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Good news!

imogen37imogen37 Member Posts: 61 Listener
edited May 2014 in Parents and carers
Hi

Some of you would know from my earlier posts that I have a 20month old son with severe spastic quadruplegic CP and that we have been doing Advanced Biomechanical Rehabilitation from jan this year.

Well, we are just back from Belgium to see his therapy team and they were very happy with his progress so far! he no longer has muscle spasms and involuntary movements, he has got more trunk strength, he is no longer crying constantly but is smiling and laughing instead, he is watching his fingers, he is aware that he has arms/legs and these do certain things, he is sleeping better and can wriggle himself comfortable (within limits), he has reasonable head movement, his eating technique has improved; when held, he is either hugging into me or holding on to me and he is just generally more content and curious.

He has gained enough strength and mobility for us to move on for more specific tasks. The next step is to correct hte structure of his rib cage. His ribs connect to sternum and vertebrae in a wrong angle, so that the sternum and vertebrae are too far back and have to move out.That would flatten and widen his chest and increase the volume of his chest so that the diafragm can move up into its correct position. Also the disks of the vertebrae are too close together, correcting that will increase the flexibility of spine and ribs and the ribs can then move sequentially rather than all at the same time.

We spent a full day

Replies

  • imogen37imogen37 Member Posts: 61 Listener
    Good news continued

    Sorry, got distracted and clicked the mouse too early!

    We spent a full day practicing the technique to use for the next 6 months or so. Also had discussions with the team to bring ABR to UK so that parents of severely affected children have a choice of therapies.

    x
  • My_angelMy_angel Member Posts: 18 Listener
    Hello, Great News!! I am very glad for your and you son.

    Could you please give some more details about this Rehabilitation? what is it about, any videos where I can see about it? my daughter has spastic CP.

    thank you.

    Rada
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    I'll try to put the theory of Advanced Biomechanical Rehabilitation into a few sentences.

    Here goes. The theory behind ABR is that even an injured brain has enough capacity to form new pathways to develop function, but the bodies of children with CP are too weak and structurally bad and not able cope with functions. So ABR concentrates on correcting the body's structure so that function can develop. It focuses on smooth muscle and connective tissue as smooth muscle (internal organs) holds the sceleton up and connective tissue keeps everything at its right place - completely opposite what any physio would tell you.

    In terms of applying ABR it's all slow gentle compressions or short rolls with a ball/silicone egg. The child is a passive recepient and that makes ABR suitable for more severe children who don't have the energy and mobility to participate in anything.

    For more info and videos go to www.martensprogress.co.uk-it's a site about Marten, but it has links to other sites and a few general videos. Also www.blyum.com, (that's the creator's site) www.abrbelgium.com, ww.abrcanada.com. If you go to Vimeo and search for "BlyumABR'svideo" there should be around 12 or so. I was going to pick a few of them out for you and attach here, but it was too difficult to decide which ones would be the most appropriate.

    If, after that, you decide that this is the right thing for your daughetr, ABR will available in UK from March.

    And last, but not least. Since I posted this in Sept we have had more progress. Marten is now able to bite a sandwich and he can be lifted from under his armpits! Previously his shoulder blades slid up to his ears if he was lifted from under the arm pits, but he now loves lifted up so that his head touches the ceiiling!

    Any questions, come backa and post and I'll try to answer the best I can!

    x
  • My_angelMy_angel Member Posts: 18 Listener
    Great, thank you for sending the information, It sounds really interesting to me and very familiar when you said slow gentle compression - if you heard about Scotson Technique at Advance center - is it something similar?


    I have looked at the videos and would be great to get in touch with them. Do you know where and when in March they are going to be in UK? how can I book ?

    I am very glad Marten have had a progress after ABR. Hope he improves more and more.
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    Sorry, been slow to reply, life took over - again! How is your LO doing?

    yes, I have heard and looked into Scotstone tehcnique. years ago Linda Scotstone and Leonid Blyum worked tohether on therapy for children with CP. When they went their separate ways, both took what they had worked on together and leonid Blyum developed it into ABR and Linda Scotstone made it into Scotstone technique. So the 2 do appear similar.

    ABR will be available in UK from march next year. There is an information evening on Fri 8th March by Belgium team followed by assessments for children and training for parents on Sat, Sun and Mon. They can take 10 kids in total. The assessments take min 2h and training 1/2 a day. They train up to 3 adults per a child. You don't need to book for the information evening, but it is advisable so that we have an idea of numbers and requirements. It would be a good idea to book an assessment, as some of the places are already taken.

    The place is Kilbarchan Guide Centre. It's the village we stay in, so that we know the venue is suitable, there is plenty of suitable accommodation nearby and lots of people to help us. It is 20min from Glasgow city centre, 10min from Glasgow airport and less tha 1mile from the motorway. Travel-wise it is easily accessible.

    Unfortunately ABR has to be privately funded. After the tax man has added his VAT, the cost is somewhere between
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    More good news. First, Marten's function is continuing to improve. His left side, which was always the weakest has improved vastly over the last few weeks. He moves his left hand now with a lot more ease. When he's lying on the floor he will push his feet against you and propel himself along the floor on his back. These are all signs that his function is improving as his structure corrects and strengthens.

    Secondly, his ABR therapy is now definitely coming to Scotland in March. The Belgian team are not only carrying out assessments, they will also be commencing training parents in the tachniques as well. More information can be gained from www.abrscotland.com

    We looked at many different therapies before making our decision. ABR is not for everyone, it is a big commitment, but we are parents of cerebral palsy children and that's a full-time job for life.

    Best wishes.
  • My_angelMy_angel Member Posts: 18 Listener
    Hello, thank you for all your replies..

    I just wanted to ask if these two methods are similar why then the cost for Mr. Blyum so higher comparing to what Mrs Scotson charge at the Advance centre ,

    At Advance they charge
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    No idea about a pricing policy for any of the treatments, could be to do with development and research maybe?

    I have no financial or any other stake in ABR, just want as many people as possible to know about it so that parents have more choice and can then make up their own minds. Loads of kids in Europe and North and South America have benefitted from ABR, mostly the ones at the severe end, for whom NHS does not have much to offer according to NHS Choices.

    You could always contact Mr Blyum or the European centre (Belgium) to enquire about the pricing policy?

    x
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    Should also have said to My Angel that we looked at Scotson before deciding on ABR. It appeared to us that Blyum's ABR was much more developed than Scotson's technique for children with CP. It was only later we learned that they had a tie up years before which may explain the common origins, but we opted for ABR without even asking the price of Scotson because it looked much better for Marten and that was the most important thing.

    To get technical for a bit. The basic question I think parents should ask when assessing a therapy or treatment is this: will the therapy reverse the problems in the muscles and skeleton, or will it simply try to get the best function out of a structure which is deficient?

    We're glad we opted for ABR and are delighted with Marten's progress - even to the extent of reversing the curvature in his spine; which we have specific ABR moves for. At the end of the day we parents have to make the choice we think is best for our kids.

    x
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