Sunday, August 31, 2008
First off, thanks to everyone who's been reading and commenting and sending prayers and positive thoughts about our Rats'm Frats'm Blankety-Blank Seizures. We're pretty clearly back in seizure-land at this point, going at the rate of one knock-down per day with several disorienting single-jerks (plus the ongoing internal electrical storm that has been present for the past two years at least). Good news is, there was only the one big blue-lipper so far. The subsequent ones have been about 10 seconds in duration and have been much easier to shake off.
Then there's the awesome meat-space community (so to speak)!
We've got such a wonderful network through our church. The mom with whom we used to daycare-swap has coordinated for us a full roster of volunteers to accompany Joy one-on-one at Sunday School and nursery, plus give me a few minutes before and after worship for conversation. There are enough volunteers that nobody needs to step in more than once a month, and Joy is accepting enough of a wide range of helpers that this rotating whirl doesn't seem to faze her.
There's also a strong neighborhood network. On Friday I needed to go to Rose's end-of-summer-camp party, which conflicted with one of Joy's home therapy sessions, and there needs to be a parent or other adult in the house for the therapy to take place. One phone call next door, and the neighbor on the other side of the fence (who brought the potato salad to the fence party) was all lined up to come on over.
I was able this week to line up two other neighborhood moms with Rose-aged kids to take on the regular task of getting Rose home from school on Tuesdays and Thursdays, because that too conflicts with Joy's therapy hours.
On top of that, I've got a list of eight families (spanning neighborhood and church) willing to be called on short notice if we are in need of a bit of respite Joy-care, plus three other families who didn't think Joy-care was up their alley but would help by bringing a meal if need be.
And then there's the dear friend who brought her daughter over for a spur-of-the-moment playdate Friday night after the end-of-summer-camp party, and brought wine as well so she & I could each have a glass as the summer sun went down...
I could list more, but that gives you a flavor for it! Community makes Joy's world go 'round. We are so very blessed.
Thursday, August 28, 2008
Joy had such a nice string going. The last knock-down seizure we'd seen was on July 31. That meant that we were closing in on 4 weeks, almost a month. When we hit a month, we were going to celebrate.
And then this morning, we had (in the words of Mama Mara) a "big blue-lipper." Fortunately Joy was in a stroller, so she didn't fall. But she did go stiff. And quiver. And stop breathing. And change color. And drool. And then felt simply wretched for the next hour or so.
Dagnabbit. There goes our party.
Well, still trying to count blessings here... last time we had an almost-month-long streak without any knock-down seizures, she then had SEVEN big blue-lippers on the day that the streak broke. Here's hoping that today's count remains at ONE.
Wednesday, August 27, 2008
I work a part-time schedule. For the first two years of Joy's life, we had a daycare-swap arrangement with another family from church, who had a little guy only two days older than Joy. But after two years of swapping, the other family was looking to reproduce again and found another arrangement that would better suit an expanding family, so we needed to find something else. By that point, we were well aware that Joy was "behind" developmentally, and she'd been getting Birth-to-Three services for several months. We knew that we'd need something special, and we found it from a personal referral from a Birth-to-Three therapist, who had heard about what Lynda had put together in her home.
Lynda mixes things up with her daycare kids in two ways. She deliberately assembles a mixed-age group of children, regularly taking in new babies who then grow into years-long clients! And she deliberately puts together a mix of special-needs and neurotypical kids. Right now the mix is about half and half.
This daycare is a model of inclusion on a day-to-day basis, and she makes it look so easy. It really hit me the other summer one time when I dropped Joy off late and everyone was already out in the front yard, playing in a little wading pool. Lynda had the one girl with the most intense challenges (non-verbal, not very mobile, among other things) sitting on the bench of a little picnic table pulled up to the edge of the pool, with her feet in the water. Lynda was playfully pouring water over this girl's legs and feet, to a response of big smiles, while simultaneously tracking and interacting in turn with the other kids around the pool and in and out of the water, and managed to seamlessly welcome me and Joy as we arrived.
Lynda's place is therapy-central some days, with itinerant therapists from Birth-to-Three and the school district in and out to work with their various kiddie-clients. Joy's summer speech therapist was only there once this summer, working mostly out of our home, but her response to just one session at Lynda's was "This place is therapy heaven!" Lynda is eager to learn from the therapists and also make suggestions -- she's not a therapist by background, but has practically made herself into one by observation and continuing education.
