Tuesday, August 29, 2006

The Agony of Waiting for Poo

Yes, dear reader, this post is about poo (bowel movements in adult speak), or more accurately, the absence of same. And please note that the ‘No Sarcasm’ sign has been turned off for the duration of this post.

Fortunately, it has been revealed by some in the neurodiversity camp that there are no proven links between any comorbidities and the causes of autism (other than - potentially - seizures). As such, I can therefore hold my head high and treat the Bear’s medical issues without any fear that I could be accused of trying to ameliorate her autism. Her biggest set of remaining medical issues - yes, there are others that now appear to have been ameliorated - are GI related, including alternating and sometimes concurrent chronic constipation and diarrhea, and absorption problems (e.g. low levels of many essential trace minerals and iron – as confirmed by Ontario government medical lab tests, for those whose thoughts veer off in rebuttal in the direction of quack labs - despite supplementation).

The latest bout (note that 'latest' is not synonymous with 'first') started on Friday at around 2:00 PM. The Bear, who had not had a bowel movement in three days, had what we affectionately call a 'shart', i.e. a small leak of gas and liquid stool. Momma Bear cleaned her up and waited for ‘the big one’ which usually follows. Instead, the Bear had another shart. Same cleanup, same wait. And another. Same cleanup, same wait. The Bear usually has a bath after a bowel movement (like night usually follows day - to us it is not a BM but a BM&B) and is fine. This time she did not, and the combination of wipes, rubbing, and irritation from the sharts left her rectum sore and red. Now comes the really fun part.

The Bear began to try harder and harder to have a bowel movement. It obviously hurt, and she started to cry. She strained harder, and cried more. And then she relaxed, calmed down, and looked just plain uncomfortable. A half hour later, the same thing, but with louder crying, screaming, and more tears. Crying is unfortunately ‘normal’ on these occasions, but this time it was worse, and the crying and straining continued on and off with increasing frequency for a few hours. Eventually she passed a small brick (yes, it was about that hard), with much crying, obvious pain, and discomfort. Momma Bear had a very hard time cleaning her up, because by this point the Bear was quite sore and resisting any and all efforts. She then had her bath, I came home from post-work grocery shopping, and we thought this was over for the evening.

But it wasn’t. Within a half an hour, she started sharting again. And pushing, and straining, and crying, and yelling. We kept checking, and trying to clean and wipe her and load on the protective barrier. Because she was so sore she kept resisting. Obviously more was coming, and the frequency of sharts was too much to put her in the bath. Faced with the choice of leaving her and allowing her to become more inflamed, or wrestling with her to clean her, we chose the second option. For some reason, the fact that we kept explaining what we were doing and saying that we were trying to help her didn’t seem to matter to her very much. And Wow! - residual hypotonia notwithstanding, is she ever strong! The frequency of attempts increased to about every ten minutes and went on for hours. We talked about taking her to the ER to see if we could get an enema (my choice), but figured that she would probably sit in the waiting room for a few hours with the same issue and no easy way for us to keep her clean, which would lead to further irritation (Momma Bear’s thoughts).

By about 3:00 AM she fell asleep, exhausted. For about ten minutes. Then she woke up, crying and whimpering as she strained, and fell back asleep. This continued all night. By about 8:00 AM, when the Bear woke up for good, Momma Bear and I were at wits end. When we checked her diaper, sure enough she had had more sharts during the night. More cleanup, more wrestling. Of course, we were handling this like the mature (and well rested) adults that we are (if you believe this…), which was helping the situation immensely. We compromised on phoning the provincial Telehealth service, where we could speak to an RN.

The RN walked us through the emergency list (still breathing - from constipation??? - and no fever, which was good), and ensured the Bear was properly hydrated (she was). She asked about her diet, which contained all the right foods, etc., and we mentioned that a) the diet was worked out by a PhD in Nutrition and b) that the Bear was in the process of coming under the care of a GI specialist at a local children’s hospital (thankfully, as a corollary of free medical care everything works at lighting speed). She suggested monitoring the situation (our first choice too for a distressed child who is regularly screaming out in pain) and bringing her to the Doctor if it didn’t clear up by the next day. She gave us a list of preferred foods (pretty much all of which the Bear already eats). She also asked if we had tried a suppository. "Er, no?" Given my experience with such things, she explained how to use one – “You want me to do what?” – and off I went to the Pharmacist to buy some.

