Feeding and eatingInformation for parents of disabled children

Contact a Family working with The Royal College of Paediatricians and Child Healthcopy Contact a Family January 2007

Parents amp Paediatricians togetherOrder code C1

Getting in contactwith usTelephone Contact a Family0808 808 3555Open Monday ndash Friday 10am ndash 4pm and Monday 530pm ndash 730pmThis call is free

We are happy to give informationto family friends or anyone whoknows the family well

Onlinehttpwwwcafamilyorgukhttpwwwmakingcontactorg

This leaflet is available from Contact aFamily translated in various languages

Registered Office 209-211 City Road London EC1V 1JNRegistered Charity Number 284912Company limited by guaranteeRegistered in England and Wales No 1633333VAT Registration No GB 749 3846 82

Although great care has been taken in thecompilation and preparation of this informationbooklet to ensure accuracy Contact a Familycannot take any responsibility for any errorsor omissions

This leaflet has beenproduced as partof the Parents andPaediatricians Togetherproject and funded bythe Big Lottery Fund

Telephone interpreterserviceYou can telephone Contact a Familyand access qualified interpreters inover 100 languages who can assistin providing information

To use this service

bull telephone Contact a Family on0808 808 3555

bull give them your telephone numberbull tell them which language you needbull if you can let them know in English

what type of help you are looking for bull within a few minutes someone will

ring you back with an interpreter toassist your call

2 3Feeding and eating

Feeding and eatingIt is the natural instinct of a mother tofeed her child from birth to infancy andonwards If a child refuses food or hasdifficulty with eating it can leave parentsfeeling very anxious helpless andfrustrated A disabled child can havedifficulty feeding for several reasonsThe child may

bull find it difficult to chew swallow ordigest certain food

bull have limited mobility making it moredifficult to feed themselves on their own

bull have a learning disability making itmore difficult for them to learn orunderstand appropriate behaviourwhen eating and at mealtimes

bull be reluctant to eat or only eat a fewtypes of food This type of behaviourcan be associated with certainmedical conditions

bull be prevented from feedingsuckingas babies because of medicalproblems and then find it harderto develop these skills later on

If your child is having problems eating itis important you seek help from a healthprofessional who can check for possiblemedical causes as well as provide adviceon how to deal with the problem

Physical problems thataffect eatingfeeding

Difficulty sucking ndash Many new babiesexperience initial problems and thisdoes not imply they have a long termmedical condition Problems with suckingcan occur with certain conditions suchas cleft palate and cerebral palsy Thisproblem will be apparent very early onand staff on the maternity ward themidwife or a health visitor should allbe able to offer suggestions

Weaning ndash This is the process whena young child moves on from drinkingto eating solid food Some children findit harder to chew solid foods so movingfrom milk to semi-solids to solids isharder for them However some babieswho find sucking difficult find eatingsemi-solid food easier so may thrivebetter when weaned A health visitorcan advise on this

Bite reflex ndash This occurs during feedingwhen the child immediately lsquolocksrsquo themouth onto anything that is introducedinto it The child is not doing thisdeliberately A speech and languagetherapist can advise on techniques thatmay help and a plastic spoon will lessenthe chance of injury to the mouth ordamage to the teeth

Choking ndash Regular choking can causeconsiderable anxiety for both the childand the carer A doctor health visitorphysiotherapist or speech and languagetherapist should be able to advise howto prevent choking and what actionsto take if it does occur

Constipation ndash This is when a childis unable open hisher bowels It canbe caused by an underlying medicalproblem not eating enough of certaintypes of food not drinking enoughliquids or the consequence of reducedmobility A health visitor a paediatricianor the childrsquos GP should be able to help

Dental care ndash Difficulties in feedingcan be because of the way teeth closetogether or as a result of pain caused bya dental problem It can be more difficultto keep a disabled childrsquos teeth cleanFrequent check ups at the dentist isrecommended and it may be necessaryto go to a community dentist who hasexperience of dealing with disabledchildren

