Day 2

It's been a long time since I blogged about seizures.  Joy was still having seizures when I started Elvis Sightings in mid-2008, but we were well on our way to getting the just-right meds combo at that point. The last seizure we saw was on September 11, 2008.

As of this Thursday morning, it had been 1554 days.

But no longer.  On Thursday morning Joy had a seizure that was powerful enough to knock her down.  I'm pretty sure I missed the actual seizure itself, which must have happened while she was on the couch with her iPad while I was whirling around packing bags and wraps for school.  But when I got her up to put on her coat and go to school, she tripped over her boots and fell to the floor.  She fell again in the driveway a minute later, and then she was very sleepy and out-of-things for about an hour.  Clearly a seizure event with the sort of post-seizure sequence that we used to see all the time.

We've consulted with her neurologist, survived a blood draw, bumped up one of her med doses (which hadn't been changed since the seizures went away).  

So the count has started over again.  Now we're on Day 2 since the last seizure.

It would sure be nicer to have it be Day 1556.

Was It, Or Wasn't It?

Saturday night I sat with Joy on the couch, helping her brush her teeth as per our bedtime routine. Joy was very tired, drifting toward sleep. Then all of a sudden, her legs made a swift jerking motion.

Any other kid, and my first thought would be that it was the kind of jerk-awake thing that happens as sleep threatens to overtake you. But since it's Joy -- first thought was: seizure?!?

I asked JoyDad if he'd seen that jerky motion, and what it looked like to him. No, he'd been looking the other way... but that reminded him, at snacktime earlier in the day, Joy had zoned out for a few seconds. It felt somehow beyond just lost-in-thought, really seemed "not there." And he'd briefly thought: seizure?!? but then she was back and it slipped his mind until my question.

So, was it or wasn't it?

And, if it was, what was it about?

If it was, we've got several potential culprits to consider.

One thought is that she's been growing like a weed, and it's been a long time since we upped her seizure meds (no change in dose since the seizures stopped over two years ago.)

Another thought is the whole thing about the ramifications of switching between manufacturers in the use of generic epilepsy drugs. Since I wrote about the issue in July, our drugstore has switched manufacturers on that particular medication every time we have renewed that prescription. Every single $*#&% time! And we cracked open the newest bottle from the latest manufacturer just a few days ago.

Yet a third thought is the Abilify. Yes, even though I said I wasn't going to tell you, I'm telling you now. We started a couple of weeks ago and it has not gone as we hoped, which is an whole 'nother post in and of itself. But she's still on it as of this writing. More important to today's reflections is that Abilify does have a seizure-caution in the package-insert, because one person did start having seizures during the clinical trial, which could easily have been pure chance due to the population -- or not. We did get the OK to start Abilify from Joy's pediatric neurologist, who didn't think it was likely to change her seizure threshold. But Joy has proven to be unusually sensitive to Abilify in a number of ways, even at half the dose of the smallest pill.

So maybe it was. But maybe it wasn't. We didn't see anything at all seizure-ish on Sunday.

For now, we're watching and waiting. And hoping and praying.

We'd love it if you'd join us in the hope-and-pray part.

Musings on a Package Insert

How many of you, other than health care professionals, have actually read all the way through a package insert for a medication? If you are taking or administering any meds that come in their original packaging (as opposed to pills that the pharmacy counts into their own bottle), you've probably at least seen them -- a large thin sheet of paper, covered with miniscule type, folded into a small square. I have to confess, I usually don't go into such depth, preferring to seek summary information online if I need more than what the doctor tells me verbally.


But package inserts are available online too, and I've been poring over a particular one: Abilify (aripiprazole), one of two FDA-approved meds for "treatment of irritability associated with autistic disorder (including symptoms of aggression towards others, deliberate self-injuriousness, temper tantrums, and quickly changing moods)" in children ages 6 to 17 years. The Abilify insert prints out to eighteern 8.5x11 pages in two columns of something like 8-point type. It's so long because Abilify is approved for use in 6 other ways other than pediatric autistic irritability, including particular situations around depression, schizophrenia, and bipolar I disorder. For all seven indications, the insert has to recount studies, warnings, side effects, dosing, etc.

Here are some of the things I learned about Abilify from the insert:

• "The mechanism of action of aripiprazole, as with other drugs having efficacy in schizophrenia, bipolar disorder... (etc.), is unknown." In other words, studies show that it works, but we don't quite know why. Yikes.
  
  
• These were placebo-controlled trials, so some study participants got the drug, while others got a sugar pills, and they didn't know which they were getting. 10% of participants who got Abilify dropped out of the trial due to side-effects. Meanwhile, 8% of participants who got the sugar-pill dropped out due to "side-effects"!! Oh, the things we see when we're expecting to see them...
  
