Guidelines Of Care CerebralPalsy

The special care needs of children with cerebral palsy are best met by an experienced, coordi-nated team of pediatric specialists working collaboratively with parents, the primary care physi-cian, and other service providers. Not all members of the basic team may be needed at eachvisit, and other professionals may be required. These include but are not limited to a child neu-rologist, a neurosurgeon, an ophthalmologist, a nutritionist, a feeding specialist, and a psychol-ogist. Parents of children with cerebral palsy or people with cerebral palsy should be encour-aged to participate actively as part of the team. Please note that though a coordinated team isneeded to manage the range of specialty services required, all children require a medical home.The primary care physician is responsible for preventive and acute illness care and for coordi-nating special services.

Regular members of the child development team include a developmental pediatrician orphysiatrist, a medical social worker, a nurse, an orthopedist, an orthotist, physical and occupa-tional therapists, and a speech-language pathologist.

The initial evaluation should be performed as soon as a diagnosis of cerebral palsy is suspected.The following components are recommended: family, medical, and developmental histories;developmental and behavioral assessments; a physical examination, including neuromotor andmusculoskeletal assessments; and other tests as indicated. Other tests may include X rays andlaboratory tests, a hearing and vision evaluation, an educational evaluation, an assessment ofthe childs communication skills and needs, and a nutrition and feeding evaluation. An initialmanagement plan that is inclusive of all needed services should be developed.

As the child with cerebral palsy grows and develops, additional needs may become evident thatrequire further evaluation or treatment. In general, the primary care physician should review thechilds progress and update the office management plan at least yearly and more often foryoung children and in the first 2 years of treatment. Children with cerebral palsy also requireregular follow-up by the team of specialists. Clear and regular communication among serviceproviders is critical. The child should be reevaluated by the neurodevelopmental team severaltimes per year in the first 23 years, twice annually until the child reaches 5 years of age, andat least annually thereafter.

BasicTeam

InitialEvaluation

Frequencyof Visits

Guidelines for the Care ofChildren and Adolescents with Cerebral Palsy

The Physicians Guide to Caring for Children with Disabilities and Chronic Conditions, edited by Robert E. Nickel and Larry W. Desch, copyright 2000 Paul H. Brookes Publishing Co.

Gui

delin

es f

or t

he C

are

of C

hild

ren

and

Ado

lesc

ents

with

Cer

ebra

l Pal

syTh

e fo

llow

ing

elem

ents

are

rec

omm

ende

d by

age

gro

up, a

nd th

e lis

ting

is c

umul

ativ

e. R

evie

w a

ll ite

ms

indi

cate

d up

thro

ugh

the

actu

al a

ge g

roup

of a

chi

ld e

nter

ing

your

pra

ctic

e fo

rth

e fir

st ti

me

as p

art o

f the

initi

al e

valu

atio

n.

AG

EK

EY C

LIN

ICA

L IS

SUES

/CO

NC

ERN

SEV

ALU

ATI

ON

S/K

EY P

RO

CED

UR

ESSP

ECIA

LIST

S

Gro

wth

par

amet

ers,

die

t rec

ord,

nut

ritio

n an

d fe

ed-

ing

asse

ssm

ent,

eval

uatio

n of

GER

(pH

stu

dy),

mod

ified

bar

ium

sw

allo

w a

s ne

eded

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ial d

iet o

r fe

edin

g pr

ogra

m, m

edic

atio

n (a

cid

bloc

ker

and/

or m

otili

ty a

gent

) or

fund

oplic

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n fo

r G

ERG

astr

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my

as n

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ring

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edic

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ulk

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ular

str

etch

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war

m b

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, ibu

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dia

zepa

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ehav

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ally

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med

icat

ions

Beh

avio

ral t

hera

py, o

ccas

iona

lly m

edic

atio

ns

Eval

uatio

n fo

r m

inor

ano

mal

ies

Cra

nial

mag

netic

res

onan

ce im

agin

g (M

RI)

orco

mpu

ted

tom

ogra

phy

(CT)

sca

n, o

ther

test

ing

as n

eede

d

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wth

/Nut

ritio

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edin

gSl

ow w

eigh

t gai

n or

line

ar g

row

thFa

ilure

to th

rive

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l mot

or d

ysfu

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nG

astr

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phag

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ER)

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tros

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re

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ocia

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Med

ical

Pro

blem

sH

eari

ng a

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isio

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izur

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hron

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espi

rato

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robl

ems/

aspi

ratio

n

Con

stip

atio

n

Mus

cle

cram

ps

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p pr

oble

ms

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olin

g

Not

e si

de e

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ts o

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y m

edic

atio

ns.

