We started a new medication last week. It’s a big deal.
For years I told her docs: “It has its place, but not now. I can see using it as a ‘kick-start’ to her system. Like jumper cables to a car. But the car isn’t operational yet. What would be the point in continuing to jump-start a system without first restoring the engine?
We will first restore the functionality. We must calm inflammation, restore digestion, and otherwise help bring systems online. If the herbal and natural medicine isn’t strong enough for the final push, we will use it as ‘kick-start,’ but what you’re offering is not a solution. It is not a long-term plan.”
What is ‘it‘?
Steroids, of course.
These days, I am informed the cool kids call it ‘gear.’ Personally, I liked how it was called ‘juice’ a few decades ago. I find ‘gear’ just confusing.
“Did you bring your gear to the mountains?”
“Yup, I got the tent, the isobutane, the backpack…”
“No dude, did you bring the gear.”
I mean seriously, how confusing.
But, yes, I brought the gear.
History
Of course, the steroid medicine children take due to having some sort of serious health problem is not the same as the steroids bodybuilders take to get HUGE.
Did you catch that amazing headline I recently saw on a men’s magazine?
RIP THROUGH YOUR SHIRTSLEEVES
It was so testosterone pumping that I nearly started beating my chest and roaring like Kong right there, shredding the magazine and tearing products off the shelves.
Guys: Who wants to ruin all their shirts?
Anyway.
Either way you shake a stick, a stick is a stick and it can hurt people. Steroids, of any type, are incredibly powerful endocrine disruptors.
Goodness, how I have gone toe-to-toe with Adahlia’s specialists over the years.
Six months ago, I was challenging her hematologist, who said he just wanted her to have the “opportunity” to try steroids, to exactly what kind of “opportunities” we were talking about.
For if I had pursued the “opportunity” of steroids at 9 months old, as the Boston heme team had wanted, he would not be seeing the same little girl before him as he did now.
He could not argue me there — he knew exactly what I meant.
And, just 3 years later, the new guidance is never to start steroids until at least a full year (12 months) old. Soon enough, I believed, the guidance would be no sooner than two years old.
“Certain things are irrecoverable,” I argued. “And I am the one who must live with the decisions made on her behalf. I am the one she will ask, ‘Why did you do that to me?'”
As I wrote in a previous post, I do like her current hematologist. He has carefully not weighed in when I told him how we were trying herbal formulas, not officially approving them (because he can’t), but also not forbidding or causing a scene over them. He has simply stated: “As long as they don’t cause her condition to worsen, I have no opinion.”
He has even admitted: “I have laid awake at night because I have destroyed the bodies of children [with steroids]. But I had to do it to save their lives.”
And at the time I replied, “And you had no choice with those kids. But Adahlia has a choice. Her iron is well-managed, the transfusions are working, she is healthy in every other way. Her choice isn’t steroids or death.”
Transfusions continue to work well for Adahlia. In fact, her last transfusion was just 8 days ago. She lasted 4.5 weeks after her previous transfusion. And she was sleeping and eating fine. Her energy, at 4 weeks and 1 day, was great. She was still attentive, athletic, and emotionally stable. Not napping. It wasn’t until 4 weeks and 3 days that I began to suspect that she needed more blood, because she was acting more irritable and did not want to be as physically active. Still, though, she didn’t nap. She was still eating. And when we finally took her in to the hospital, her hemaglobin was 7.1.
It was a victory. She was living a normal life with a very low hemaglobin. In other words, her low oxygen levels were barely impacting her quality of life.
And yet, at that very visit, I told Dr. N., her lead heme doc: “Put in a prescription.”
“A prescription for what?” he asked. “Just a blank prescription?” he joked.
“Yup, I need some serious pain relief,” I replied, not exactly joking, but knowing that nothing on a prescription pad would address what was happening inside me. “Blank would work, or write it for Oxy or Vicodin. Ha.. ha.. No seriously. You know what its for. Prednisolone.”
This doc had been campaigning for steroids for years. He was genuinely surprised I was suddenly asking for them without any prompting or persuasion.
For even he had to admit that we have Adahlia’s life on chronic blood transfusions completely optimized. Dangerously high levels of iron in organs? Not anymore. Upset stomach, leg pain, and difficulty swallowing? Not anymore. Irritability and attention and inflammation? Not anymore.
Her health is perfect… except she doesn’t make red blood cells.
And quite honestly, the last thing I want is to screw up our not-normal but survivable routine by adding something into the mix that could make her literally go crazy.
And yet, I did it. I chose it.
And she has been taking steroids now for 8 days. In fact, I just gave her the 8th dose.
How did we get to this point?
Because it was time.
It wasn’t time before.
