Friday, October 28, 2011

The Speed Of Light Has Been Exceeded

Last month, I saw a report that scientists in Europe had recorded neutrinos moving faster than the speed of light. Up until that report, we all pretty much thought that we could rely on the speed of light being that one constant that simply wasn't at risk. The scientists involved knew that they would be open to all kinds of scorn, doubt and disbelief so they used really, really accurate tape measures to check their experiment. As far as I know, they haven't yet found a problem with their findings.

Normally, such earth (and time) shattering discoveries would worry me. This time, it simply confirmed for me the possibility, nay the empirical reality, that one other "just can't happen" rule of physics is bunk.

Perpetual motion machines are theoretically impossible.

Theoretically perhaps, but empirically - well, just stop by Spike's house and have a look.

I have previously mentioned that Spike, a.k.a. Mr. Twitchy Fidget, exhibits just a wee bit of hyperactivity due to his twice daily pharmaceutical cocktail. Lots of kids are hyperactive, especially four year old boys. I've never had a four year old boy before so maybe he's just acting normally. I'll let you be the judge.

Let's review the evidence.

1. Today was guy's day out for lunch so I took him to McDonald's. Don't worry, we didn't eat there. No point in creating community-wide chaos. When we returned home with the food, I sat him down for one of his favorite meals. In ten seconds he had disassembled that once happy meal and flung it all over the house.

2. Spike is approaching his fifth birthday. He still eats from a high chair because it is a government approved child containment device. Handcuffs and leg irons are still awaiting approval. If he used a normal chair, he would have died of malnutrition six months ago.

3. The drive to Cleveland is close to ten hours. For five of those hours he continually tried to open the passenger door with one hand while throwing things with the other and kicking the seat with both feet. Yes, for five hours.

4. Spike literally spends more time standing on his head than in any other position. This is no exaggeration. He simply cannot stop somersaulting and flipping onto his head.

Ok, those examples could describe a lot of kids but Spike only has three possible states. Sleep, seizure and hyperactivity. If he is not sleeping or seizing, he is hyperactive. Not most of the time, all of the time. Every minute. EVERY minute.

The video shows him in the hyperactive mode. I cannot emphasize enough that this is the only way he behaves when awake and not seizing. When we put him to bed, he behaves exactly the same as in the video - sometimes for hours. There is nothing we can do except restrain him by pinning his arms and legs in a full body bear hug. The wrestling goes on and on until somebody passes out or has a seizure. Anyone. Every night.

I know that some kids have even more severe conditions than Spike. Some are developmentally disabled while others have neuro-muscular diseases. Their parents have to deal with this behavior for a lifetime. I really don't know how they do it.

Extreme hyperactivity has become the dominant handicap affecting Spike AND his parents at this point. Seizures are terrible but we can handle them even if they happen 50 or 100 times a day (and they do). Sleeplessness is a more reliable constant than the speed of light but, believe it or not, you can get used to that. The perpetual motion is in a whole different category. There are times when you want to just let him be, let him thrash and kick and throw things for a few minutes. But you can't. Every day, he comes close to breaking bones or hitting his head. He has no control and no fear. That's an extremely dangerous combination.

The second to worst part of this condition is that it is, to my mind, totally unnecessary. The hyperactivity is caused by the combinations of drugs he is taking. For the most part, the drugs are supposed to have sedative side effects. That's never been the case for Twitchy Fidget. Everything they give him pushes him further out of control.

Spike has 50+ seizures a day. THE DRUGS DON'T WORK!

Why is he on these when, everybody join in now for the chorus, THE DRUGS DON'T WORK!

The medical literature and his neurologists agree that a patient who does not respond well to the first two anti-epileptic drugs is unlikely to respond to any others. Nonetheless, they usually try a third drug before declaring the patient's condition intractable. After such failures, what do they do? They keep giving the patients drugs! WHY?

Well, it could be worse. The patient could have seizures every day instead of once a month if he went off drugs completely. Is anyone listening? Spike is having 50+ seizures a day!!!!!! If the absence of medication caused him to have 100, I'd take that trade! Seriously, I would.

Last week, I had finally gotten Spike off of the worst combinations of drugs (for the second time) and he was FINALLY calming down. A new neurologist looked at his record, asked some questions and exclaimed "This kid is having 50 seizures every day! He needs more medicine!" I fought and fought but eventually gave up and... here we are again. His life is miserable, everyone's life is miserable - for no reason.

Today I called up the neurologist's nurse and asked her to have the doctor give me a weaning schedule for the latest offending drug. She took a thorough description of everything that was happening and said she would talk to the doctor but that they usually don't like to reduce the medications so quickly. I told her to start the conversation with the only thing that has worked for me in the past in getting doctors to reduce the use of ineffective drugs. "Tell the doctor the following and please quote me : 'First, do no harm.'"

An hour later I got a call back with a weaning schedule ... but the good doctor just couldn't resist years of practice. The weaning schedule for one drug came with instructions to increase one of his other medications to make up for the reduction in the first one. Doctor, THE DRUGS DON'T WORK!

Some realities we just have to live with. Spike has uncontrolled seizures. I have to live with that unless and until surgery removes the source of the seizures. That's a reality. Medications are a CHOICE. I CAN control those. I understand that his seizures MAY increase a bit (although I don't think they will). I understand the tradeoff. I really do.

I mentioned that there are times when Spike is not hyperactive. The following video shows one of those times. This was not a difficult video to time. I simply waited until he stopped somersaulting and standing on his head. You may note that he still has hyperactive motion in his right hand but believe me, he is as still in this video as he ever gets. Be forewarned, don't watch if you are particularly sensitive (THAT should increase viewership!). Note the relative calmness, followed by the cute smile right before he goes down for the count.


Obviously, I cut out the end of the video that shows the full seizure. There's no reason for anyone to see that unnecessarily and share my nightmares.

I posted this to make the point (again) that I really do understand the potential tradeoff.

Time for a confession and it's a big one.

Hard to even write it.

There are times, not every day but frequently enough, that I do the unthinkable as a parent.

I actually hope for a seizure. Just to knock him down and put him to sleep. Just to stop the motion.

That's what the drugs have done to me.

1 comment:

  1. Dear Tom,

    We hear you and we feel for you.... Please be assured even loving parents can sometimes harbor unloving thoughts because we're after all human, we get tired, hungry, impatient, selfish, etc. Sometimes we feel we can't go on any longer but somehow God renews our love, strength, patience and we take one day at a time.... As parents to a 20 yr old son who for the last 11 years had needed 24 hr care, we can understand your exhaustion, frustration, and utter helplessness. (We too always are leary to give our son medicines and still strive to reduce his meds whenever we can.) Thank God He does not leave us nor forsake us. We don't understand His ways but because of what He has done in the past, we know we can continue to trust Him for the future. Everyday, He gives us new mercies/grace/strength for the day.

    We'll continue to pray for Spike, you, Chenling, and the doctors. Knowing the drive up there may be taxing on the nerves, we'll pray for that too. You're on a tough journey but you'll also experience special blessings from God and in the future you'll be able to help others because of the comforts you have received, :)

    Praying for and with you,
    David & Jeannie Chen