Cau

se o

f the

Dis

abili

ty

Bir

th3

yea

rs(in

fant

s an

dto

ddle

rs)

Nut

ritio

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, fee

ding

spe

cial

ist o

r te

am, p

edia

tric

gast

roen

tero

logi

st a

s ne

eded

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iolo

gist

, oph

thal

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ogis

tC

hild

neu

rolo

gist

as

need

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diat

ric

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roen

tero

logi

st a

s ne

eded

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elop

men

tal p

edia

tric

ian

(DPe

d), n

urse

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-ci

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t as

need

ed

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ch-l

angu

age

path

olog

ist a

s ne

eded

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d, m

edic

al g

enet

icis

t as

need

ed

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iew

ora

l hyg

iene

Det

aile

d ne

urom

otor

and

mus

culo

skel

etal

exam

inat

ions

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aile

d ne

urom

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and

mus

culo

skel

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exam

inat

ions

Den

tal C

are

Car

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occl

usio

n

Am

bula

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and

Mob

ility

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d fo

r ph

ysic

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erap

y (P

T) s

ervi

ces

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d fo

r br

acin

g an

d ad

aptiv

e eq

uipm

ent

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ing

and

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tioni

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for

spec

ializ

ed s

eatin

g de

vice

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tist

Phys

ical

ther

apis

t, D

Ped,

ort

hope

dist

, ort

hotis

tas

nee

ded

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ical

ther

apis

t, oc

cupa

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l the

rapi

st,

phys

iatr

ist,

equi

pmen

t ven

dor

as n

eede

d

The

Phys

icia

ns

Gui

de to

Car

ing

for

Chi

ldre

n w

ith D

isab

ilitie

s an

d C

hron

ic C

ondi

tions

,edi

ted

by R

ober

t E. N

icke

l and

Lar

ry W

. Des

ch, c

opyr

ight

2

000

Paul

H. B

rook

es P

ublis

hing

Co.

Gui

delin

es f

or t

he C

are

of C

hild

ren

and

Ado

lesc

ents

with

Cer

ebra

l Pal

sy (

cont

inue

d)

The

follo

win

g el

emen

ts a

re r

ecom

men

ded

by a

ge g

roup

, and

the

listin

g is

cum

ulat

ive.

Rev

iew

all

item

s in

dica

ted

up th

roug

h th

e ac

tual

age

gro

up o

f a c

hild

ent

erin

g yo

ur p

ract

ice

for

the

first

tim

e as

par

t of t

he in

itial

eva

luat

ion.

AG

EK

EY C

LIN

ICA

L IS

SUES

/CO

NC

ERN

SEV

ALU

ATI

ON

S/K

EY P

RO

CED

UR

ESSP

ECIA

LIST

S

Det

aile

d m

uscu

losk

elet

al e

xam

inat

ion,

ass

essm

ent o

ffin

e m

otor

and

vis

ual m

otor

ski

lls

Det

aile

d m

uscu

losk

elet

al e

xam

inat

ion,

hip

X r

ays

at a

ge 2

yea

rs o

r be

fore

, bac

k an

d ot

her

X r

ays

as n

eede

d

Dev

elop

men

tal s

urve

illan

ceR

efer

ral f

or e

ligib

ility

test

ing

for

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ervi

ces

asne

eded

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ily in

terv

iew

, pro

vide

edu

catio

nal m

ater

ials

and

reso

urce

info

rmat

ion,

initi

ate

care

not

eboo

kTe

ache

r in

terv

iew

, sch

ool c

onfe

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e as

nee

ded

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ily in

terv

iew

, par

ent q

uest

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s (e

.g.,

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ilyN

eeds

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, pro

vide

res

ourc

e in

form

atio

nSe

rvic

e co

ordi

natio

n, r

efer

ral t

o co

mm

unity

ser

vice

sas

nee

ded

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er-E

xtre

mity

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ctio

n an

d V

isua

l Mot

or S

kills

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d fo

r oc

cupa

tiona

l the

rapy

ser

vice

sFi

ne m

otor

/vis

ual m

otor

ski

lls

Mus

culo

skel

etal

Pro

blem

sJo

int c

ontr

actu

res

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sub

luxa

tion

or d

islo

catio

nSc

olio

sis

Foot

and

ank

le d

efor

miti

esA

rm a

nd h

and

defo

rmiti

esR

otat

iona

l def

orm

ities

of t

he le

gsO

steo

peni

a an

d fr

actu

res

Com

mun

icat

ion,

Dev

elop

men

tal P

rogr

ess,

Earl

y In

terv

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n (E

I) Se

rvic

esN

eed

for

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ervi

ces

Lang

uage

del

ay o

r sp

eech

dis

orde

rD

evel

opm

enta

l del

ay

Rev

iew

of D

iagn

osis

and

Ant

icip

ator

yG

uida

nce

Info

rmat

ion

on d

iagn

osis

and

man

agem

ent

Rev

iew

the

indi

vidu

aliz

ed fa

mily

ser

vice

plan

(IFS

P) w

ith fa

mily

as

need

edTr

ansi

tion

from

EI t

o ea

rly

child

hood

spe

-ci

al e

duca

tion

(EC

SE) o

r to

com

mun

itypr

esch

ool p

artic

ipat

ion

Prom

ote

self-

care

and

inde

pend

ence

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ily S

uppo

rt S

ervi

ces

Res

pite

Pare

nt g

roup

sC

omm

unity

hea

lth n

urse

Adv

ocac

y (e

.g.,

Uni

ted

Cer

ebra

l Pal

syA

ssoc

iatio

n)Fi

nanc

ial s

ervi

ces

(Sup

plem

enta

l Sec

urity

Inco

me

[SSI

])O

ther

ena

blin

g se

rvic

es

Bir

th3

yea

rs(in

fant

s an

dto

ddle

rs)

