Extreme tiredness with no apparent cause

[TeresaTT]

My 26 year old son has a profound learning disability and autism. He is non verbal with limited understanding and has lived in a lovely residential care home for a number of years. Since the beginning of the year he has become very tired and lethargic, often not leaving his room at all. Staff are having to spoon feed him in his room. He spends most of his time withdrawn and with his fingers in his ears. Occasionally he has a good day and will walk around the house and garden, vocalising happily.

Staff and myself are very worried about him. He used to be so happy, affectionate and lively. We used to have to stop him stealing food and eating too much, but he's losing weight now.

He's had a broad range of blood tests which show a high level of prolactin, probably caused by his risperidone medication. The dosage has been reduced and his prolactin level has reduced slightly. However, this is probably not causing his lethargy. The rest of his blood tests are normal. From his behaviour I think he might be in discomfort or pain but he can't communicate what he is feeling.

His GP and psychiatrist don't seem to be trying much else to investigate the cause. What else can be done to try to diagnose the cause of this huge change in his behaviour? I'm so worried about him and the thought he might be in constant pain.

[Bluey203]

Hi TeresaTT, so sorry to hear about your sons suffering, it must be extremely worrying.I also have a son with autism and severe learning disability nonverbal age 21.

It is so difficult to work out their problem when there is a change in behaviour.

We only discovered when he was 19 through keeping a daily diary on everything from food eaten, activities, mood and when did a poo (including amount and form) that my sons problem was chronic constipation.

Even now if he hasn't been for 3 to 4 days he will become subdued, inactive, stop eating and none of his usual happy vocals, normally he is pacing about. Once he's emptied his bowels he will be eating everything again and full of energy.

My son is on a daily laxative now ( docusate and dulcosoft), if he hasn't been for quite a few days I give him a senna at night to help things along.

If your son doesn't go poo regularly, he may have a backlog, and need help to move things along, I know some who need to go hospital once a month to clear the backlog.

Hope you find answers soon.

[TeresaTT in reply to Bluey203]

Thank you for your reply. I'm glad that you managed to find the cause of your son's change in behaviour. Constipation has been a problem in the past for my son, but his bowl movements don't seem to be a problem currently.

I'm wondering if he might be depressed. He's under a psychiatrist but all he's suggested is a health check which my son had a couple of months ago which is well after his change in behaviour started and didn't show any physical problems. I've contacted the Learning Disability Team for advice.

[TeresaTT]

The LD Team have been very helpful. They spoke to the psychiatrist and arranged for the GP to call me. He will refer my son for head, chest and body scans under sedation. Hopefully the wait won't be too long.

[Bluey203 in reply to TeresaTT]

That's fantastic news, hopefully will give some answers 🤞

[DSSmith]

The person I care for had a period of tiredness, not as extreme as you are describing though.

This might sound trivial, but a water (bladder) infection was the cause. After antibiotics they were back to normal.

I just thought I'd let you know in case it is of any help.

[TeresaTT in reply to DSSmith]

Thank you, but they thought had this might be a cause and he had antibiotics with no effect. He's since had blood and urine tests which are normal. We'll just have to wait for the CT scans now.