It has been a couple months since I updated on A’s situation, but our investigation, and the stress involved, certainly hasn’t stopped. You may want to catch up by reading past posts regarding our beginning, his drinking fetish, naturopathic treatment, and a first step toward healing.
So, after we got the lab results back, A began a regimine of fish oil and natural mineral supplements. Between the spinal adjustments, the supplements, and the therapeutic riding, A was progressing very well physically. Within a couple weeks, we saw drastic improvement (I’m talking like a different child!) in his balance and coordination. He quit falling down, all but stopped stumbling and tripping over his own feet, stopped dragging his left foot (which has always been the more troublesome, due to the bad hip), and we never had to hold him on the donkey anymore. He could reach both arms to the sky, close his eyes, and ride while balanced for minutes at a time–a HUGE, miraculous achievement for him! While we aren’t really focusing on cognitive development per-say, we did notice an improvement in his comprehension and memory of instructions–something he previously had great difficulty with.
Unfortunately, within about 4 weeks, while his physical issues were improving, his behavior began to decline tremendously. He was acting more out-of-control each day, picking on siblings (to include throwing toys, biting, hitting, etc.), irritating everyone, being mean to the animals, getting into trouble, and becoming very selfish and defiant toward instruction. I know, many of you are probably thinking “That’s typical 3-year-old behavior.” However, you must understand that while our children all exhibit these characteristics on occasion, as the human nature is naturally sinful and selfish, we do not tolerate it as a general behavior. From infancy, we encourage self-control, a generous and thoughtful spirit, a helpful atttitude, and a willing heart. So, this change was something new for A, rather than just typical behavior. It literally happened within a couple weeks. Whereas we used to have the occasional “bad day” with him, it rapidly became the occasional (and increasingly rare) “good day.” I was forced to seperate him from his siblings and the animals, making him just play in his room, in order to protect the others from physical injury, protect the animals overall welfare, protect him from over-discipline, and protect my sanity. He was spending more and more time in his room alone, and less with us.
We had to get through a trip to Red Gate, and then, upon return finally have our visit with his primary care physician in the hopes of getting a referal to a specialist. At his last appointment with our Naturopath before we left, I described the change in behavior. The doc explained the change as a “pendulum swing.” Essentially, his body had, for so long and for still-unkown reasons, been lacking the nutrients necessary for proper development and function (one side of the pendulum). Now that he was receiving the nutrients he had needed so badly, his body, and in particular, his brain, had no idea how to handle it. It became akin to an ADHD person completley unable to have any self-control, thus he was on the opposite side of the pendulum. The goal was to balance the pendulum in the middle.
I told you, I love the amazing way this guy explains things so I can understand exactly what is involved!
So, we decided to cut his minerals in half. Furthermore, because of the lengthy trip and the immediate need to get his behavior controllable, he recommended an herbal supplement known for calming such behavior. A’s behavior improved somewhat, and a few days later we left on our trip.
Within 2 days of our arrival, A began showing tremendous stress out in public. It was like he absolutely couldn’t handle any change to his routine. If we gave him an instruction to do something, he would literally freeze up and refuse to move. He threw a few tantrums, but more concerning was that, the rest of the time, he had this glazed-over look in his eye, like he never really saw what was going on. He rarely smiled, laughed, or seemed happy. He began forgetting everything he knew. He couldn’t tell us his name, age, colors, or count to 10–all of which he had known perfectly just a week earlier. We were scared. Physically, there was nothing wrong, and he was still eating fine and acting relatively normal around the house, so we knew a trip to the E.R. was useless, but we were 800 miles from the doc and still had almost a week to go. It was truly frightening. One night, about 4 days into this, S and I had a long discussion about changes and such that could have brought it on. We knew the biggest changes were his minerals and the calming herbs. We decided to stop the herbs. By the next day, A improved somewhat, and within 3 days, he was back to normal. I guess after a week on the half-dose of minerals, his negative behavioral changes had improved, as he pretty much was back to the A we knew and loved. We kept him on his half-dose of minerals, as we knew those were necessary for his metabolic and kidney function, but put the other herbs away for good. When we returned from our trip, the doc was quite surprised at the effect, as they were trusted herbs he had used for sometime and never had that problem. Nonetheless, he actually gave us a refund for the bottle of remaining capsules.
At that point, A hadn’t seen the doctor in 2 weeks, but the doc didn’t want to do any further adjustments until after we saw the primary care doc. He also had me stop the minerals. Stupid as it sounds, he wanted A to be his “normal”, untreated self, in hopes the doc would see the issues firsthand and give us the referal we so desperately needed.
