Any ideas? Getting concerned

[khamps]

My son is 5.5 and non verbal autistic.

Since about mid December he has suddenly started having bowel movements up to 10 times a day but they are tiny. They are all soft and not pebbly, when it first started he got a pin prick type rash all over his belly but seemed ok in himself so we assumed it was maybe post viral.

Other symptoms include;
bloated belly, but GP said it feels soft
getting in all fours to poop (still in nappies) and really straining for only a bit of soft poop to appear
barely passing gas at all
beltching more than usual, never really heard him burp before
fatigued and low energy with red looking eyelids
all of a sudden struggling to drift off to sleep when normally quick to do this
Frequent weird/bad smelling breath - he does have wobbly teeth and new ones coming in so that may be this, he has the dentist in a week so hopefully they can confirm.

Been to GP a few times and are on movicol and a laxative. He had one larger poop after the first movicol but straight back to smaller ones. Thankfully we have a gastro appointment in a week via private health insurance but feeling very worried.

i guess I’m getting worried he has some kind of partial blockage and will be pushing for an xray but I wondered if anyone had similar with their child?

Has he been tested for coeliac?

Has the GP run stool sample tests? As a basic first line I would expect 2 pots of poo to be tested - one for infections and the other for calprotectin which shows inflammation.

It could be IBD. Mine started a bit like this. But then it could be many other things. Stool samples would rule out a lot.

@lollylohe was tested for coeliac about a year ago and was all clear. He has also been dairy free since about 8 weeks old.

thanks so much and no he hasn’t, I will ring first thing this morning to get the pots! that way we might have the results before his specialist appointment.

Slight update
ultrasound noted nothing too concerning although the technician did say there was a lot of gas, we are also waiting for the stool sample and blood test results. Dr mentioned the obvious constipation but also coeliac and has done some tests that could indicate crohns/IBD.
Movicol and laxative don’t seem to be doing an awful lot and he is still going anywhere from 5-10+ times a day and is very fatigued and baggy eyed.
has anyone had a child diagnosed with Coeliac/IBD at 5? If so, it would be so helpful to hear symptoms. We don’t have any growth issues as he is 122cm and pretty stocky, which has never really made me consider these things, although he has had a bloated pot belly since about 1 year old!

Update bump
stool sample (the inflammation one) came back all clear and all blood tests were perfect.
we are still having the same issues, he is super bloated and his bowel movements are not normal at all. If we don’t give him the laxative it’s almost like his bowel has just completely stopped working, but the laxatives and movicol are making his poops like glue and making his bottom so sore.
it sounds crazy but we were almost disappointed it wasn’t something like gluten allergy as at least then there would be a clear plan of action to help him.
we have results from his xray on Monday but I’m not hopeful anymore it will tell us anything and I’m worried we will just be left to it.
any advice/experiences would be welcomed.

Maybe ask for a full pannel of allergy tests. Also can you go down to jusy movicol and maybe the two combined are not helping things.

Op, my son is now in his mid 30’s and has the constitution of a horse despite his severe autism and other diagnosis but I just wanted to say I’ve read your post and I hope you get to the bottom of your sins problem soon.

Have you tried to find an autism specific forum in FB for eg where you may come across other parents in your situation.

sorry - my friend who’s daughter is in the spectrum gives her daughter digestive enzymes as well as probiotics for her gut issues. You could find out more by googling.

regards

Just did a google

There is a big mention of ‘the gut brain axis’ in autism if you do a google and I think it could be worth a read. I seem to remember this first being spoken about 30 years ago and it seems to have stood the test of time as a problem our children can have.

Then there is this kind of thing which I think would help you with understanding other things.

https://autism.org/nutrition-gut-brain-connection/

@Morechocmorechocthats a god idea, I will mention this at his follow up tomorrow.
Funnily it seems to be the movicol causing more issues but we have tried just movicol and just laxative and it really needs both to keep things moving.

@Jellybelly80thanks for sharing, I will have a good read. He has been taking probiotics for years now and they did clear up his toddler diarrhoea amazingly well, we will explore everything else though. He was on magnesium but we stopped it as he started that just after his issues started and I was worried it was making it worse.

Incase anyone comes across this in the future, the cause of the issues is that my son has something called megacolon, he isn’t impacted but is very backed up and the end of the colon is very stretched. We have a plan which is a mixture of laxatives, movicol and starting to potty train (he is 5.5 but non verbal and severely autistic). He had been making a bit of progress with wees on toilet over the past year so we just need to kick things up a gear and try and get him fully out of nappies. Keeping everything crossed this works and if anyone has any tips of toilet training a non verbal child please do share!

@khamps hi there, my son was non verbal until he was about 8 and a half but we managed to toilet train him when he was about 5.

i wish I could say there was a magic formula but there wasn’t and what worked for us was taking him to the toilet every 15 minutes and crossing our fingers something would happen so he could then get the idea of going to the loo. It took a while and everyone in the house, he’s the youngest of 5, was in on it. We even had a comfy chair in there so that whoever had taken him was comfy and if he wanted to sit there for a while he could without people becoming impatient. And I’m sorry if I’ve made it sound easy, it wasn’t, and what went in our favour was that I never sent him to school so we could take as long as we wanted to build up his life skills. I know I’m fortunate that I was able to stay at home with him and one thing that used to work for us really well was deciding in an August what the goals were for the next year - just the way all kids are set goals to achieve at school. It meant that I wasn’t thinking to myself “oh we’ve been doing this for a couple of months now and it’s not working so it will probably never work”. I just used to tell myself - see how things are next August. Oh and about being non verbal - when my son did start to speak it fast became very obvious that he’d been soaking up information like a sponge and he certainly was at the level of having finished preschool. He can even read and write and do arithmetic based on the kindergarten kind of education I’d been doing with him over the years. I had no idea what was in him till he spoke and I’d put money on your son having a wealth of knowledge tucked away in his brain that he’ll surprise you with one day.

Could you maybe adapt what we did for toilet training even at the weekend?

and just to say I’ve read your latest posts.

Your doing great 💐

@Jellybelly80 aw thank you so much! So interesting you say about goals as we kind of do that too, just building up and focusing on specific things. Last years was learning to copy which he has picked up so well now and has made such a difference with learning!
yes your method of potty training sounds like the approach we will take, he got the hang of wees over the summer with no bottoms on but we parked it a bit over winter but we will pick it up again now and really run with it.
thanks so much for the support and encouragement!