  
• 21% of participants on the drug reported sedation; 17% reported fatigue. But at a lower dose (which can be effective), the reports of fatigue were only 3.8%. The insert didn't note any dose-differential on reporting sedation. One in five is pretty high. Something to think about for sure.
  
  
• There's a seizure-precaution in the "Warnings" section of the insert -- and of course Joy has epilepsy, though it's been well-controlled for over two years now. A small number of participants did have seizures during the trials. For the peds studies, that was 1 in 611, combining the autism studies with the bipolar & schizophrenia studies. This does not scare me so much as one might think; up to 40% of people with autism experience seizures, and one of the times those seizures tend to come on is adolescence -- as in, the age of quite a few of the study participants.
  
  
• One thing I didn't find on the insert was anything about differences between boys and girls. Which isn't surprising, since there are 4 boys with autism to every one girl, so the "not looking at the issue" shortcoming is shot through autism research in general. But still.

Perhaps you can guess why we're investigating this, given my earlier reports on Joy's difficult entry into kindergarten, and the injuries she's been causing to self and others since.

The vast majority (95%-ish?) of the "explosive acts," as we've been calling them, happen in 3 limit-setting situations:
-- Joy wants something she can't have
-- Joy has to do something she doesn't want to do
-- Joy has to stop something she's enjoying

Her response is explosive and swift, with no warning to allow intervention. Her Agency 2 staffers call it "zero-to-sixty." For a while, based on a school tally that started mid-September, up to half the "explosives" were directed outward, mostly at staff since that's who she's mostly with, but at other kids too when they're in range. Which means, of course, that it doesn't feel safe to have her around her classmates much.

I think she's bitten 4 (or 5?) staffers badly enough that they've had to seek medical attention.

Interestingly, things have gotten some better in recent weeks. We haven't really had a day described as bad/challenging by school staff since our trip up north. There are more stretches of contentment at school, leading to notes like "short but calm music class 10 min -- enjoyed keyboard play." It's felt better at home too. JoyDad and I feel less under assault, less on pins & needles. On the other hand, the total "explosive acts" tally at school is still in the range of 20 to 40 per day: biting, hitting, hairpulling, headbanging. It's just shifted to self-inflicted rather than outwardly-directed. There's been enough self-hairpulling that her hair is getting noticeably thinner again, though not (yet?) near the level it was last year when her hair became a stim toy and we had to cut it all off.

The psychiatrist we've consulted with Joy is ready to start her on Abilify right away if we want. We are still mulling. We may start this week, or wait a week ro two and see if things continue to improve such that the tally goes down. Either way, we are thinking not to tell Joy's school staff or Agency 2 therapists what we've decided (nor you, gentle readers, as the staff & therapists do check in with Elvis Sightings). We're hoping that their (blinded) observations might serve as a counterweight to ours, which will obviously be informed by a knowledge of whether we're giving Joy the drug or not.

One final note. Up until now I have not named any medications on this blog, other than one incident with JoyDad. That has always felt like a bridge too far in terms of privacy. However, in our information-search about Abilify (and Risperdal, the other of the two), one thing I did was do a Google Reader search on all the blogs I follow. I came across gems like this:

Overnight, it seemed last December, the amp was turned down on his rage. His ability could shine without the glare of interruption or explosion. Suddenly, there was a filter on his impulses and reactions. (But it only lasted 10 months, as the post went on to elaborate.)

Or this:

Enter Abilify. This tiny little pill instantly and quite dramatically reduced (X)'s aggressive impulses. I'll never forget when, just a few days after starting taking it, (X) gave me a big hug and excitedly reported: "Mom, I don't feel like hitting you anymore!" I still get chills thinking about that day. It was miraculous.

I know, these are anecdotes, not studies. But it sure helps put a face on some of what the studies have to report. And by naming drug-names in this case, I'll be putting Joy's experience into the hopper for future questioners who think to do a search in their blog reader (or just on Google in general).

Think good thoughts for us, whatever we decide to do these next few weeks.

9-11-2010

Part 1:

This is now the second time in this household that we have greeted September 11 with celebration.

Joy's last observed seizure occurred on September 11, 2008. Two years ago to this day. Hosanna in excelsis! (a cry of praise, and of ongoing need for God's blessing)

Part 2:

Two texts for your consideration, given the other anniversary-meaning of September 11.

From the New International Version of the Holy Bible,
Micah Chapter 6 Verse 8:

He has showed you, O man, what is good.
And what does the LORD require of you?
To act justly and to love mercy
and to walk humbly with your God.

From the Shakir translation of the Holy Qur'an,
Chapter 7 Verse 199:

Take to forgiveness and enjoin good and turn aside from the ignorant.

Peace.

A Generic Post

In principle, I'm all in favor of saving money with no-name brands.

We do a lot of that in the grocery store. Our cart fills up with a lot of store-brand or lesser-known brands, every bit as tasty and we don't have to pay for all the advertising overhead!