Oh, and did I mention the reports? Every day during nap-time, Lynda writes up three or four paragraphs on each kid, with detailed specifics on their activities. Most days those messages are e-mailed to a private online group we have set up for Joy-reports, so JoyDad and I get to see them at work (only on the busiest days do they get handwritten). We've got the school-district therapists turning in their reports that way too, and Lynda's are easily the equal of theirs.
To top it all off, this week Lynda let me trade Joy-days because of vacation and holiday. I ended up having a day at home all to myself, though I did share it with JoyDad, swooped down on his workplace and whisked him off to a restaurant lunch.
Yes, she does read this blog -- thanks so VERY much, Lynda / Wonder Woman!
Monday, August 25, 2008
But wait, there's more. This year, Christmas in August also means that I washed my last load of cloth diapers this weekend. After six years of stinky launderings, I am SO done. Wahoo! Joy hasn't been the slightest bit interested in potty training. [Clarification edit: and she still isn't. No, we are not done with diapers per se. We are not even started being done with diapers.] However, the Medical Assistance under which she receives her intensive autism therapy will also pay for diapers, once a suitably-disabled child turns four. We've gotten through the prior authorization paperwork hoops now, and the first shipment of diapers arrived this week, directly to our door. Talk about your early Christmas presents! I am done saving the environment via cloth diapers, virtuous as it was. It feels great to be saving mama a little bit now.
Last but not least, I also started playing Christmas music this week. I ring handbells with a semi-professional community group, and Saturday was our kickoff rehearsal for this year's Christmas concerts. It's a little incongruous to have Christmas bells ringing in my head already before school starts, but I do love to have that outside interest and sneak away to ring bells with my colleagues! Here's an MP3 clip of "Sleigh Ride" to give you a sense of how we make holiday celebration with handbells. Merry, merry!
Saturday, August 23, 2008
Joy's had a very "stimmy" week, on the whole, and yesterday was no exception. Our cranio-sacral practitioner, H., was running a little bit late when we arrived, but showed us into the therapy room so Joy could play. Joy quickly pulled out a whole bunch of stimmy toys (kooshes, bristle blocks) and distributed them around the room, bouncing from one toy to the other like a ping-pong ball and squishing them between her hands and chewing on them. She's got a very intense interaction with her stim-items, in which she tenses up her shoulders and face and jaw and vocalizes through her teeth: "eeee" or "gooo". We've been concerned about it and hoping that cranio-sacral can provide some assistance.
When H. came into the room, Joy greeted her with a big smile but continued to go at it with the toys. H. began to follow her around and try to take hold of her, and Joy played it almost like a chase game. She didn't mind when H. "got" her but she did try to struggle away between the giggles. She never did really accept the holds this time, though perhaps was somewhat more relaxed toward the end.
First H. worked on Joy's belly, saying that her diaphragm was tight and it could be making it hard to catch a good deep breath. She again did the trick of counting as she pressed her fingers up toward Joy's diaphragm, so that Joy would have the sense that an endpoint would be coming. Joy thought they were playing another game, and every time H. got to "1, 2, 3" Joy would chime in with a big "Go!"
Next was the head. H. said that Joy's head was very tight and she was holding a lot of heat in her cranium. Joy has been running pretty hot on and off for the last few weeks, and the tension thing makes at least some sense because of what Joy does during the stimming (though is it cause, or effect?) H. spoke of two potential reasons behind the stimming. One would be a response to the tightness, as when you have a headache and you put her hands to your head as if pushing on the outside will help the internal pressure. Second would be a sensory-need attempt to get a biochemical burst akin to a runner's high -- which could be more efficiently provided by heavy-work such as jumping, crawling, crashing, pulling.
Anyway, H. spent the rest of the session working on Joy's head and upper chest, occasionally checking the "rhythms" by holding her legs. She said she did manage to release a lot of heat and tension in the head, that she'd gotten the rhythms stronger and more even, and that Joy's neck (where she'd worked last time) was still in good shape. I asked what to look for in the coming days, and she said to look for a reduction in the duration and intensity of the stimminess.
Joy remained intense with her stims through the whole session, through the day and the evening as well.
H. did give two particularly helpful pieces of advice. One was the advice to try and guide the stimming behavior into something more heavy-work related, games of jumping or running or trying to pull away. The other was that she identified that Joy was dehydrated, which impressed me because in fact we've had some trouble getting enough liquids into her lately. H. tied the dehydration into the heat-in-the-cranium thing. Whatever one thinks of that particular link, we do need to get Joy to drink more. So both of those were things that it was helpful to hear.
