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Baclofen Do you have experience of alternatives please?
TonyH
Member Posts: 10 Listener
Hi
If anyone can refer me to a previous discussion please do or suggest where to try, that would be great.
(The original aims of this charity covered my Uncle's position). Thanks
I noticed my uncle repeatedly return to his old self on admission to hospital, despite needing hospitalisation. I found the hospital back then took two days (at least) to put him back on his standard medication. A real blessing! Narrowing the problem down to Baclofen, his helpful GP happy reduced the dose and once the benefits faded reduced the dose again and again etc. To 2.5ml, three times a day, The difference was brilliant except keeping the carers dosing at this level has been a major headache, although until a month ago not this year.
Boxes of Co-Codamol on PRN (patient Request Needed) by the why usually simply pile up, until the GP surgery respond and remove a load.
What I find is his short term and medium term memory 'appears' to be lost, getting the dose as prescribed or previously reduced and he's back again and his usual excellent company, I say appears as even when he can't recall his question has been answered 20 times in a short time he has demonstrated priming by others from various responses over the years. This is 'not' a criticism he's been bed bound for years and having seen him fight for life in hospital, he loves life (does get down at times, don't we all) and has become totally dependant on his carers over the years and without them he could not manage. He's on the coast, I'm London based and down there usually between one and two times a week.
That's the back ground, I was probably best alerted to the problem by a variety of unwanted effects on myself of eye medication. His helpful GP advises there is no alternative to Baclofen and just looking through the web does not appeal to me
Guidance, constructive suggestions where to try next even and your time all greatly appreciated
Many thanks!!
(I'm getting worn down, ta)
If anyone can refer me to a previous discussion please do or suggest where to try, that would be great.
(The original aims of this charity covered my Uncle's position). Thanks
I noticed my uncle repeatedly return to his old self on admission to hospital, despite needing hospitalisation. I found the hospital back then took two days (at least) to put him back on his standard medication. A real blessing! Narrowing the problem down to Baclofen, his helpful GP happy reduced the dose and once the benefits faded reduced the dose again and again etc. To 2.5ml, three times a day, The difference was brilliant except keeping the carers dosing at this level has been a major headache, although until a month ago not this year.
Boxes of Co-Codamol on PRN (patient Request Needed) by the why usually simply pile up, until the GP surgery respond and remove a load.
What I find is his short term and medium term memory 'appears' to be lost, getting the dose as prescribed or previously reduced and he's back again and his usual excellent company, I say appears as even when he can't recall his question has been answered 20 times in a short time he has demonstrated priming by others from various responses over the years. This is 'not' a criticism he's been bed bound for years and having seen him fight for life in hospital, he loves life (does get down at times, don't we all) and has become totally dependant on his carers over the years and without them he could not manage. He's on the coast, I'm London based and down there usually between one and two times a week.
That's the back ground, I was probably best alerted to the problem by a variety of unwanted effects on myself of eye medication. His helpful GP advises there is no alternative to Baclofen and just looking through the web does not appeal to me
Guidance, constructive suggestions where to try next even and your time all greatly appreciated
Many thanks!!
(I'm getting worn down, ta)
Tagged:
Replies
My Uncle was 90 last year & with his Baclofen dose level so low my automatic reaction is to steer away from Botox, noting the present problem may still be administration, as in being given more than prescribed
Good to meet you virtually.
There are alternatives to Baclofen but as I'm sure that you are aware all medication has side effects. Two alternatives that I know of are Tizanidine and Sativex. You can discuss these with your Uncle's G.P. I agree that mis-administered medication might be contributing to your relative's memory loss but there might be other issues at play here that need to be investigated.
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Specialist Information Officer - Cerebral Palsy
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Thanks
Still reading what Search throws up.
The GP is great but only believes Baclofen exists for CP so plan to keep reading to give as rounded a commentary to him as possible.
In case it helps:
To follow a link that 's given in text or wherever:
Highlight the link (in the text recommending the link)
Then press the keys
Control + C
( press the 'Ctrl' keyboard key plus the letter 'C' key, as you say to copy highlighted text)
Then:
Control + T (to open a new tab)
Then:
Control + V
Then press:
Enter (press Enter keyboard key to go to the link - if the link is still operational, old ones may not be)
Or yes, just copy and paste into a new tab and press enter
Well on this old Linux box I'm using
I typed up my notes so far tonight. I had in mind posting them for criticism before approaching the GP again, also hoping they might be of some use and an indication to what can be found using Search. But even with an abrupt style and brief introduction (to try and give some relevance) I found my self on page three and I've loads more to read it looks. So in this case I hear you and it looks like the notes will be a better copy of my handwritten scrawl only.
Peppermint
I was surprised to find on it's home page there was a new release in October 2020 as at Distrowatch.com ( https://distrowatch.com/table.php?distribution=peppermint ). It appears to list tonight that the last release was in 2019. I'm not familiar with Peppermint OS and steer away from web based applications. Hope it works well for you.
Times, they are a changing, but Apache (Linux) is what the web used to run on.....
Linux
You'll soon exhaust my knowledge I'm sure, I've done little but use Linux on old kit but if your thinking of starting a new thread on Linux, Peppermint copy me in
Private Message
The Search Function on this forum is a valuable tool, many thanks for prompting it's restart after @chiarieds kindly approached you.
The Helpline has long shut tonight and I'm quite capable of missing it's open hours for more than a few days. I'm also wondering if a detailed CP inquiry would be redirected to you?
Seeing to start a PM I need have made 25 posts I realise I should have kept chatting Linux to @chiarieds. Sorry @chiarieds !! Really Sorry!! I was just trying keep the thread to Baclofen and alternatives and open up the Linux chat to others, (even more than I have on the phone this afternoon)
It's possible the surgery my uncle underwent was SDR
https://www.scope.org.uk/advice-and-support/selective-dorsal-rhizotomy/?_ga=2.169840673.1498452896.1611075947-1788777485.1611075947
or something similar, I appreciate your stating this is not something you are personally familiar with. The nearest Regional Centre is GOSH. https://www.gosh.nhs.uk/health-professionals/clinical-specialties/neurodisability-information-health-professionals/clinics-and-services/selective-dorsal-rhizotomy-service
Can I ask questions and provide detail directly please?
By responding to your invitation. I would hope after editing they could be reused in the forum, once I have discussed this with my Uncle.
One question would be.
Is it possible to arrange for someone preferably with personal experience of CP to visit a home bound elderly man with CP, my uncle, in the Thames corridor area?
His local DNs are simply great, the team Leader special, his GP great and more that's area specific and I'm repeatedly reading things where an experienced eye might say more than it's simply too late, again
Thanks
It is very possible that your uncle has had surgeries during his life. SDR is fairly new but he may have had a forerunner of the procedure as I have.
Scope would not be able to provide visits to your uncle's home, unfortunately. I would suggest that you ask the G.P. to refer your uncle to UCLH Adult CP Team where he can be assessed and supported by a multi-disciplinary team.
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