(con

tinue

d)

Occ

upat

iona

l the

rapi

st, D

Ped,

ort

hope

dist

as

need

ed

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ical

ther

apis

t, oc

cupa

tiona

l the

rapi

st,

DPe

d; o

rtho

pedi

st a

s ne

eded

and

at l

east

year

ly a

fter

3 ye

ars

of a

ge

Ref

erra

l to

child

dev

elop

men

t tea

m, s

peec

h-la

ngua

ge p

atho

logi

st, o

r ps

ycho

logi

st a

sne

eded

Prim

ary

care

offi

ce in

col

labo

ratio

n w

ith th

ene

urod

evel

opm

enta

l tea

m

Med

ical

soc

ial w

orke

r, r

efer

ral t

o co

mm

unity

heal

th n

urse

as

need

ed

The

Phys

icia

ns

Gui

de to

Car

ing

for

Chi

ldre

n w

ith D

isab

ilitie

s an

d C

hron

ic C

ondi

tions

,edi

ted

by R

ober

t E. N

icke

l and

Lar

ry W

. Des

ch, c

opyr

ight

2

000

Paul

H. B

rook

es P

ublis

hing

Co.

Gui

delin

es f

or t

he C

are

of C

hild

ren

and

Ado

lesc

ents

with

Cer

ebra

l Pal

sy (

cont

inue

d)

The

follo

win

g el

emen

ts a

re r

ecom

men

ded

by a

ge g

roup

, and

the

listin

g is

cum

ulat

ive.

Rev

iew

all

item

s in

dica

ted

up th

roug

h th

e ac

tual

age

gro

up o

f a c

hild

ent

erin

g yo

ur p

ract

ice

for

the

first

tim

e as

par

t of t

he in

itial

eva

luat

ion.

AG

EK

EY C

LIN

ICA

L IS

SUES

/CO

NC

ERN

SEV

ALU

ATI

ON

S/K

EY P

RO

CED

UR

ESSP

ECIA

LIST

S

Com

preh

ensi

ve s

ervi

ce c

oord

inat

ion

with

reg

ular

exch

ange

of w

ritte

n in

form

atio

n (a

t lea

st y

earl

y)w

ith o

ther

ser

vice

pro

vide

rs, c

are

conf

eren

ce

as n

eede

d

Col

labo

ratio

n w

ith C

omm

unity

Ser

vice

sEa

rly

inte

rven

tion

Com

mun

ity h

ealth

nur

seO

ther

com

mun

ity p

rovi

ders

Bir

th3

yea

rs(in

fant

s an

dto

ddle

rs)

(con

tinue

d)

Prim

ary

care

offi

ce in

col

labo

ratio

n w

ith n

euro

-de

velo

pmen

tal t

eam

Det

aile

d m

uscu

losk

elet

al a

nd n

euro

mot

orex

amin

atio

ns, g

ait a

naly

sis

as n

eede

d

Ass

essm

ent o

f lan

guag

e an

d co

gniti

ve s

kills

, eva

lua-

tion

of fi

ne m

otor

dex

teri

ty a

nd s

peed

AA

C c

linic

, pow

er-d

rive

whe

elch

air

asse

ssm

ent

Ass

essm

ent o

f vis

ual a

cuity

as

need

ed

Dev

elop

men

tal s

urve

illan

ce, r

efer

ral f

or e

ligib

ility

test

ing

for

ECSE

as

need

edIn

telle

ctua

l or

educ

atio

nal e

valu

atio

n, a

sses

smen

t of

visu

al p

erce

ptua

l and

vis

ual m

otor

ski

lls a

s ne

eded

and

prio

r to

kin

derg

arte

n en

try

Eval

uatio

n of

func

tiona

l ski

lls (P

EDI o

r W

eeFI

M)

Trea

t con

stip

atio

n fir

st; u

se a

dapt

ive

seat

ing

asne

eded

and

ref

er fo

r vo

idin

g cy

stou

reth

rogr

am(V

CU

G) a

nd u

rody

nam

ics

as n

eede

d

Ora

l mot

or th

erap

y (b

irth

3 y

ears

), ot

her

beha

vior

alth

erap

ies,

med

icat

ion,

and

(rar

ely)

sur

gery

(old

ersc

hool

-age

chi

ld)

Fam

ily a

nd te

ache

r in

terv

iew

s, s

choo

l con

fere

nce

as n

eede

d

Rev

iew

of M

edic

al o

r Su

rgic

al T

reat

men

tA

ppro

ache

s fo

r H

yper

toni

city

Nee

d fo

r Sp

ecia

l Tec

hnol

ogy

Pow

er-d

rive

whe

elch

air

Aug

men

tativ

e an

d al

tern

ativ

e co

mm

unic

atio

n (A

AC

)C

ompu

ter

use

for

wri

tten

wor

k

Dev

elop

men

tal P

rogr

ess,

Ear

ly C

hild

hood

Spec

ial E

duca

tion

(EC

SE) S

ervi

ces

Self-

Car

e/In

depe

nden

ce

Toile

t Tra

inin

g/C

onst

ipat

ion/

Uri

nary

Inco

ntin

ence

Dro

olin

g

Ant

icip

ator

y G

uida

nce

Trea

tmen

t of h

yper

toni

city

Tran

sitio

n to

gra

de s

choo

lR

evie

w IF

SP o

r in

divi

dual

ized

edu

catio

npr

ogra

m (I

EP) w

ith th

e fa

mily

35

year

s(p

res

choo

lag

e)