I'll be taking Joy back at least one more time, in another two weeks. Unfortunately I can't send JoyDad, because there weren't any Saturday appointments! Oh well.
Meanwhile, speaking of JoyDad, one of his colleagues forwarded him an interesting e-mail announcement: a CST training session for laypersons.
This is a hands-on session which will teach techniques to relieve pain and promote relaxation by using basic CranioSacral Therapy techniques:So for slightly more than the cost of a single session with H. we could learn to do it ourselves, in three short hours! Or not. We're busy that evening anyway.
- Discover how to recognize the rhythm of the craniosacral system.
- Learn a basic CranioSacral Therapy techniques that you can perform yourself.
- Experience a sense of control over your innate ability to provide healing energy to others and yourself.
- Gain a greater understanding of your role in your own health and well being.
Sigh. I'm not feeling nearly as hopeful about this craniosacral thing as I was.
Friday, August 22, 2008
Last night at swimming class, we picked up the above report card, and discovered to our delight that Joy had been unconditionally promoted to Level 2, after the standard single session in Level 1. As the Level 1 brochure says, "A child usually only stays in Level 1 class for one session." We're so not used to operating on a neurotypical timetable...
Here's the note from the teacher:
You have been doing an amazing job this session! Your jump-ins are looking great! Keep up the hard work!
A close-up of the Level 1 skills report:
- Submersions with Instructor - Mastered!
- Jump-ins with Assistance - Mastered! (really it's nearly without assistance)
- Backfloats with Assistance - Mastered!
- Comfortable on Platform - Mastered!
- No Tears - Mastered! (she nailed this one on the first day)
By the way, Rose -- in her 4th summer of lessons -- has now not only learned to swim the length of a single breath, but this week started to attempt to come back up for a breath and keep going.
Joy gets another session starting in September, Rose will continue piano lessons instead.
Onward to autumn!
Thursday, August 21, 2008
Home, home on the range
Where the deer and the antelope play
Where seldom is heard a discouraging word
And the skies are not cloudy all day!
A cowboy's earthly paradise! It'd be enough to make ya want to move back, if it weren't for the fact that really Kansas has about as many discouraging words as anywhere else. And, alas, the movie Tropic Thunder is playing in Kansas as well.
There's been a lot of editorial page ink and blogospheric bytes spilled over the protests from the special-needs community about the movie's use of the "R-word": retard. As I understand it, the context is an actor (played by Ben Stiller) playing a character with cognitive disabilities, and overplaying the "simple" factor of his "Simple Jack" for Oscar-pursuit purposes. The word "retard" is bandied about indiscriminately, leading to real-world concerns -- shared by me -- that one of the movie's ugly taglines may be heard on a lot of playgrounds this fall. I won't repeat it, but you can read about it if you care to.
I won't be seeing this movie, and wouldn't anyway because a) I see something like one theatre-movie per year if I'm lucky, and b) I don't "do" trash-mouth movies that pull their big laugh-lines out of the gutter, and I'm not just talking about the "R"-word anymore.
Instead, over the past several months I've been reading my way through a clever and highly entertaining science fiction series by Lois McMaster Bujold, featuring lead character Miles Vorkosigan. Miles is a nobleman on his home planet, in the line of succession to the emperorship. He is blindingly intelligent, a man of conscience, full of manic energy, apparently arrogant but battling inner bogeymen. He commands a fleet of space mercenaries, and has adventures, romantic and otherwise, all around the galaxy.
He's also just over four feet tall, with startlingly brittle bones and other physical frailties, the in-utero victim of a chemical attack on his mother before he was born. His home planet has a low tolerance for physical difference, to put it mildly. The "R-word" that gets used against Miles is "mutie," short for mutant.
Joy and I have not yet heard our own planet's discouraging epithets used against her. With any luck, we'll avoid it for some years longer. I'm not so naive, though, as to think that it isn't going to happen at some point.
Meanwhile, I shield myself against the day, rejoicing in Joy's accomplishments and entertaining myself with the successes of Miles Vorkosigan. Who needs the movies, anyway?
Wednesday, August 20, 2008
Sunday, August 17, 2008
First up for consideration is our big homemade crash pillow. This is an unqualified hit. I first saw one of these at Joy's intensive therapy service provider's offices.
It's nothing more than a huge homemade pillow, full of chunks of soft stuff. The one at the office was filled with foam remnants from a mattress factory. In fact, a mattress factory in our area had been making such pillows free of charge for community members with autism, but they had a closed waiting list by the time I contacted them. Then I'll make one myself, said the little red hen! And she did.
