help please

[Callum1110]

hi

My son has LD and non verbal with CF , epilepsy and has had the IBS been diagnosed with no support

This has been going on for years and there is a current waiting list for an urgent camera which is 2 years wait

I do feel that because he is non verbal that he isn’t considered like any other person would be !!!

Has anyone got any advise for a desperate mother ?

[XDjames]

Bad enough having any one of those things by themselves.

I guess the camera is colonoscopy. That would check for physical indicators, but IBS doesn't show anything so what you might get back is 'nothing to see here, move along' from specialist (who don't really specialis in IBS unless you're very lucky) to dietician etc. Both good if there's nothing to see (nothing sinister) and bad (no help with how to manage IBS).

Last time I saw my GP I was in a state and had to explain by writing in an Apple note on my phone (would that work for him?) and show her, then got to talk, but level of distress should be apparent and there's no reason why medics should take him less seriously, if anything more.

[xjrs]

Sorry to hear that.

I am not sure if this is relevant, but did you see the series hosted by Chris Packham, which showed non verbal autistic people being given a voice, which was very inspiring?:

bbc.co.uk/iplayer/episodes/...

Also are you getting any support from specialist charities. I did a google and found this but there must be others:

nvld.org/

When you say urgent camera, do you mean colonoscopy? Generally colonoscopy is only recommended if the stool and blood tests that come back show inflammation (for example, raised level of calprotectin in stool):

nhs.uk/conditions/irritable...

If your son had any abnormality regarding inflammation markers, this would be considered as needing an urgent colonoscopy. This shouldn't involve a 2 year wait. If your son has raised inflammation markers in blood and/or stool and you have been told there is a 2 year wait for a colonoscopy, then you could make a complaint to PALS. There will be a timeframe that the NHS needs to hit for this to be carried out which should be no more than weeks or months.

If all the tests have come back normal and it is definitely IBS and not anything else, you could try a good probiotic such as Alflorex in the first instance to see if this eases symptoms. IBS can have a gut bacterial imbalance element. If not or this doesn't help enough, you may need a supported visit to a dietitian from referral from your GP. The reason I say that order is that Alflorex may increase tolerance to different foods and you don't want to eliminate any unnecessarily.