Published on 12, July, 2020
Hi,
My four year old suffers with chronic constipation- 1 unbelievable sized poop about every four days (diet is amazing, lots of veg ect and take probiotics). Happy boy, wore clothes, went to nursery. He was started on high dose laxido 6+1 for everyday he didn't poop. The laxido turned the poop liquid but it still was not coming out and required urgent acute admissions for enemas (now doing these at home). My son was in extreme pain daily, I mean like a wild animal and biting his arm black and blue- relieved instantly by enema. We have stopped laxido and are now on lactulose and senna. Again nothing for four days and then pain and he requires an enema. The Drs diagnosis is autism- is is autism that's causing the slow motility and a sensory over reaction to the sensation as an explanation for the pain. I feel like I have been to war the last few months and am desperate for help and all I'm getting is autism and no investigations or tests?!?!? I feel that if any child had 21 sachets of laxido in there gut festering for three/four days they would also be in agonizing pain but would get investigations done. Anybody experienced anything similar?
Oh no that doesn’t sound good. Sorry to hear you’re struggling with these issues with your son. It must be really hard for you. I am aware that autistic individuals tend to really struggle with constipation and pain and other gastrointestinal issues. Can I make you aware of the fact that you’re not alone and all of us autistic people deal with the same issues. There is no easy answers but maybe you should go back to your sons health professional and seek more advice and or help. They should be able to answer all your concerns and guide you in the best possible way. I wish you and your son all the best of luck and good fortune. Take care.
Autistic people are also more likely to carry the gene that causes Hirschsprung's disease and other neuropathic disorders of the digestive system. There is a lack of nerve cells in the intestine and as a result the intestine does not transport the excretions. Research into this is being carried out at the University of Heidelberg. I have autism and a malformation of the nerves in my intestines. Maybe you can ask a pediatrician about Hirschprung's disease or desmosis or dysganglionosis? These are the names of the diseases in question.
And now they do banana flavored weeteabix!
I found that 2 weetabix taken several times a week cured the constipation that I'd been suffering for several years ever since I stopped eating them regularly a few years ago...
If I stop eating them, it comes back. I don't know if that's useful information, to anyone else, but it took me an embarrassingly long time to make the connection.
Prior to my changing my diet to exclude weetabix (change of circumstances lifestyle) constipation was something I simply did not understand that meant people spent an inexplicably long time in the toilet. When it finally came to me, I put it down to advancing age, but thankfully it's now once again an "other peoples problem", and not mine.
Bowel issues are very common with autism- unfortunately there’s often not a huge amount to be done aside from a blanket ‘reduce stress’ (hard if it’s a constant, underlying thing) and ‘pay attention to diet’ (which it sounds like you’re doing). Was he struggling with pain pre-laxido? I just ask because I used to be like this (*marginally* more regular with age) but the day to day constipation didn’t actually cause any issues/pain for me at least (w/o laxatives). If he’s still in nursery, can you withdraw for a couple of weeks? Being away from home was always problematic in my case.
I've had fast motility since childhood, to the extent that it can be a battle to get enough calories to survive, and to manage the condition well enough to be able to leave the house. A strict elimination and reintroduction diet confirmed it's not a specific allergy. All my autistic family members are the same, while the neurotypicals are unaffected. Research has shown that autistic people often have an excess of serotonin, which can increase gut motility.
I don't have any first hand knowledge of this issue but a little browsing shows it is indeed related to autism:
https://www.thinkingautism.org.uk/taking-action/resources-and-publications/constipation-in-autism/
There are quite a lot of potential contributing factors but nothing I think a non-specialist would be able to offer sensible advice on.
My recommendation is to insist on your GP getting a referral to a specialist as it is now a long running issue. Refuse to leave without a referral as this is not an issue to be left untreated.
In the meantime I would also recommend keeping a detailed food and drink (and medicine) diary to present to the specialist so they can see when and how much is ingested in case it is down to allergies or intolerances.
Also think back to when this first presented and work out if there were any changes about this time which could contribute. In the event it is him conciously holding it in for some reason (sometimes the fear of the pain may be enough) then it may be a change in diet is advised to increase fiber intake - but speak to the specialist rather than consider the advice of a random person on the internet.
Good luck.