Back home, we went through another cycle of pushing, and then we cleaned the Bear up and tried the suppository. (Of note, this is the first ‘supplement’ that I’ve tried on her that I haven’t tried on myself first). Of course, the Bear graciously cooperated through this. We put a diaper on and waited. Within five minutes she gave a mighty strain, complete with screaming and tears, and there it was – ‘Brick, the Sequel’, complete with an embedded and undissolved suppository. We were overjoyed. By early afternoon the Bear was cleaned up again, bathed, fed, and she was happy. Much happier than anyone with no real sleep the night before had any right to be. She ran around giggling, wanted to play, wrestle, was in great spirits, and still actually liked us (I’m still expecting PTSD to kick in within a few days). Now all we had to worry about was the two jars of prunes and the spoonfuls of Lansoyl. We didn’t want any more action for at least 24 hours so that the cream and time could have their healing effect.

Sunday morning, and all was still quiet. Then the strains and crying started again. And the pushing. And the sharts. She also started toe-walking, something that she had stopped doing nearly a year ago. Here we go again. This time though, we had the suppositories. We waited about half an hour to see if the Bear could resolve the problem. Momma Bear wanted to wait a few minutes more, but not this time. In went the suppository (again, with the Bear’s complete and total cooperation), and within five minutes, out came Brick #3. After the cleanup and bath, peace and order was restored. For now.

So far, everything is okay. The GI specialist has moved much higher up our priority list, and we’re trying to figure out just how many prunes one little girl can eat. But thankfully I can rest assured that – despite a lack of research (only now is the UC at Davis starting to look seriously and systematically at the issue of comorbidities) – like all of the Bear’s many medical conditions that we have cleared up (commensurate – totally coincidentally - with some of her most significant gains), this has nothing whatsoever to do with her autism. What a relief!

The ‘No Sarcasm’ sign has now been turned back on.


Update – Yesterday the prunes and Lansoyl caught up. The Bear had three 'normal' (for her) mushy wet BM&Bs, without a lot of upset. We’re now back to the other end of the BM spectrum, until the pendulum swings back to constipation. Note also that I promise to do my best not to write about this issue again.

Friday, August 18, 2006

A Couple of Bear Updates

Sometimes you lose, and sometimes you win.

On Wednesday the Bear had another PECS session. She was doing so well at home, demonstrating that she understood which card to use to request ‘milk’, or her soother, or the swing, and she was also showing signs that she was starting to understand other cards as well (for various videos and games we play with her).

So at the PECS session, I set up her binder with three cards on it (nose, spoon, and ‘milk’). She selected the milk card and handed it to me. I held it up to show her, said ‘milk’, and then handed her the cup with a couple of ounces of milk in it. While she drank the 'milk' I put the binder out again with the soother card. When she finished, she handed me the cup, looked over, grabbed the soother card, and handed it to me. I again showed her the card, said ‘soother’ and gave it to her. So far so good.

The therapist then said, what would happen if you gave her a choice of milk or soother, and then had her choose the right item after giving me the card? I was confident that she would get this right. We put both cards on the binder, and she pulled the milk card. I then showed her the card and identified it, and put both options in front of her. She scooped up the soother and walked away.

We repeated this three times, and each time she selected the milk card and then took the soother. Apparently ‘milk’ is the first card to choose in any situation, followed by soother, and then by something else.

We’ll keep working on this one. At least she can distinguish between the cards. Now we just have to link them to the correct object/action.


When the Bear goes to IBI we always pack her a snack. Today was sliced organic strawberries and kiwi. The goal is to get her to use a pincer grasp to pick up the fruit and eat it. If they put the food in her hand she will put it in her mouth, but getting her to pick it up herself is not easy, and a pincer grasp is harder still. Most of the time she will grab the tutor’s hand and guide it to the bowl to signal that she wants them to pick up the food for her and put it in her hand. We and they also put food on her spoon and try to get her (guided) to put it in her mouth. She has never attempted to do this by herself.

Today, totally unprompted, she reached over by herself and picked up the spoon, which had a piece of fruit on it, and put it in her mouth, as if she had been doing it for years. Her school is closed for vacation for the next two weeks. In the meantime, you can bet that she will have lots of access to a bowl of sliced fruit and a spoon.

Sometimes you get a win, and sometimes you don’t. I’ll put this week in the win column. Tonight we’re off to Canada’s Wonderland to celebrate.