DPe

d, o

rtho

pedi

st, p

hysi

cal t

hera

pist

, occ

upa-

tiona

l the

rapi

st, n

euro

surg

eon

as n

eede

d

Phys

ical

ther

apis

t, oc

cupa

tiona

l the

rapi

st,

spee

ch-l

angu

age,

pat

holo

gist

, psy

chol

ogis

t,op

htha

lmol

ogis

t as

need

ed

Psyc

holo

gist

, spe

ech-

lang

uage

pat

holo

gist

, or

refe

rral

to c

hild

dev

elop

men

t tea

m a

s ne

eded

Col

labo

rate

with

pre

scho

ol o

r gr

ade

scho

ol s

taff

Phys

ical

ther

apis

t and

occ

upat

iona

l the

rapi

st(fa

mily

and

all

prof

essi

onal

s)

DPe

d, n

urse

spe

cial

ist,

urol

ogis

t as

need

ed

DPe

d, n

urse

spe

cial

ist,

spee

ch-l

angu

age

path

ol-

ogis

t as

need

ed, r

arel

y ot

olar

yngo

logi

st (E

NT)

Prim

ary

care

offi

ce in

col

labo

ratio

n w

ith n

euro

-de

velo

pmen

tal t

eam

The

Phys

icia

ns

Gui

de to

Car

ing

for

Chi

ldre

n w

ith D

isab

ilitie

s an

d C

hron

ic C

ondi

tions

,edi

ted

by R

ober

t E. N

icke

l and

Lar

ry W

. Des

ch, c

opyr

ight

2

000

Paul

H. B

rook

es P

ublis

hing

Co.

Gui

delin

es f

or t

he C

are

of C

hild

ren

and

Ado

lesc

ents

with

Cer

ebra

l Pal

sy (

cont

inue

d)

The

follo

win

g el

emen

ts a

re r

ecom

men

ded

by a

ge g

roup

, and

the

listin

g is

cum

ulat

ive.

Rev

iew

all

item

s in

dica

ted

up th

roug

h th

e ac

tual

age

gro

up o

f a c

hild

ent

erin

g yo

ur p

ract

ice

for

the

first

tim

e as

par

t of t

he in

itial

eva

luat

ion.

AG

EK

EY C

LIN

ICA

L IS

SUES

/CO

NC

ERN

SEV

ALU

ATI

ON

S/K

EY P

RO

CED

UR

ESSP

ECIA

LIST

S

Beh

avio

r ch

eckl

ists

, sch

ool p

rogr

ess

repo

rt,

revi

ew IE

PIn

telle

ctua

l and

ach

ieve

men

t tes

ting

as n

eede

d

Ass

essm

ent o

f fin

e an

d gr

oss

mot

or a

nd fu

nctio

nal

skill

s

Patie

nt e

duca

tiona

l mat

eria

ls

Soci

al s

kills

pro

gram

at s

choo

l as

need

edSe

rvic

e co

ordi

natio

n, r

efer

ral t

o co

mm

unity

re-

sour

ces,

men

tor

prog

ram

Ref

erra

l to

com

mun

ity s

ervi

ces;

pro

vide

edu

catio

nal

mat

eria

ls; c

ondu

ct fa

mily

and

teac

her

inte

rvie

ws,

scho

ol c

onfe

renc

e as

nee

ded

Ass

ocia

ted

Lear

ning

/Beh

avio

r Pr

oble

ms

Lear

ning

dis

abili

tyM

enta

l ret

arda

tion

Atte

ntio

n-de

ficit/

hype

ract

ivity

dis

orde

r(A

DH

D)

Rea

sses

s N

eed

for

Phys

ical

and

Occ

upat

iona

l The

rapy

Ser

vice

s

Patie

nt E

duca

tion

Reg

ardi

ng D

iagn

osis

and

Trea

tmen

t

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al S

kills

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ote

soci

al c

ompe

tenc

eIn

volv

emen

t in

peer

gro

up a

ctiv

ities

at

scho

ol a

nd in

the

com

mun

ity (d

eter

min

ew

hich

sup

port

s ar

e ne

eded

)

