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Baclofen

hjrhjr Member Posts: 2
edited May 2014 in Parents and carers
I work as an independent advocate and my role is to share the wishes and views of the young people I work with. I also gain information on their behalf.

I am currently advocating on behalf of a young man who is 16 and is in care, living with foster carers.

He has severe spasticity and has until recently received oral baclofen to alleviate the pain he gets. However because the baclofen dosage has been gradually administered to a high level, alternative treatments are being considered that includes the baclofen intrathecal therapy (baclofen pump). He is currently being given gabapentin as an alternative form of treatment.

The young man is unable to communicate his views on the matter and lacks the capacity to understand the issue due to his learning disability.

The GPs and consultants involved review his treatment on a regular basis and have also shared the advantages and disadvantages of the baclofen pump.

On his behalf I am keen to find out the following:

1. Contact has been already been made with a young person who has had positive experiences of the baclofen pump. However I am keen hear from anyone (especially a young person) who may have had a negative experience of the pump.

2. I would also welcome feedback from anyone who has undergone alternative treatments to the baclofen pump.

Any response, advice or comments to the above would be much appreciated.

HJR






Replies

  • AlexMAlexM Member Posts: 3
    Hiya,

    I'm 20 and have been on Baclofen for as long as I can remember, as medicine when I was a child and in tablet form since my early teens. I have spastic diplegia and some spasticity, but less so than others I've come across. The Baclofen pump was only mentioned to me in passing a few years ago when I was in the middle of a large growth spurt but I resisted. I didn't really understand what it entailed but it honestly was a bit horrifying to me. As soon as I stopped growing at about 14, I had multilevel surgery with great success and the tablets have been sufficient ever since.

    My experience with Baclofen has always been positive. I never had a issue with the medicine when I was little though its sweetness along with the various supplements I was on for poor weight posed issues to my teeth. The tablets have eliminated that issue and are much more discreet. My only issue is that after such a long time, I'm very dependent on the Baclofen. I get awful withdrawals if I mess up my prescriptions and run out. Notably, I cannot sleep without it at all. Why this is, I don't fully understand but if I don't take it, it doesn't matter how tired I get, I can't 'switch off'.

    The pump was not for me but everyone is different and I hope someone can shed more light on this.
  • hjrhjr Member Posts: 2
    Hi Alex

    Many thanks for your response it is very helpful and much appreciated.

    hjr
  • kingyclankingyclan Member Posts: 17
    My son has had a pump for over two years. On the whole I think its been a positive experience, especially as he wouldn't tolerate the high doses of oral baclofen. There haven't been any life changing differences but it certainly has helped. I think it was the right decision and I am still happy about the pump. You've obviously heard the positives and want to hear the negatives so these are ours....

    1. SEVERE brusing from catheter insertion post op
    2 The baclofen seems to affect his breathing particularly at night and concerns over this have prevented turning the pump up to the level of dosage he requires which means he isn't benefiting as much as he could be. we are now awaiting a sleep study to get a scientific view on whether his breathing IS impacted by the pump. The view is do sleep study, turn pump up, do another sleep study and look at the differences
    3 Weight gain. The balcofen reduces movement considerably, the weight goes up due to not using the calories, the Manual Handling issues return in the form of a bigger stronger individual.
    4 You become medicalised. You have to visit hospital for refills, the pump will need replacing in theatre in a number of years and you need the services of your specialist hospital if you need other surgery eg spinal or an MRI


    One alternative as you probably know is DBS. I can't comment on how effective that is. I do know one young man who has had DBS and seems to benefit.

    Try this link for more info http://www.guysandstthomas.nhs.uk/services/childrens/paedneuro/cmds.aspx
  • SheenaBSheenaB Member Posts: 1
    Hi there my name is Sheena, I'm 16 and have spastic cerebral palsy. I have been taken baclofen since I was 9 years old and I am currently part of a focus group creating a trial clincal trial into baclofen and tizanodine. I was offered the oppertunity to have a baclofen pump a few years ago but turned it down because I didn't think it was right for me because I am very self conscious of the way I look and I didn't want it disrupting my education with missing school to go to the hospital regulary to have the pump refilled. Because I have a good quality of life and the cerebral palsy only affects my left side, I am able to live a semi normal life as I am able to walk and talk but need help with dressing and things and I tend to fall over a lot. The issue I have with baclofen is that although it relieves me of pain, it does cause me to be very tired and this has a hugely negative effect on my lifestyle. The focus group consists of me, my family and the families of other children suffering from cerebral palsy. Sadly I am the only child with cerebral palsy at the group who has the ability to talk independently. What the focus group have been comprehending so far is the face that because baclofen was first introduced as a medicine for adults, there has not been enough sufficient research into the correct dosage for children. I hope this helps you with any queries you have.
  • emtilemtil Member Posts: 1
    Hi I hope you can help, I finding it really hard to find help and advice, my four year old little boy has spastic diaplegic CP he has been on baclofen since he was about 3 because of the pain he suffers at night. The doctors tell me he cant get used to the medicine but we are having to increase his doses every 6 / 12 months to keep the pain at bay and enable him to get some sleep at night.