Reflux ndash is when food that has beenswallowed comes back up into theoesophagus tube that goes into thestomach This can cause discomfort bothduring and after eating and may causevomiting It should always be investigatedby a doctor who can advise ontreatment options

Vomiting ndash frequent vomiting may bedistressing for all concerned Where thechild is physically disabled this may beimproved by changing the childrsquos positionand avoiding lying down too soon aftereating If it persists seek advice fromyour health visitor or GP

Perseverance and patience can oftenbe needed so mealtimes do not becomea battle ground leaving both child andparent frustrated with each other Parentsoften find it helpful to talk to others whohave faced similar problems Contacta Family can help you find groups whoprovide support around a childrsquos specificmedical condition and may also beable to direct you to parents living inyour area

This fact sheet lists some of the physicalproblems that can cause difficulties withfeeding provides a few tips and ideasaround managing meal times andgives details of other organisations thatmay be able to help

Feeding and eating

4 Feeding and eating

Eating independently

It can take longer for a disabled child tolearn to feed themselves however asthey get older most children prefer to beable to do this and find depending onothers frustrating It may take time andeffort to help a disabled child to developthese skills but it will help them in otherareas such as language developmentmobility and hand-eye co-ordination

Equipment and utensils

Most babies can be fed with the ordinaryspoons designed for young children andreadily available in high street storesAs children mature and begin to attemptto feed themselves there are a numberof utensils that may help Special platesbowls cups adapted cutlery and nonslip mats that help to keep the dish inplace are all available as are specialistbibs to help keep food off clothingAn occupational therapist can advisewhat would be most appropriate

Diet ndash A nourishing and well balanceddiet is important for staying healthyHealth visitors and dieticians can adviseon suitable diets If there is a problem inchewing and swallowing then a speechand language therapist can advise onsuitable food textures and consistencyThis should help increase the rangeof food the child will take

Tube feeding

Sometimes it is necessary for babiesand children who are not able to suckor swallow adequately to get propernutrition to be fed by tube

A Naso-gastric tube (NG tube) isinserted into the stomach and is passedup the nose into the tube leading tothe stomach

A gastrostomy tube is placed througha small incision in the abdomen directlyinto the stomach This involves surgery

5Feeding and eating

Both have been shown to be helpful inassisting some people Tube feeding maybe a short term procedure butoccasionally needs to be permanentSometimes a combination of tube andconventional feeding is recommendedDetails of PINNT a support group whooffer advice to parents of children beingtube fed is provided at the end

Hintstips aroundmealtimes

Eating together as a familySitting down as a family to eat a mealtogether helps children learn appropriateeating behaviour It is particular helpfulto children who have problems learningor listening as they find out aboutappropriate behaviour by watching othersParents can find it difficult to organiseregular family meals especially if othermembers of the family are coming andgoing at various times Always make sureat least one person sits with the childwhile they eat and try to organise familymeals whenever possible

Decide a place for the child to sitat meal times Regular routine at mealtimes helps thechild understand what is being asked ofthem Try to choose a table and chair inproportion to the childs size Someparents choose to sit their child in frontof the television or video so they can bedistracted whilst eating This may be adifficult habit to break and causeproblems if eating out It may be betterto use a more mobile distraction whichcan be more easily moved to the maintable eg a favourite toy or book

Get the child into the right positionIf your child is physically disabled theymay need supporting so they are sittingin the right position It is very difficult toeat or drink with the head tilted backSeek advice from a physiotherapistoccupational therapist

Warn your child when the mealis nearly readyIf a child is engrossed in an activity theymight have temper tantrums if suddenlytold to stop what they are doing andcome to eat Warn the child the meal willsoon be ready by talking to them givingsigns such as laying the table or showingthem pictures of food

Reluctant eatersWhen introducing new food intersperseit with food you know they like Donrsquotforce them to eat food they dislike If thechild has sat at the table for a short timeand eaten a little food then praise andreward them If they find it difficult to sitfor long periods you might try timingyour child sitting down by using a largeegg timer and allow your child to moveonce time is up This will give them avisual link for lsquositting down timersquo Overtime you can gradually build up thesitting down period Again donrsquot rushthings and donrsquot expect instant change