Then again, there are exceptions. I happily eat the off-brand Crisp Rice (instead of Rice Krispies), packaged in the big plastic bag; JoyDad eats Mom's Best raisin bran instead of Post or Kellogg's. But I do not like the taste of off-brand Cheerios and Kix. Those two are not every-bit-as-tasty in the off-brand, I can taste the difference, and I'd really rather not buy/eat the inferior stuff.

There are some similar -- and much higher stakes -- issues with generic drugs too. In general, I'm all in favor. Health care costs are way-too-high, and generics can do their bit to help bring costs down. JoyDad and I avail ourselves of generics both for prescriptions and for over-the-counter meds.

Unfortunately, epilepsy drugs are a example of when generics aren't necessarily ideal. The FDA rules for generic bioequivalence allow for a rather suprising amount of tolerance around how well a generic version needs to match the corresponding brand name -- to make the cut, a generic needs to be reliably "within 20% above or below the blood level generated by a corresponding brand drug." When it comes to anti-epileptics, where the therapeutic dosage can be in a narrow range, that degree of difference between brand-name and generic (and possibly even more so between two different generics) can apparently be enough to mess with seizure control, to potentially disastrous results.

A recent article at Epilepsy.com has a nice round-up of recent research conducted on generic substitution for anti-epilepsy drugs, with a number of studies pointing in the direction that the differences may indeed be problematic.

There are a couple of different approaches underway to remedy this. A citizen petition was presented to the US Food & Drug Administration (FDA) in 2006 requesting that the agency address the issue of brand-name/generic substitution for anti-seizure meds. However, it does not appear that the FDA has responded substantively. More recently, in the conference report that came out with the funding bill for the FDA for the coming year, Congress has upped the ante by including the following request:

The conferees request the FDA report on adverse events and seizures associated with brand and generic anti-epileptic drugs. Specifically, the agency should examine the pharmacokinetic profiles of “A” rated anti-epileptic drugs from different manufacturers of the same therapeutic agent. The Committee directs the FDA to submit a report not later than September 30, 2010, detailing whether the agency believes that any changes to the current bioequivalence testing should be recommended.

(from FDA Law Blog)

Although -- the FDA is already on record with the belief that no changes need be made, so I'm not sure how this would impel any belief-changing (why is this about "belief" anyway?) Maybe if either internal or external evidence piles high enough, they might change the tolerance guidelines for this particular group of meds. I wonder if that's been done before.

Here in Wisconsin, there was also a push for a legislative remedy this past session of the state legislature. The bill (2009 AB 506/SB 354) would have required consent from both the prescribing physician and the patient/parent/guardian before a pharmacist could substitute generic for brand-name anti-seizure drugs, or substitute one generic for another. Wisconsin law already prohibits such a switch if the original prescription specified "no substitutions" -- and the opponents of the measure were quick to point this out. A public hearing was held, but it looks as if the bill died in committee, and never came to the floor for a vote.

As you might guess, we've had direct Joy-experience with this, two times this year now. We've been so fortunate to have finally hit the sweet spot with her meds combo, such that the scary-seizure days have receded into memory for a while now. One of her two meds has been generic from the get-go, but the other one began as a brand-name.

I knew about the substitution concerns, and so I was taken aback when I showed up for a refill at the pharmacy counter this past January and was told that our insurance wasn't covering the brand-name anymore, so they'd filled it with the generic. I pressed the pharmacist a bit, but he seemed to think that we'd be in for an uphill fight for reimbursement if we wanted to try to get doctor's orders not to switch. I went ahead and let them ring up the generic, and contacted Joy's neurologist, who said he didn't anticipate any issues with the switch. So we started in with the generic, and saw no problems, and so that chapter ended well except for being an extra worry in the back of the mind as we started in on that new bottle.

Well, here we are only six months later, and they've switched it again. This time it's from one generic to another. This time the issue was with our pharmacy's wholesaler, who suddenly made a complete switch to another manufacturer. The pharmacist was, once again, sympathetic. He had taken a continuing education session on just this issue (generics and seizure meds), knew the concerns... and couldn't do a thing for us. He did try, calling the wholesaler just to be sure that the other wasn't still available. I'm sure the pharmacist's boss wouldn't thank him for this, but he even suggested that we might want to call around and go to a different pharmacy if we could find someone else who carried it! Which we don't really want to do -- inconvenient at best, and who's to say the new pharmacy's supplier wouldn't pull the same trick in a month or two?

The legislation was well-intentioned, but I wonder it would really help either situation. It's aimed at the pharmacist, but he/she can't do anything about what our insurance will cover, nor (probably) about decisions at the wholesale level.

I dislike ending a politics-wonk blog post without a call to action. Sigh. Maybe just to think good thoughts for us as we crack open the new generic bottle, that all continues well with Joy's seizure control.

Another Sign of Progress and Maturity

You know how when a baby is little, you have to take her to the pediatrician all the time? First every couple of days or weeks, then every few months, then at half year intervals, then annually to age 5, then it spreads out to every two or three years.

