Cerebral Palsy
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Brainwave - does anyone have any good expeiences?

katlilkatlil Member Posts: 17
edited September 2014 in Cerebral Palsy
Hi All

After reading through another thread on here I've started to get very excited about the fact there is now a Brainwave Centre in the North West (we are in the North East).

Has anyone been to Brainwave, and if so, how has it helped?

Lily is 5 and cannot stand or walk independantly. She uses a k walker but her feet turn in and she trips over them. She has been on Baclofen for 18 months and has had to lots of Botox injections in her calves and hips. She has quadraplegic spastic cp.

I want more than anything for her to be able to walk independantly one day. However, there has been very little developement in that area over the last 2 years, and I've now sort of accepted that it's never going to happen. Whilst I appreciate it won't happen overnight, I'm wondering if Brainwave could help us achieve this.

I'm also worried about what our Physio would say? Would she approve? Would the NHS withdraw her?

Replies

  • ElibarebumElibarebum Member Posts: 11
    I don't have any direct experiance, but would really consider it when Elliot gets older.
    I'm sure your physio wants your daughter to reach her optimum mobitliy, and sometime they need a different perspective and if something is done in a different way your daughter may respond better that say the way that things have been done, ask your physio if she thinks that this is a good idea. and test the waters that way.
    This is what I do with our physio, and I find I get much more information about different therapies, and advantaged and disadvantages of them.
    They cant throw you off of physio as they are nhs, and they cant turn away someone who needs treatment.
  • hilsflynnhilsflynn Member Posts: 24
    Hi jogo,
    I thought I'd reply to your direct question to me here, then anyone looking up Brainwave on here can see. We have been attending the Bridgwater centre for just over a year, and it is brilliant. I also know of 2 other families with similar age children - totally different problems/diagnosis - who would also say the same.

    I can understand your reservations re upsetting your physio - but ours were really supportive, they understand that the help the NHS can provide is limited in terms of hours, and Brainwave provides that little bit more support. The added bonus being, that while some of the exercises in our programme were new - the vast majority were similar to those that our NHS physio had advised us to do - but Brainwave put it into a manageable programme that we could regularly fit into our everyday lives. If we are struggling with any of the Brainwave exercises, our NHS physio advises us how to carry them out slightly differently.

    I chose Brainwave because it really focuses on YOUR child, where they are in their development and builds on it. They help devise a programme that suits you and support you. The staff who work with you are qualified and excellent. I can't say 100% how much of what Harry is doing is because of Brainwave, and what would have happened anyway - but I know the vast majority isn't just natural progression. When we looked into Brainwave when Harry coming up for 18 months he was just rolling, at our first session just after his 2nd birthday he had just sat up for the first time unsupported for a few seconds. Less than 13 months later he can crawl (and has bottom shuffled for a period prior to this), sit unsupported on the floor for any length of time with his legs out in front, whilst playing with toys and moving them around with him, he can get himself from lying to sitting, from sitting to standing (holding hands), and can stand with support for several minutes. We have attended the centre 3 times now, with 2 home visits in between to amend the programme when we needed it. They have also provided a hydrotherapy programme which we use at our weekly hydro sessions at home.

    My only advice is don't go expecting them to achieve a specific thing e.g. walking. That way you won't be disappointed or put yourself, your daughter, the physiotherapists under pressure (easier said than done, I know - I still go thinking 'oh, will they give us this exercise now', 'will we be working towards this milestone now'). Go expecting them to help and maximise your daughters potential. I certainly believe that they can help you do that, only time will tell if that includes walking.
  • IsmaelAIsmaelA Member Posts: 1
    I did some research on Brainwave and was a little disappointed to find that the qualifications of their head of therapy amounts to a degree in business studies. I know they do have qualified people like physiotherapists and teachers but when they speak of their programmes being based on the conventions of neuroplasticity, my question would be, ' where is the qualified input from this discipline?' because a degree in business studies won't cover it!
  • katlilkatlil Member Posts: 17
    Hi Hilsflynn

    I have rang the Bridgewater Centre and asked for the info. They say once I've sent it in they will call me and I can speak to one of theri Therapists to discuss how they could help Lily.

