I started this blog because my daughter is autistic, but these days autism is definitely a secondary consideration - dare I say a luxury? Life is now about bowel movements – the Bear’s, not mine. In an earlier post I promised to do my best not to write about this subject again. So instead, let’s just say that this post is about GI tract issues.
The Bear’s constipation issues are now always with us to some degree or another, but fairly recently we seemed to be on top of things (figuratively speaking), getting her down to two to three days between BMs. But nothing lasts forever.
For those who have any doubts as to my position on autism and GI tract issues, my working hypothesis these days is that while GI issues may not directly cause autism, there is definitely room for a relationship between the two – i.e. a comorbidity. As I noted in the ‘Kitchen Sink’ section of my ‘ASD as a Developmental Disorder’ post (in which I suggested that there is evidence that the Anterior Cingulate Cortex (ACC) and Anterior Insula may play a major role in autism), Devinsky et al (1995) noted a potential link between ACC seizures and muscle tone. Further, Ming et al (2007) identified hypotonia as the most common motor symptom (51%) in a study of children with ASD. I would suggest that given the ACC’s role in autonomic functions, including digestion, plus its potential link to hypotonia (which presumably can also affect the muscles of the intestines), that low GI tract motility, like ASD, could potentially be related to ACC issues. If not, GI motility and hypotonia could still be related. To be clear, I’m not suggesting that GI issues are universal in those on the spectrum. But I would suggest that in some cases the two could at least be comorbid. I also could be wrong. Regardless, I don’t expect any protest directed towards my call to 'Cure Low-Motility Now'.
We know that the Bear has motility issues, given the length of time it takes certain foods to transit the length of the GI tract. This is not the only cause of her constipation. We also know that she ‘holds’. Given some of her BMs (the word ‘brick’ comes to mind), I can understand why. And unfortunately it is difficult to reason with her (I try, I really do) that ‘holding’ makes BMs more difficult, while ‘going’ will lessen the issues over the long term. Our regimen so far has been Lansoyl (the sole contribution of our GI Specialist), kiwi fruit (seems to help a bit), and suppositories, as required. Suppositories are a last resort, when the Bear ‘stances’ (yes, this has gone on long enough for us to have developed our own terminology) – sitting, leaning back, stomach tightened, arms flapping, legs extended and pointing, as she tries to ‘hold’ – on and off over an extended period (usually at least a couple of hours, often several). Unfortunately, this last resort seems to be invoked about half the time, although we recently saw a reduction in the need to intervene.
On Sunday a couple of weeks ago the Bear had a BM after a five day hiatus. We didn’t think it was quite ‘enough’ (it is hard to tell - is there a standard for this?), but we expected another BM on Monday or Tuesday. No luck. And no ‘stances’. Perhaps we were wrong about the volume? By Wednesday afternoon she seemed a bit reluctant to drink her (rice) milk – normally it is almost the Bear's mission in life to grab us by the hand and lead us to the fridge to request this - but only slightly. And she seemed in good spirits. We took her to Canada’s Wonderland for the evening, and she had a good time, despite the oppressive heat and humidity. But Thursday at music therapy she was totally uninterested in her milk, pushing it away. This was very strange indeed, since she usually requests milk at least a couple of times during the 45 minute session. But she still seemed okay. Getting her to eat her dinner took some effort (a video, a book to read, parental singing and dancing – yes, dinner sometimes becomes ‘dinner theatre’) but she ate it. And we were still at day four, so no alarm bells were going off yet.
Supper was a different story. The Bear drank her evening milk very slowly. Momma Bear then gave her a bath, in which she drank a lot of bath water (from the tap as she was ‘showered’). By supper time she was very reluctant to eat, but the entertainment prevailed and we got some food in her.
Suddenly, everything came out - milk, food, and bath water - but from the wrong end and with considerable velocity. Everywhere. Momma Bear threw her in the bath to clean her up while I mopped up. We checked her temperature (no fever), and then put her to bed for the night.
The next morning we checked her temperature again (no fever), and felt her belly. I noted a reasonably firm spot below her navel (but not being a doctor, I wasn’t really sure what I was looking for), and we discussed taking her to the doctor. I wanted to take her in, but she was eating (reduced portions to go easy on her) and drinking again, and seemed in good spirits, although a little subdued. Momma Bear thought that maybe she picked up a bug from the amusement park, or maybe wasn’t agreeing with the heat, or drank too much water during her bath. So we agreed to hold off for a day, and upped the Lansoyl dose. Still no BM.
Saturday we again debated taking her in to the doctor. The Bear was a bit sluggish, but still seemed in good spirits. We waited for any stances (none). We were supposed to go over to my outlaws’ that afternoon/evening for a farewell gathering of family and friends for my sister-in-law and her family. They were in town for the summer, but heading back home to another hemisphere in a couple of days. We went reluctantly that evening, taking the potty and bath tub, just in case. We figured that we could take the Bear to the local children’s hospital if need be, as it was not too too far from the outlaws’ house.
At the outlaws the Bear was very sluggish. She cuddled up with her grandfather, which was not unusual, but later, rather than wanting to wander and explore she just wanted to curl up on the couch and be cuddled by various family memebers. She did request her milk though, so we thought maybe she was starting to feel better. But we did discuss taking her to the doctor the next day.
I crashed on the living room floor and the Bear came over and curled up beside me. Everything seemed okay, but then she sat up, and everything came up again – everywhere (including drenching me), and again with considerable velocity.
