NOTE: I am NOT a physician, and nothing on this page should be construed as medical advice. The following information may very well be worth what you paid for it, i.e. nothing.
This is a subject that's near to my heart (very bad pun intended). I've had problems with heart arhythmias for several years now. In particular, I've had problems with atrial fibrillation (a-fib for short); this is a condition in which the atria (the heart's smaller upper chambers) beat very quickly, and beat out of sync with the ventricles. The net result of this is that the heart beats irregularly and somewhat inefficiently. The symptoms of a-fib include heart palpitations, dizziness, fainting, chest pain, shortness of breath, and tiredness; you may have these symptoms (and perhaps others) in any combination, or you may have no symptoms at all. In my case, I had a fluttery feeling in my chest, and I tired very easily and would sometimes feel out of breath with only mild exertion.
The irregular heartbeat and pumping inefficiency caused by a-fib are not particularly dangerous in and of themselves; however, the irregular heartbeat can also cause irregular blood flow patterns in the heart. This can cause "dead spots" in the blood flow pattern, and clots may form in these places. If a clot gets pushed out of the heart toward the brain, you have a stroke. Needless to say, it's a good idea to get out of a-fib and back to a normal heart rhythm, if possible. If it's not possible, then taking a blood thinner (such as Coumadin) can significantly reduce the chance of having a stroke. (On the other hand, it also significantly increases the chance of bleeding to death if you're in a car wreck or other accident. Oh well, in the long run we're all dead anyway.:-)
I've been treated for a-fib in several ways: with drugs, by electrical cardioversion, and by catheter ablation. There are a variety of anti-arhythmic drugs on the market that can help at least some people. I've taken Norpace, Rythmol (propafenone), and Betapace (sotalol), none of which were effective by themselves. Cardioversion is a generic term for returning the heart to normal (sinus) rhythm. This is usually done either with drugs or electically. Electrical cardioversion is what you may have seen on TV shows like "ER"; this is where they put the defibrillator paddles on your chest and give you a shock. Eleictrical cardioversion would keep my heart beating normally for a few days, but I usually went back into a-fib within a week or so.
Finally, there's catheter ablation. Many older people (let's say 60 or more years old) suffer from atrial fibrillation, but some younger people do also (I'm 43 as of this writing). It's been found over the last few years that the cause of a-fib in younger people is different from the cause in older people: many younger people with a-fib have errant nerve cells acting as pacemakers when they're not supposed to. These nerve cells, which are usually up in the pulmonary veins, send signals to the atria that make them beat rapidly and irregularly. Catheter ablation is a process by which these errant pacemaker cells are eliminated. This is done by inserting a catheter into the heart via a vein in the leg (as is done for balloon angioplasty), mapping out the heart's electrical activity to find the offending nerve cells, and then using electromagnetic radiation to cauterize them. (Actually, if the offending nerve cells are in the pulmonary veins, then the nerves that connect the offending cells to the heart usually are cauterized instead; it's too easy to damage the pulmonary veins, causing them to narrow.)
I've had catheter ablation performed twice: once at the Michigan Heart and Vascular Institute in Ann Arbor, and once at the Mayo Clinic in Rochester, Minnesota. After the second ablation, the a-fib has become controllable with the aid of the anti-arhythmic drug propafenone.
Here are some useful links relating to atrial fibrilation:
The general public wasn't very aware of autism until Dustin Hoffman portrayed an autistic savant in the movie "Rain Man" in 1988. Before that time, I don't think anyone in the McKay household knew much about autism either; but a little while after the movie came out, we learned plenty.
Our daughter Kathy was born in 1989. At six months of age, she seemed a little more detached than her older brother, but nothing seemed too terribly wrong at that point. Later, though, she didn't seem to be developing normally. She walked at about the right time, but she didn't interact with other people very much. She came to us for comfort, but she never played games like peek-a-boo or put-and-take. She also didn't learn to speak as early as she should have.
A very perceptive friend of ours, who seemed to sense very early on that something was wrong, suggested that Kathy might be autistic. We also read the book "The Sound of a Miracle: A Child's Triumph over Autism", by Annabel Stehli. The autistic child in the book sounded EXACTLY like Kathy. We talked to our pediatrician about Kathy's development (or rather her lack of it), and she (the pediatrician) didn't seem too concerned; Kathy did seem to be developing slowly, but there's a lot of variation in kids' rates of mental and social development, and Kathy did at least show signs of affection for and attachment to her parents. She assured us that Kathy wasn't autistic. But when the situation didn't improve, she recommended that we have Kathy's hearing tested, but she turned out to have normal hearing. As time went on, it was pretty obvious that something really was wrong, and we sought other interventions.
We had Kathy evaluated by the county, and they thought she could be autistic; they recommended an early-intervention school program. She started going to a PPI (pre-primary impared) program when she was about two-and-a-half years old. It seemed to help; in particular, she started interacting with other people a little more. But still, she didn't speak in any meaningful way, or interact with others in a normal fashion. She liked to engage in repetitive, ritualistic behaviors, especially lining things up in order. She had a set of "seven dwarves" dolls, and she liked to place them in a row, always in the same order. She also liked to line up a set of colored measuring spoons that we kept in the kitchen, again always in the same order. (It was a while before I figured out that the order of the colors of the measuring spoons was significant: red, orange, yellow, green, blue, violet. To this day, we don't know where she learned the order of the colors of the rainbow.)
Kathy continued going to school, in a special class with several other autistic children. They worked a lot on speech and rudimentary life skills. The concentrated attention payed off; at least Kathy learned to learned to respond to a few simple verbal instructions and communicate her wants and needs.