Ant

icip

ator

y G

uida

nce

Dis

cuss

dia

gnos

is a

nd m

anag

emen

t w

ith c

hild

Prom

ote

self-

care

and

inde

pend

ence

Rec

reat

ion

and

leis

ure

activ

ities

Rev

iew

IEP

with

fam

ilyTr

ansi

tion

to m

iddl

e sc

hool

612

yea

rs(s

choo

l-ag

e)D

Ped,

psy

chol

ogis

t, sp

eech

-lan

guag

e pa

thol

o-gi

st o

r re

ferr

al to

chi

ld d

evel

opm

ent t

eam

as

nee

ded

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labo

rate

with

sch

ool s

taff

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ical

ther

apis

t, oc

cupa

tiona

l the

rapi

st,

DPe

d, o

rtho

pedi

st a

s ne

eded

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d, n

urse

spe

cial

ist,

phys

ical

ther

apis

t, an

doc

cupa

tiona

l the

rapi

st

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ical

ther

apis

t, oc

cupa

tiona

l the

rapi

st, p

sy-

chol

ogis

t, ad

aptiv

e ph

ysic

al e

duca

tion

spe-

cial

ist a

s ne

eded

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labo

rate

with

sch

ool s

taff

Prim

ary

care

offi

ce in

col

labo

ratio

n w

ith n

euro

-de

velo

pmen

tal t

eam

Ref

erra

l to

phys

ical

ther

apis

t, oc

cupa

tiona

l the

r-ap

ist,

adap

tive

phys

ical

edu

catio

n sp

ecia

list

as n

eede

d

Dri

ver

trai

ning

ass

essm

ent;

asse

ssm

ent o

f cog

nitiv

esk

ills,

vis

ual a

cuity

, and

vis

ual f

ield

s as

nee

ded

Out

patie

nt p

hysi

cal t

hera

py (P

T) a

nd o

ccup

atio

nal

ther

apy

(OT)

ser

vice

s as

nee

ded;

con

side

r in

pa-

tient

reh

abili

tatio

n ev

alua

tion

Inde

pend

ent l

ivin

g sk

ills

prog

ram

, soc

ial s

kills

trai

n-in

g as

nee

ded

Com

mun

ity M

obili

ty a

nd D

rive

r Tr

aini

ng

Self-

Car

e/In

depe

nden

t Liv

ing

Det

erm

ine

whi

ch s

uppo

rts

are

need

ed

132

1 ye

ars

(ado

lesc

ent

and

youn

gad

ult)

Phys

ical

ther

apis

t, oc

cupa

tiona

l the

rapi

st,

phys

iatr

ist,

psyc

holo

gist

, oph

thal

mol

ogis

t as

need

ed

Phys

ical

ther

apis

t, oc

cupa

tiona

l the

rapi

st, p

sy-

chol

ogis

t, m

edic

al s

ocia

l wor

ker,

voc

atio

nal

spec

ialis

t as

need

ed

The

Phys

icia

ns

Gui

de to

Car

ing

for

Chi

ldre

n w

ith D

isab

ilitie

s an

d C

hron

ic C

ondi

tions

,edi

ted

by R

ober

t E. N

icke

l and

Lar

ry W

. Des

ch, c

opyr

ight

2

000

Paul

H. B

rook

es P

ublis

hing

Co.

Gui

delin

es f

or t

he C

are

of C

hild

ren

and

Ado

lesc

ents

with

Cer

ebra

l Pal

sy (

cont

inue

d)

The

follo

win

g el

emen

ts a

re r

ecom

men

ded

by a

ge g

roup

, and

the

listin

g is

cum

ulat

ive.

Rev

iew

all

item

s in

dica

ted

up th

roug

h th

e ac

tual

age

gro

up o

f a c

hild

ent

erin

g yo

ur p

ract

ice

for

the

first

tim

e as

par

t of t

he in

itial

eva

luat

ion.

AG

EK

EY C

LIN

ICA

L IS

SUES

/CO

NC

ERN

SEV

ALU

ATI

ON

S/K

EY P

RO

CED

UR

ESSP

ECIA

LIST

S

Patie

nt e

duca

tiona

l mat

eria

lsG

ynec

olog

ic e

xam

inat

ion

for

sexu

ally

act

ive

wom

enA

dole

scen

t, fa

mily

, and

teac

her

inte

rvie

ws;

sch

ool

conf

eren

ce a

s ne

eded

Car

eer

coun

selin

g, e

valu

atio

n by

voc

atio

nal s

peci

al-

ist a

s ne

eded

Enco

urag

e in

volv

emen

t in

afte

r-sc

hool

and

com

mu-

nity

act

iviti

es, m

ento

r pr

ogra

ms

Ant

icip

ator

y G

uida

nce

Prom

ote

heal

thy

beha

vior

s (e

xerc

ise

pro-

gram

, wei

ght c

ontr

ol, m

uscl

e-st

retc

hing

prog

ram

)Se

xual

ity a

nd b

irth

con

trol

Hig

h-ri

sk b

ehav

ior

Car

eer

plan

ning

and

hig

her

educ

atio

nSo

cial

isol

atio

nTr

ansi

tion

to a

dult

med

ical

ser

vice

s

132

1 ye

ars

(ado

lesc

ent

and

youn

gad

ult)

(con

tinue

d)

Prim

ary

care

offi

ce in

col

labo

ratio

n w

ith n

euro

-de

velo

pmen

tal t

eam

Ref

erra

l to

gyne

colo

gist

as

need

edR

efer

ral t

o D

epar

tmen

t of V

ocat

iona

l Reh

abili

-ta

tion,

men

tal h

ealth

pro

fess

iona

l as

need

ed

The

Phys

icia

ns

Gui

de to

Car

ing

for

Chi

ldre

n w

ith D

isab

ilitie

s an

d C

hron

ic C

ondi

tions

,edi

ted

by R

ober

t E. N

icke

l and

Lar

ry W

. Des

ch, c

opyr

ight

2

000

Paul

H. B

rook

es P

ublis

hing

Co.