Of course, I had hoped — desperately — that all my other tools would be enough. The shonishin, the moxabustion, the Chinese herbals, the homeopathics, the nutritional supplements… for years we have adjusted our approach as one system and then another came online and she grew more and more robust in every way. As the blood transfusions began to take their toll by increasing her iron toxicity levels (the body stores rather than eliminates iron, and too much is extremely toxic), we also began mitigating the effects of the blood transfusions.
And the result is that Adahlia is very, very healthy. Her iron levels are low. Her eyesight and vision remain perfect. Her teeth are well-formed and without cavities. She no longer complains of belly pain or leg muscle cramping. Her mind is good; she has no signs of ADHD or brain impediment — something I’ve been very concerned about ever since my herbal mentor first met her at four months old and said:
“I know you are concerned about her bone marrow. But that is not her biggest problem. She has inflammation in her brain.”
I have wished, very much so, that we would be able to avoid the medicine that the docs had been pushing on us since she was 9 months old. For her sake. And our sake.
Because the side effects are not good. I’ve listed them before, but a short list includes the inconvenient/cosmetic (puffiness / moon face and weight gain) to the very serious (uncontrollable violence/osteoporosis at age 8 / precocious puberty at age 6 / diabetes / adrenal failure / immune system compromise and other permanent damage to bones and hormonal systems).
This is to say nothing of the negative medication cascade, where you take a drug to stop one thing, only to cause three more problems that require three more drugs, that cause three more problems… and on you go.
Many parents of children with bone marrow failure are loathe to try steroids. They fear being responsible for even more damage done to their beloved children. They are terrified that they will lose the child they love to some sort of violent monster.
So why now?
1. Because we have gotten as far as we can go with natural and East Asian medicine. We have even tried herbal cortisol adaptogens. Not only did they not help her make reticulocytes (baby red blood cells), but her body did not want them when I tested them to see how her body would react to them.
The Chinese herbal formula we obtained from my Portland-based herbal mentor this past April no longer includes powerful anti-inflammatories aimed at her brain and marrow. Her body no longer needs strong anti-microbial and anti-viral herbs. Now, her body only wants gentle digestive and anti-inflammatory support.
Like any normal kid.
Homeopathic-wise, her body only wants a tonic for mental-physical exhaustion and one for adrenal support. (Not surprising given all her body has been through, and the fact that iron can be deposited in the adrenals.) It doesn’t need help with any major organ system except the adrenals.
Saying that we’ve gone as far as we can go is no failure of natural medicine. Is it a failure of acupuncture that it cannot be used to repair heart valve defect? Of course not. That’d be like saying surgical medicine is a failure because it cannot stop back pain. Acupuncture and surgery are designed to do different things. They each have their niche.
Adahlia’s body is online. It is functioning well. We’ve repaired the engine. If there was ever a time to apply the jumper cables, that time is now.
Why else is this the optimal time?
2. Because I have so many effective tools to mitigate the side effects of steroids. For example, many children on predisolone must also take prescription zantac or other medication to settle their stomachs and prevent reflux. Dr. N offered it right off the bat.
But I declined, because with my tools, I knew she would most likely not need zantac, which of course has its own set of side effects, including damage to the proper production of stomach acid. With my tools, we can calm side effects without a medication cascade. I already know that a homeopathic that helps the stomach “go-down” works for her. So I told him we’d let him know if we needed it.
More reasons?
3. I am taking an unprecedented two-week break from my practice later this month, starting next week. Dr. N warned me that in 7 days, we’d start seeing moon-face and – if they are going to happen – we won’t be able to deny the violent mood swings. My last two days at the clinic prior to taking my break would be days 9 and 10.
After that point, if there are very intense mood swings and violence, I will be right there to help her through it. This would give her body another 2 weeks prior to her school starting. Two weeks where she doesn’t have to deal with anyone but me, and I’m ready for and expecting it. Perhaps, by the the time school starts, her body will be adjusted.
Another reason:
I think I have to anty up on my word.
Ever since we found out something was wrong, folks have come forward claiming to be the ones that would have the key to healing her.
And I can’t really condemn them. As a Reiki master, having seen Reiki “work” for folks who have tried literally everything else, I know its tempting to think that there is one “all-powerful, no-fail” technique.
But that’s a fallacy.
If Reiki was destined to cure her, it would have done it by now.
Like I said years ago, I don’t think “proving” the power of one medical approach is the moral of her story.
I think her story exists to illustrate the power of integrative medicine.
Integrative medicine means that every medicine has its place.
Prescription drugs aren’t “bad.” Energy medicine isn’t the only thing that gets to the “root” of the problem (and there isn’t just one root). Herbal medicines aren’t “foolish” or “dangerous.” Homeopathic medicine isn’t “quackery.” Proper spine alignment is important. So is communication and flow through the fascia.
