 today.  Maybe lower.  (Her trend is to drop quickly once she gets below 8.5; in the past she’s dropped down to 6.6 in a week’s time.)

But she was 8.0.

To my knowledge, she’s still not reticing, still not making her own baby blood cells.  But I know she can make blood (she made a normal amount when she was an infant, but it wasn’t enough to prevent need for transfusion).

So what’s happening?

Well, at this point, it’s all educated guesswork based on theory.

But if this disorder is autoimmune at all, then in Chinese and Natural medical approaches to autoimmunity we are at Step One:  Stop the destruction.

We are calming the Spleen.

What do I attribute this to?

In October, I was again uncharacteristic, this time with my Chinese medicine herbalist mentor.  For the first time ever (we’ve been consulting with him since she was approximately 5 month old), Adahlia didn’t require me to assist her as he tested different herbs against her for her reaction.  So I sat on the floor at Adahlias feet, my back against the wall, my head tilted up at the ceiling, and vented.

“We are missing something,” I seethed. 

Then I caught myself. 

“Don’t get me wrong: Adahlia has come a long way.  Her brain is better. Her inflammation is lower.  Her digestion is better. I’m not saying the herbs aren’t doing anything- I know they are.  She’s remarkably bright and healthy for this disorder. The herbs have helped a great deal,” I acknowledged.

I took a breath, regaining focus and momentum.  “But they aren’t doing the one damn thing I want them to do most of all.  We’ve got all these antimicrobial herbs in her system, but are they getting into the marrow? We need to get these formulas into the marrow.  We need to help her build blood.”

I sighed.  My mentor was certainly not the enemy here, if an enemy existed at all.  “We’re missing something,” I repeated, and my tone bordered on a growl. “I know it.”

My mentor remained silent and kept working.  But he had obviously been listening.  Because when he showed me the new formula, he highlighted two new herbs that we had never tried in the seemingly endless potential combinations of herbs.  My jaw dropped. They made sense: no, they were obvious. We hadn’t tried these?

No, he said, shaking his head. While my mentor is an expert in treating autoimmunity, these herbs had never been necessary, never tested positive, for his hundreds of other autoimmune patients.

But then again, he’d never seen DBA before.  

And now here we are. Three months later.  Scoring a solid 8.0+ Hb at 5-6 weeks between transfusions instead of a 6.8 Hb. 

Step one: stop the destruction.

We are onto something.  I’m confident in what we are doing.  And while we may spend a few more months working on stopping destructive processes, I’m excited for the next step, since I’ve recently stumbled across three Chinese herbal formulas specifically used to protect and rebuild the bone marrow during and after chemotherapy and radiation (perhaps the only two destructive processes that can compare to the destructive power of autoimmunity).

Oh, that’s right.  I didn’t specify  Step Two, but you’ve probably figured it out by now:

Rebuild.