Family and Physician Management Plan Summary for Children and Adolescents with Cerebral PalsyThis form will help you and your physician review current services and service needs. Please answer the questionsabout your current services on this page. Your physician will review your responses and complete the rest of the form.

Childs name Todays date

Person completing the form

CURRENT SERVICES

1. Please list your/your childs current medications and any side effects.

2. What braces and special equipment do you/does your child use now?

3. What is your/your childs current school program?

School name Grade

Teacher Telephone

4. Do you/does your child receive any support services and other special programs at school (e.g., physical therapy, resource room)? Please list.

5. Who are your/your childs other medical and dental service providers?

Dentist

Neurologist

Orthopedist

Other


Family and Physician Management Plan Summary for Children and Adolescents with Cerebral Palsy (continued)

6. Who are your/your childs other community service providers?

Physical therapist

Community health nurse

Other

7. Do you/does your child also receive services from a neurodevelopmental team of specialists?

Contact person

Location

8. Have you/has your child had any blood tests, radiologic (X-ray) examinations, or other proce-dures since your last visit? If yes, please describe.

9. Have you/has your child been hospitalized or undergone surgery since your last visit? If yes,describe.

10. Please note your/your childs accomplishments since your last visit. Consider activities athome, in your neighborhood, or at school, as well as success with treatments.

11. What goals (i.e., skills) would you/your child like to accomplish in the next year? Consider ac-tivities at home, in your neighborhood, or at school, as well as success with treatments.

12. What questions or concerns would you like addressed today?


Fam

ilys

Que

stio

ns

Gro

wth

/Nut

ritio

n/Fe

edin

g

Feed

ing

prob

lem

sSl

ow w

eigh

t gai

n, li

near

gro

wth

Que

stio

ns a

bout

spe

cial

ized

feed

ing,

gas

tros

tom

y ca

re

Ass

ocia

ted

Med

ical

Pro

blem

s

Rec

urre

nt r

espi

rato

ry p

robl

ems

or a

spir

atio

nG

astr

oeso

phag

eal r

eflu

x (G

ER)

Seiz

ures

Toile

t tra

inin

g (a

sses

s ne

ed fo

rad

aptiv

e se

atin

g)C

onst

ipat

ion,

uri

nary

inco

ntin

ence

Dro

olin

gM

uscl

e cr

amps

Hea

ring

loss

Stra

bism

us/v

isua

l pro

blem

sSl

eep

diso

rder

, sle

ep a

pnea

Not

e an

y si

de e

ffec

ts o

fm

edic

atio

ns.

Cau

se o

f the

Dis

abili

ty

Fam

ily a

nd P

hysi

cian

Man

agem

ent

Plan

Sum

mar

y fo

r C

hild

ren

and

Ado

lesc

ents

with

Cer

ebra

l Pal

syTh

e M

anag

emen

t Pla

n Su

mm

ary

shou

ld b

e co

mpl

eted

at e

ach

annu

al r

evie

w a

nd m

ore

ofte

n as

nee

ded.

It is

inte

nded

to b

e us

ed w

ith th

e G

uide

lines

for

Car

e, w

hich

pro

vide

a m

ore

com

plet

e lis

ting

of c

linic

al is

sues

at d

iffer

ent a

ges

and

reco

mm

ende

d ev

alua

tions

and

trea

tmen

ts.

Chi

lds

nam

e Pe

rson

com

plet

ing

form

To

day

s da

te

Cur

rent

ly a

Ev

alua

tion

s Tr

eatm

ent

Dat

e fo

r

Clin

ical

issu

espr

oble

m?

need

edre

com

men

dati

ons

Ref

erra

ls m

ade

stat

us c

heck

The

Phys

icia

ns

Gui

de to

Car

ing

for

Chi

ldre

n w

ith D

isab

ilitie

s an

d C

hron

ic C

ondi

tions

,edi

ted

by R

ober

t E. N

icke

l and

Lar

ry W

. Des

ch, c

opyr

ight

2

000

Paul

H. B

rook

es P

ublis

hing

Co.

Fam

ily a

nd P

hysi

cian

Man

agem

ent

Plan

Sum

mar

y fo

r C

hild

ren

and

Ado

lesc

ents

with

Cer

ebra

l Pal

sy(c

ontin

ued)

Chi

lds

nam

e Pe

rson

com

plet

ing

form

To

day

s da

te

Cur

rent

ly a

Ev

alua

tion

s Tr

eatm

ent

Dat

e fo

r

Clin

ical

issu

espr

oble

m?

