We know that many children with autism/ASD suffer from bowel problems. The research is there, the data collected. This post draws on personal experience to get to the guts of the matter. It tells the story of a fruitless quest for treatment from the Chelsea and Westminster NHS Trust in London between 2008 and 2010. Laxatives and surgery were the only options in the medical toolkit and this remains true today. It is a disgrace.
Thanks for sharing your story,, Jane. This sadly is the state of health-"care" in the West today. We have the same issues here in Amerika, Inc., but no OBEs to hand out to compliant healthcare workers - just stock options and board seats in the managing corporations, occasional bonuses, and academic or political appointments, for the most corrupt. Thank your for your voice and for being a warrior mom.
Jane, thanks for this article. Unfortunately, what you describe is all too common. The scientific journal literature makes it clear that GI problems are common in people with autism. And it's very difficult to find effective treatments. Tim Buie et al made an effort to help with their article in 2010. https://pubmed.ncbi.nlm.nih.gov/20048083/ . But the reality of medical care for people with combined autism and GI issues now is not dramatically better than what it was in the early 2000s. It could be better if more funding were directed towards research into it and the resulting medical journal articles. And, as you've found, doctors generally get their advice from the big medical journals.
I find it an odd coincidence that the Guardian article you pointed to suggests that the rapid increase in hospital diagnoses of constipation in children may be due to "awareness." The reasoning in that article does not appear to make sense. It reminds us of the widespread claim that the huge increase in the rate of occurrence of autism itself is due to "awareness," despite the complete lack of valid evidence supporting that opinion.
Very interesting. V common. Some ASD children may have problems with constipation partly because (to put it simply) they seem to feel, hear, taste at a higher intensity. Evacuating is painful for them, and they avoid it. Milk is certainly an issue for quite a few. These problems seem unimportant to GPs, but the cascade effects are many, reducing appetite, restricting foods. And these are the easier cases.
I am sorry your son and you had to go through this. Congratulations on fighting and finding a solution.
This is just shocking. Every post you write leaves me speechless and in awe of the lengths you went to find solutions. I’m distraught that you and your son were so desperately failed by ‘the system’. All you say makes such sense and explains what’s going on with a couple of children in my life and many others not so closely connected. It’s hard. 😢
This all rings very true and brings back memories. This COVID era has revealed, for the world to see, that official medical guidance is unconscionably flawed. Doctors have a choice: the ethical ones will be on alert for and question flawed official guidance, instead of mindlessly, and maybe even callously, recommending it to their patients. To do otherwise is a betrayal of patients, allowing them to be thrown to the wolves (harmful official guidance, by obviously corrupt players who are willing to let our kids suffer and die).
In case this helps: our experience with toddler age constipation reflected 100% that it was NOT a lack of fiber. What ended up resolving it was a stint with the Specific Carbohydrate Diet with a vitamin B Complex. Adding in a little extra vitamin B-1 was key.
We found the SCD good too. It's still a work in progress though. There are still signs of inflammation and dysbiosis in the gut. Hope your child had a more permanent improvement in the bowel.
Yes, thank goodness, that got resolved. What a nightmare for all these kids. Some gastroenterologists are noticing how many kids are so pathologically constipated. One gastro receptionist joked that Miralax should just be added to public drinking water because the problem has become so common.
excellent review of the topic, Jane. sad that you had to learn it all first hand. some of our kids' suffering and the way they are ignored my allopathic medicine, is beyond deplorable.
Thanks for sharing your story,, Jane. This sadly is the state of health-"care" in the West today. We have the same issues here in Amerika, Inc., but no OBEs to hand out to compliant healthcare workers - just stock options and board seats in the managing corporations, occasional bonuses, and academic or political appointments, for the most corrupt. Thank your for your voice and for being a warrior mom.
Jane, thanks for this article. Unfortunately, what you describe is all too common. The scientific journal literature makes it clear that GI problems are common in people with autism. And it's very difficult to find effective treatments. Tim Buie et al made an effort to help with their article in 2010. https://pubmed.ncbi.nlm.nih.gov/20048083/ . But the reality of medical care for people with combined autism and GI issues now is not dramatically better than what it was in the early 2000s. It could be better if more funding were directed towards research into it and the resulting medical journal articles. And, as you've found, doctors generally get their advice from the big medical journals.
I find it an odd coincidence that the Guardian article you pointed to suggests that the rapid increase in hospital diagnoses of constipation in children may be due to "awareness." The reasoning in that article does not appear to make sense. It reminds us of the widespread claim that the huge increase in the rate of occurrence of autism itself is due to "awareness," despite the complete lack of valid evidence supporting that opinion.
Very interesting. V common. Some ASD children may have problems with constipation partly because (to put it simply) they seem to feel, hear, taste at a higher intensity. Evacuating is painful for them, and they avoid it. Milk is certainly an issue for quite a few. These problems seem unimportant to GPs, but the cascade effects are many, reducing appetite, restricting foods. And these are the easier cases.
I am sorry your son and you had to go through this. Congratulations on fighting and finding a solution.
This is just shocking. Every post you write leaves me speechless and in awe of the lengths you went to find solutions. I’m distraught that you and your son were so desperately failed by ‘the system’. All you say makes such sense and explains what’s going on with a couple of children in my life and many others not so closely connected. It’s hard. 😢
This all rings very true and brings back memories. This COVID era has revealed, for the world to see, that official medical guidance is unconscionably flawed. Doctors have a choice: the ethical ones will be on alert for and question flawed official guidance, instead of mindlessly, and maybe even callously, recommending it to their patients. To do otherwise is a betrayal of patients, allowing them to be thrown to the wolves (harmful official guidance, by obviously corrupt players who are willing to let our kids suffer and die).
In case this helps: our experience with toddler age constipation reflected 100% that it was NOT a lack of fiber. What ended up resolving it was a stint with the Specific Carbohydrate Diet with a vitamin B Complex. Adding in a little extra vitamin B-1 was key.
We found the SCD good too. It's still a work in progress though. There are still signs of inflammation and dysbiosis in the gut. Hope your child had a more permanent improvement in the bowel.
Yes, thank goodness, that got resolved. What a nightmare for all these kids. Some gastroenterologists are noticing how many kids are so pathologically constipated. One gastro receptionist joked that Miralax should just be added to public drinking water because the problem has become so common.
excellent review of the topic, Jane. sad that you had to learn it all first hand. some of our kids' suffering and the way they are ignored my allopathic medicine, is beyond deplorable.
(sharing this in my biomed group)