6 Feeding and eating 7Feeding and eating

Possible causes of problemsTry to identify what might be causingproblems Here are some possible ones

bull Not in the right position to eatcomfortably not able to see what theyare eating or feeling insecure sittingin a big chair

bull Not liking certain foods Children cansometimes dislike certain texturestastes or smells Keep a note of foodsaccepted or rejected to see if there is apattern This may simply be a lsquofood fadrsquowhich can affect all children

bull Not liking the feel of cutlery in theirmouth Metal utensils and forks aremore likely to be troublesome

bull Some children like to see the foodpresented on the plates in a certainorder and donrsquot like their food beingmashed together

bull Being overwhelmed with the amountof food on the plate It can be betterto only offer a little food at first andadd more if wanted

bull Some babies prefer to feed themselveswith finger food rather than beingspoon fed

bull Having to sit close to one particularperson

bull Lots of noise or distractions from othermembers of the family

Unsocial behaviourIf your child really plays up at the tableand even resorts to spitting food on thefloor try not to give them a reaction asthis will only reinforce their behaviourand may encourage them to do it againThis is not an easy thing to do Never tryto force food as this will create evenmore of a problem

Is your child eating enoughIt may sometimes feel that your childhas hardly eaten anything all day so it issometimes worth writing down what theyhave eaten It might surprise you that itis quite a lot even if this is chocolatesweets and crisps Take this with youwhen you go to discuss their diet witha health professional

Getting specialist helpThere are times when parents needspecialist help and support Donrsquotstruggle alone but talk to your childrsquosdoctor health visitor or nurse Try to geta referral for help from an appropriateprofessional The dietician communitynurse speech and language therapistand occupational therapist all haveparticular skills which can help you andyour child

Useful contacts

Contact a Family provides support tofamilies of disabled children whatevertheir condition They offer a telephoneinterpreting service in over 120 differentlanguage and written information invarious languages can be downloadedfrom their web siteTel 0808 808 3555 Monday ndash Friday1000am-4pm Mon 530-730pmemail helplinecafamilyorgukweb httpwwwcafamilyorguk

National Autistic Society providesadvice and information services forparents of children with an autisticspectrum disorder (ASD) They offera telephone interpreting service in over120 different languages and writteninformation in various languages canbe downloaded from their web site Tel 0845 070 4004 Monday ndash Friday 1000am-4pmAutism Helpline The National Autistic Society 393 City Road London EC1V 1NGEmail nasnasorgukWeb httpwwwnasorguk

PINNT (Patients on Intravenous andNaso-gastric Nutrition Therapy)Offers advice to parents of children ontube naso-gastric or intravenous feedingTel 01202 481625PO Box 3126ChristchurchDorset BH23 2XSEmail pinntdialpipexcomWeb httpwwwpinntcom

Scope produce factsheets and a CD-ROM about feeding children withcerebral palsy from birth to six yearsPrice pound1500Tel 0808 800 3333 Monday ndash Friday9am ndash 9pm Weekends 2pm to 6pmCerebral Palsy HelplinePO Box 833Milton Keynes MK12 5NYFax 01908 321051Email responsescopeorguk Web httpwwwscopeorguk

Remember

Try not to let your child senseif you are feeling stressed abouthisher eating habits as this maycreate further anxiety and makethe problem worse

This factsheet is available fromContact a Family translatedin various languages

4 Feeding and eating

Eating independently

It can take longer for a disabled child tolearn to feed themselves however asthey get older most children prefer to beable to do this and find depending onothers frustrating It may take time andeffort to help a disabled child to developthese skills but it will help them in otherareas such as language developmentmobility and hand-eye co-ordination

