Sunday, June 21, 2009

The Falls of Glen

We are at the lake this week and next. Routines are different for us, but Robert's routines remain constant: bolus/pump feedings at regular intervals, personal care, dressing, bathing, trying to fit in all the small details of OT and PT where possible, and, yes, the endless loop of medications.

Maximizing the potential of disabled children takes many forms: parental love and attention (of course, but nothing goes without saying in my world), therapies of various sorts, medications, and others. Physical, speech, and occupational therapies have been important skills for us to learn, but medication has been the route we've traveled most often. As I'm struggling to figure out what image to use to describe this 'route', the first thing that popped into my mind was a scene from the movie, Last of the Mohicans, the one with Daniel Day Lewis (the only movie in which he is terribly sexy, but that's another discussion).

So Lewis' character, Hawkeye, is trying to help Alice and Cora escape--I don't know--the wilderness, the other Indian tribes, the French, the smoking remains of Fort McHenry. They appear to be trying to return to civilization, whatever that is. In the movie, civilization consists of British people drinking tea out-of-doors on parlor furniture in the middle of a field of some sort. This kind of reminds me of our lives: pretending to some sort of order against a backdrop of either benevolent or malevolent mayhem, faking decorum the whole way (or just not bothering).

Hawkeye leads the women into the Appalachian woods and into a cave beneath the 'Falls of Glen.'

Coincidentally, when we go to my parents' main house in Vermont, not the lake house, we drive through the Glens Falls area, specifically through the towns of Whitehall and Fort Ann. There are still a variety of things named after this period in history: a hotel or restaurant called The Portage (the land trail between Lake George and Lake Champlain that connects the water highway that links NYC to the St. Lawrence Seaway). There is also a large outlet shopping center.

Well. Hawkeye tells Cora to 'stay alive, I will find you' just before he jumps into the falls and her small party of British folks dressed in clothing inappropriate for wilderness junkets is captured by Magua and his band of evil French-influenced Native Americans. Hawkeye does this because he reasons that if he is captured with them, he will be unable to save them. Cora then does everything in her power to leave a trail he can follow: breaking branches, leaving footprints in soft soil, and so on.

The endless loop of medications can be a bit like trying to track someone or something through an Appalachian forest. The terrain feels a bit familiar, but the signs that we're looking for are elusive and easily misread. It takes some kind of powerful love or crazy to keep pushing back the low-hanging branches, watch for the poison ivy and oak, and part the undergrowth and ferns without crushing them. Whatever those old growth east coast forests looked like, they were certainly cluttered with deciduous vegetation, thick, so thick a clearing or a sudden precipice could be a nearly complete surprise. And, really, I'm not that fond of hiking. Bugs. Leaves in your face. Stuff underfoot.

At times, Robert has been on up to 7 medications at once. This requires actually writing things down or having a partner who can also remember them and their doses so you can continually cross-check the day with him or her. When did he get that Artane dose? Was is the last one or only the second one he's supposed to have today? Should we give the Prevacid early because we've gotten behind on the bolus schedule? Some medications are given once a day, some b.i.d., some t.i.d. We have never had a drug regimen in which each medication was given the same number of doses per day. Add an antibiotic to that because he's actually sick with some regular thing . . . .

When I am away from Robert, I find myself looking at my watch for the first 2-3 days and keeping track of about when he should be getting each of his medications and each of his boluses.

Medications (or vitamins in prescribed high doses) Robert has taken over time: sinemet 10/100, sinemet 25/100, artane, prilosec, prevacid, zantac, reglan, ritalin, zoloft, glycolax, baclofen, intrathecal baclofen, b-vitamin complex, biotin, mitochondrial vitamin cocktail. I'm not even sure I can remember some of the minor, trial-time medications or hospital-only drugs. And that's probably not a particularly long list compared to other kids.

The extra-added bonus with Robert of course, is that he's tube-fed. Many of these medications do not come in liquid forms. Sinemet, for example, is only soluble in vast quantities of liquid fat--like, say, we could dissolve the half-tablet he needs in a cup of olive oil. For years, the proton-pump inhibitor acid reflux drugs, Prilosec and Prevacid, which saved his life, were only available in time-release capsules that he could not swallow. If the gel cap was pulled apart to release the little beads and these were somehow mixed in something so that they could be pushed through a g-tube, there was no guarantee the medication would work effectively.

A lab at the University of Missouri saved Robert's life with a solvent that stabilized either drug for about a month. But it had to be refrigerated, which made travel a bit difficult.

Most of the stuff we have to crush into powder or release powder from the tiny capsules, one by one, and mix with applesauce, which is a great binder and suspension-maker, thin it with a bit of water and draw up into syringes.