We moved the summer after Kathy's sixth birthday, and in our new school district Kathy would be in a regular classroom full time, with a full-time aid. This worked very well. The other kids in class helped out with "Kathy Duty", which was good for Kathy, and probably a useful experience for the other children as well. Kathy eventually did learn to read. (At least she can say the words she reads; how much she understands what she reads is debatable.) She can also do rudimentary arithmetic, and she likes drawing. But she's still socially isolated, and doesn't really understand how to interact with other people.
Today, Kathy is twelve years old, and she attends middle school (with an aid, of course). She doesn't take all the classes that a child her age would normally take, but she does go to gym and art classes with the other kids. She finds certain sounds extremely irritating, if not outright painful, so music classes are a problem. (Kathy often sings, but doesn't like it when others sing or play instruments, and she especially doesn't like whistling. The noise she hates the most is the sound of a dentist's drill, but it's hard to blame her for that.) Pretty soon she'll reach puberty; who knows what fun that'll bring. Stay tuned.
Living with an autistic child requires a few lifestyle adjustments. Autistic people vary quite a bit in their behavior, so our experience probably can't be said to be typical, but it should give you some idea of what it's like to live with an autistic child.
Kathy can be a very sweet and very cute little girl. She can be affectionate, although she may show it in strange ways (like when she gives me a hug and says "Nice doggie!"). She can also be very persistent and very obsessive, and she has no sense of what constitutes acceptable social behavior. For instance, one time Kathy spilled a glass of water on herself in a restaurant. She then did what she would do if she were at home: she took her dress off so it could dry out. That's not so bad for a six- or seven-year-old, but we have to make sure she doesn't do that when she's sixteen.
Autistic people often have distorted senses: they may be extremely sensitive to sounds, smells, or visual stimuli, or they may be almost completely insensitive to them. Kathy seems to have very sensitive hearing. Sometimes when we're outside, she'll put her hands over her ears for no apparent reason, then a few seconds later we'll hear an airplane flying overhead. Kathy seems to be able to hear it before the rest of us can. Kathy also seems to have a good sense of smell. Combining her sense of smell with her lack of social skills can result in "interesting" behavior. For instance, Kathy often will smell people: she'll just stick her nose against them and inhale. For people who have never met Kathy before, this can be rather disconcerting, to say the least. (She does this to women more than men; maybe women smell better?)
One theory about autistic people is that they don't know how to view the world from another person's viewpoint. We've seen this in several aspects of Kathy's behavior. For instance, her attempts at being sneaky are often rather crude: she may try to drag us out of the kitchen so that we won't be there to stop her from raiding the cookie jar, or if there's something in the refrigerator she wants, she may try to get us to sit down where we can't see the refrigerator. She doesn't seem to have figured out that there has to be a reason for us to go someplace else and leave her alone. However, she has learned, probably by rote, that she can get away with lots of things when everybody else is distracted. That's when she sneaks into the pantry cupboard and eats raw sugar, or gets out the permanent markers and draws on the wall in her room. (When she was younger she liked to get into the bathroom and smear toothpaste all over everything, which made a HUGE mess. On the other hand, we know someone with an autistic child who was obsessed with breaking glass, so it could have been a lot worse.) We've made the house fairly Kathy-proof, but she's also very persistent, so we have to make sure we're NEVER distracted, or that Kathy's confined someplace where she can't get into too much mischief. That's not too hard to do for a few hours, but constantly being alert wears on you.
If I had to sum up what it's like to raise an autistic child, I'd say it's a lot like having a very large, strong 3-year-old who never grows up. We have to have a relatively kid-proof house; we still have to put up with tapes of Barney the purple dinosaur; and we have to be vigilant to make sure that Kathy doesn't wander off alone, or get herself into trouble. But it's satisfying when she does make progress or learn new things, as it is with any child. If anything, those occasions seem more meaningful.
After spending twelve years raising Kathy, we've learned to cope pretty well. (At least I like to think so.) Part of this process has been Kathy's progress: she's learned something about how to behave in public places, and she's started to accept that she can't always do exactly what she wants. But we've also developed some coping strategies of our own.
One thing we've all done is develop a high embarassment threshold. That helps us deal with the times when Kathy is NOT well-behaved in public. It also helps when dealing with people who don't understand our situation. Sometimes when we take Kathy out, we put her on a "leash" that connects her wrist to ours. It only takes a few seconds of inattention to lose track of her, so the leash is quite helpful. But every now and then we get a snide comment about it, or someone who sees Kathy throw a tantrum will say something like "There's nothing wrong with her, she just needs a good smack!". Well, the world's full of ignorant people and jerks, and we've learned to accept that. We usually just ignore such comments.
Another thing that's been a big help is living near family. We live close to my wife's parents and brother, and they occasionally watch Kathy while the rest of us go out and do things together. We have a friend who occasionally is willing to take Kathy to her house overnight. These respites are very helpful. (When Kathy is away, it seems strange not to have to think about where she is and what she's doing.)
We also sometimes just let Kathy do her own thing. She loves to watch video tapes, and she likes to rewind them and watch the same short stretch over and over. Normally we don't let her do this, because it's murder on the VCR; but sometimes we need to get some work done, or just need a little break, and when she's playing with the VCR we know where she is and that she's not getting into anything else.
If you have an autistic child, I hope these strategies give you some ideas about how to cope with your own situation. You CAN adjust, and if you develop any strategies of your own, let me know what they are.
One of these days I'll summarize the many books on autism we have, but that'll have to wait for another day.