welcome packet for new families

7/29/2019 Welcome Packet for New Families

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2/13

Families for HoPE has many ways for you to be involved with us and to connectwith other families, to get or to give support and encouragement, and to educateeach other and the public about holoprosencephaly. We encourage you to explorethem, join them, and post them on your pages, blogs or websites. The more postsFamilies for HoPE receives, the better our internet presence is, and then Families for

HoPE can be found first as the face of HoPE in holoprosencephaly, rather than thediscouraging medical reviews many of us found first.

*Website:www.familiesforhope.orgPlease register here if you havent already for info, gifts & to beput on the mailing list for fundraisers, conferences, studies, etc.

*Facebook pages:Families for HoPE: for families affected by HPE (members only)Holoprosencephaly and Families for HoPE, Inc. (public site)Families for HoPE, Inc. (public site)

Families for HoPE: missing our kids! (members only)Creating awareness of Holoprosencephaly Cause Page

*Yahoo Forums:[email protected]

*Fundraisers:We have annual fall fundraisers at which we sell our logo magnets,

window clings, bracelets, t-shirts, hats and more. We like to sell awareness items tohelp get the word out about our group and our kids.

*Family Conferences:We have bi-annual family conferences in conjunction with the National

Institutes of Health, The Carter Centers for Brain Research on Holoprosencephalyand the Kennedy Krieger Institute. The location varies each year, as do the topicsand attendees. These are an excellent way to learn more about HPE and to connectwith the friends you have made online. They are an informative as well as relaxingtime to meet the families, see how other families cope and to make new friends.

Again, we welcome you and invite you to join us in whatever way you feel

comfortable. If you have further questions, please call us at the number above, findus online, or e-mail us [email protected].

We look forward to getting to know you, your child and your family better!

Sincerely,

Your friends at Families for HoPE, Inc.
http://www.familiesforhope.org/http://www.familiesforhope.org/http://www.familiesforhope.org/mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]://www.familiesforhope.org/


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Families for HoPE Child Database Information SheetPlease complete as much as you feel comfortable sharing. We do not give this information to anyone,nor is our database visible to the public. Please fill out and return to [email protected].

Childs Full Name:Gender:Degree of Severity:

Date of Childs Birth:When Diagnosed? Pre-natal/ Post-natalage:

Primary Contact Info:Name:Relationship to child:E-mail Address:Cell Phone:Street Address:City, State, Zip:Daytime Phone Number:

Evening Phone Number:Facebook Name:

Date of Childs Death:Scans seen by Carter Centers? Y N

Primary Language Spoken in Home:Primary Hospitals:

Secondary Contact Info:Name:Relationship to child:E-mail Address:Cell Phone:Street Address:City, State, Zip:Daytime Phone Number:

Evening Phone Number:Facebook Name:

Siblings names/ages:Childs or Familys Website/blog:Would you like us to publish your site on our website or blog? Y NWould you be willing to support other families through parent-to-parent contact? Y NWould you be willing to volunteer for Families for HoPE? Y N

Please list any specific areas of interest:

Please briefly note any further information about your child you are comfortable sharing,such as: Hearing Impairment: profound bilaterally; or Feeding Type: oral, soft purees only.(We gather this information to better match our families in parent-to-parent support,and to inform you of studies in which you might be interested in participating.)

Diagnosed Chromosome/Genetic Abnormality:

Sleeping Issues:

Neurological Issues:

Endocrine Issues:

Cranial Deformities:Facial Clefts:

Vision Impairment:

Hearing Impairment:

Dental Issues:

Feeding Type:

Digestive System Disorders:

Hepatic Disorders:

Renal/Urinary Issues:

Movement issues:

Neuromuscular Issues:

Orthopedic/Musculoskeletal:Therapies performed:

Cardiac/Circulatory Issues:

Pulmonary/Respiratory Issues:

Hematologic/Immunologic Issues:

Allergies:

Other Secondary Conditions or Issues not listed:


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Cleft Lip or Palate

Because HPE is a midline defect, some infantsare born with a cleft lip and/or cleft palate.Surgical repair of the lip and/or palate maybe considered, particularly to make feedingeasier. It should be noted, however, thatfeeding problems might not be eliminated bythe repair of the clefting, and the repairsurgery can often affect the childs breathing.Repair of a cleft lip &/or palate is suggested

between 6-12 months of age, to allow thetissue to grow enough to complete the repair.Consideration should also be given tostability of airway, risk of infection, etc.