When I look back on this decade plus of wending our way through the medication wilderness, all I really want to do is tear my hair out. Because it always felt as though we were getting somewhere but never arriving. Yes, that was the same tree we passed a few hours ago, and it is getting dark. But we keep walking by other stuff that looks different, don't we? I would yell at the previous incarnation of myself to "get a f*cking compass," but, unfortunately, they do not make compasses for administering & monitoring medication that are g-tube compatible.

But, as I have said in random previous posts: we appear to be getting somewhere. Yes, we are in a clearing and the Falls of Glen are near. I can hear the water rushing. The air smells damp. I don't know who will find us though.

In plainer language, we stripped away most of Robert's neurological medications about a year and a half ago, bit by bit, one by one, painfully and with anxiety. At the same time, we started giving him biotin. He picked up tremendously on all his existing medications plus biotin, and then gradually regressed as we stripped them away. We changed his Sinemet formulation from 10/100 to 25/100 and he's still on that. We left Zoloft lying by the side of the road--we were using it off-label for serotonin replacement, not for emotional problems. It is a rather dangerous drug for children. We waved good-bye to Artane and never looked back.

The upside to his old medications was that they gave him the gift of imperfect movement, of any movement at all. The downside was that they left him in a state of fluctuating spasticity and rigidity patterns. Yes, the medications caused spasticity and rigidity. Biotin relieved a lot of this hypertonia. And it restored movement, too. At least in the company of Sinemet.

Then we started upping the amount of biotin we gave him. Biotin is a B vitamin. You can buy it at GNC. The biggest commercially available capsule for human consumption is a 5000 microgram capsule, which is 5 milligrams. Robert takes 150 mg/day now. That's 30 capsules. He goes through a 120 count GNC bottle of 5000 mcg in 4 days. Each bottle costs $29.99. Insurance doesn't cover it.

But he can move. And raise his hands and play with toys a little, just a little. And pick things up with two hands. And grab at stuff. And he's cognitively clearer. And these are clear markers on a trail that seems to be going somewhere.

While there had been talk of adding a mitochondrial vitamin cocktail, but no action on the part of the doctors, my husband and I starting looking at a bottle of "Stress Complex B Vitamins" that I had been taking on a daily basis, which was sitting on our kitchen shelf. We were figuring by now that Robert has a metabolic disorder, which is the way this thing presented initially.

I was certain, when he became ill, that my giving him a vitamin each day, then gradually becoming inconsistent, was connected to this. No one else thought this. You know, the Enfamil infant vitamins, the ones with the bunnies on the label. After we brought him home, after the first hospitalization, I started giving them to him again. He also started taking PediaSure, which is chockfull of vitamins. He improved pretty steadily. Still no one thought this. Then I started getting inconsistent with the vitamins again, and then he crashed again. Still no one thought this.

To be fair to our doctors, what happened was awfully dramatic. And there were no medical findings: no positive or abnormal test results, no data. No strange MRIs or CTs. Just lots of chaos, lots of static. And he was really, really ill. Like he might not survive ill. And the g/i reflux was part of it and that required drugs. And some of those drugs appeared to interfere with his neuro status, and let's just say that once you go the drug route there are times you can't see the forest for the trees.

But I know what I know. And I know what my hunch was initially. And human metabolism is really, really complex. And the Stress Complex vitamins were sitting on the shelf. And with human biochemistry, there really are no direct lines between cause and effect. The leg bone's connected to the hip bone, you get the drill. If one B vitamin was doing something, perhaps he needed higher doses of other B vitamins, little helper vitamins.

So we gave him the B vitamin complex. And it helped, too. And he started bearing weight on his feet, and reaching higher for things, and his muscle tone relaxed more, and he started making vocalizations that had differentiated sounds. And he could move his head independently again. And he was experimenting with trunk control--rotating to the side, lifting up his legs with his abdominal muscles while seated. That kind of thing.

As I said earlier, his neurologists were so amazed, it was frightening. So they gave us a modified mitochondrial cocktail because, guess what?, the fabled mitochondrial cocktail with full of, you guessed it, B vitamins.

And some other stuff. Which we started giving him on Thursday night. Better weight bearing. A little higher tone, but sometimes that is concurrent with improvement (or had been when he was on an improvement cycle early on with the errant bunny vitamins). He vocalized "L" in combination with vowel-type sounds today.

So off to look for broken branches, branches broken with intent. For footprints in soft soil. Stay alive, I will find you.


Elizabeth said...

This makes my head spin. For you and for me. I am possessed, every now and then, with what I am putting into Sophie (the vitamin route) -- I get slack, I start it up, no one else is on board -- the possiblities are endless.

It sounds like your hacking away at the path is making it a little less dense. It must be so stressful to know, on some level, that your scythe is that powerful.

Leightongirl said...

Everything is in here, and more. Thank you.