We urgently need your help

Fixing Max

The solution

Get Max to America on January 16th

For 3 weeks of intense therapy with follow-up aftercare. Then bring their expertise back here the UK, for Max and many more scoliosis sufferers.

Max’s scoliosis is diagnosed as idiopathic, meaning – cause not known or spontaneous. This is the generally accepted norm in the UK together with a prognosis of likely progression until surgery is required. Without a root cause we can only treat the symptoms. That’s a poor solution that I’m not accepting for Max.

Max is acceptedly a complicated case encompassing genetics, neurology, medical and physical aspects. It is for that reason I have been asking for a multi-disciplinary meeting with Max’s specialist consultants for nearly five years. The drive and resource isn’t there for a SWAN (Syndrome Without A Name). There are no tick boxes against which paediatric consultants can allocate.

Max’s scenario aside, scoliosis is unique to the individual. Max and every other suffer need a comprehensive investigation and diagnosis in order to define and treat the root cause. The spine is bending and twisting for a reason.

America has dedicated multi-disciplinary scoliosis centres where their mission is to exhaust non-surgical treatment options. Importantly for Max, they address physical, neurological and genetic influences. If ultimately he does require surgery it will be on a straighter spine, with less invasive surgery, providing a far better outcome for life.

I shall be taking Max to Scoliosis Academy to work with Dr Matt and Jocelyn of Jazen and Jazen.

A programme will address some critical success influencers for Max:

  • The centre is expert in genetics and neurology and will explore if it is possible that nutrition can bypass the receptor gene that Max is missing.
  • Preserving and improving heart and lunch function immediately is critical as Max is at the age when optimal capacity is reached.
  • Using his imminent major growth spurt will not only prevent it from worsening condition but can actually work to help the spine to straighten and stay straighter, and stronger.
  • Global Delayed Development, low tone and learning difficulties means that Max needs passive therapies where work is done ‘to’ him and ‘with’ him.
  • Adapted seating positions in his wheelchair, school seating, and car seat.

Their care programme will encompass the following:

Explore root cause:

Nerve tension:

While a child spinal bones are growing the tightness of the spinal cord can cause the vertebrae to coil down like a spring that has a string running through it. This is called Uncoupled Neuro-Osseous Development and is likely to become known as the most common cause of adolescent scoliosis.

Structural or bio-mechanical:

Preventing bone deformity from happening over the long term, and assisting the body to operate in a functionally correct and integrated way.

Neuro-muscular:

Connection of the brain to the muscle.

Deliver a bespoke therapy including:

Root cause:

Genetic and physical investigation and bespoke treatment plan

Flexibility:

Using the Eckard table and traction chair to gain suppleness and flexibility. Balancing out the competing factors that prevent the curve from reducing and then holding.

Strength:

3-dimensional exercise of only the muscle needing strengthening. Creating conscious and subconscious change to support the spine in a corrective position.

Fighting gravity:

3D brace: 3-dimensional bracing that fights the driving force of gravity and assists in equalising then retaining the strength of ligaments along both sides of the spine.

Night time brace: A second, more hyper-corrective brace worn whilst there is less pressure on the spine can hold it in place s it naturally elongates and straightens by up to 33%

Continued care:

  • Eckart table and traction chair
  • Chiropractic and biomechanics
  • Osteopathy and Hyperbaric Oxygen Therapy
  • Day and nighttime bracing
  • Bespoke care programme that continues for life

When it comes to scoliosis care, the best treatment is not just one, but a collection of therapies. When you couple the therapies together into a complete programme, you have the tool str manage scoliosis for life. – Janzen & Janzen