It hasn't exactly worked that way with Joy. We started out with that basic pattern, but things kept intervening. Like seizures, like autism. When we eventually switched pediatricians a little while back, ending up with Joy's current family doctor who is expert in special needs, he put her on a schedule of follow-up visits every four months. Lots of appointments.

I'm happy to report, though, that we've recently "graduated" to longer intervals with a couple of Joy's specialists.

First came the pediatric neurologist. We've been seeing him at least twice a year for quite a while now. The last three visits, though, we've been able to report that we've not seen any seizures since the prior visit. And when we saw him in May, he told us to schedule the next appointment a full year out. Woohoo!

Then yesterday we had to go back to the eye doctor. I blogged about this one last year; how I'd been sent back to the opthalmologist where we'd had the worst appointment experience EVAH, then managed with a lot of pre-planning to have a much smoother experience a year ago. Our follow-up appointment yesterday wasn't starting out so well -- even though we had the first appointment of the day, the waiting room was crowded, the lady at the desk didn't want to hear about Joy's needs ("you can tell the person who comes to get you"), and Joy was starting to get fussy in the 20 minutes it took for the person to come get us. As crowded as it was, I was fearing that we wouldn't get the private exam room to wait in low light for the dilation; plus the more people, the higher the chance of waiting delays. Arghh.

However, once we got into the exam room, people started to jump for us (jump for Joy?!) Joy was unhappy but at least willing to let her attention be directed enough to look where they wanted her to look. The doctor came in quickly -- and said that she really wasn't seeing the kind of strabismus/tracking-problems that had sent us there the year before. (We still see tracking issues, but I haven't been noticing them nearly as much). She didn't think it would be worth it to dilate Joy's eyes as we'd planned (YESSS!), and told us we wouldn't need to come back for two or three years unless the tracking got really bad, to the point that she was having trouble maybe half the time to pull her eyes back together.

Fewer appointments is always a fine thing. It's so good to have both the improvement and the maturity.

To What Can We Attribute This?

I'd like to share another snippet of the conversation with Joy's excellent primary care doctor, from the appointment at which we reversed course on the surgery.

After I had recounted several aspects of the wonderful new developmental stuff that we've been seeing with Joy, he asked me a question. I don't remember his exact words, but the sense was: Why do you think this is happening? What's the cause, do you suppose? To what can we attribute this?

My answer was along the lines of: well, we don't really know. We haven't really tried anything new. Maybe it has something to do with springtime. Maybe we've just finally had the seizures under control long enough. Also all the good work we've been doing with intensive therapy -- and, of course, she's growing up!

He affirmed my assessment of the situation.

(Interesting to think that it if it had been "neurotypical" Rose who'd had a huge developmental spurt, nobody probably would have even thought to ask the question...)

Now just think how different that assessment might have been if we had decided in, say, February to start Joy on the GFCF diet. Or hyperbaric oxygen therapy. Or any one of the therapies from the "alternative intervention assignment" we did in LEND seminar.

We might then consider Joy living proof of the miracle powers of whatever-therapy, even though all the gains would have happened anyway.

This thought isn't original with me. I've cribbed it from Viktoria at Conductive Upbringing, who recently told such a story about India, a lovely young lady who has cerebral palsy. Recently and unexpectedly, with no new therapy to attribute it to, India suddenly grabbed and slurped an entire glass of pink-milk through a straw, where previously she'd demonstrated no willingness or ability to drink so much, so unassisted.

Viktoria tells this story in a well-documented, evidence-based, thoughtful post about the hyping of stem-cell therapy as a cure for cerebral palsy. In previous posts she took on hyperbaric oxygen therapy (yes, the purveyors of HBOT would have you believe that it works wonders for CP as well as autism), and magnetic therapy.

Fortunately, since India (like Joy) was not receiving any such therapy at the time, we can celebrate the amazing powers of human development. What miracles we are, every one of us, when you come to think about it!

Hope

In my last post, I quoted several times from an article in this week's Time, in which author Karl Taro Greenfield profiles Jenny McCarthy, prominent celebrity-mother proponent of alt-med recovery for autism.

I guess I'm not quite done with the article yet.

Greenfield sums up McCarthy's campaign with these words:

Of course, McCarthy is not a doctor. She really has only the one prescription: hope.

The article also quotes Age of Autism blogger Kim Stagliano criticizing her children's doctor for failing to offer that hope.

'I have three children on the spectrum,' says Stagliano. 'I have yet to really get one actionable piece of assistance from my pediatrician. They offer nothing. Nothing... These treatments are filling a vacuum.'

Joy and I have had our moments of this too.

