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baclofen pump

stephgreenstephgreen Member Posts: 28
jack has dystonic type cp with generalised stiffnes. He has good head and core control. Jack tries so hard to use his hands but finds it so hard due to stiffness. He is on oral baclofen just wondering if anyone has experience of the pump as they have mentioned this for the future, Jack is only 17months old dont think it can be done till hes older.

Replies

  • LynneVLynneV Member Posts: 8
    Hi Steph,
    My daughter had a Baclofen pump fitted at about age 6.
    And boy, does it look big under her skin!
    About the size of a tobacco tin.

    She has no head control, had problems with a spastic toungue and pulling her arms back, so the catheter was placed quite high up (about C4 in her neck) to affect these areas.
    It's worked well, only downside is that her jaw muscles were also affected and her lower jaw has become "pushed forward" giving a huge "underbite". She also developed an infection in the surgery scar, requiring the pump taking out and another placed into the other side of her abdomen.
    Her breathing is MUCH better, particularly at night time when she used to tense up, draw her toungue back and occlude.
    We can also see that she's more comfortable in her body.

    I do know of a little lad in the USA who had the pump fitted when he was very young (think about 2 yrs). But there were specific circumstances which required this for him.

    Hope this helps,
    Lynne :-)
  • stephgreenstephgreen Member Posts: 28
    hi there thanks for the reply. Did ur daughter have gd head control before the pump? jack has trouble using his arms but he really tries the stiffness stops him doing so much. i met a 15year old who said it helped with his arm function. many thanks
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    What if you could do something so that Jack does NOT need a pump in the future?

    My son is also 17 months. He has severe spastic quadruplegic CP. We have been doing Advanced Biomechanical Rehabilitation (ABR) with him since mid-jan. ABR is the only treatment approach for CP which aims to reverse the symptoms. We have had very encouraging and very ealry results. Marten's breathing was very poor and he was on home oxygen, 4 weeks into the treatment he came off oxygen and his breathing has moved from the diafragm to the chest. His involuntary movements have stopped and muscle spasms and stiffness are 95% gone. His body has now segmented, so that when he moves one leg, the rest of the body stays relaxed and does not move. He is not on any medication.

    Intrigued, curious or think it's too good to be true? Post! :-)

    x
  • mollymoobarnesmollymoobarnes Member Posts: 107
    I was really interested to hear about the sucesses you are having with ABR - it wasn't something I hear even heard of. My almost-2 year old son Tom has quad CP and is very tight in both his arms and legs, his sides and his neck - well, everywhere really bless him. I have recently tried a treatment called Deveny which I had high hopes for but which Tom found so painful that I couldnt in good concience put him through it again. I am a mum of twins and I have a 4 year old too so I am thinly spread already in terms of meeting everyones needs. Can you tell me a little about the commitment needed for ABR in terms of time and whether or not your little one found it painful? I've looked a bit online about ABR but not enough to totally understand it but I'll keep reading and see what I can learn from your experiences.

    Maria x

  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    Thanks for your interest! I'm not surprised you have not heard of ABR.It took my husband a week of constant surfing to find it. Marten is the first person in the UK to use it.

    I'll try to compress into a few sentences what's it all about.

    As you know, CP kids have structurally very weak bodies with weak but stiff muscles. All therapies here focus on functioning eg let's try to make a bad body to do as many things as it can. ABR aims to make the body structually stronger so that normal functioning can then recover. Again differently from other therapies it targets soft tissues rather than muscles.It is not painful as the main tehcnique is very gentle compressions through several layers of foam. It is very time consuming as 3 hour a day is needed and noticeable improvement is expected roughly after every 200 hours. Not an easy task as Marten's twin brother has his own challenges.

    Anyway, we saw Marten's ex-physio and his consultant last week, both were impressed how well he looked and was doing. By now a child with his severity should have contractions, he does not. Instead of going downhill, he is getting straighter and stronger and gaining mobility.