The case is a king-size flat sheet -- you can pick one up at a thrift store for couple of bucks. I just folded it in half, nice-side in, and ran a 1/2-inch seam most of the way around with my trusty 1970s-vintage sewing machine, leaving an opening for filling. Then I turned it right-side out and stuffed it with finds from around the house: the contents of ratty old pillows, a chopped-up "egg-carton" foam pad we had lying around. Get the kids to help with the stuffing! Then stitch up the opening by hand and you're good to go.
The pillow is pictured above folded up against the wall, in case Joy and Rose want to take a running start for a good big crash, as below.
The pillow is big enough for Joy and me to crash together, or Joy and Rose, yet flexible enough that you can fold it over a kid for good big full-body squishes. Rose has even napped on it a time or two.
Next up is the infamous Bucket-o-Beans. This one went over the line from huge hit into too big a hit, and must currently be classified as a miss. Maybe it can come back later.
The Bucket-o-Beans is simply an 18-gallon plastic tote, with 20 pounds of dried pinto beans poured in. A sensory-seeker's paradise, originally recommended to us by Joy's first occupational therapist.
Joy loves to sit in the beans, and have them rubbed on her body, and stim in them with her hands. For a while it was a nice sensory-input option, and a fun way both to contain her and interact with her -- she'd pull my hands down into the beans, for instance, to request that I rub them on her.
Alas, the Bucket-o-Beans descended into addiction, to the point that the ONLY reason Joy ever wanted to go downstairs to the basement was to get into the beans. Then she'd throw a tantrum when it was time to get out. First we had to hide the Bucket-o-Beans away. Then we had to hide a similar unrelated tote that held food for our pet rabbits, because Joy was convinced it held the B-E-A-N-S. Yes, we have to spell it out now, or risk bringing on the urge and the ensuing fuss if we slip and say the word.
Other things to be aware of with the B-E-A-N-S:
- They can be swallowed whole, and exit whole as well, swollen to about 3 times their original size. (Did I really need to tell you that?)
- They can be scattered all over the place, especially when a kid gets out, and even more so if the tote tips over.
- Use under supervision, and be aware of the lid if your little one likes to create cozy enclosed spaces. Most such totes come with suffocation warnings.
All that being said, it's a way-cool and inexpensive option for kids who relish and need such input. I'm hoping that some months down the road, it might be useful for Joy again.
Friday, August 15, 2008
Her daycare lady, I'll call her Lynda (after Lynda Carter of Wonder Woman fame, because she must have super powers to do what she does!), sent a wonderful note today.
"Are you familiar with the Maurice Sendak book Alligators All Around? It goes through the alphabet with a couple words on each page. A Alligators all around, B bursting balloons, C catching colds, D doing dishes, etc.
Whenever we get to `G getting giggles,' Adam [a favorite daycare friend] always says, 'Like Joy!'"
It's good to have friends. And it's good to get giggles!
Thursday, August 14, 2008
To answer that question, let me tell you a story. It will seem unrelated at first, but stick with me.
From 1956 to 1983, pregnant women in the U.S. suffering from “morning sickness” had access to an effective medication called Bendectin. Unfortunately during part of that time another medication, thalidomide, was also on the market in a number of countries, as a sedative that also had some nice anti-morning-sickness effects (it was never approved in the U.S., but was distributed to some extent here on an experimental basis). The manufacturers claimed thalidomide was safe for use in pregnancy, though testing had been minimal or non-existent. After the 1957 introduction of the thalidomide, unusual birth defects began to appear in striking numbers. Thalidomide was removed from the market in 1962 and its manufacturers expended great effort in claiming innocence and trying not to be held liable for its awful effects, effects which turned out to be easy to replicate and impossible to deny.
Meanwhile, Bendectin continued to rise in popularity, eventually being used by as many as 1 in 10 pregnant women in the U.S. In the wake of the thalidomide disaster, Bendectin came under serious scientific scrutiny – so much so that perhaps no other medication has ever been so thoroughly studied for use in pregnancy. The results held firm in study after study: no adverse associations with Bendectin were ever established.