need

edre

com

men

dati

ons

Ref

erra

ls m

ade

stat

us c

heck

Den

tal C

are

Am

bula

tion

and

Mob

ility

Des

crib

e cu

rren

t am

bula

tory

sta

tus

Que

stio

ns a

bout

phy

sica

lth

erap

y, b

race

s, a

dapt

ive

equi

pmen

tN

eed

for

pow

er-d

rive

whe

elch

air

Seat

ing

and

Posi

tioni

ng

Upp

er-E

xtre

mity

Fun

ctio

n an

dV

isua

l Mot

or S

kills

Mus

culo

skel

etal

Pro

blem

sR

ecen

t cha

nge

in c

ontr

actu

res,

gait,

sco

liosi

s

Ass

ocia

ted

Dev

elop

men

tal o

r Le

arni

ng Is

sues

Cur

rent

sch

ool a

chie

vem

ent

Rev

iew

ear

ly in

terv

entio

n (E

I) or

scho

ol s

ervi

ces

(indi

vidu

aliz

edfa

mily

ser

vice

pla

n [I

FSP]

or

indi

vidu

aliz

ed e

duca

tion

prog

ram

[IE

P])

Dev

elop

men

tal d

elay

or

men

tal

reta

rdat

ion

Lear

ning

dis

abili

ties

The

Phys

icia

ns

Gui

de to

Car

ing

for

Chi

ldre

n w

ith D

isab

ilitie

s an

d C

hron

ic C

ondi

tions

,edi

ted

by R

ober

t E. N

icke

l and

Lar

ry W

. Des

ch, c

opyr

ight

2

000

Paul

H. B

rook

es P

ublis

hing

Co.

Fam

ily a

nd P

hysi

cian

Man

agem

ent

Plan

Sum

mar

y fo

r C

hild

ren

and

Ado

lesc

ents

with

Cer

ebra

l Pal

sy(c

ontin

ued)

Chi

lds

nam

e Pe

rson

com

plet

ing

form

To

day

s da

te

Cur

rent

ly a

Ev

alua

tion

s Tr

eatm

ent

Dat

e fo

r

Clin

ical

issu

espr

oble

m?

need

edre

com

men

dati

ons

Ref

erra

ls m

ade

stat

us c

heck

Ass

ocia

ted

Beh

avio

r/M

enta

l H

ealth

Pro

blem

s

Soci

al S

kills

Invo

lvem

ent i

n pe

er g

roup

ac

tiviti

es in

sch

ool a

ndco

mm

unity

(det

erm

ine

whi

chsu

ppor

ts a

re n

eede

d)

Self-

Car

e/In

depe

nden

ce

Fam

ily S

uppo

rt S

ervi

ces

Trea

tmen

t of H

yper

toni

city

Com

mun

icat

ion/

Spee

ch

Que

stio

ns a

bout

spe

ech

serv

ices

Nee

d fo

r au

gmen

tativ

e an

d al

tern

ativ

e co

mm

unic

atio

n (A

AC

) dev

ice(

s) o

r a

com

pute

rfo

r w

ritte

n co

mm

unic

atio

n

The

Phys

icia

ns

Gui

de to

Car

ing

for

Chi

ldre

n w

ith D

isab

ilitie

s an

d C

hron

ic C

ondi

tions

,edi

ted

by R

ober

t E. N

icke

l and

Lar

ry W

. Des

ch, c

opyr

ight

2

000

Paul

H. B

rook

es P

ublis

hing

Co.

Ant

icip

ator

y G

uida

nce

List

issu

es d

iscu

ssed

and

m

ater

ials

pro

vide

d

Col

labo

ratio

n w

ithC

omm

unity

Age

ncie

s

Scho

ol

Com

men

ts

Nex

t upd

ate

of th

e M

anag

emen

t Pla

n Su

mm

ary

Sign

atur

e D

ate

(Chi

ld a

nd p

aren

t)

Sign

atur

e D

ate

(Hea

lth p

rofe

ssio

nal)

Fam

ily a

nd P

hysi

cian

Man

agem

ent

Plan

Sum

mar

y fo

r C

hild

ren

and

Ado

lesc

ents

with

Cer

ebra

l Pal

sy(c

ontin

ued)

Chi

lds

nam

e Pe

rson

com

plet

ing

form

To

day

s da

te

Cur

rent

ly a

Ev

alua

tion

s Tr

eatm

ent

Dat

e fo

r

Clin

ical

issu

espr

oble

m?

need

edre

com

men

dati

ons

Ref

erra

ls m

ade

stat

us c

heck

The

Phys

icia

ns

Gui

de to

Car

ing

for

Chi

ldre

n w

ith D

isab

ilitie

s an

d C

hron

ic C

ondi

tions

,edi

ted

by R

ober

t E. N

icke

l and

Lar

ry W

. Des

ch, c

opyr

ight

2

000

Paul

H. B

rook

es P

ublis

hing

Co.

