Re: Fwd: Know What: Cerebral Palsy Prognosis Charts

[Guest guest]

,

Looks like you and Sarai have a very busy couple of weeks ahead! I hope that

all turns out for the best and please keep us posted on how your cutie is

doing.

Best wishes,

[Guest guest]

,

Thanks so much. That really was informative! Sarai went to the dr

yesterday and I still don't have a dx! Sarai wouldn't do half the

things the doctor asked her to do. So the dr said she can't dx her

b/c she wasn't able to do a complete exam! It's very frustrating.

Sarai has to get a brace made to be put in her shoe. She has to get

physical therapy 2-3 times a week for the next 4 weeks and she has to

see a developmental ped to be evaluated. After the 4 weeks, the ped

orthopedic, the muscle tone clinic dr, the dev ped will get together

and compare notes. Hopefully then they will be able to tell me if

Sarai has CP or not.

Thanks again,

> 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

>

>

> =================== Please Visit our Sponsor =======================

>

> Need a vacation, Mom?

>

> Enter for a chance to Win a Walt Disney World Vacation or a $150

gift check to Sylvan Learning Center.

> <A HREF= " http://newsletters.keepkidshealthy.com/cgi-

bin/knowwhat.cgi?l=walt_disney_world_vacation " >Enter for a chance to

WIN (it's free)!</A>

>

>

=====================================================================

>

> 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>

>

>

======================================================================

=====

>

> You have received this email because you are

> subscribed to the daily Know What newsletter from

> KeepKidsHealthy.com. To unsubscribe, click on this link:

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

bin/newsletters.cgi?p=unsubscribe & e=rella1234@a... " >Unsubscribe</a>

>

> To change your email address, click on this link:

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

bin/newsletters.cgi?p=changeemail & e=rella1234@a... " >Change Your Email

Address</a>

[Guest guest]

Kerry,

That must have been a scary time for you with Marcus. Thanks for sharing

your story, now 4 years later you have the wisdom and guidance that can help

moms that are now going through maybe a similar circumstance- as well as give

them hope that one Doctor's opinion, may be just that, an opinion. It sounds

like your hard work with exercises and music class really helped bring him to

use that side- good work Mom!

' Mom

[Guest guest]

Hi

i have just read this post so i aplogise before hand as i have been away

from the computer for a few weeks. i just wanted to let you know what i went

through with my eldest son.

Marcus was born 6 weeks early. No reason given my waters broke and 24 hrs

later he came. i was in labour 45 mins! he weighed 4 pounds 7. He was in

NSCBU for 2 weeks. His lungs were fine. Well Marcus had to stay under the

pediatrician when they are premature. So i had an appointment when he was 6

months old but before that i noticed that Marcus looked one way all the

time. He never turned to the right. i mentioned this and the doctor got a

physio to come out to us once a week and i was given stretching exercises.

So we were doing ok and i had no worries. Went to the pediatrician's appt

and he offered Marcus a pen and Marcus was not interested he did not reach

for it. So the doctor got out his chair and so i went to get up to leave and

he said to me " i am thinking he has cerebal palsy " . Well he did not explain

anything to me i went home in a daze really upset so i phoned the physio and

she was surprised. Anyway to cut a very long story short Marcus went to a

special Nursery twice a week where we did singing and stretching and all

other activities. My health visitor even came to one of these classes and

was amazed at what they expected the babies to do. She even said that full

term babies would not do some of the excercises.

Well with intervention and persuasion Marcus started using his right hand

and was walking at 13 months and he is four now and i have no worries. I was

told at his 1 year appointment that he did not have c.p but apparently some

times its hard dx. I wish you all the luck in the world and i know that the

nursery really stimulated Marcus and all the stretching and exercised did

help.

Take care

Kerry

Marcus (4) Dylan doc band grad (19months)

Calgary,AB

>From: " stripes6060 " <taime@...>

>Reply-Plagiocephaly

>Plagiocephaly

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

>Date: Fri, 27 Sep 2002 15:51:45 -0000

>

>,

>Thanks so much. That really was informative! Sarai went to the dr

>yesterday and I still don't have a dx! Sarai wouldn't do half the

>things the doctor asked her to do. So the dr said she can't dx her

>b/c she wasn't able to do a complete exam! It's very frustrating.

>Sarai has to get a brace made to be put in her shoe. She has to get

>physical therapy 2-3 times a week for the next 4 weeks and she has to

>see a developmental ped to be evaluated. After the 4 weeks, the ped

>orthopedic, the muscle tone clinic dr, the dev ped will get together

>and compare notes. Hopefully then they will be able to tell me if

>Sarai has CP or not.

>Thanks again,

>

>

> > 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

> >

> >

> > =================== Please Visit our Sponsor =======================

> >

> > Need a vacation, Mom?

> >

> > Enter for a chance to Win a Walt Disney World Vacation or a $150

>gift check to Sylvan Learning Center.

> > <A HREF= " http://newsletters.keepkidshealthy.com/cgi-

>bin/knowwhat.cgi?l=walt_disney_world_vacation " >Enter for a chance to

>WIN (it's free)!</A>

> >

> >

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

> >

> > 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>

> >

> >

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

>=====

> >

> > You have received this email because you are

> > subscribed to the daily Know What newsletter from

> > KeepKidsHealthy.com. To unsubscribe, click on this link:

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

>bin/newsletters.cgi?p=unsubscribe & e=rella1234@a... " >Unsubscribe</a>

> >

> > To change your email address, click on this link:

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

>bin/newsletters.cgi?p=changeemail & e=rella1234@a... " >Change Your Email

>Address</a>

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com