Every medicine has its time and place.
The key is knowing how to use them. How to integrate them safely and effectively.
While it scares me to put my beloved little girl on a powerful medicine that will absolutely rock her body and could very well destroy it… the time is now.
And I know the warning signs. And I can mitigate the side effects.
I will not let it harm her. I will not let it do permanent damage.
Part of me being able to do this to her is knowing that the above statements are true.
I have the power to prevent it from harming her.
The time is now to allow it to help her… if it can.
4. She tested positive for predisolone.
When we got the predisolone, I did a blind test of it versus filtered water. The water was clearly neutral. The predisolone was positive. Meaning her body wanted it.
I could not really believe it. But the next day we were scheduled to do the first dose. So we did it.
The next day, I retested her. And her response to the steroids was even more strongly positive. In other words, now that it had a taste, her body wanted the steroids more than ever.
Crazily enough, steroids were good for her. Her body wanted their help.
5. I know how to administer them to do as little damage as possible to her natural hormonal cycles.
Our bodies have natural cycles of cortisol and other hormones.
For example, you have a peak of cortisol in the early morning. This helps you to wake up. There is a natural dip, then, around 10:30 am. This is the optimal time to drink coffee — NOT at 8 am or whenever you wake up. Why? Waiting until 10:30 allows your body to continue to make its own cortisol in the early morning instead of overriding it with coffee. In this way, you preserve your body’s natural cortisol function.
Steroids are like cortisol in that they pull from the adrenals. Given in the afternoon, they can keep you awake at night. Given too early in the morning, they “take over” your natural cortisol spike. You’ll stop producing early morning cortisol if you constantly drink early morning coffee, thereby becoming dependent on it. Same with steroids.
Thus, I have decided to administer her prednisolone at 10:30 am. Some folks choose to break up their dose of steroids to avoid stomach upset but an afternoon dose messes with their kiddo’s ability to fall asleep. Because I don’t have to go to the clinic, and I don’t have to take her to school or camp, I am able to give the dose at one time whenever I want. And that ideal time is 10:30 am.
6. Steroids actually make sense given her case history and some things we’ve tried in the past.
Depending on how long you’ve followed this journey, you may know that this all started in my third trimester.
During our 1st and 2nd trimesters, Adahlia’s little baby pulse was strong within my own.
You may not know this, but in Chinese medicine, when we take the pulse, we are not just looking for rate and rhythm. In each of the six fingertip positions, we feel the health of certain organs associated with those pulse points. In the Right Kidney (or chi) position, experienced Chinese medicine colleagues could feel changes indicating that the baby was a girl. The pulse was strong. Sometimes, because it would make me smile, I would place my left hand over my right to feel her strong baby pulse myself.
But during the 3rd trimester, my right kidney went into failure a number of times. It was extremely painful and debilitating. But I was determined to carry her to term. I managed to do so… and to have a natural, drug-free labor to boot.
But somewhere during my right kidney’s series of acute failures, Adahlia’s pulse dropped out. I could still feel her alive within me. The kidney failure was not officially diagnosed until months after her birth. But no one can deny that kidney failure would be stressful for the baby. It was at this point that I think DBA, which is a genetic condition that is often not expressed, was triggered.
From the Chinese medical perspective, the right kidney is associated with original chi. It is sometimes called the Gate of Life. It is associated with the Energy of Being Here, of Yang energy Come Down to Earth.
From an esoteric perspective, then, I think my kidney failure sort of scared her on a very deep, internal and genetic level. It cut her off from the flow of energy that is required to bring a spirit down here to earth and keep it here. Yang energy naturally flows upward. It needs a strong Yin container to hold it.
Blood is considered the Yin container for the Yang spirit. When Yang reaches its greatest point, it turns into Yin. In other words, Yin is formed of Yang. While Adahlia’s problem is a Yin problem (a lack of blood), it comes from a blockage of original Yang. Yin holds Yang here. But Yin cannot form without Yang.
Esoteric mind-screws aside, I did an experiment last fall where I tried to boost Adahlia’s Yang via a non-herbal method. To come right to the point, I tried Fever Baths.
A fever bath is an old, traditional method of raising body temperature to stimulate healing. I believe it originated in Germany. During the months we took fever baths, Adahlia’s reticulocyte count increased. However, it did not increase enough to allow us to feel safe about skipping a transfusion. (In fact, during this time, all her counts improved, including her white blood cells.)
What does this mean to me?
It means we stimulated her original Yang.
Chinese medicine views steroids as an extreme stimulation of original Yang. It is not just lighting a candle at both ends, but sticking wicks all over the candle and lighting it from 360 degrees.