However, as one might expect in that large a population, a certain number of women taking Bendectin also gave birth to children with birth defects. After what happened with thalidomide, blaming Bendectin – despite all the studies to the contrary – was not that big a mental leap. Soon the lawsuits started to pile up. Eventually the manufacturer Merrell Dow pulled the drug off the market due to the financial pressure, but continued to mount an exceptionally successful defense to the various suits that came to trial, among them a class action suit brought by over 800 plaintiffs and an individual case that went all the way up to the Supreme Court and had an impact on evidentiary standards in the process.
No plaintiff ever received damages after a Bendectin-related trial. (Current Controversies in the Biological Sciences, p. 170)
So, there's been no Bendectin on the market for suffering pregnant women in the U.S. for the past 26 years, with no discernable decline in birth defects. Hospitalizations due to hyperemesis (extreme vomiting) of pregnancy, though, increased considerably. Click here & scroll down to see a chart of the trends. Fortunately for our neighbors to the north, a generic version of Bendectin called Diclectin has been available in Canada all along. And, as my OB advised me during my pregnancies, you can buy Bendectin’s ingredients separately, doxylamine succinate as Unisom and pyridoxine as Vitamin B6, and take ‘em yourself -- only on the advice of your own physician, please!
Now, back to the vaccines.
Vaccines do occasionally have adverse effects, sometimes dire ones. To take that fact into account, the U.S. government has set up the National Vaccine Injury Compensation Program (VICP), an alternative to the court system that provides for vaccine-injury compensation in cases where a credible scientific rationale can be advanced, without laying all the lawsuits on the backs of the vaccine manufacturers.
Thank God for the vaccine court. Because if there were no such process in place, autism-related lawsuits might well drive the vaccines right off the market in the U.S., just like Bendectin, despite all the science that finds no evident connection between vaccines & autism. And there’s no do-it-yourself over-the-counter alternative for protection against pertussis, diphtheria, measles, polio... all those diseases that used to kill and maim so many people before vaccines came on the scene.
People get into big online slugfests about vaccines and autism all the time. I'm not really spoilin' for a fight myself, because nobody wins those things. I could wish that coming out online in support of mainstream science and the American Academy of Pediatrics weren't potentially a lightning-rod kind of thing to do! What a world, what a world.
Anyway. That's where I'm coming from on the "vaccine thing." Just in case my readers would like to know.
Tuesday, August 12, 2008
when brothers live together in harmony!
(Yes, and sisters too!)
Note for relatives, etc. who haven't encountered Wordless Wednesdays before: the theme of posting photos on Wednesday is a tradition that quite a few bloggers are using to give some structure to their week. Wordless Wednesdays run the gamut from captioned in the header, like this one from Opposite Kids, to extensively captioned, like this one from Therextras.
In their identically-patterned suits and their matching blonde bobs, they look like quite the matched pair, but their reaction to water is quite different.
Rose enjoys getting wet and likes the idea of swimming, but she's been distressingly timid about the actual learning. She has such a vivid imagination about the terrors that await if she actually picks her feet up from the bottom of the pool! Her lessons for the first two summers were once weekly through her daycare program, and this year she gets twice a week via summer daycamp. I think it took her till midway into the second summer before she was willing to attempt "jump-ins". For some reason (maybe she talked a good "sure I can swim" show at the beginning of summer?) she got started in a group that was too advanced this summer, and ended up getting demoted two levels, down to the beginner-est level among her peers. Demoralizing, because she knew exactly what was happening.
Joy, on the other hand, has loved the water from the start. She's never complained about hair-washing in the bath, and loves feeling the water all around her. We were so happy this summer to find a swim-center that does one-on-one lessons for special-needs kiddos, for the same price as their small-group sessions. The goals of the first level of class at this center are modest: first, to get your child so he or she doesn't cry the whole session! We conquered that on the very first lesson -- the only time Joy cried was when it was time to get out. She has since submitted gamely to getting her face into the water regularly, and has begun to attempt to kick her legs.
Both girls had a stellar week last week (I swim with Rose down at the far end of the pool while Joy and the other classes are having their lessons in the other half of the pool). Joy has discovered jump-ins, and willingly splashes forward down into the arms of her teacher -- they put another staffer behind her at poolside to keep her from running away when she's on the edge preparing to jump, having learned their lesson last month.
At the same time, Rose has finally discovered that she can swim a forward crawl ("ice-cream-scoops") or breast-stroke ("pizza arms") for the length of an entire breath.
So there I was last week at one end of the pool, watching my younger daughter leap in with a lovely splash at the other end of the pool, with my older daughter repeatedly swimming out to me from the edge.
I'm so proud of both my little swimmers!
