Current
The pain Josh has experienced episodically all his life has been pretty much constant, at times agonising, since January.
Over the years countless investigations have been performed, all of which have proved negative leading us to believe that this is functional in origin.
We have introduced Pregabilin aiming to help his pain and anxiety.
It seems likely that the underlying problem is genetic which has lead to cytokine release causing pain around bowel and bladder function. In addition it leads to a reduced amount of folic acid to his brain leading to hyper-sensitivity to painful stimuli.
We are awaiting a consultation with a geneticist called Dr Dan Purser. I recommend his book, “The 85% solution” available from amazon.
17/08/2025
Following the advice of Dr Purser, 7 days ago Josh had literally a touch of Glutaryl Glutathione (GG) on the skin of his bald head. Simultaneously, or so it seemed, he had a recurrence of pain and agitation which has persisted and led to meltdowns. The big question is whether his current distress is due to detox from GG or coincidental. Either way, it seems sensible to wait until he is more settled before giving him a further dose.
There is never a good time to try a new therapy:
If Josh is feeling good we don’t want to challenge him, and if he is struggling we don’t want to make it worse!
24/08/2025
Josh’s situation has been delicate all week and it has taken micromanagement to enable him to cope. The current challenge focuses on the stress he experiences whenever he needs to use the toilet. His anticipation of failed attempts and the associated pain is a major hurdle but he is enduring with the focussed help of his support team and judicious use of medication. We have not thought it wise to try GG again YET.
31/08/2025
Still not ready to use GG but there have been wonderful interludes of interactions and respite evoked by specific music. The discomfort was still evident but the music somehow makes it much more manageable. We are investigating how to harness the therapeutic power of tunes.
This book may further our quest : Music as Medicine. In it Daniel Levitin makes reference to the following remarkable video.
07/09/2025
Josh had a few amazingly happy and comfortable days this week… we have no idea why! It gave us the opportunity to give him a tiny amount of GG. Following this he has had abdominal pain and diarrhea which may be due to detox. We are waiting until he feels better before giving him more treatment.
15/09/2025
Josh has had a very difficult few days because of pain. Ironically, this may well be related to an increase in his analgesics which can cause constipation. We decided to go ahead with the GG anyway because it is the only option we have at hand which rationally should help his suffering. It has to be said that many things which logically should have helped haven’t in the past.
05/10/2025
Pain, pain and pain. He has been pacing around in his room most of the time. No further application of the GG has been given. We hope to consult again with Dr Purser and also seek the opinion of a new urologist to try and ensure that no remedial cause has been overlooked.
12/10/2025
It seems that constipation plays a very big part in Josh’s challenge. I remember many years ago when he had a bowel clearance under general anesthesia he was dramatically better – he was happy, comfortable and did not exhibit any symptoms of autism other than his inability to communicate verbally. It is also well recognised that patience with dementia are much improved once their constipation has been remedied. Imaging over the years has always found Joshua to have a loaded bowel with a loop drooping into his pelvis which might well impact on his bladder. With all this in mind, we have endeavoured to use laxatives to ease the situation, thankfully with good effect. We were able to restart using GG – so far, so good.
19/10/2025
For the last 3 days Josh has pain and is telling everybody to get lost. I find if I sing very quietly, barely a whisper he joins in with the last word of each line and this seems too “melt” him. As is often the case underlying gut pain seems to be the issue. He has had GG once this week.
26/10/2025
The challenge continues intermittently. However, we were able to give him GG once which thankfully he tolerated well. Josh continues to spend most of is time in his room, sometimes seeking company but often not.
03/11/2025
Joshua shows remarkable forbearance in the face of challenge when experiencing the commonplace activities we take for granted, namely relieving ourselves on the toilet. Sometimes he finds the struggle overwhelming. So it has been for much of the past week. It appears that the only practical way to tackle his pain is with GG even though he is super sensitive and it brings with it the risk of detox and subsequent distress. So we need to wait for a window of opportunity to present itself enabling us to use it again.
10/11/2025
More of the same! After consultation with a homeopath in France we are endeavouring to get his prescription dispensed by a pharmacy in Germany because it is unavailable elsewhere.
31/05/2026
6 months have passed and Josh’s situation is still challenging. We never did get the homeopathic remedy. He is having Glutaryl, 2 sprays twice a day and Buspirone has been introduced which we hope may ease his anxiety. He is undoubtedly a hero. Almost all his time is spent in his bedroom despite our attempts to persuade him otherwise, but he enjoys his friends and family. The picture below shows him in the company of Marilyn Monroe, they seem to be getting along very well! Now summer is here, we plan family gatherings in the garden with a BBQ and a bouncing castle. Meanwhile, the ‘Thursday guys’ meet at the bungalow wherever feasible for good food and company.
31/05/2026
Josh has been driven to meltdowns by his extreme challenge but despite the situation, he was very happy when Hudi, (on Josh’s right), visited to wish him a happy birthday. We hope to be able to have a proper celebration in the coming week.
05/07/2026
The birthday celebration came to pass, see above. Note: Josh is hugging pillow and eating cucumbers both a sure sign of stress.
We have learned from experience that sensory challenge is the flip side of pain but only recently have stumbled across the follwing explanation:
“In autism, pain may be expressed as sensory dysfunction because pain is processed within the same sensory and interoceptive networks that are already atypical. The person may not be able to identify or communicate the site and nature of the pain, so internal discomfort is expressed through sensory overload, intolerance of touch or clothing, agitation, repetitive movement, self-injury, or withdrawal. This should not be interpreted as purely behavioural; it may represent pain that is amplified, poorly localised, or communicated non-verbally.”
26/07/2026
A comfortable week was followed by one of challenge with sensory overload which prevented sleep. Josh has slept 19.25 hours in the last seven days. I read that “The transition from wakefulness to sleep requires the sensory system to essentially stand down. In severe sensory hypersensitivity that hand-over doesn’t happen — every sensation (internal or external) keeps pulling him back. It’s not anxiety in the conventional sense — it’s his sensory gating failing at the critical moment.” His internal discomfort was accentuated by constipation. It has been tough for him and he has been unable to access the tools which usually help —music and hot tub. Analgesics and sedatives do not help. It is primarily a management issue. Intensive interaction, calm atmosphere and gentle laxative have been beneficial.