Feeding

Feeding can be a major challenge for manyinfants and children with HPE. Many showslowness in eating, frequent pauses whileeating, and rapid loss of interest. Spitting upor vomiting may occur after feedings, andthere is a risk of aspiration into the lungs.Alternate feeding methods may be veryhelpful such as tube feedings. For somechildren, swallowing and chewing can beimproved through an intensive course ofVitalStim therapy performed by a qualifiedspeech or feeding therapist.

Gastrostomy Tube (G-Tube)

When oral feeding becomes too difficult, a g-

tube (gastrostomy tube) may be considered.This is a tube placed through the abdominalwall into the stomach so that liquid feedingsand medications can be put directly into thestomach. If gastroesophageal reflux orvomiting is present, another procedure calleda nissen fundoplication may be performed totighten the inlet to the stomach. These twosurgeries are typically performed at the sametime.

Intestinal Gas

Infants and children with HPE commonlyhave problems handling intestinal gas dueto excessive air swallowing. Frequentburping during and following feedings canoften relieve this discomfort. A variety ofmedications can help to decrease the gasand/or promote stomach emptying.

Elimination

Constipation can be common, especially forthose children with high muscle tone,spasticity, and for those who do not moveas much as a typical child. This problemcan often be improved by medication,altering the diet or by using suppositories.

Fluid Balance Diabetes Insipidus

Many children with HPE have a condition

known as Diabetes Insipidus (DI) which iswhen the kidneys are unable to conservewater. Symptoms to watch for are: veryheavy diapers (high urine output) andexcessive thirst. Once diagnosed, the signsof DI are irritability, water retention anddehydration. In some children with HPE,DI is able to be managed by strict control offluid intake. In other children, hormonereplacement therapy is effective.

Temperature Control

Temperature control can be quite erratic ininfants and children with HPE. Elevatedtemperatures may occur in the absence ofinfection or other definable cause. At othertimes, the body temperature may be sub-normal for no apparent reason. Adjust-ments in the child's environment may behelpful in keeping the child's temperaturewithin a normal range.

Common Conditions Secondary to HPE

Most children with

Holoprosencephaly

have many

other challenges,

some related to

the HPE and some

related to the

underlying cause

of their HPE.


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Motor Skills

Virtually all infants and children with HPE

have deficiencies in motor skills. There aresome children with HPE who are successfulin walking or crawling. Others are able touse assistive devices (walkers, gait trainers,etc.) to achieve independent mobility whileothers are wheelchair dependent. Headcontrol can be difficult for infants andchildren. Reaching and grabbing are seen insome infants and children. Most childrenwith HPE who do improve their motor skillsdo so at a slow and quite delayed pacecompared to typical children. Physical andoccupational therapies are commonlyrecommended and can bring improvement.

Hypertonicity

Often, children with HPE have increasedmuscle tone to the point of spasticity.Spasticity is often evident when the child isstimulated, excited, or in distress. Archingof the back, thrusting of the legs and flexingof the arms are common in these

circumstances. When relaxed, they mayappear "floppy" due to poorly developedcontrol of their muscles.

Microcephaly/Hydrocephaly

The brain of an infant or child with HPE isoften quite small. If there is no excess ofcerebrospinal fluid around the brain, thehead is also small (microcephaly). Whenthere is excess cerebrospinal fluid, the headsize may appear to be normal or enlarged.Head enlargement can make caring for thechild quite difficult and excess fluid canresult in pain and discomfort to the child.An operation may be recommended toshunt the fluid by way of fine tubing fromthe head to another part of the body, such asthe abdomen, where the fluid can beabsorbed back into the blood stream.