Saturday, August 9, 2008
I don't think I'm going out on a limb when I say that of the two of us, I was the more skeptical of the woo that is CS therapy. I'm an economist, so I tend to approach interventions with/for Joy (and other decisions in life) from that perspective. I want to provide all of the help to Joy that we can, but our resources (time and money) are finite. I try to weigh things like costs and benefits/expected outcomes, risk and reward, and opportunity costs (what else could we do with that time and/or money) in order to try to determine what the best mix of therapies is. Don't get me wrong, I do also have a heart that enters into the process, but I need data to make a decision.
The big piece of data that was (and in fact remains) missing for me as we were trying to decide whether to go ahead with the CS therapy was how it is supposed to work. I'm sorry, but I just can't buy the whole "Breath of Life" business. I just can't. It is not logical, and appears to be based on concepts of physiology that are contrary to what medical science has been operated under for the last 100 years or so.
The risks of CS appeared to be low (as opposed to something like chelation), and the rewards if it worked seemed to be something Joy could benefit from. The cost is not outrageous, and we could afford a few sessions without depriving ourselves of anything else of consequence. But the biggest stumbling block for me was the woo factor. I just could not get past that. It didn't help that Orac's blog post (the one JoyMama linked to in her post) appeared right in the middle of our decision-making.
What finally tipped the scale for me was that we had heard from a number of people that it had helped them. Of course, it helped them with issues other than what Joy is struggling with (a classic sign of woo-based medicine is that the treatment is touted for an incredible range of ills), but I digress... Given the low risks and costs, I finally agreed to go for it.
And I have to say that while there did seem to be a short-term change in Joy's behavior, I remain skeptical. Other than the couple of hours following the treatment, Joy's behavior is not any better. She has thrown a couple of tantrums during the time I've been typing this post.
Yesterday's session provides only one data point, and what we're looking for is a trend. I've agreed to a series of treatments, and I will suspend judgment until they have run the course. So stay tuned...
Friday, August 8, 2008
Joy was bouncy early Friday morning but definitely had a short fuse. On the way to drop Rose off at summercare, she fussed at the stoplights and bit her shoe and gagged herself with her hand. I could get some smiles out of her if I engaged her energetically (i.e. not while I was driving) but she was cranky if I took my attention elsewhere.
The practitioner, we'll call her H., had some toys that were attractive to Joy (note to self: get several of those Koosh-like pufferballs) and Joy played while I got a demo of the approach on me. H. put her hands first on my upper chest and back, then on my head, commented that I had a lot of heat in my cranium, wondered if I'd been having headaches or trouble with temperature regulation. Umm, no, not really. Then she focused a while, made a soft movement, and said, "There! Did you feel the release?" Umm... maybe I felt a little bit of a something... I'm pretty suggestible that way though.
So then it was on to Joy. She rather followed Joy gently around the room, tried to engage her, then started holding on to her in the belly area. Joy let her hold on for a few secs, then squirmed away but didn't go running. Then she did several holds in the area of Joy's head and neck, keeping her in the interaction for a count of 10 each time, in whatever position Joy wanted to be -- sitting, lying down. She said that Joy's hyoid bone, an odd U-shaped bone in the neck that supports the base of the tongue, was up too high, and that the resultant choking feeling could well be responsible for some of the crankiness and biting/gagging and sleep difficulties we'd been having. She put her hands on Joy there, and after a slight struggle, Joy suddenly swallowed and sighed deeply. Several more interactions in the same vein, and our time was drawing to a close. H. placed small squares of kinesiology tape near Joy's ears where the jaw connects, saying that this would inhibit some of the twisting tension she's felt there. I was surprised that Joy let her do it and let the tape stay without clawing at it. We're to put tape on at least for overnights, but it can stay on as long as Joy's willing to let it be there.
Joy was considerably more relaxed than at the start of the appointment, and then had a different species of release, by way of a full diaper. After I finished washing up from that, Joy and H. were hanging out in the waiting room. Joy was just sitting happily on the sofa, making eye contact and smiling at H. Given the opportunity, H. put her hands on Joy's legs, said she could feel the rhythms there too, and she sort of focused in, not even counting out loud this time. Joy just relaxed right into it.
The daycare report later in the day was startling. All the way up till nap, Joy was chipper and giggly. She didn't race around teetering and tripping on thing the way she had Wednesday. She stayed with the other kids and made lots of eye contact and laughed and laughed. Best daycare-day she's had in a long, long time.
