Friday, 14 December 2012

OPEN LETTER

To conductors and others

From Paces, Sheffield. An open letter from Ray Kohn –

Dear conductors and others
 
For some time I have thought that a key breakthrough for conductive education in the UK would be persuading the neo-natal clinical assessors to refer babies with CP to conductors. We all know the reasons why they do not: but this might change if we could identify a specific condition where there was evidence that referral to a conductor could be shown as more beneficial than any alternative.
 
Gabor Fellner at Paces has told me about one condition that seems to fit the bill. Periventricular leukomalacia (PVL) is a condition that he recounted to me as one where standard UK practice sees babies referred to a physiotherapist. His description of the outcome was that such a referral would virtually guarantee that the child would never walk. Referral to a conductor would almost certainly see the child as ambulant from aged three.
 
Not being medically trained, I pulled out research evidence that I could find on the Internet and mapped out a short report that I could use when beginning a discussion with clinical assessors (viz. attached). However, before I start that process I would like to collect as much evidence of how conductors have dealt with this condition, what outcomes have been achieved and what experience families have endured when their child has had this diagnosis.
 
If you can help me by sharing any of this, I would be most grateful.
 
Best wishes
 
Ray Kohn 
 
Please respond to Ray direct at:


Do let us know how you get on, Ray:
  • in attracting responses from conductors and others
  • in framing your approach and
  • in how the 'neo-natal clinical assessors' respond...
Good luck.


Appendix


Ray appends the following information to his letter –


Periventricular Leukomalacia (PVL)

According to the Syracuse University’s hosted CPParent Listserv website, there is no specific treatment for PVL. Current research focuses on identifying risk factors and on preventing PVL.

Information provided to parents asserts that damage to the periventricular areas usually affects muscle control, although other brain functions may also be involved. The three most common problems resulting from PVL are:
 
cerebral palsy (CP)
developmental delays (including mental retardation)
behavior problems.

PVL is a leading cause of cerebral palsy in children. In 1995, Pinto-Martin, et al (1). reported a 14.6% incidence of CP among infants with PVL whose birth weight was between 501-2000 grams. Infants with PVL who weighed 501-800 grams at birth had a 7 to 20% incidence of CP.5 The variation in outcomes is due to the variation in location, size, and extent of PVL.

Infants with PVL have varying degrees of mental handicaps. Some may show normalintelligence and development. Most, however, have developmental delay and handicaps in their ability to think and learn. According to an assessment of 13 patients with PVL by Yokochi (2), 23% of the infants had severe mental retardation, 38% had moderate mental retardation, and 38% had mild retardation. Mental handicaps may also have been influenced by injury to other areas of the brain in these sick premature babies.

Among babies with PVL, the type and severity of disability appear gradually over time. It is very important for babies who have been diagnosed with PVL to have frequent developmental assessments.

The website goes on to say that there is some evidence that massage therapy, a range of motion exercises, and oral and visual stimulation may reduce the level of disability. They pose little risk to your baby and may help. You should ask your baby's nurse, doctor or occupational therapist about this.

Evidence from the most experienced practitioners of Conductive Education, however, would indicate that when PVL is diagnosed within 30 days of birth by ultrasound, MRI scan or CT scan of the brain and a structured conductive programme is undertaken with a trained conductor, major gains can be identified by the age of 3. Most obviously, the spasticity preventing ambulant development is almost always overcome by the age of 3 whereas intervention only by masseurs and physiotherapists almost never result in the child being able to walk.
 
(1) Pinto-Martin, JA, Riolo S, Cnaan A, et al. Cranial ultrasound prediction of disabling and non-disabling cerebral palsy at age two in a low birth weight population. Pediatrics. 1995; 95: 249-254.
 
(2) Yokochi K. Clinical profiles of subjects with leukomalacia and border-zone infarction revealed by MR. Acta Pediatr. 1998; 87: 879-883.

Labels:

0 Comments:

Post a Comment

Subscribe to Post Comments [Atom]

<< Home