Seizures

Many children with HPE are susceptible to

seizures. There are various types of seizures,and frequency of seizures may changeconsiderably over time. Many children withHPE who are affected by seizures respondwell to anticonvulsant medications. Thereare many such medications on the market,and the child's neurologist will determinewhich medication or combination ofmedications will be best for treating thechild's seizures.

Sleeping ProblemsChildren with HPE frequently havedifficulties sleeping, falling asleep or stayingasleep. The hypothalamus helps to set theawake/sleep cycles. Bedtime sedatives havebeen beneficial for some children, but manyfamilies have an ongoing struggle with thisproblem. Many children with HPE havesome degree of sleep apnea as well, eithercentral (caused by the brain) or obstructiveapnea that may or may not be able to be

controlled.

Breathing Issues

Many children with HPE have issues withbreathing of some variety. This can rangefrom a mild case of tracheomalasia (floppywindpipe) that the child might outgrow ashe/she ages, to a more advanced case ofstridor (noisy breathing), to a severe case ofbreathing obstruction in the nose or throatrequiring a tracheostomy (breathing tube).

Smell

It is often said that children with HPE do nothave a sense of smell. This is perhaps due tothe improper formation of the olfactorynerves and nasal cavities. This is not alwaysthe case, however, and many children withHPE are able to enjoy smelling the roses.

A child with

Holoprosencephalymight have none,

some or many of

these additional

challenges,

or they might

have other issues

not listed here


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Language

Full development of language is not usually

seen in children with HPE; however, thereare children who can communicate with alimited vocabulary of words and phrasesand/or body language. Some children withHPE can understand sign language and usesimple signs to express themselves. Avariety of high and low tech augmentativecommunication devices can also be effectivefor a child with HPE to help communicatewith others.

Hearing

Virtually all children with HPE demonstratethat they can hear. They react to noises,learn to turn their heads to sound, and intime develop the ability to recognize certainvoices and noises and react to those soundsin predictable ways. The children with HPEwho are deaf or hard of hearing usuallyhave additional conditions that might havecause the hearing loss.

Vision

Unless the eyes are involved in themalformation, children with HPE usuallydemonstrate the ability to see. They canfocus on faces and objects, develop theability to track moving objects, and respondto facial expressions. The time at whichthese abilities appear is often delayed fromthe normal schedule of development. Somechildren with HPE have a condition calledCortical Vision Impairment (CVI). This iswhere the optic nerves are small andunderdeveloped, causing less information tobe sent to the brain, thus causing more of achallenge for the brain to interpret what isbeing seen. Many children with CVI andHPE make visual progress with the help ofvision therapy.

Startle Reflex

Many children with HPE show signs of an

overdeveloped startle reflex. They arestartled easily and jump what might beconsidered a small scare. This is oftenconfused with infantile spasms and childrencan have a combination of both.

Cognition

Many children with HPE have shownevidence that they can learn and remember.They can anticipate games that involve

touching or tickling and can recognizefamiliar voices and sounds. Some childrenhave proven the ability to learn colors andshapes, and other basic information.This capability is somewhat determined bythe severity of the HPE and relatedformation of the brain, but can also beaffected by the amount and intensity ofearly intervention. Most children with HPEhave shown that they comprehend speechand can communicate this understandingthru simple facial expressions, vocalizations

and some speech or movement. Also, manychildren are able to use simple switchdevices to help communicate, facilitate playand other interactions.