But later in the day some of the issues were evident again. She tried to bite JoyDad a couple of times, gagged herself with her hand, went back to biting her shoe. She may have still been in a better mood, but it wasn't particularly obvious. She also still had trouble getting to sleep.
I did like H. and the way she interacted with Joy, and Joy's immediate reactions were utterly fascinating. We've got another appointment in two weeks, so we'll see.
Thursday, August 7, 2008
For the most part, I'm an evidence-based medicine kind of gal.
But I'm also open to the concept that Western medicine doesn't have all the answers.
I think of my mother, whose journey with kidney cancer lasted an incredible 20+ years. A professor of literature, she was no friend to muddled thinking (to which her composition students could attest!) She pursued her cancer treatments thoughtfully and persistently, and made use of my skills as a librarian to ferret out the latest medical literature. Surgeries comprised most of her treatments. But she also embarked on a trial of high-dose intravenous Vitamin C, a treatment with some serious woo overtones, and credited it with slowing the cancer's growth. She took a carefully-compiled cocktail of nutritional supplements, including pycnogenol and aloe, to the improvement of her fatigue symptoms. And she relied heavily on the prayers of her community.
The treatments we have pursued for Joy's epilepsy have been Western all the way. The intensive relationship-based therapy we have chosen for her primary autism treatment does not have as extensive a publication history as Applied Behavioral Analysis, but the literature is growing and we feel confident that it is a good match for Joy's strengths.
When it comes to Joy's sensory issues, we're on somewhat more controversial ground, though it's a well-accepted concept among occupational therapists. Her constant, sometimes frantic, search for sensory input is highly apparent to us.
But now we're about to go further out on the limb of woo than ever we have gone before. Tomorrow morning Joy has an appointment for craniosacral therapy, occasioned by issues of biting (self and others), teeth-grinding, her intense need to chew, and the intensity with which she tenses up her head and body when she "stims" on pine needles or grass or gravel.
There's a craniosacral therapy practitioner in town whose name has come up again and again. From Joy's pediatrician. From a high-up source in the agency providing the intensive therapy. Once I started mentioning her name to others, I heard nothing but praise and respect. The therapy itself, however, is often branded as woo (Orac took it on this past June). It sure has plenty of the hallmarks of woo. There are extravagant claims for what kinds of disharmonies it can bring back into balance, and the underlying theory does not inspire confidence: certain rhythms in the body, not acknowledged by Western medicine, can be manipulated by gentle hands-on touch and brought back into balance. From the Biodynamic Craniosacral Therapy Association of North America Frequently Asked Questions:
The practitioner listens deeply to the fluctuations of the cerebrospinal fluid within the craniosacral system. The fluctuation of the cerebrospinal fluid creates a variety of tides within the system. As the practitioner — from a place of stillness — listens to these internal tides, the client's system begins to access its own inner resources … perhaps a little like finding keys to previously locked doors.
Oh my. And yet... Joy's pediatrician finds the practitioner we'll be seeing to be a valued diagnostic partner. And we've heard quite a few personal testimonials by now.
By coincidence, or maybe something more than coincidence, I happened upon a fascinating recent post on craniosacral therapy from Barbara, a PhD child-development specialist (& PT & OT) who has experienced the therapy herself. Her post hits very neatly the tone of what I'm feeling going into tomorrow's appointment.
Besides, it's not ridiculously expensive, the touch is gentle and... who knows? It might just help.
Stay tuned. And prayers are welcome too.
Tuesday, August 5, 2008
We're on an upswing right now, it seems. In fact, two words re-emerged this weekend (whether or not it's an Elvis-sighting kind of thing remains to be seen). You can deduce quite a bit about our weekend from which words they were: Uh-oh, and no-no-no!
There's one very useful word, though, that Joy has retained pretty consistently. In fact, it seems a shame to count it as just ONE word, because it has so many shades.
The word is "bye-bye".
Here's what it means:
- "I can see that you're going now. Farewell!"
- "I can tell that I'm going now. Farewell!"
- "You. Go away. Now."
- "I want to go away!"
- "Goodnight / nigh-nigh / I'm ready to go to bed now."
That last "nigh-nigh" item used to be its own word with an "n", but it morphed (as many of Joy's words do.) Maybe now that "no-no-no" is back, we'll get the "n" on "nigh-nigh" again?
Usually it's not too hard to deduce which one Joy means -- for example, if we're rocking her to sleep. Sometimes it's not quite as clear -- for example, one of the few times she was laid-back enough to hang with me during a worship service, and the fellow who brought the message had finished his sermon, and she busted out with a big loud "bye-bye!" as he was stepping down from the microphone. Was she acknowledging his departure, or was she telling him good-riddance, or both??