This is why folks on prednisone and prednisolone get “moon face” and puffy. Extreme Yang requires a LOT of Yin to hold it. The body’s response to such increase of Yang energy is to try to increase the Yin.
This is also why folks get hyperactive or irritable. The boost of energy or hyperactivity is obvious enough — it is the excessive, uncontained Yang. But why the irritability?
Because in Chinese medicine, we understand that all energy moves in cycles.
Irritability is associated with the Spring. Excessive irritability can indicate that the person is depleted in the energy that comes before it, that he or she doesn’t have enough energy to properly fill the next type of energy in the cycle. In this example, the Spring is weak because the Winter wasn’t deep enough… which is associated with the Kidneys.
In other words, we use steroids to boost the Winter/Kidney energy, but we are really aren’t adding to the system, we’re just turning up the ‘juice’ by lighting a candle at all ends and angles. It is ultimately exhausting to the candle. The person then becomes like a tree that doesn’t have enough water: Brittle, inflexible, and liable to snap.
Like folks on steroids.
So how is it going?
Well, we don’t know yet.
Today, we went to get her labs drawn. We will find out soon if there are any reticulocytes.
The suspense has been rather intense for me. And the week rather exhausting, as I’ve been watching her like a hawk.
I am honest with my child, for better or worse (I believe better, but time will tell). So she knows that she will gain puffiness in her face and body and her clothes might not fit right and we may have to buy new ones.
I’ve explained my rationale for trying them to her. Because she really doesn’t want to do blood transfusions anymore, she is willing to try steroids now, when she was adamantly against them before.
On Day 1, when I gave her the first dose, she immediately ran to the mirror to check her face. Poor dear! I explained it doesn’t work like that. So, she went to the den and sat down to read a book. Nothing else remarkable happened.
On Day 2, we went to the pet store to get some good bacteria for our fish tank. I made the mistake of taking her over to the cat section to look at the kittens. She became incredibly emotional, crying about how she wanted to take at least one home. She said she couldn’t stop thinking about how they would all have to spend the night sleeping in metal cages… how they just needed to be adopted…
… it was tragic. She continued crying the entire time we were in there, and all the time we were in the next store, doing our grocery shopping. I had to push the cart and balance her not-so-little body on my hip as she sobbed into my shoulder.
On Day 3, she had morning stomach pain. The homeopathic medicine stopped it. But no great emotional distress.
The subsequent days, she slept in a little later than usual, and seemed to want to stay up later than usual. In sum, she reported stomach pain on perhaps 3-4 of 7 days, which immediately resolved with the homeopathic medicine.
Emotionally, if anything, she’s been more cooperative and self-reliant than usual. It’s been… fine.
Her appetite initially spiked, but resolved to her typical levels (ie, not as robust as I’d like it to be. I wouldn’t argue an increase in appetite).
It has now been 8 days… a long time for a tiny person to be on a very high dose of steroids.
Dr. N. said that within a week, we’d definitely notice negative side effects in terms of weight gain and mood disturbance.
But again… she’s fine.
Is it because her body has been so well-prepared for this? Is it because we’re still supporting her with appropriate and individually-tailored probiotics, herbal medicine, homeopathics, fish oil, and other supplements?
I’d like to think so.
Wrapping it up
Because this is the longest post ever, its time to wrap it up. But I just want to say that our trip to the mountains was much-needed and awesome.
Joe was against it — the steroids had brought much uncertainty into our lives. He said, “When everything feels so unstable, it is good to have a stable place to come home to.”
I told him I was in 100% agreement. But we were going camping away.
I felt like I needed the mountain air… and well, the mountain itself.
And of course, we brought her “gear.”
Camping is big operation, and it can be especially tough to set up camp if you’re a relatively small adult and your helper is only 6 yrs old. It took me over 2 hours to pack, and another 2 hours to haul our stuff up to the campsite and set it up once.
The first night, like every night for the six nights prior, I barely slept. Instead of sleeping, I thought about the meaning of “vigilance” — and how having a sick child transforms one’s entire life into something like a vigil. Not quite anxiety. But a sense that one cannot sleep. That one must stay awake. Not necessarily because one is going to beseech or pray, although that often does happen, but because it simply feels necessary. It is a physical need — not an intellectual or emotional choice. We hold vigil for those we love — we give our minds and thoughts and time and energy to them.
The second night, however, I slept soundly. She and I both did.
Immediately upon coming home yesterday, I felt a growing creep of nerves and stress. But the mountain had worked its magic, and it was manageable. Adahlia and I both slept soundly once again.
And today we tested her blood… and now we wait.
We will accept the news, whatever it may be. I will digest it, analyze it, and ponder it.
And we will take appropriate action.
Because we do whatever’s necessary for those we love.
We give mountains.
And we accept the gear we need.