As a mom, that is a hard place to be. I literally had to watch all the work I/we had done over the last few months, and all the improvements A had made, disappear into oblivion, all so his regular, medical doctor would believe our case. It was encouraging to know we could get back there, as at least we knew a direction this time, but still….
A few days before our “big” appointment with the primary care guy, I managed to pull a few strings (and God smiled on us), and I convinced the techs to order me another round of bloodwork so we could see if any changes had taken place since treatments had begun. I didn’t get to see the results until the doc appointment. That morning, I loaded up all the kids, drove in to the base, and eagerly awaited the doc. Much to my dismay, it was the same ‘ole, same ‘ole, and I was reminded why I had sought out the naturopath.
He pulled out the lab work. Out of roughly 10 things tested, 8 of them showed A’s values as “High” or “Low,” rather than in the normal ranges where they should be. I noticed a few slight improvements thanks to our mineral treatments, but still, to my semi-trained eye, it was clear that something was wrong inside this little boy. In addition, by now, 3 weeks had passed since we had seen the naturopath and A had been off treatments of any kind. Physically, he had that old, tired, look in his eye. His left foot was cocked out and he dragged it slightly when he walked. He had a bandaid on his head, and several dings from falls and run-ins. He had a night-terror or two (which hadn’t happened since we started treatments). I described his still-occasional forgetfulness, and how he just “doesn’t get it.”
It was all I could do to hold it together when the doc looked me square in the eye, and (nicely, mind you) told me, “We don’t worry about physical or cognitive issues like this until children are at least 5 years old.” So I asked about the labs and their clearly bad results. He justified them with, “Oh, well, they don’t really mean anything. All those ‘normal’ ranges are based on adults, so with him being so young, we don’t need to worry about them.” Out of desperation, literally pleading with this guy to give us the help we needed, I mentioned the miraculous changes we had witnessed with therapeutic riding, spine adjustments, and minerals. His reply, “Oh, you can’t change these levels with anything oral. You can eat all the salt you want, and that salt value won’t go up. This ‘low’ result just means he had too much to drink before the test.”
ARE YOU KIDDING ME?! His symptoms mean nothing, his lab work is useless, and even though I half-dehydrate him some days to try to control the copious output of urine, you’re telling me he’s just overhydrated?!!! Somehow, I kept my composure until I left the office. The one help I had was that, in my desperation and pleading, I guess he had some small piece of a heart, and ordered a full metabolic lab panel to double check things. As soon as we got in the van, I called my husband and lost it. Oh, the frustration was almost more than I could bear at that moment! It took me a minute, but I eventually changed my mindset to being thankful for the labs ordered, as that would at least give us something to work with.
The labs had to be fasting and dehydrated (as in, first thing in the morning), so we took A in first thing the next morning. Two days later, I managed to get him back into the naturopath to hold us over. He re-adjusted his spine, neck, and hip, which were a mess by that point. It took a second visit a few days later to get it fully corrected and get A walking straight and not falling again.
Now, we are back on our weekly chiropractic adjustments and therapeutic riding to keep him going and at least prevent injury. He is on occasional doses of the minerals, again, just to keep him going until we figure out the next step. Next week, we have our follow-up with the primary care guy to discuss the lab work. S has volunteered to handle that appointment. He is less emotional, and isn’t afraid to be firm and even pull some rank if need be. We have also been blessed to learn about a particular policy that applies at this base (I’ve never heard about at other bases), that essentially allows S to go to the Tricare office (military medical insurance) and demand a second, civilian, medical opinion. They are required to give it to him (assuming we understand the policy correctly). So, if the pediatrician is as unseeing at this next visit, and S has any concern about those lab results at all, his next step will be the Tricare office.
Again, we are in a tough spot. Certainly we don’t want to wish for something to be wrong. Yet, our gut screams that something is wrong. We just need the proof to tell us what direction to go in next. Several people have asked me why we don’t just pay out of pocket and go see a specialist ourselves. The problem, though, is that I don’t know which one to see! Do we need a nephrologist who deals with kidney issues? Do we need a neurologist who deals with the spine, brain, and cognitive issues? Or do we need an endocrinologist to deal with metabolic and digestive/absorbtion issues? I have no idea since we haven’t pinpointed the root cause yet. So, in the mean time, I guess my prayer is that these lab results will be what we need to point us in the right direction.
I know God knows, and is in control. I am willing to do what needs to be done to help our son. I just pray we can figure it out sooner than later, while his little brain and body are still developing and have a better chance at catching up to where they need to be. I am trying to be prepared for the possibility that perhaps the in-utero drug exposure may have simply caused un-measurable, irrepairable damage to his system and this is who he is. But, I just can’t accept that until I can be confident we have done everything we possibly can to give him the best life possible.
Thus, the journey continues….