After we received the negative iron test, we proceeded to test for dystonia, fragile X, chromosome microarray and exome trio, MR, neuropsych exam, spinal tap, and other miscellaneous tests including 2 blood panels and 2 covid tests!
One thing would come back negative (wahoo!!) but then would have to test for another thing. The whole experience was so stressful. You’re happy its negative, but then left with the unknown. On top of all of this, Jackson was going through weird sleep cycles. Sleeping every Thursday or Friday, up to 20 hours a day. This went on for a month straight. (He still randomly has those days!) We couldn’t correlate it with anything! I literally would write down exactly what he ate, what we did that day, the time he laid down, anything just to see if we could find a pattern. They tested him for mono, too. Negative! I was so desperate, I just figured it had to do with the planets going in and out of retrograde. Literally, that’s how desperate I was for some sort of explanation. Crazy, maybe, but I’m kind of a crazy mom!
It was a Friday afternoon, Jackson was having a sleepy day and I was crying on the couch with my friend Kristina consoling me. It just became too much to handle. Surprisingly, his neurologist office called. They had results and they wanted to go over them… Monday morning. WTF, why would they make us wait over the weekend with that angst?! The doctor called Monday morning and explained that they found that Jackson has an genetic mutation, MAOA, where his brain does not break down chemicals as it should. Chemicals include dopamine, norepinephrine, and serotonin. So to further investigate, we scheduled a spinal tap. Jackson was to stop all medication, including his ADHD, anxiety, tremor, allergy, and vitamins so we could get a clear look at whatever the heck they were looking for.
Fast forward, spinal tap results (fluid/urine, 7 total tests) came back in “normal” range with the exception of Homovanillic Acid, which was slightly below range. So what does all of this mean? (deep breath!)
It means that the doctors were prescribing him medication to elevate his chemical levels, that were already elevated and could not be broken down due to the mutation, therefore basically doubling the amount of chemicals which was the cause of the brain deterioration. In short, we listened to our doctors, respectfully, and gave him medicine his body didn’t need and couldn’t handle. What’s worse than knowing your son is sick, is finding out that you were the one feeding it to him.
Looking back, I know that we did everything we could to avoid medication. Diet changes, life and home changes, natural supplements, etc. We trusted our doctors and they were wrong. I’m not mad at them, I try not to beat myself up for it, but we knew all along there was something not right. Something was off. The answers they were giving us weren’t “fixing” him or his ailments. Moral of the story: trust your instincts! God gave them to you for a reason! We will have a follow up MRI in April to see if there have been any changes with the brain damage.
This was long winded, but important for me to share. I truly hope our story can help someone out there. In my next blog, I will update you on what we’ve been doing after we took the reigns back!