It was just about two years ago, February 2008. And Joy hit a stretch of misery. She was having frequent seizures at that point, several a day, one-minute-long events that each carried an hour of inexorable unhappiness in its wake. But it was more than that. She was waking in the night to cry. She was inconsolable for hours at a stretch. She'd grab us by the hand and lead us to the front door -- but once we took her outside (into the frozen wasteland of February in Wisconsin), it was clear that she really didn't want to be there either. We came to believe that what she was asking when she led us to the door was "Take me away from here, to somewhere that will make me feel better!" And we had no means of doing that. We were helpless. I took her to Urgent Care, certain that there must be an obvious physical cause. Ear infection? Strep throat? But no.

Several days later found us in our pediatrician's office -- a capable woman, who'd done a good job with Joy's care to that point. I like her very much -- she brings a good combination of empathy and no-nonsense, plus an undercurrent of shared Christian faith. But that day, as Joy raged around the exam room taking divots out of the exam table with her teeth, the pediatrician had nothing to offer, beyond a weak suggestion that I should really seek out some respite help.

Nothing to offer. No hope.

That wasn't an answer I was prepared to accept. I began working my local network.

What kept me going through the next days were two conversations. One was a phone conversation with an expert from Agency 2, who also has a child on the spectrum. What stood out from my conversation with her was the sympathy, the "been-there-myself," and a suggestion of craniosacral therapy as something that had been helpful in their situation. The other conversation was with a friend from church with spectrum experience. She had several suggestions for pediatrician-switching.

Those conversations gave me the hope I needed, plus something to do. And during the days as I explored the possibilities of craniosacral, and the options for a new pediatrician, Joy's misery began to gradually ebb. On its own. And spring was coming. We were going to make it after all.

I'm grateful that the incident led us to a new doctor for Joy, even if he's across town. He specializes in special needs, and has parental experience on that score as well. We see him every 3 months as a matter of course. I don't expect to hit that "nothing we can do" wall with him. (Rose still sees Joy's former pediatrician, and I'm pleased that by "firing" her for Joy, we didn't lose our connection. In fact, her office got the H1N1 vaccine before Joy's new clinic did, and she called us to let us know and offer it to Joy!)

As for the craniosacral therapy, it became less urgent once we were out of the immediate crisis. We did eventually make the attempt later that summer, to no discernable effect, and blogged about the process in detail.

Interestingly, Joy's initial pediatrician was actually "right," in a way. Joy made it through the crisis without medical intervention -- we needed to do... nothing. And respite was a sound idea! But the lack of other ideas, and the lack of hope, was just not tolerable at the time.

So far, I'm sounding like I'm resonating pretty strongly with Kim & Jenny. And up to a point, I guess I am.

Here's where it differs, though. The hope I was seeking was not cure/recovery from autism. The hope I needed was for a livable life. For me, those two ideas are not the same. Our new pediatrician isn't offering recovery/cure. But he does offer expert medical guidance as we seek a path for a meaningful, joyful, potential-fulfilling life. We're grateful for that.

I'm wondering a couple of things, as I remember that sequence of two years ago.

One: would it have been helpful for Joy's former pediatrician to offer some form of placebo? Even if she didn't believe in it herself? After all, hope is what was needed...

Two: do parents of children with known genetic conditions (Down syndrome leaps to mind) blame their pediatricians in the same way that some parents in the autism community do for not being able to offer a cure?

I'd have answered "no" to the second question, but after having heard the LEND presentation on vitamin therapy for Down syndrome (to be blogged about soon), I'm no longer so sure. Though if that level of blame & conspiracy-thinking is happening, we're not hearing about it in the popular press in the same way.

What do you all think about placebos, and about what level of blame is fair to heap upon pediatricians, or upon Western medicine in general?

Artifact from Another Era

The semester ended. And I looked around the house, rather shocked at what I saw. Oh, the piles of "stuff"! And the dust-bunnies!

And, we're hosting our fellowship-group from church for a potluck on Saturday!

So I started to dig out, and organize the piles and bags and boxes that have somehow accumulated all over the place. One bag that I dug into to organize was Joy's little bunny-backpack, which serves as a diaper bag.

At the bottom of the bag, I found an artifact from another era. It was a syringe of emergency medication, for use in case of a seizure that lasted emergency-long.

We never came close to an occasion to use it, and the seizures eventually faded, and we go entire days (weeks?) without thinking of them. It was time to move the medication -- still well within its "good till" date -- into the medicine cabinet and not carry it around everywhere.

Those days may yet return. For now, though, it feels really good to take that medicine out of the diaper bag. The less unnecessary stuff, the better.

P.S. I think I'll tackle the piles of paper on the desk tomorrow. And clean the bathrooms. Wish me luck.

9/11/2008 - 9/11/2009 and beyond

It's been an entire year...

since we last witnessed a Joy-seizure.

Break out the fizzy juice!

A Merry Little Christmas

There have been some lovely posts lately on a Christmas Carol theme, specifically the ghosts of Christmas past, present, and yet to come:
Ghosts of Christmases Past at Diary of a Mom, and Ghosts of the Season at Maternal Instincts were two that particularly struck me.