DisclaimerFamilies for HoPE, Inc. is a nonprofit organization formed byfamilies of individuals diagnosed with holoprosencephaly(HPE) and related brain malformations to provide support,education and otherwise address the needs of families andindividuals with HPE. Families for HoPE, Inc. does not

provide medical advice or diagnoses. Information andcomments contained in this paper reflect the personalopinions of the author and are based upon the author'sexperience and education. The author is not a doctor and hasno medical expertise in diagnosing or treating HPE or anyother medical or psychological conditions. Nothing in thisdocument should be construed as medical advice and youshould absolutely not make any changes in medical treatmentwithout consulting your or your child's treating physician ormental health care professional.

If you think your

child has any ofthese additional

conditions, please

see the appropriate

specialist to help

with diagnosis and

treatment


7/13

BMPThe basic metabolic panel (BMP) is a set ofseven to eight blood tests that measurecertain nutrients and electrolytes essential forbasic body functions. The basic metabolicpanel typically measures the serum or plasmalevels of sodium, potassium, chloride, andbicarbonate in the body. The BMP is also usedto test other electrolytes such as: blood ureanitrogen (BUN), creatinine, and glucose tocheck for or rule out diabetes or kidney

disease.

CBCA complete blood count (CBC) is a commonblood test used to evaluate overall health anddetect a wide range of disorders, includinganemia and infection. The test measures: Hemoglobin, the oxygen-carrying protein

in red blood cells

Hematocrit, the proportion of red bloodcells to plasma in the blood

White blood cells, which fight infection Platelets, which help with blood clotting

A complete blood count may be done as partof a routine medical examination. Abnormalincreases or decreases in cell counts mayindicate an underlying medical condition thatwarrants further evaluation.

CT ScanA "CT" or "CAT" scan are the common termsfor "computerized tomography" (orcomputed axial tomography). The CTscanner is a doughnut-shaped machine thatuses advanced x-ray technology to take cross-section pictures of your body, called "slices."A CT scan can visualize the brain and otherparts of the body that cannot be seen onregular x-ray examinations.

What to expect? Your child may need to besedated for this test, because they need toremain extremely still, and an IV may needto be started. You may be able to watch theprocedure from an area shielded fromradiation.

EEGAn electroencephalogram (EEG) is a testthat measures the electrical activity in the

brain, called brain waves. An EEGmeasures brain waves through small buttonelectrodes that are placed on your child'sscalp. An EEG is a painless recording of thebrains electrical activity. Small gold cups,called electrodes, will be used to listen toyour childs brain waves. These will NOTshock your child.

What to expect? Your childs physicianmay request that your child be sleepdeprived for this test. The technologist

measures and marks 30 spots on yourchilds head. This is done through the hair,and no hair needs to be removed. Thesemarks indicate where the 30 electrodes willbe applied. The electrode sites need to bevery clean in order to get the best recordingpossible, so the sites are rubbed with a mildcleanser and a paste or glue will be used toapply the electrodes to your childs head.The application procedure takes around 30minutes, and your childs head needs to bestill for the whole procedure. The length oftime the EEG is recorded depends on whattest your childs doctor has ordered. At theend of the recording, the technologist willpainlessly remove the electrodes with wateror solvent, depending on what was used toput on the electrodes.

Common Medical Tests

Children with

Holoprosencephaly

often have many

additional

complications,

so chances are

your child will

require some ormany of these tests

based on their

individual needs


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EchocardiogramAn echocardiogram (ECG) is a painless,non-invasive test that uses ultrasound tostudy the structure and function of theheart. There is no radiation involved in thistest.

What to expect? An ECG is very similar toan ultrasound you experienced duringpregnancy. Your child will be placed on atable in a regular doctor's examinationroom, not an operating room. Conductivegel will be placed on your childs chest, andthen a transducer will be placed on top of

the gel. The transducer is able to "broadcast"high frequency sound waves into yourchilds chest cavity. These sound wavesbounce off of the heart and the results, orechoes, are picked up on the ECG machine,which makes pictures based on the soundwaves. An echocardiogram usually takesbetween 30 minutes and an hour, in orderfor the doctor to perform a thoroughexamination of the heart's function.