This time there was no debate. After getting a change of clothes (my father-in-law is much bigger than me, so there was actually some humour in this - somewhere) I put the Bear in the car and headed for the children's hospital. I figured that we’d have a better chance of finding someone there who understood both pediatric GI issues and autism than we would at a local hospital. Since it was late, Momma Bear stayed at the outlaws to get some sleep, so that she would be rested enough to take over the next morning. The expectation was that the Bear and I would be at the hospital until the wee hours of the morning.
We checked in at midnight, had a quick triage assessment, and then sat in the waiting room. Another girl, probably around 10 or so, was there with her father and kept throwing up into a bed pan. The Bear found this fascinating, and walked over to look at her several times. I explained that the Bear was probably interested in the fact that the girl had the same issue as she did, and the girl and her father were quite good natured about this.
Other than that though the Bear was still sluggish, and was quite content to curl up in my lap and sit. Not sleep. Just quietly sit. Normally she would have taken me by the hand and pulled me around exploring. Not this time. Other than visiting the other girl a few times, we did only a couple of tours of the waiting room and hallways. Eventually we had a second triage assessment (1 AM), in which I was given some pedialyte and an oral syringe (with not much luck giving this to the Bear), and were able to register (about 2 AM). The only commotion of the night was about 15 minutes of tears from the Bear when they put the hospital wrist band on her. Once she calmed down it was back to quiet waiting.
The waiting room was rather full, with people trying to lay flat across groups of chairs. We were able to get two chairs, and I sprawled awkwardly across them with the Bear curled up on me (I would have given her both chairs to sleep, but then I would not have been able to be near her, and I was worried that she would fall off onto the floor). And we waited. Other than people getting called out to register before returning, no one moved until 6:00 AM (when a nurse came around with apple juice). The ER examination rooms were occupied, and the whole system was backed up (an appropriate metaphor).
At 6:30 AM a couple of families moved out into examination rooms, and that left a three chair combination open, which I grabbed, again with the Bear sleeping on top of me. Ah, luxury. By 7:30 AM we were given an examination room, which was cold. But I was at least able to put the Bear on a flat surface and cover her with a sweat shirt.
At 8:00 AM we saw the first doctor, who was ‘new’ as she put it. I gave her the Bear’s history, and then the Bear was thrilled to be woken up, and sat passively (yes, this part is fiction) while she was poked and prodded and had her temperature taken. We finally had to wrestle her down so that the doctor could feel her belly, but with all the wriggling the doctor was unable to feel anything. I mentioned that I had felt a firm spot on Friday, and the doctor said she would consult with her supervisor. The Bear fell asleep again, and when the senior doctor came in he was able to feel her belly without any resistance. Yes, there was a ‘lump’. The doctor indicated that Lansoyl was not going to move it, and we ended up with a prescription for a pediatric dose of the same product that is used to clear intestines prior to a colonoscopy.
By 9:30 AM we were out of there (yes, only 9.5 hours), and went back to my outlaws. We let the Bear sleep while I went to the pharmacy to get the prescription (which turned out to be an ‘over the counter’ medication) and some pedialyte to replace the Bear’s lost fluids and electrolytes. Back at the outlaws it turned out that everyone knew about the meds, including other relatives from out of town who had stayed over. I think my wife and I were the only people in the house who had never had a camera shoved up our … (Does everyone get this? Maybe it’s a Canadian thing). Anyway, everyone loved the product and commented on how well it had worked for them (thanks to all for sharing).
We woke the Bear around noon and gave her the meds and required liquids, and got the potty ready with a big pot underneath. Within about three hours she showed signs of movement, and we put her on the potty. Whoosh. No more blockage, and one very relieved and happy (but tired) Bear. But it still didn’t seem like enough came out.
Of course, that wasn’t the end of things. For the next week we kept waiting – in vain - for some action. We held off giving her Lansoyl for the first couple of days, since it slows absorption, and she had eaten and kept down a lot less food than usual over the earlier period. But by mid week we started again, and the doses kept increasing. Finally, by Saturday morning (day six again) we moved on to lactulose, which the hospital had recommended if Lansoyl wasn’t working. Saturday night we were rewarded. Another dose brought a similar reward on Sunday. Monday and Tuesday’s doses did not pay out (panic rising) and by Wednesday we were wondering if even the lactulose was going to fail us. But Wednesday night saw further success, albeit after a prodding with a suppository. This morning we skipped the lactulose (the doctor indicated that it does not cause dependence, but the label on the bottle disagreed), but will maybe try it every second or third day as (if) required. At least we have another option. And there is always the colon cleaner as a fallback.
Now with this out of the way, all we have to do is get through the adventure of Friday’s MRI (that's another post).
So what was that autism thing again?
On an (hopefully) unrelated note, my site meter indicates that I've recently crossed the ten thousand mark. My biggest readers are probably Google, Yahoo, and Microsoft (i.e. search engines), but to the rest of you who have stopped by, thank you for visiting. I know that 10,000 is a drop in the bucket compared to some blogs, but considering that I'm unaffiliated, I'll take the compliment.
Interestingly, I had more weekly visitors during my nearly four month hiatus while I researched and wrote the 'ASD as a Developmental Disorder’ post than I do now. With a few more posts like this one, maybe next year I'll be celebrating my 11,000th visit.