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.
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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.
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10 comments:
At the risk of sounding like part of the amelioration crowd... ;)
Have you had her tested for allergies, or maybe this part of talking to the GI specialist? We recently did so and were surprised at what came up. Although my son didn't really have stomach or loose BM problems, he definitely had "the bricks" and these have definitely gone away with the change in diet.
Hi Steve,
Thanks for stopping by. We have had the Bear tested for some allergies (she triggered for blueberries, among other foods), but we haven't done a comprehensive allergy test yet. It is on the list.
It has only been fairly recently (last three to four months) that she has had the bricks. Prior to that she had the opposite problem. She was showing improvement, with more and more well formed stools, but then tipped over into bricks and mortar. She has always had low motility (which presumably should lead to harder stools), but perhaps the diarrhea was masking the effects of this.
There have been no significant changes in her diet during this period other than a modest addition of more fruit (she eats bananas, peaches, strawberries and kiwi) as these items became more available due to seasonality.
She has always had GI issues. The only change has been more variation in the types of issues encountered.
oh my! poor bear! and poor bear's parents! such an ordeal! i was at the edge of my seat, wincing and rooting and wincing again. i hope they put you on the top of the poop problem list. truly.
Hi Joseph and Kyra,
October 10th (the next appt) is a long way away at this point.
I'll definitely look into IBS. The Bear had issues again over the last couple of days, although not quite as bad as the weekend described above. We have to fix this ASAP. As parents it kills us to watch. But the real suffering is that endured by the Bear.
I agree with Joseph's comment about stress. My son also had some problems with "bricks" when he was younger, at a time when he was stressed from changing schools. His digestion improved noticeably after a few sessions with a hypnotherapist, who was very helpful in teaching him how to relax and meditate.
Another possible cause could be lactose intolerance. Have you tried giving the Bear lactase enzyme tablets with dairy foods, or Lactaid milk, which has the enzymes already added? That might be worth trying to see if it helps.
As a baby, Charlie did not go for at least 10 days once (I cannot remember exactly). Prune juice did the trick but it was a rather agonizing period. At a later point, it was discovered that Charlie has celiac disease.
Among the ancient Greeks, one word for "soul" and also "mind" and "brain" is thumos.
And where is the thumos located?
Not in the head. In the stomach.
I think it's more like, people have questioned the idea that bowel/digestive problems are autism, or cause autism, rather than what you've portrayed it as.
For instance, it's likely (in my case) that what caused me to be autistic, also caused bowel problems and reflux. Where I have a problem, is when people refer to treating the bowel problems and reflux as "treating autism," or when they refer to bowel problems or reflux as "causing autism". Of course, that same thing probably gave me small feet, and I haven't heard anyone claiming that small feet cause autism yet. That's the problem with equating correlation and causation.
Similarly, I have an online friend with VATER syndrome, which appears to almost always cause autism (which is usually explained as "developmental delays," but she says those "delays" usually follow a peculiarly autistic pattern), and also causes much more severe digestive issues than either your daughter or I will probably ever have to contend with: She was born, IIRC, with parts of her respiratory and reproductive systems fused to parts of her digestive system. She required multiple surgeries to live through childhood. And, those aren't autism treatment either, even though, again, there's a correlation (but again, the correlation is that the two things are caused by something else entirely -- in that case, apparently the failed reabsorption of a twin is one of the latest theories, whereas in other cases there's something genetic going on, or something). I doubt she considers her cecostomy button an autism treatment either.
At any rate, all the confusion over so-called comorbidities aside, I sympathize with your daughter: That can get really painful. (I've had to have poop dug out of my butt manually before, after several suppositories and enemas failed.)
And, for what it's worth, stress doesn't seem to have much impact (pardon the pun) on my level of constipation at any given time. Nor do exercise, fiber intake, water intake, or most of the other things that have been tried other than stool softeners. (In fact, at times the more fiber I eat it seems like the more constipated I get, for whatever reason.) But those are all good things to try, in case they actually work.
Hi All (writes the late responding Ian),
The Bear is already GFCF (it runs in the family for both G and C issues - I was lactose intolerant as a baby, but not today), but we also give her enzymes with meals (not snacks). She gets plenty of fiber (including red lentils), but she doesn't like to drink water. We give her rice milk, but have taken to watering it down to increase the water content and reduce the calcium (which I understand can be binding?). She could probably do with more exercise (couldn't we all), but her current level is probably adequate.
I'm not sure about stress, in that she appears to be one of the happiest people I know (far happier than her Dad). I know the two are not exactly the same thing, but her level of happiness does not suggest any particular angst.
Amanda, I find your statement "For instance, it's likely (in my case) that what caused me to be autistic, also caused bowel problems and reflux" interesting. I'm not sure if I agree or disagree (I'll explore this in what will probably be my next post, after the minicolumn post). I would suggest that if Dr. Casanova is correct regarding minicolumns, then at least the precondition for autism (narrower width minicolumns) is not 'caused' by any GI issues, and would not be 'cured' by 'fixing' GI issues either. But I do think that there is a definite link between the GI tract and brain, and would be very interested in discussing it in the upcoming post.
I am not sure you fully understand what I meant.
The condition I'm discussing (which I have not named, for privacy reasons) is not hypothetical in nature (not a "what if these were both caused by..." but rather a "these are both caused by..." situation), and does not only involve the digestive system and the brain, but can affect other internal organs, nerves (both central and peripheral), bones, hair, skin, and face. The only hypothetical is whether it applies to me (I am a borderline case and genetic tests are both prohibitively expensive and only 50% reliable) and it would be a stunning set of coincidences, and possibly point to a closely related condition, if it didn't. It's something a lot more specific than just "GI issues and autism in one package", and I meet too many of the specifics to have escaped strong suspicions.
There are plenty of conditions that are similar in the systems they affect, but do not have any increased incidence of autism. This one does have increased incidence of autism, as do a few others. An estimated 40% of autistic kids could have conditions like this, undiagnosed. Possibly far more.
At any rate, what I'm saying is, it's already known that some conditions affect both the GI tract and the brain. (Moreover, just because someone has increased GI issues in these conditions, does not necessarily mean they're going to have increased brain issues. They talk about different levels of "involvement" for each system, a person can have high "GI involvement" and low "brain involvement" or vice versa.) So, it's quite possible that many people are mistakenly equating that kind of correlation with causation, given that that kind of correlation already has been shown in some instances to have one cause for two separate things.
"I am not sure you fully understand what I meant."
You're right, I thought you were writing in more general terms rather than referring to a specific condition.
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