Lumbar PunctureA lumbar puncture (an LP) is the insertionof a needle into the fluid within the spinalcanal. It is termed a "lumbar puncture"because the needle goes into the lumbarportion (the "small") of the back. An LP ismost commonly done for diagnosticpurposes, namely to obtain a sample of thefluid in the spinal canal (the cerebrospinalfluid) for examination.

MRIMRI (magnetic resonance imaging) is adiagnostic procedure that uses acombination of a large magnet, radiofrequencies, and a computer to producedetailed images of organs and structureswithin the body.

What to expect? Due to the need to remainquite still, your child may need to besedated for this test and an IV may need to

be started. Jewelry, glasses and objectscontaining metal must be removed prior tothe procedure. The technicians need to beinformed if your child has any metalimplants or objects in his/her body (suchas a cochlear implant).

Sleep StudyA sleep study or polysomnogram (PSG), isa non-invasive, painless test that records

and measures various functions duringvarious stages of sleep. Small electrodesare placed on numerous areas of the body(head, face, chest, legs) to monitor specificmeasurements of breathing, brain activity,muscle movements, eye movements andleg movements while your child issleeping.

What to expect? You will typically bringyour child to the study location in theevening, in order to spend the night at the

facility. You will prepare your child for bed,and the technician will place numerouselectrodes on the childs body. Then, thechild needs to sleep a typical nightssleep for the study to be accurate. Similarin process to an EEG, all measurements aretaken using sticky electrodes or probes, andbelts around your childs chest. These willNOT shock your child. There is usually acamera in the room as well, so they recordthe movement and activity or your childthroughout the night, to correlate with the

electronic results. You should be able tosleep in the room with your child.

The results will not be given immediately,but will typically return in several weeksafter your childs study has been read andanalyzed. At that point, depending on theresults, further action or studies may berecommended.

Most of these tests

are fairly

non-invasive,

but please

keep in mind,

your child might

require additional

special treatment

during a test

due to his or her

specific

physical needs,

personality or

concerns


9/13

Swallow StudyA videofluoroscopic swallow study (alsocommonly referred to as modified barium

swallow study) is an objective assessment ofswallow function. The test is performedwith both a pediatric radiologist and speechlanguage pathologist with specializedtraining in pediatric dysphagia. Thepurpose of the test is to assess for aspiration(food/liquid entering the trachea) duringoral feeding.

What to expect? You may remain with yourchild during the testing. You child will bepositioned in a typical feeding position

consistent with his/her age & development.Your child will be given a variety of foodconsistencies (thin liquid, thick liquid,puree, soft solid, hard solid) injected withbarium. The study assesses all 3 phases ofthe swallow from the oral preparatoryphase, oral initiation phase and thepharyngeal phase.

Upper GI EndoscopyThis is a procedure for looking inside theupper gastrointestinal tract which includesthe esophagus, the stomach, and theduodenum, the beginning of the smallintestine. Upper GI endoscopy is performedby a gastroenterologist, who uses anendoscope to diagnose and, in some cases,treat problems of the upper digestivesystem. An endoscope is a long, thin,flexible tube with a tiny video camera andlight on the end. By adjusting the various

controls on the endoscope, thegastroenterologist can safely guide theinstrument to carefully examine the insidelining of the upper digestive system. Thehigh quality picture from the endoscope isshown on a TV monitor giving a clear,detailed view of the upper GI.

What to expect? The physician may requirethat food and water be withheld in thehours prior to the procedure becauseanesthesia will be required for theprocedure. An anesthesiologist shouldspeak with you prior to the procedure toobtain medical history. You may be allowedto be present with your child during theprocedure, and you may be asked to wear asurgical gown over your clothing. Mostphysicians explain each step of theprocedure as they go along and will provideyou with color photos of the varioussections of your childs upper GI tract. Thephysician may use the endoscope to take

tissue biopsies to test for bacteria orinfection, and as a result, if your child has ag-tube, you may notice some brown bloodparticles in the stomach residual when youresume your childs feedings. Following theprocedure, your child is taken to a recoveryarea for observation. Once your child isawake and responding, you will be allowedto leave.