Musculoskeletal Examination Scoring Form

Childs name Date of birth Todays date

Diagnosis

Equipment/braces

Surgeries

Examiner

A. Structural changes1. Joint contractures: Rate 0 (none), 1(present), 2 (severe)a

Hip R L Elbow R LKnee R L Forearm R LAnkle R L Wrist R LToes R L Thumb R LShoulder R L Fingers R L

Please describe type of contracture (e.g., hip flexion contracture)

2. Straight-leg raising (popliteal angle): Rate 0 (full), 1 (limited), 2 (severely limited)R L

3. Hip subluxation or dislocation: Rate 0 (not present), 1 (suspect), 2 (definite)R L

4. Spine changes: Rate 0 (not present), 1 (present), 2 (severe) Scoliosis Lordosis Kyphosis

5. Leg-length discrepancy in supine (in centimeters): R LClinical difference in stance (in centimeters):

6. Foot and ankle deformities: Rate 0 (not present), 1 (present), 2 (severe)R L

Describe type

7. Rotational abnormalities of legs: Rate 0 (none), 1 (present), 2 (severe) Femoral anteversion R LInternal or external tibial torsion R L

8. Arm and/or hand deformities: Rate 0 (not present), 1 (present), 2 (severe)R L

Describe type

(continued)


a The normal range of motion for different joints is given in Section E at the end of this form. In general, a ratingof severe or severely limited for any of the test items reflects a problem that has a marked impact on function. For ex-ample, a hip flexion contracture of greater than 30 usually makes independent standing and walking very difficult.

Musculoskeletal Examination Scoring Form (continued)

9. Congenital defects Rate 0 (not present), 1 (present), 2 (severe)R L Please describe

B. Muscle tone and strength

1. Trunk in sitting: Rate 0 (sits with trunk erect), 1 (trunk rounded, occasional use of hands forsupport), 2 (requires hands for support in sitting), or 9 (not able to sit)

Tone StrengthRate 0 (normal), Rate 0 (normal), 1 (definite hypertonicity), 1 (definite weakness), 2 (severe hypertonicity), or 2 (severe weakness), or9 (hypotonicity) 9 (cannot evaluate)

2. Upper extremityHand grip R LShoulder extensors R LBiceps/brachioradialis R LPronator teres R L

3. Lower extremityHip adductors R LRectus femoris R LHamstrings R LGastrocnemius/soleus R LClonus present? R LAnkle dorsiflexion R LComing to stand

(or coming to tall kneel) R LOne-leg standing

(hip abductors) R LWalking on heels R LWalking on toes R L

4. Other activitiesWheelbarrow walk

(or crawling) R LPush-up R LSit-up R L

C. Upper-extremity function1. Involuntary movement, dysmetria, or dystonia

Please describe and note impact on function

2. Active range of motion: Rate 0 (full), 1 (limited), 2 (severely limited)Elbow extension R LSupination R LWrist extension R LThumb abduction R L Thumb extension R L Finger extension R L

(continued)



Rate 0 (adequate), 1 (inadequate), 2 (severely impaired)3. Grasp/release of block R L

Pincer grasp R L

D. Observation of gait

1. StandingRate 0 (not present), 1 (definite), Rate 0 (adequate), 1 (inadequate),2 (severe) 2 (severely impaired)

Pelvic obliquity, retraction,or anterior tilt R L Standing balance

Hip adduction R LCrouch (hip and

knee flexion) R L Base of support (centimeters)In or out toeing R LEquinus R LOther foot and/or

ankle deformities R L

Comments

2. Walking without bracesRate 0 (not present), 1 (definite), Rate 0 (adequate), 1 (inadequate), 2 (severe) 2 (severely impaired)

Exaggerated truncal swaywith pelvic drop R L Clearance of foot R L

Pelvic obliquity,retraction, or anterior tilt R L Step length R L

Stability R L Velocity R LHip adduction R L Arm swing/posture R LCrouch (hip and

knee flexion) R LIn or out toeing R LEquinus R LOther foot and/or


Comments

3. Walking with bracesRate 0 (not present), 1 (definite), Rate 0 (adequate), 1 (inadequate),2 (severe) 2 (severely impaired)

Exaggerated truncal swaywith pelvic drop R L Clearance of foot R L

Pelvic obliquity or anterior tilt R L Step length R L

Hip adduction R L Stability R L

(continued)



Crouch (hip and knee flexion) R L Velocity R LIn or out toeing R L Arm swing/posture R LEquinus R LOther foot and/or


Comments (Note the presence of ataxia, involuntary movement, or dystonia. List currentbraces and assistive devices, and note any differences when wearing braces.)

4. Ambulatory status (please circle)Community ambulator Walks without braces or aids or Walks with braces or other aids, no wheelchair or Walks with braces or other aids, uses wheelchair for long distancesHousehold ambulator Walks with braces or other aids in home or school (classroom) only and Uses wheelchair for long distancesNonfunctional ambulator Walks with braces or other aids only in therapy and Scoots or crawls and uses wheelchair for mobilityNonambulator Rolls, scoots, or crawls and uses wheelchair for mobility Nonindependent mobility

E. Range of motionb

Hip 130o flexion to 0o10o extension20o30o adduction to 60o abduction (with hips flexed)c

40o50o internal to 30o45o external rotationKnee 120o150o flexion to 5o10o extensionAnkle 20o30o dorsiflexion to 40o50o plantarflexionShoulder 150o170o forward flexion to 40o extension

95o internal to 40o60o extensionElbow 150o flexion to 0o10o extensionForearm 80o90o pronation to 8090 supinationWrist 50o60o flexion to 35o60o extension

b Data from Hall, Froster-Iskenius, and Allanson (1989, pp. 281285).c Data from Joint Motion Method of Measuring and Recording, American Academy of Orthopedic Surgeons

(1965, pp. 8485).


Guidelines Of Care CerebralPalsy

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