    I've also spoken to a Physio where I work (in a private hospital) whose daughter also has cp. She says that she has heard of Brainwave and that she doesn't think our NHS Physio would be offended. Thinking about it she's right as our NHS Physio tends to go into school more than come to the house. So, potentially Lily could be getting both if she's getting NHS Physio at school and Brainwave at home.

    I am a bit worried about fitting it all in now that Lily is at school. She's very tired when she gets home so evenings will be out of the question. That onyl leaves mornings an weekends. Is that enough time? I ready somewhere that they never give more than 10 hours per week, but i think we'll only manage about 5-6 hours if that...

  • sarahprattensarahpratten Member Posts: 35 Courageous
    Hi - I did book in to go to Brainwave some years ago, but did not attend as I found a therapy I thought was better. I have no doubt that Brainwave does help children, but I think that really it seeks to make the best of a bad system. The Scotson Technique on the other hand adopts a restorative approach - seeking to make a bad system better. If I were you I would look into this before making a decision where to go. (www.scotsontechnique.com). I appreciate this is based in the South East, but it is well worth the effort.
    My son has made huge progress using The Scotson Technique as have many others.
    Best wishes,
    Sarah
  • chakkachakka Member Posts: 3
    Hi there,

    We have attended the Brainwave Centre in Somerset for the past two and a half years. They have been fantastic with us, our daughter has really come along in terms of mobility. When we first started with them she was just lying on the floor now she is trying to pull herself to standing! What the Brainwave Centre does is give you the tools to be able to give your child the right kind of physiotherapy.

    I don't feel the NHS give enough support because of time and money, the Brainwave Centre are able to do this. It is very expensive but well worth it, although we received funding from the Caudwell Trust, they were very generous.

    Don't get me wrong it is very tough giving physio all of the time but they work out a schedule that is suitable for your lifestyle.

    Let me know how you get on.

    Mandy x
  • katlilkatlil Member Posts: 17
    Thanks

    I filled the form in to request a telephone consultation, so we're just waiting to hear from them.

    If we do go, I'm hoping that we will be able to go during a school holiday, as that way my other daughter can come too and we can turn it into a little holiday.

    Hopefully we won't have to wait much longer...
  • katlilkatlil Member Posts: 17
    I had a telephone consultation with a Physio from Brainwave on Tuesday afternoon and have decided to give it a go. We've provisionally booked in for 18th and 19th January.

  • renacahillrenacahill Member Posts: 145
    Hello. We were speaking today with a mum who's little boy has recently attended Brainwave, and she was very impressed with the way they focused on her sons mobility problems and outlined a programme tailored to his needs. He also has just started school in September and is just under 5 still. The Brainwave centre worked out a plan which gave 1/2 hour work per day and is very manageable