DisclaimerFamilies for HoPE, Inc. is a nonprofit organization formed byfamilies of individuals diagnosed with holoprosencephaly(HPE) and related brain malformations to provide support,education and otherwise address the needs of families andindividuals with HPE. Families for HoPE, Inc. does not

provide medical advice or diagnoses. Information andcomments contained in this paper reflect the personalopinions of the author and are based upon the author'sexperience and education. The author is not a doctor and hasno medical expertise in diagnosing or treating HPE or anyother medical or psychological conditions. Nothing in thisdocument should be construed as medical advice and youshould absolutely not make any changes in medical treatmentwithout consulting your or your child's treating physician ormental health care professional.

We encourage

you to be

a strong advocate

for your child:

Speak Out

and

Speak Loud

especially

if you have any

questions,

concerns or

complaints


10/13


11/13

Agenesis of the Corpus CallosumActivities of Daily LivingAnkle Foot Orthotic (stationary)AmountActive Range of MotionAugmentative communication/aug. commTwice dailyBi-level Positive Airway PressureBowel MovementBlood PressureChildrens Aid ProgramComplete Blood Count (lab test)Congenital Heart DefectChromosomeCochlear ImplantCleft LipCleft Lip and PalateCase ManagerCentral Nervous SystemCerebral PalsyContinuous Positive Airway PressureCardiopulmonary ResuscitationChest PhysiotherapyComputed Tomography ScanCortical Vision ImpairmentDiscontinueDynamic Ankle Foot Orthotic (hinged)DischargeDept. of Health & Human ServicesDiabetes Insipidus

Durable Medical EquipmentDo Not ResuscitateDevelopmental Therapy/TherapistDiptheria, Tetanus & Pertussis vaccineDiagnosisElectrocardiogramEchocardiogramElectroencephalogramEarly InterventionEar, Nose, and ThroatFailure to ThriveGastrointestinalGastrostomy Jejunostomy TubeGram

Gastrostomy Tube/ButtonHead CircumferenceHepatitis B vaccineHearing ImpairmentHaemophilus influenzae, type B vaccineHoloprosencephalyIntake & OutputIndividualized Education PlanIndividualized Family Service PlanInfantile SpasmsIntravenous

Jejunostomy Tube

LELOCmcgmg

MHMIH-V

mlMMR

MR/DDMRI

NG TubeNICUNICN

NIHNPO

NSO2

OG TubeOM

OPVOTPA

P-ACCPE or PXPE Tubes

perPICU

poPRN

PROM

PTQdQh

QIDROMRSV

RTRxSISL

SLPSPOE

SSASSI

statSTT&A

tidTPNTPR

TxUTI

VIVNS

VSWNL

Common Medical Abbreviations

Lower ExtremitiesLevel of CareMicrogramMilligramMalignant HyperthermiaMiddle Interhemispheric VariantMilliliterMeasles, Mumps and Rubella VaccineMental Retardation/Developmental DelayMagnetic Resonance ImagingNasogastric TubeNeonatal Intensive Care UnitNeonatal Intensive Care NurseryNational Institutes of HealthNothing by mouthNormal SalineOxygenOral/Gastro tubeOtitis Media (ear infection)Oral Polio VaccineOccupational Therapy/TherapistPrior AuthorizationPartial Agenesis of the Corpus CallosumPhysical ExamPressure Equalizing Tubes (for ear infections)By or throughPediatric Intensive Care UnitBy mouthWhen necessaryPassive Range of Motion

Physical Therapy/TherapistEvery dayEvery hourFour times dailyRange of MotionRespiratory Syncytial VirusRespiratory TherapistPrescriptionSensory IntegrationSemi-LobarSpeech/Language PathologistSingle Point of EntrySocial Security AdministrationSupplemental Security Income

