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My grandson has an early diagnosis of CP. What treatments are privately available?

Jtregoning
Jtregoning Member Posts: 3 Listener
edited November 5 in Cerebral palsy
I’m the grandmother of a 1 year old little boy who has early diagnosis of CP. I’m wondering what treatments are privately available and what is recommended.
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  • janer1967
    janer1967 Member Posts: 12,827 Disability Gamechanger
    Hi and welcome to the community 

    You might find some info on our cp section we also have a cp dedicated member who will point you in the right direction 


    I have professional experience in HR within public,  private, and charity sectors.  If I can help I will 
  • Tori_Scope
    Tori_Scope Posts: 6,620

    Scope community team

    Welcome to the community @Jtregoning :) It's great to have you with us. 

    I've moved your post into our CP category, and renamed it, so that other members of the community with experience or knowledge to share will be able to find it more easily. 

    Are you in touch with your grandson's medical team? Have you spoken to them about any recommendations they may have for treatment that's not available on the NHS?

    I'll also tag @Richard_Scope in here, as I'm sure he'll be able to offer some additional insight.
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  • Jtregoning
    Jtregoning Member Posts: 3 Listener
    Hi Tori. The complication is that my grandson and family are in Sweden and they are not happy with a lack of individualised input there. So they are considering coming to England to access alternative methods of help such as the Feldenkrais Therapy, HBOTT and also specialist neurological physiotherapists working with children. 
    Have you or others got any particular views on these methods? 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,025 Disability Gamechanger
    Hi @Jtregoning - & welcome to the community. First, a disclaimer, I'm a long retired physiotherapist, who specialised in treating children with CP. Having said that, I always try to be objective when looking at the medical literature, etc. I have had to be in researching my own family's disorders, which were unknown, particularly our neurological problems.
    I can find nothing in the medical literature about the use of Hyperbaric Oxygen therapy in CP, tho it certainly is thought it may be indicated in certain conditions. In this 2019 medical paper you can see these if you scroll down to Table 1. Please see: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6690283/    There can also be some rare side effects with its use. Please see: https://flawless.org/hyperbaric-oxygen-therapy-treatment/#13
    About the Feldenkrais method; I can see no contraindications, but neither can I see much in the way of high quality studies, altho it's thought it may be comparable to other modalities in certain populations, & is beneficial in helping older people with their balance. It wasn't compared to physiotherapy, nor was CP mentioned. In theory, as it tries to help a person's function, I think it has possibilities, but I would just mention that the training for practitioners is considerably less than that of a physio.
    There's also the Anat Baniel method, which is based on that of Feldenkrais, whom she studied under. I can find no mention of the Anat Baniel method in the medical literature, but have just come across this: https://www.pencru.org/evidence/anatbanielandfeldenkrais/  I can't find the paper, but this is stated,'There is no research evidence to suggest that either therapy might be effective for children with cerebral palsy.'  This was in 2015, & I can't find evidence that this has changed since, so only time will tell.
    There are Bobath centres which specialise in CP & other neurological disorders. The potential benefit there is that, depending on a child's needs, they can be seen by physios, an occupational therapist & a speech & language therapist. Please see this one in London: https://bobath.org.uk/about-us/welcome   There's another in Cardiff, & Bobath Scotland in Glasgow.
    You can also find a chartered physio on the Chartered Society of Physiotherapy website: https://www.csp.org.uk/public-patient/find-physiotherapist/physio2u
    As I say, there haven't been sufficient studies on the Feldenkrais method, & it may well yet prove helpful, however I doubt practitioners will see as many CP patients as a Bobath centre. Hope some of this helps your family.

  • Jtregoning
    Jtregoning Member Posts: 3 Listener
    Thank you so much for your detailed response to my query. That’s really helpful. I do have my doubts regarding HBOT but have recently spoken to a Feldenkrais practioner who lives very close to my home, where the family in Sweden could come to stay. He was very impressive and helpful,  with lots of experience working with children with CP. He wasn’t touting for business and provided my son with info regarding two Swedish practitioners. He has also offered to chat on zoom with my son. Ive also discovered, through the Scope website, a child physiotherapist with 40 years experience behind her working with children in nHS hospitals and private practice. She was also very helpful. 
    I’ll follow up the links you’ve given me.
    Thank you so much.
    Jane
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,025 Disability Gamechanger
    Children with CP matter to me, so I'm always willing to look into things further when I can. I've had the privilege of working with many such amazing children (& some young adults). I really would discount the HBOT. I must admit that I nearly added that a good therapist with experience & commitment, but passion overall, matters more than anything. The Feldenkrais practitioner sounds to have been most helpful, & pleased so too was a paediatric physio.
    I would have no hesitation in recommending a Bobath Centre for the reasons given above, but thank you for saying you'll look into everything. It seems your family will make a good choice. May I say I wish the best for your grandson, & you all as a family, & would ask you to kindly let us all know how you get on, thank you.
  • Richard_Scope
    Richard_Scope Posts: 2,946

    Scope community team

    Hi @Jtregoning
    Thanks for posting and thanks to @chiarieds for their comprehensive response to your question. Bobath is a very good option. Working with parents in the cerebral palsy (CP) community I have also had good reports about The Movement Centre, PACE 
    Scope
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