I've been reflecting on Christmas comparisons, Christmas progress, Christmas forecasts as well.

Christmas 2006 was a rough one. We'd just had Joy's autism diagnosis days before Christmas, and had not yet comprehended the dimensions of the regression she'd been experiencing. She was also having seizures, not too disruptive yet but definitely there. That holiday had some elements of shell-shock.

Christmas 2007 wasn't a piece of cake either. That year the seizures were in full swing, and Joy wasn't feeling well at all. The traditional family visit to AuntieS' place was one big meltdown. And then a whole bunch of switches flipped all at once (i.e. another regression) right about at Christmas, and the next few months were some of the roughest we've had yet.

This year? We had a lovely quiet Christmas. The seizures have been on hiatus since mid-September (touch/knock wood!) Not even really on the radar screen right now, which feels very nice.

While the seizures don't have me on edge, the whole regression thing does, seeing as how it's happened twice in a row at this time of year. So far, though, there's nothing in particular to point to. (More touch/knock on the computer desk, or my own forehead...)

We'd hoped to go party with the extended JoyDad family at AuntieS' on Christmas Eve per usual, and even got into the car and drove for an hour, but there was blowing snow across the highway and lots of slow travel and cars in the ditch, and we eventually turned around. A shame to have missed it, but we're hoping to see most everyone tomorrow night if the weather doesn't get in the way again...

We let the girls open one present each on Christmas Eve since they didn't get their extended-family presents. Then they climbed into their brand-new matching footie-jammies and settled down for a long winter's nap.

Christmas morning brought giggles and grins and a lovely pile of presents, though not so many that we couldn't open them one by one, to savor each in its turn.


Joy's favorite present, hands down, was the accordion tube in her stocking, that makes noises when you squish it open and closed.


The My Little Pony was also a hit due to its lovely stimmy mane & tail. And then there was all the tissue paper, and one shiny ribbon in particular. She didn't really get the whole present-opening thing, but was willing to play along and pull and tear paper when encouraged. The aforementioned presents and trimmings kept her happily occupied pretty much all morning.

Rose was thrilled with her new My Little Pony too (the pony's name is Snow-El, I kid you not!) She also liked her new Children's Dictionary, and the old digital camera that we handed down to her since Santa brought us a new one. She spent lots of time posing the ponies -- Snow-El is the white one with the halo:


A highlight for JoyDad was a collection of 8x10 photos from the lake up north, with a promise of post-Christmas framing. For me, I got footie-jammies too! And then there was this mask that Rose made for me:


Christmas Day passed at a leisurely pace. Rose and I baked zwieback, a traditional double-decker yeast bun (the link is to a blog called Mennonite Girls Can Cook!!)


As darkness fell in the late afternoon, we all ventured out by car to drive through an elaborate display of holiday lights that appears each year in one of the local parks. And after dinner, we actually built a fire! In the fireplace! And Joy was laid-back enough to keep out of the way, with only a little additional monitoring!

I've got a lot of questions for Christmases yet to come. At what point will receiving and opening gifts actually become a joy for Joy? When and how to involve her in the giving of gifts? Will the whole Santa thing ever make enough sense at all to explain? Or more profoundly, the newborn baby in the manger, God on earth among us?

But all in all, this has been a merry little Christmas so far, with more family treats yet to come.

God bless us, every one.

Generalization

Traveling with Joy & Rose has proven to be a whole lot easier lately, generally speaking.

When I started this blog back in July, we were just on the point of noticing a pattern -- that Joy's seizures got worse when we had long days of car travel. But then came this current string of seizure-free (81 days right now, touch/knock wood!) When we went to the northwoods in October, Joy travelled like a pro, and we had the same experience this holiday.

First leg of the trip took us to Thanksgiving Dinner at the home of AuntieS, where we contributed the pies:


Next leg was to the home of my grandmother, Great-Grandma to Joy & Rose. At 99, she still hosts us overnight in her apartment and cooks for us and is so very interested to see the girls and hear about all the details of what's going on with us!

Joy was very comfortable at Great-Grandma's this visit. Everything about it was easier. For example, Great-Grandma noticed that Joy didn't cry AT ALL the entire visit. (No seizures means no seizure-fusses!) She initiated happy jumping-games with random adults, including an in-law relative whom she only met once before. She did almost no grabbing for forbidden stuff, and she did a lot of self-entertaining.

The last two points (grabbing & self-entertaining) combined into an interesting accident at one point during the visit!

Great-Grandma has a fun box of old, old toy building blocks. She has also tossed into that box a bunch of little clear plastic discs that come with the packaging for hearing-aid batteries. An example is on the left in the photo below:


Joy took a shine to the little plastic disks, especially once she discovered that they made a fun little clattery noise on the kitchen floor if she threw one down. She spent long stretches of time carrying little disks over to the kitchen and tossing, retrieving, tossing, retrieving.