Well, that's about it from me this morning. I'm going now. Bye-bye!
Saturday, August 2, 2008
The first thing to know is that "seizures" and "epilepsy" are pretty well interchangeable terms. If you have more than one seizure, you're considered to have epilepsy.
What is a seizure? According to the Epilepsy Foundation,
A seizure happens when a brief, strong surge of electrical activity affects part or all of the brain.
How many people have it?
By 75 years of age, three percent of the population can be expected to have been diagnosed with epilepsy, and ten percent will have experienced some type of seizure.
Up to 70% of epilepsy is "idiopathic," having no diagnosed cause; up to 40% of people with autism also have epilepsy.
The first seizure that we noticed happened at a family gathering in July 2005, when Joy was 14 months old. In her grandparents' living room, sitting on the floor in the middle of a roomful of conversation, she suddenly "zoned out" and sat there quivering for what must have been over half a minute. Then she "came back" and everything was fine. We shook our heads, commented on how weird it was, and that was all. The second one was like unto the first, several weeks later at a noisy restaurant dinner -- zoned out in her high-chair, with a slight tremble. If I'm remembering right, she got pretty snoozy afterwards too.
Those episodes were enough that I mentioned them at her 15-month pediatric appointment. The pediatrician was sufficiently on the ball to get us scheduled for an EEG with a couple of weeks, which was very helpful because during those two weeks, we started having daily episodes. The daily episodes were a little different. Joy's arms would jerk out to her sides, and she'd get a startled look and whimper a bit. Then a few seconds later, another jerk. These sequences lasted up to a minute at a time and were mighty disconcerting to all of us!
We were pleased to discover that the pediatric neurologist on duty during the EEG was someone we already knew. He made a special point of coming in during the actual EEG (rather than just reading it later), and though Joy had no visible seizures during the EEG, the pattern was such that he could tell right away that there was abnormal electrical activity going on in there.
The very first medication at the very first dose was a big initial winner. The visible seizures disappeared, so thoroughly that the neurologist had us come in for another EEG four months later to see if the underlying pattern was gone too! (It wasn't.) So the medication stayed, and the only side effect we identified was that we're pretty sure it made Joy more hyper than she'd otherwise have been.
Unfortunately, the seizures started to re-emerge about a year later, early fall 2006. At first we weren't even sure we were seeing them, just a little seizure-y flicker out of the corner of our eye, and a passing thought, "Hm, I wonder if she's about to have another seizure." Her neurologist confirmed that we probably weren't imagining things, and before too long we were back in the world of stronger, longer seizures. As they got stronger and longer, they looked like this: Joy's arms would fly out to her sides, and her face and body would get stiff. If she was standing, she'd topple over. She'd stop breathing for a few seconds, enough to make her face turn red. (Later, it sometimes got long enough to make her face look blue-ish, and she'd drool and convulse a bit too; right now, we're pretty much back in red-faced territory.) After she comes out of the seizure, if it's a short one (10 seconds or so), she may pop right up and go about her business. If it's longer, she may be cranky for half an hour. If it's a blue-face one, she may be exhausted and limp for half an hour, then inconsolable for the hour after that.
So our little neurologist-plus-family team started juggling meds -- first increasing the original one, then adding another, then removing the original and adding a third, then tried to remove the second (NOT good), then re-upped the second and removed the third, then added a fourth. We also tried a low-glycemic-index diet along the way, sort of an Atkins-diet treatment that was supposed to stay just shy of ketosis, which we followed very faithfully but without any decline in seizures.
We're still on the "second and fourth" combo, which puts us into manageable territory, with no side effects that we're aware of (an immense blessing). We've had some very fine stretches, including something close to a month in April when we had no visible seizures at all. The day the seizures came back, though, we had SEVEN of them. More often, the daily record on our calendar looks like this: 0, 0, 1, 2, 1, 0, 0, 1, 0... This summer we've noticed a tendency to have more seizures during travel. The lake-vacation calendar went: 3, 2, 2, 4.
We never know when a seizure is coming on, so climbing-play (which Joy loves) and park playground equipment and swimming lessons are all somewhat scary things. Fortunately, however (touch wood, quick prayer, avert! avert!), we've never needed an emergency room trip, either for the seizures or a resulting fall.
Right now, it's just part of our daily adventure with Joy and all of who she is.