ImmediatelySpeech Therapy/TherapistTonsillectomy &AdenoidectomyThree times dailyTotal Parenteral NutritionTemperature, Pulse, RespirationsNumber of treatmentsUrinary tract infectionVisual ImpairmentVagus Nerve StimulatorVital SignsWithin Normal Limits

ACCADLAFOamt

AROMACCbid

BiPAPBMBP

CAPCBC

CHDCHCI

CLCLPCM

CNSCP

CPAPCPRCPT

CT ScanCVId/c

DAFODC

DHHSDI

DMEDNRDT

DTPDx

ECG/EKGECHO

EEGEI

ENTFTT

GIG-J Tube

gm

G TubeHCHepB

HIHIB

HPEI & O

IEPIFSP

ISIV

J-Tube


12/13

Augmentative communication,sometimes referred to asalternative communication(AAC) is a method ofcommunication used bychildren and adults withsevere speech and languagedisabilities. The methods ofAAC will vary and bepersonalized to meet theneeds of the individual. Toolsused may range from a basicpicture communication board

to a dedicated, high-levelelectronic speech generatingdevice (SGD). Some simpleAAC programs can now befound on most smartphones.

Developmental therapy is akind of guided play forchildren creating learningenvironments and activities topromote skills in all areas of achild's development. Much ofthe therapy is child-directed,meaning the therapist followsthe childs lead. Therapistsalso show parents techniquesfor behavior management andmodeling within the contextof everyday experiences andenvironments.

Hippotherapy is a specializedform of physical therapywhich uses a horse as atherapy tool to addressmovement disorders. Ahippotherapy treatment is

conducted by a licensed andspecially trained health careprovider, most often aphysical or occupationaltherapist or speech languagepathologist. For the childwith HPE and low muscletone or poor motor control,the horse offers a movementexperience that cannot be

replicated in any clinic. Thesymmetric movement of thehorse mimics human gait andprovides neuromuscularinformation to the childsnervous system.

Pediatric feeding therapy is acombination of treatmentsthat help children who havedifficulties related to eating ordrinking. There are manydifferent types of feedingproblems, and the therapy is

individualized for each child.

Pediatric occupational therapyfocuses on a childs sensoryand motor skills, emotionaldevelopment, self-careabilities and play skills tohelp improve successfulfunctioning in the home, atschool and in the community.An Occupational Therapist(OT) is skilled at assessing achilds level of function in

areas such as fine and grossmotor, visual perception,visual motor, self-cares/activities of daily living,feeding and sensoryprocessing. In addition, he/she is trained in assessing theneed for adaptive equipmentand technology, and makingthe proper recommendations.

Pediatric physical therapy is ahealth care specialty that

evaluates, diagnoses, andtreats disorders of themusculo-skeletal system inchildren. Physical therapy(PT) is provided by physicaltherapists, who are licensedhealth care professionals witha masters or doctorate degreein physical therapy. Aphysical therapist assesses

Common Therapy Options for Children with HPE

areas concerning joint motion,muscle control, strength,coordination, balance,movement patterns, sensoryissues, mobility, gait andequipment.

Pediatric speech and language

therapy provides assessmentand treatment of a childscommunication skillsincluding speech, language,play and social interaction

development. The focus oftreatment may be onimproving oral-motor skills,developing alternative meansof communication, andimproving language andcognitive skills.

Vision therapy is anindividualized treatmentprogram designed to correctvisual-motor and/orperceptual-cognitive

deficiencies Vision therapytrains the entire visual systemwhich includes eyes, brainand body. However, it isimportant to understand thatvision therapy is a form ofneurological training orrehabilitation (it can becompared to some forms ofoccupational therapy orphysical therapy). The goal ofvision therapy is to train thepatient's brain to use the eyes

to receive informationeffectively, comprehend itquickly and reactappropriately.

Other less common therapy

options include: Art Therapy,Music Therapy, Play Therapyand Water Therapy.


13/13

welcome packet for new families

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