Then during one of these games, when our guard was down, she looked up on the kitchen table and noticed a different kind of disk. Similar, yet larger and sparklier, like the disk on the right. It was a cut-glass coaster. And what a lovely crash and a shatter it made when she snagged it to use in her tossing game! As we galloped into the kitchen to remove her from the shards, she was trying to retrieve one of the larger pieces to make it happen again...

What a neat bit of generalization! So near, and yet so far. And she was so pleased with the results of the new toy, we had to work to keep her out of the kitchen after that point, as she obviously had it in her mind to reproduce all the fun that happened when she used the big sparkly tossing-disk.

Disk-shattering aside, though, in general it was a superb holiday!

Speaking of superb -- I got a most excellent blog-award last night, from Barbara at TherExtras. She has selected me for The Baddest Mommy-Blogger Award (remember, bad is the new good!)


Here's what she had to say:

JoyMama is bad-to-the-bone. She was bad before she became a Mama - as evidenced by her willingness to EAT FIRE. And be photographed doing so. And post photos on her blog. After I asked for proof. Clearly, God prepared her for rare and wonderful parenting.

I'd be blushing, but when you're b-b-b-b-BAD to the bone, ain't nobody can make your face turn red.

Oh, and if you needed more proof that I'm a bad-mama rule-breaker -- as admitted previously, I generally don't really "do" tagging/awards. So I'm not passing it on, even though I know plenty of baaaad mommy bloggers. I'm sure the award will make its way around in due time!

Taking the Lane

I've mentioned a couple of times that I have a rather nice bike-commute to my part-time job. It takes about 20-25 minutes each way, most of it is either bike lane or bike path, some of it is lakefront, and there are just enough inclines to make it a bit of work without being too discouraging.

The most dangerous bit is a left turn that happens near our house, crossing a busy street. Left turns can be tricky. In general, the safest way is also the scariest -- you have to leave your bike lane, merge into traffic and act like a car for a bit, blocking other cars until you've completed the turn.

This maneuver is called "taking the lane."

Now, one doesn't HAVE to take the lane. The more timid route is to come to a dead stop in your bike lane, wait for all the traffic both ways to pass, and then quickly cut across the whole street. Trouble is, there may be other bikers behind you, who may or may not want to turn themselves.

Alas, my bike commute ends for the season when the Daylight Savings switch comes around in the fall, even if the weather is still good. Once we "fall back," the left turn near our house on the way home begins to happen after sunset. And I don't play traffic games on a bicycle when dark is falling!

In past years, this is when I begin to turn into a hibernating pudding. At the time I most need the exercise (yes, I've finally realized I do have some seasonal-affective issues, on top of the holiday feastings), I lose my best regular workout. Fortunately this year, the Couch to 5K training program came along just in time. I'm midway into week 3 now, and it still feels pretty do-able. We're also getting an exercise bike to go with the treadmill. Maybe after the 5K I should train for a triathlon? Nahh, let's not get ahead of ourselves...

Anyway. These past few months I've been blogging have been an interesting "take-the-lane" time for me in other ways too. I've found myself to be more of an idea person, and being unusually forward in acting on those ideas. Things as small as -- getting in touch with the principal & PTA co-presidents to inquire whether there might be some way to get the city to do a better job of snow-removal on the sidewalks across from the elementary school, which was a real pain in the patoot during last year's record snowfalls. (My e-mail turned into a PTA board meeting agenda item; people-who-know-people inquiries are underway).

Two potentially larger things are spinning with my plates now too. Remember my dad's lovely review of beyond.words by dre.dance? Suddenly I got the itch to try & bring the production to my city! I've been in touch with the director, and the booking agent, and some contacts both in the arts & autism community around here... it may or may not happen, particularly in this economic climate, but wouldn't it be too cool?

Second, I've been taking some steps on my idea of creating an online information source and support group for linear nevus sebaceous syndrome, something that is sorely lacking on the web right now. I've got a potential partner lined up for maybe providing the domain & web hosting, and I've collected a bunch of information from the medical library -- working on a draft of the site, in all that free time of mine.

Lots of "taking the lane" going on, even with the bike commute over for the year! Now that I've told you all this, it gives me extra accountability to keep moving on these projects. I'll let you know.

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And in further updates: we're doing better on the sleep front, helped by melatonin, nap management, a white noise machine, and we're now waiting/weighting on the weighted blanket to arrive by mail. Maybe the dimmer switch is moving in the right direction too. We can hope.

And yes, we made two months seizure free! Woo-hoo! Neurologist appointment later this morning (I really must go get ready for the day)... we'll see what that conversation brings.

Break Out the Fizzy Juice!

Last night we held a small celebration, marked with butterscotch pudding and raspberry-apple fizzy juice (the kind that uses a plastic arch over the bottle cap to make it look like a champagne cork).