    If you go to Marten's web site www.martensprogress.co.uk you'll get a bit more info abou ABR and it gives you links toother sites. You'll see fundraising as well as we need to pay for his treatment.

    x
  • stephgreenstephgreen Member Posts: 28
    Hi there it does sound very interesting is it like the scotson technique? Where do yo go for it? I do get a bit suspicious of treatments which claim to cure cp, but i also dont wanna not do something that actually does work. Would be interested in hearing more about ur experience tho.
    many thanks steph
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    Yes it's a bit like scotstone tehnique. Difference is that Scotstone focuses on chest/breathing/lung function, whilst ABR took it further and deals with the whole body. The nearest place is in Belgium, but we are hoping to bring it to UK in a couple of years. If you watched the ABR videos in Marten's site, the boy Peter Jan is the son of the lead therapist in Belgium. Are you Steph Green in facebook? do you mind if i look you up?

    x
  • stephgreenstephgreen Member Posts: 28
    Hi there where bouts do you live? we live in norfolk yeah i have watched videos. No im not on face book but i dont mind giving you my email address. are there any dvds we can get do you know? Thanks steph
  • NicolaMcNicolaMc Member Posts: 8
    Hi Imogen,

    Definitely intrigued. Can you recommend anywhere to read up on ABR?

    Thanks,

    Nicola
  • kingboy25kingboy25 Member Posts: 57 Listener
    I was interested to see Marten's video but to be honest I couldn't see anything different to the Bobarth therapy my son experienced many years ago. However It is difficult to judge on such a short example. I think the important thing to remember about all these therapies is that the more you work at them the more successful they will be.
    Wishing you all the best.
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    Thanks for all the comments! Hope i manage to reply to all of them - as the site only lets me see the very first post, I won't know if I have missed anybody out.

    First, let me say I am not against any other therapies. They can all deliver good results. I am for choice and I feel that there is not much choice for kids with severe CP. This is why I posted.

    For the last person to comment: the videos I was referring to were the 3 of Peter Jan and Helen on Cerebral Palsy page in Marten's web site. My fault for not making it clear! These were put there to illustrate what can be achieved with ABR.The video of Marten is not necessarily very meaningful unless you know him.

    The time commitment is huge. The way I see it is if I don't do it the now, a few years down the line(let's say when Marten is 7), he'll still need everything done for him. But by then his body would be badly deformed,he'd still wear nappies, I won't be able to lift him and we'd need an extention or new house to give him an on suite bedroom suitable for all the hoists and stuff. With ABR we have a chance to miss most of it. Somebody in some other thread talked about Global Motor Function Classification System; Marten is group 4- but only because he is visually alert and and can vocalise a bit. Othewise he would be 5.

    As for Bobath, ABR and Bobath may be similar in results they deliver, but in the theory behibd it and application these 2 are fundamentally different. Bobath focuses on motor skills and ABR focuses on improving the body's structure.

    ABR has been on a go for 16 years. It was invented by a Russian guy called Leonid Blyum and his site www.blyum.com gives the core information about ABR. Other good sites for information are www.abrbelgium.com and www.abr-denmark.com. Unfortunately Denmark's centre is not operational at the moment. Blyum.typepad.com/abr_and_beyond is Leonid Blyum's blog. There are no DVDs, but most of his lectures ar in the internet (mainly in Vimeo). They are really good for understanding how ABr really works and what makes it a good therapy for a child with severe CP.

    We stay just outside Glasgow.

    If I have missed anybody out, I'm sure you'll let me know!

    X
  • LynneVLynneV Member Posts: 8
    Hi Steph,
    My daughter has absolutely NO head control and has never had any.
    So loss of head control wasn't really a consideration for us when we were talking about the pump.

    She has really bad tonic neck spasms that have become a bit better since having the ITB fitted. Though the best treatment for those has been Botox in the neck.
    However, all this still hasn't stopped her from having a nasty curve of her neck .... sigh.


    Keep on doing your research :-)
    It's always best to know what options are available, so you can get a gist of what's best for your son.
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    Thought that it would be a good opportunity for an update.

    We have been working on the shoulder girdle since mid-May, to strenghten the upper lungs, shoulders and neck. Marten now has good side-to-side head control and some back-and-forward control, not really able to hold his head in the middle yet but it is only a matter of time. When on his tummy he can push himself forward (not a lot though) and grasp things and pull them towards him. He can also push himself along on his back and around like a hand of a clock. Alos, when on his tummy he is starting to try and push up. May not sound much, but you all know what an achievement it is for a boy who started off as a heap. Because he is more mobile and can entertain himself a bit, he is happier, eating better and sleeping better.

    Thanks to all the abdominal compressions we have done he has now got strong digestive system, so a few weeks ago we kicked lactose intolerance.

    We have not managed to get up tp 3 h a day, the ususal is around 2h20min, so we are happy to see the results!

    ABR Canada website has been rewamped and looking very professional! Have included a link (I hope, if not you need to cut and paste) to the article by their research director.

    http://www.abrcanada.com/for-professionals/

    Hope everybody else is doing fine!

    x



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