Re: Fwd: Know What: Cerebral Palsy Prognosis Charts/Kerry

[Guest guest]

Hi Kerry,

Thanks for sharing your story! It means a lot to me. I still don't

know if my 3.5 yo has CP. She went to another specialist Wednesday

who said it's a good possibility that she does have CP. But she can't

make that diagnosis w/o doing a complete exam. Sarai is very shy and

wouldn't complete the exam. She has to have a brace made to be put in

her shoe. She has to have physical therapy 2-3 times a week for the

next 4 weeks and she has to see a developmental pediatricain. When

the 4 weeks are up, the 4 doctors will have a " pow wow " and determine

if she has CP or not. So I'll know in 4 weeks time. I think she does

have CP. She is tighter and weaker on her lower right side and her

right foot is smaller and thinner than the left. Her gait is off. She

is displaying a lot of CP symptoms. What is going to be, is going to

be. She will still be the same little booger to me!! Thanks again

Kerry.

I'll let you know what happens.

:-)

> > > Hey ,

> > > Just got this newsletter and thought you might find it helpful-

> >Kerry, check

> > > any errors they may have made about CP!

> > >

> > >

> > > rella1234@a... ()

> > > From: knowwhat@k...

> > > Subject: Know What: Cerebral Palsy Prognosis Charts

> > > Date: Friday, September 27, 2002

> > >

> > >

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>=====================================================================

> > >

> > > Here is today's Know What topic:

> > >

> > > ===============================

> > > Cerebral Palsy Prognosis Charts

> > > ===============================

> > >

> > > New motor development charts allow accurate prediction of

prognosis

> >in cerebral palsy

> > >

> > > Background:

> > >

> > > Cerebral palsy (CP) is an umbrella term that refers to a group

of

> >problems with movement that result from abnormalities in brain

> >development or brain damage in the first year of life. One

important

> >feature of the condition is that it is not progressive, meaning

that

> >conditions where the brain damage continues to get worse are not

> >included under CP. However, as all parents and professionals who

> >treat CP know, the movement problems suffered by the child

certainly

> >change with time, growth and development. Problems with movement

are

> >the hallmark of CP, but children often have other problems as well,

> >including intellectual disability (from mild to very severe) and

> >problems with sensation (including vision etc). It is believed that

> >CP affects about one in every 500 live births.

> > >

> > > When parents are first told that their child has CP, one of

their

> >first concerns is understanding how the CP will evolve in the

future –

> > its severity, how bad things will become, and particularly

whether

> >their child will ever walk. Unfortunately, health professionals

have

> >very limited information to base answers upon for any individual

> >child. Firstly, the course of CP is highly individual and variable.

> >Secondly, until recently we were limited to information that merely

> >told us about links between the child's developmental stage at age

> >two years (for example whether the child could sit unaided) and

later

> >walking. However, this information was very crude and only really

> >applied to the common forms of CP (e.g. spastic CP) and not to the

> >rarer forms such as ataxic CP where coordination problems are the

> >main issue. Also, this information has been derived from children

> >with CP seen in hospitals, which tends to bias the results towards

> >predicting a worse outcome, as many of the children with milder CP

> >(who do better) go to hospital much less rarely. This results in

> >parents being given a worse prognosis than they should, or one that

> >is simply hopelessly inaccurate.

> > >

> > > More recently, new data on the motor outcomes for CP have been

> >developed from surveys of large numbers of children with CP.

> >Unfortunately, this data was cross-sectional, meaning that the

survey

> >was undertaken at a single point in time. Quality data on what

> >happens to children with CP can only be gathered longitudinally,

> >meaning by following individual children as they grow and develop

and

> >linking their earlier development with their later outcomes (such

as

> >walking). It is also important that this sort of study is

undertaken

> >on a " community " sample, meaning that it includes all the children

> >with CP in a community, not just the severe cases attending

hospital

> >clinics. This data has not previously been available. However,

these

> >Canadian researchers followed up a large group of children with CP

> >over four years with the aim of creating " motor development

curves " .

> >These are graphs rather like growth charts, which could be useful

for

> >individual parents as the development of a child with CP can be

> >charted at different ages and compared with what happened to the

> >children in the research study, thus giving a more accurate idea of

> >the prognosis (outcome) for that child and their parents.

> > >

> > > Findings:

> > >

> > > The researchers concluded that evidence-based prognostication

about

> >gross motor progress in children with cerebral palsy is now

possible,

> >providing parents and clinicians with a means to plan interventions

> >and to judge progress over time. However further work is needed to

> >describe motor function of older adolescents with cerebral palsy.

> > >

> > > Comments:

> > >

> > > These charts are the first to use longitudinal data on a

community

> >sample of children with CP to allow doctors to give parents

accurate

> >prognoses of how their children with CP will fare. Using these

charts

> >does not require any skills in performing GMFM assessments, as the

> >charts can be used by any therapist who has undertaken a detailed

> >assessment of the child's physical capabilities. This is a great

> >advance for parents of small children with CP, and will go a long

way

> >towards reducing uncertainty and worry for parents. Unfortunately

the

> >charts do not extend up into adolescence, which may be their next

> >piece of work.

> > >

> > > Action Points:

> > >

> > > * Accurate prognosis charts are now available for children with

CP

> >of all types and severity

> > >

> > >

> > >

> > > For more information:

> > > <a href= " http://newsletters.keepkidshealthy.com/cgi-

> >bin/knowwhat.cgi?l=development/cp_prognosis_charts.html " >Cerebral

> >Palsy Prognosis Charts</a>

> > >

> > >

> > > <a href= " http://newsletters.keepkidshealthy.com/cgi-

> >bin/knowwhat.cgi " >more Know What topics</a>

> > >

> > >

> > > <a href= " http://www.keepkidshealthy.com " >Visit

> >keepkidshealthy.com</a>

> > >

> > >

>

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