Yesterday officially marks a full month since Joy's last big seizure!

We came so close, several times. We almost got to a seizure-free month as April became May, but then had a whopping 7-seizure day to end that happy string. Then we almost made it through August, but not quite.

We almost could have counted September, because the last big seizure that actually interrupted her day was August 31. But then we heard her seizing in her crib after she went to sleep for the night on September 11.

This time, though, it's really official.

We baked cupcakes this morning, to take to daycare tomorrow. (When did cake-mixes boxes stop including instructions for how many strokes to beat by hand?) Rose cracked the eggs and laid out the cupcake holders in the tins, and Joy did a bit of stirring.

I should note that we're quite sure Joy continues to have ongoing subclinical seizures pretty much all the time. This doesn't mean the seizures have gone away, by any means.

Still, it is absolutely fantastic to have had an entire month in which her days have not been interrupted by the big blue-lipper kind of seizure. Actually, that's been more like a month and a half, since the September 11 one was in her sleep.

Woohoo! Anyone for two months?

Swinging, Swinging

There's a song about swinging, based on a poem by Robert Louis Stevenson, that I sing to Joy & Rose, that my mother used to sing to me, that her mother used to sing to her. (In case you're keeping track, that would be Joy's great-grandmother, who is 99 years old and reads this blog regularly. Hi, Grandma!)

How do you like to go up in a swing
Up in the air so blue?
Oh, I do think it the pleasantest thing
Ever a child can do!

Swinging, swinging, up in the air so blue,
Swinging, swinging, up in the air so blue!

Joy has (almost) always loved to swing. She's long outgrown the baby swing, of course, but we have photos where we'd put her in the chair and flipped the switch to set the thing rocking, and it made her so happy. Later we made copious use of the swings at the park, and Joy's occupational therapist taught us to swing her in a blanket, telling us that the swinging was useful input to Joy's vestibular system. Therapeutic and fun, too, what a package!

But then at Christmas 2007, Joy had a major regression and her internal swing switch flipped to the "off" position. We first noticed in a January therapy session. In December she'd practically begged for blanket-swinging, to the point that we were using it as reward; in January, she wanted nothing to do with it.

When spring came, we learned the extent of her new aversion to swinging. At the park, I couldn't even get her into the toddler swings that had delighted her so much the previous fall. At the zoo, her beloved grin-filled carousel rides had become occasions for strenuous complaint. She didn't even like the stroller rides back and forth walking her sister to school.

This lasted all the way to mid-September, a couple of weeks ago.

Then, apropos of nothing that we can identify, the switch flipped back "on".

Gleeful swinging at the park. Big smiles on the zoo carousel. Zero protests on the stroller rides. So much renewed joy!

What is it that flips her internal switches? It's been a useful metaphor for me lately in thinking about how Joy operates. This probably won't be the last time you find me using it.

Meanwhile, how do you like to go up in a swing, up in the air so blue?

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P.S. We're back from the northwoods. I'm saving the full detail for Special Exposure Wednesday, but here's a tiny preview... you can tell a lot about how the weekend went by the total number of seizures that Joy had.

And the number was...

ZERO.

Looking forward to sharing more!

All Lit Up

You know that the school year will get off to a good start when...

You tell your school-district team leader the name of your autism-therapy senior therapist, and her face lights up, and she says something to the effect of, "Oh good, we've worked together before, she does a great job and she runs her meetings so well too."

And then,

you tell your autism-therapy senior therapist the name of your school-district team leader, and her face lights up, and she says something to the effect of, "Oh good, we've worked together before, she's great to work with and has such good ideas."

The world needs more of that kind of light!

We are finally getting closer to having a full schedule with Joy's intensive autism therapy, plus this was the first week for her of seeing all three of her school district therapists, who work on an itinerant basis, coming to work with her at home and daycare. Joy's pushing back a little bit about all those hours spent with adults bugging her to be interactive and DO things, I think, but I'm hoping that she'll get used to the full schedule before too long.

Meanwhile, one more thing that's making my face light up -- since September 1, we've been on another string without knock-down seizures. Target date for month-a-versary party: October 1. We shall see.

In Praise of Awesome Community

We now return to our originally-scheduled programming, which involves the enumeration of blessings.

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.

Rats'm Frats'm Blankety-Blank Seizures!

Just when I get to counting my blessings...

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.

Five reasons to be cheerful!

1. No seizures yesterday!
   
2. Wonderful long nap yesterday too (that would be Joy, not me, but still).
   
3. We've had a fully-fenced back yard for a full week -- no more mad dashes into the street, with mama in hot pursuit!
   
4. Joy is beginning to prefer her sister's high-backed booster seat in the car to her own almost-outgrown convertible carseat, and is staying in it well.
   
5. Beautiful day for biking to work. Take THAT, Big Oil.