Saturday, August 12, 2006

Five Weird Things

As part of the meme going around the bloggosphere, Wade ‘tagged’ me to identify five weird things about myself. Narrowing down the list was hard – e.g. do the giant one-eyed white cat (now deceased), and the constant presence of Lithuanians in my life count? Where is Lithuania, anyway? (Don’t worry, I know exactly where it is!) But here goes:

1. I can’t swim. Yes, I know Canada is cold at least one month of the year, but it does have a lot of lakes, ocean shoreline, swimming pools, etc., plus the colony of Florida, so the opportunity is there. Despite repeated attempts to learn, I cannot master the breathing technique involved. I love the water, I love to canoe (and am quite fast), I’ve done more than a little portaging and whitewater, and can finally make my way across the length of a small backyard pool. But that is my limit. Fortunately, Momma Bear has every lifeguard designation imaginable. The Bear loves the water, so we’ll see who’s genes she has inherited.

2. I like to travel on my own. While I also enjoy vacations with others, and have gone away with family, large groups, small groups, girlfriends, and now Momma Bear (not yet with the Bear, but soon), I’m quite comfortable going on my own. I went to Israel by myself and worked on a kibbutz for four months (not a southern kibbutz where one hangs out with other non-Israelis, but a smaller northern kibbutz where I was at times the only volunteer). I’ve also backpacked and EurRailed around Europe by myself, from Norway and Finland to Greece and Italy, including through what was once East Germany and Yugoslavia. I also studied abroad with a girlfriend, and when we broke up I again went off traveling by myself for a bit. Whenever I wanted company it was never an issue to meet people and temporarily travel with them, but when it was time to move on, so be it. I would feel quite comfortable doing the same today, but confess that I would much rather go with the Bear and Momma Bear.

3. I love cartoons. I’ll date myself by mentioning The Flintstones, The Jetsons, Tom & Jerry, Bugs Bunny (for which I will drop almost anything), Tweety & Sylvester, Yosemite Sam, the Roadrunner & Wile E Coyote, etc. I’m not so big on the more up-to-date stuff, but I will confess to having to be dragged out of Entertainment departments in stores when 'Ice Age' or 'Monsters, Inc' have been playing.

4. I designed our house. I don’t mean rough sketches, but a proper blueprint-ready design. When we were ready to trade up, my wife and I hunted on weekends for a house that we liked. She also went looking during the week. For two years she scoured our region (we had the gas bills and mileage to prove it). When we couldn’t find anything, she switched to looking for land so that we could build to our own design. Once we found land, we went looking for a design, but again couldn’t find anything that was ‘just right’, so I got a couple of good books on design, figured out how to do it (including sizing – e.g. size rooms to match construction material sizing to keep costs in line), and drew up my own design (obviously with input and approval from Momma Bear). When done, we found a contractor to build it, and he turned it into final blueprints first. He didn’t have to change a thing.

My only regret is that the master bedroom is downstairs, while the rest of the bedrooms are upstairs. The theory was that the kids would be five and under for five years and teenagers for seven. I’m paying for that now.

5. I won a weight loss contest, losing 46 lbs in 77 days. We had a contest at work to see who could lose the largest percentage of their starting body weight. The contest ran from early January to end of March. Everyone put in $100 each, and the person who won took the pot, with second and third place getting their money back. There were twelve of us. I weighed in at 197 lbs (I’m 6 feet tall). It was during the time that we were building the house, and I wanted to use the money to pay for a Jaccuzi. I’m also way too cheap to give away $100. So I dieted (proper nutrition in small quantities and vitamins), exercised (at one point I was walking up 100 floors per day – yes, 100 floors), and the weight melted away. I had no idea how the others were doing except during the two early weigh-ins (in which a couple of others were close), so I just kept going. By the end of the contest I was down to 151 lbs, which in perspective is four pounds less than I weighed in undergrad. No one else was even close. Yes, I can be a bit competitive.

I used the money to buy a two person Jaccuzi (well, the contest paid for most of it). We’ve used the Jacuzzi three times in five years (all in the first two months). Today it holds the Bear’s bath tub, where my wife baths her. I now weigh around 180 lbs, having put most of the weight back on within three months.

So, now it’s my turn to tag three people. I tag:

María Luján (I’ll guest host if you want, but I see no reason that you should escape this)



Sorry all.

And Wade, starting a new meme tradition, in retaliation I just signed you up for the Lithuanian Wine of the Month club. ;-)