    My daughter is now very keen to look into this with regard to my grandson who is 2. Between us we have worked/played! with him now for 18 months and he has shown great progress using physio and OT and Portage guidance, and following the principles set out in the book by siegelinde martin, (teaching motor skills to children with CP). I think she will be looking after christmas into this more closely as what we have found is it is difficult to keep up the momentum with home physio, and a programme worked out by someone else may give us more incentive. (A bit or minor burn-out I think!)
  • nicki70nicki70 Member Posts: 1
    edited June 2015
    Ive seen this post is pretty old but have you tried http://www.heelandtoe.org.uk/ its in the North East, just another option
  • chloesmummychloesmummy Member Posts: 4
    hey
    i am looking into brain wave for my 2yr old.
    we are only having input from our physio once every 3 months and no input from the ot.
    i was wandering what ppl thought of brain wave
    xxx
  • renacahillrenacahill Member Posts: 145
    We are all off the Brainwave next week for the first time. We will post on return to let people know about our experiences. Very much looking forward to going.
  • renacahillrenacahill Member Posts: 145
    Hello we have just come back from Brainwave and I cant recommend it highly enough. My grandson is eliebarebum and has CP. He has underlying low tone and hypertonic extension movements on effort. We were a bit surprised when we got there that the therapists were just concentrating only on Elli but they said they never have more than 2 families so they can give all there attention to the child.
    There were three staff inc physio and OT and it was the depth of their assessment which impressed us most. They answered so many questions. When you see the nhs physio, ot, paed you just get a piece of the jigsaw and its difficult to make sense of what is happening but with brainwave you get the whole picture.
    The centre is so well equipped and the sensory room is out of this world. The not only assess the physical side but also the cognitive ability and it was reassuring to know Elli is on target for his age. Elli is a complicated little boy but they identified his main problems as low tone in his trunk causing him to compensate in other areas and to have developed a clustered hyperextension pattern to compensate.
    They gave us lots of exercises/dvd and equipment to counteract this and will review him in 6 months to see if the graph they made has shown improvements.
    It also gives you the confidence to know the exercises you are doing are working towards your desired outcome.
    The reassuring thing is he has no spasticity as such, but his balance and coordination is very low scoring. When these improve with the exercises his arm movements will improve too. We also went into the hydro pool at a local school and learned some new exercises for Elli to do in the pool we currently go to.
    It was so good just to learn what is the most important thing to concentrate on as, with Elli's complicated picture, we were getting overwhelmed with all the different areas which need working on. If you are unsure about going there are people you can talk to. we also went to the centre in Cheshire.
  • Ana-LeeAna-Lee Member Posts: 1
    edited June 2015
    Hi,
    If you choose to seek independent treatment you will not lose your NHS treatment. I have heard negative comments about brainwave and instead have been travelling to devon from manchester twice a year for treatment from Andrew at Snowdrop he is a parent and has a great wesite and lots of experiences her is listed on the NHS choices website and costs a lot less than Brainwaves. I personally think it is the best thing I have done for my daughter and have see so much improvement although it is no miracle cure. I would take a look , consider your options and research - all of which you seem to have started doing.
    Good luck in your search and I hope it is successful - I think that it is worth trying as you have nothing to lose but plenty to gain.
    Ana
  • renacahillrenacahill Member Posts: 145
    Ana-Lee. It is totally untrue that if you seek alternative therapies you lose your NHS therapists. It has not affected us in any way and our physio has taken Elli's dvd home to see what they have worked out and is integrating that into her sessions.

    I also looked into Snowdrop and was very impressed with Andrew Brereton and the centre there. We decided against it because Elli's physical issues are more apparent than his sensory issues (he has these too but they are easing as he gets older). We felt that the Brainwave centre would offer us more and we would certainly consider Snowdrop in the future too - the therapies are not mutually exclusive - the more you can do the better, but Snowdrop is in the West country and we are in yorkshire, so the trip down would be very stressful for Ells.

    Since starting the Brainwave therapy designed around Elli's weak areas we have seen him sitting much better, and will even sit himself upright in his buggy whereas before would flop back. We can tell the exercises are working as he gets so tired and blancmangy by the end of the day!
  • renacahillrenacahill Member Posts: 145
    Hi Msujb. Having researched endlessly with the different therapies and outcomes I thought I would share what I've learned to see it if will help. Some NHS physios are ok with conductive therapy but they are mostly Bobath which aims to restore as much 'natural' movement as possible. Bobath is about quality of movement but conductive education looks at achieving function, so the child achieves goals, even though they might move in an awkward way to achieve that. Quality movement is not always possible so it really is a question of what if right for your child.

    Elli is affected in all 4 limbs, he has underlying low tone and uses an extensor pattern on movement which he has to fight to overcome. What Brainwave showed us is that it is useless trying to get him to walk when he cant sit solidly because his trunk was so weak. They showed us how this weakness manifested itself and what exercises to do to strengthen his trunk. They also showed us where his balance was so off! The exercises also address the balance issues. With appalling balance he has no chance of sitting well or walking. They said we need to work on the basics. It will all take longer but he will not miss out on areas if we do this. His hand movements will also improve if his trunk is more solid. So far all this is improving since we went in March. He can tailor sit taking everything out of my handbag, then putting it all back again - a major improvement in his hand use, just a bit messy!.
  • msujbmsujb Member Posts: 9
    My son Harry is going for his first session at Heels and Toes tomorrow which is a charity which helps children with CP using conductive therapy. We've heard good and bad reviews but thought we'd try it for ourselves. However we've kind of been keeping hush hush from our physio as we've been told the nhs frown upon their techniques. Apparently they just want to get them walking but we just don't know!!! So anyway we thought we'd give it a go and see what its like. Has anyone got any experience using Heels and Toes??? Has it been worthwhile???
    Oh and the good thing a bit like your grandson is he doesn't seem to have any spasticity as such but just balance and truck control plus his hand motor control is poor too bless him.
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