    I really dont know which way to turn, we are trying to rasie funds at the moment to get a bed that can be adjusted and a room down stairs as when he is having a really bad day he can even crawl upstairs to the toilet or his bedroom we have to carry him. If he is having a really bad night, when we position him with pillows this seems to help a little which is why we think the bed is a good move. If anyone is happy to tell me your experiences via PM or on here I would be really greatful. I cant get consultants to take us serious about the night time pain but it has been like this since he was 5 months old the only thing I want to do is help him and I just dont know where to start, the baclofen has helped this but he still suffers the pain even on this.
    Also he seems to have started getting more tried the older he has got and his legs can no longer last a full day at school and he ends up in his wheel chair most afternoon, has anyone had this happen to them, I understand that CP affects everyone differently but I want to ensure that my little boy can be as independant as he wants to be and I am trying to plan whats best for him as he gets older, which I understand is near impossible but I just fell helpless, shattered, and frustrated, with very little support out there.
  • HymerkarHymerkar Member Posts: 63 Connected
    Hi peops, I am 49, so I am well accustomed to living with CP. I managed for 46 years with no medication, but after a problem with my back, which kept me off my feet for about 6 weeks I was having a problem getting back up and walking. All my limbs were so stiff, I couldnt move. My GP prescribed Baclofen. I had to start off with 10mg for 2 days then 20mg for 2 days, and finally settled on 30mg daily. This helped to relax my muscles enough to get me up again. However, once I was walking again, I was finding it difficult to last the day without needing to get in my chair by lunchtime, and no matter how hard I tried, I could not last any longer. It took me, my physio and GP about 2 yrs of trying, lower and then higher doses of the Baclofen, to realise that to stand, and walk I need muscle tone and the Baclofen was reducing my muscle tone. Hence, I had to work that much harder to be able to get my legs to hold my weight - consequently I was totally shattered by lunchtime. We reduced the dose and it helped.

    What I do now, is when I am stiff, I put myself on Baclofen, slowly introducing the dose (I am allowed up to 40mg) until I can get moving, then once I am moving and up and walking, I can start to reduce it. I usually only need to take it for 2 to 3 weeks and then I can stop it (after reducing over 3 days). I mainly need it in winter when it is cold I get a lot of muscle spasm.

    That works for me, I am not suggesting it would work for your Children, but reading your post made me think, that perhaps you got the same problem going on, which is why he is so tired?

    I hope I have helped, and hope you find an answer soon.

    Kindest Regards

    Karen XX
  • handymanhandyman Member Posts: 2
    Hello! I've read your post about a 16 year old boy who was having spasticity and taking Baclofen. I remembered my friend who was also spastic and he took baclofen for years but he stop taking it after 4 years because the dosage is kept on increasing and he is afraid it may affect his liver. Well, according to him the maximum dosage of baclofen is 8 tablet/day. He also took Gabapentin but although it alleviate his spaticity because it relaxes the nerve including the brain but he don't like the effect of the said drug. Now, he's taking sirdalud as an alternative medicine and it somehow lessen his pain but the best thing is to consult to nuerologist about it. Try to avoid stressful or straining activities to lessen the pain because stressful and staining activities are the factors that triggers spasticity.
  • jacobmeojacobmeo Member Posts: 1
    I really dont know which way to turn, we are trying to rasie funds at the moment to get a bed that can be adjusted and a room down stairs as when he is having a really bad day he can even crawl upstairs to the toilet or his bedroom we have to carry him. If he is having a really bad night, when we position him with pillows this seems to help a little which is why we think the bed is a good move. If anyone is happy to tell me your experiences via PM or on here I would be really greatful. I cant get consultants to take us serious about the night time pain but it has been like this since he was 5 months old the only thing I want to do is help him and I just dont know where to start, the baclofen has helped this but he still suffers the pain even on this.
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