I always thought the best Christmas present ever would be to find out we are having another baby.
Now, that would extraordinary. However, equally extraordinary, if not more extraordinary, is the gift I received today.
It started over 2 years ago to be precise, but I've already set out all the details of how the serum sickness lead to this that lead to that.
And that I can't take, "I don't know for an answer." Most recently I could feel with everything in me that she had been diagnosed wrong. Through much prayer and digging through medical journals and functional medicine books, I presented to Little S's doctor my questions about MCAS (mast cell activation syndrome). Much to my delight, they admitted there is much evidence, her symptoms match perfectly, and the treatment she has received has calmed it. With that said, there is no official test without drawing blood during a major flare-which she doesn't have anymore. 🙌 Gift number one.
We received this a few months ago.
But the chronic pain would not go away. It was just sticking around. Low level, annoying aching every minute of every single day just reminding her constantly that she has to deal with something most of her friends don't. We tried multiple anti inflammatory supplements, increasing supplements that calmed mast cells, and even a low histamine diet.
Then one night at the end of November, Sara said something to me that would change her life forever. "Don't leave me, Mommy. If you do, I will hurt worse."
Now, we had been around this block more than a few times. And quite a few times we accused her of milking her pain. But this night, if was different. I could see it in her eyes. If I left, the pain would, in fact, get worse. But how is that possible? Is our brain that strong?
We cuddled for awhile. Then I encouraged her to be strong and sleep without me, which she did.
The next day I began looking into CBT locally. (This was terrifying to me. The idea that she would be alone in a room with another doctor that would probably know she doesn't take pain medication (because it doesn't work) and still hasn't received the completely formal diagnosis and treatment beyond functional medicine (not due to our own failures, but to the fact that the doctors couldn't find it.) I know that what we have done is legal, and her PCP is completely in the loop. However, I was preparing myself to answer the plethora of questions that might follow. When I called a local therapist, he directed me to PRT (Pain Reprocessing Therapy). He told me that it would be the most effective for her case and that there is a woman who specializes in this kind of thing for children and even wrote a book about it.
The minimum age for this therapy is Sara's exact age. (She just had a birthday that month.) The younger they start, the more effective it is.
Major progress is seen within 12 weeks.
Just 3 months.
Three months away from pain not controlling her life. But how?
The premise seems so hippy dippy, even for my own liking.
Chronic pain fluctuates. Stress makes it worse. Excitement makes it better. When you are doing something calming, like cuddling with Mom, the knob is at green or yellow. When you are doing something you don't like, like trying to go to bed or attempting math problems on your own, pain can turn to high yellow or red.
She agreed to do the therapy reluctantly, and has even said to me and her therapist multiple times, "This is silly."
We are officially 4 weeks in.
A third of the way there.
I was starting to get frustrated at how little ground I felt they had covered. I mean, this stuff is not cheap.
Then something happened.
It's hard to describe.
Today, while she was doing her exercises, she said to me, "My pain goes away when I sit just exactly like this." Now, this kid is not easily duped, and as much as she wants the pain to disappear, there is not a bone in her body that believes deep breathing and somatic tracking will work. She truly thought it was more likely that, despite the fact that her pain has not stopped for one second in the last few years, that sitting exactly like that is what resolved the pain vs the pain exercises we were doing.
Fast forward a minute and her sister opens the front door. Little S stands up, and the moment she does, the pain returns.
But here is the thing, a switch flipped. Even if only for a few seconds, the pain CAN be turned off. And that is just the beginning. The explanation behind it is unreal. Watching it unfold so quickly
See, the thing is, we calmed her immune system with the supplements. But her nervous system was still in fight of flight, always sending the message of DANGER through her pain. We have to get her nervous system to stand. down, and that is what we are doing.
It seems too easy, but I couldn't say I would do anything to get her pain to go away if I wasn't willing to try this too.
I'm just praising God for this amazing gift, that He is healing her in His own time, and His own way. And I pray that she will see it for what it really is, a healing gift from God.
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