Equipment and utensils

Most babies can be fed with the ordinaryspoons designed for young children andreadily available in high street storesAs children mature and begin to attemptto feed themselves there are a numberof utensils that may help Special platesbowls cups adapted cutlery and nonslip mats that help to keep the dish inplace are all available as are specialistbibs to help keep food off clothingAn occupational therapist can advisewhat would be most appropriate

Diet ndash A nourishing and well balanceddiet is important for staying healthyHealth visitors and dieticians can adviseon suitable diets If there is a problem inchewing and swallowing then a speechand language therapist can advise onsuitable food textures and consistencyThis should help increase the rangeof food the child will take

Tube feeding

Sometimes it is necessary for babiesand children who are not able to suckor swallow adequately to get propernutrition to be fed by tube

A Naso-gastric tube (NG tube) isinserted into the stomach and is passedup the nose into the tube leading tothe stomach

A gastrostomy tube is placed througha small incision in the abdomen directlyinto the stomach This involves surgery

5Feeding and eating

Both have been shown to be helpful inassisting some people Tube feeding maybe a short term procedure butoccasionally needs to be permanentSometimes a combination of tube andconventional feeding is recommendedDetails of PINNT a support group whooffer advice to parents of children beingtube fed is provided at the end

Hintstips aroundmealtimes

Eating together as a familySitting down as a family to eat a mealtogether helps children learn appropriateeating behaviour It is particular helpfulto children who have problems learningor listening as they find out aboutappropriate behaviour by watching othersParents can find it difficult to organiseregular family meals especially if othermembers of the family are coming andgoing at various times Always make sureat least one person sits with the childwhile they eat and try to organise familymeals whenever possible

Decide a place for the child to sitat meal times Regular routine at mealtimes helps thechild understand what is being asked ofthem Try to choose a table and chair inproportion to the childs size Someparents choose to sit their child in frontof the television or video so they can bedistracted whilst eating This may be adifficult habit to break and causeproblems if eating out It may be betterto use a more mobile distraction whichcan be more easily moved to the maintable eg a favourite toy or book

Get the child into the right positionIf your child is physically disabled theymay need supporting so they are sittingin the right position It is very difficult toeat or drink with the head tilted backSeek advice from a physiotherapistoccupational therapist

Warn your child when the mealis nearly readyIf a child is engrossed in an activity theymight have temper tantrums if suddenlytold to stop what they are doing andcome to eat Warn the child the meal willsoon be ready by talking to them givingsigns such as laying the table or showingthem pictures of food

Reluctant eatersWhen introducing new food intersperseit with food you know they like Donrsquotforce them to eat food they dislike If thechild has sat at the table for a short timeand eaten a little food then praise andreward them If they find it difficult to sitfor long periods you might try timingyour child sitting down by using a largeegg timer and allow your child to moveonce time is up This will give them avisual link for lsquositting down timersquo Overtime you can gradually build up thesitting down period Again donrsquot rushthings and donrsquot expect instant change

6 Feeding and eating 7Feeding and eating

Possible causes of problemsTry to identify what might be causingproblems Here are some possible ones

bull Not in the right position to eatcomfortably not able to see what theyare eating or feeling insecure sittingin a big chair

bull Not liking certain foods Children cansometimes dislike certain texturestastes or smells Keep a note of foodsaccepted or rejected to see if there is apattern This may simply be a lsquofood fadrsquowhich can affect all children

bull Not liking the feel of cutlery in theirmouth Metal utensils and forks aremore likely to be troublesome

bull Some children like to see the foodpresented on the plates in a certainorder and donrsquot like their food beingmashed together

bull Being overwhelmed with the amountof food on the plate It can be betterto only offer a little food at first andadd more if wanted

bull Some babies prefer to feed themselveswith finger food rather than beingspoon fed

bull Having to sit close to one particularperson

bull Lots of noise or distractions from othermembers of the family

Unsocial behaviourIf your child really plays up at the tableand even resorts to spitting food on thefloor try not to give them a reaction asthis will only reinforce their behaviourand may encourage them to do it againThis is not an easy thing to do Never tryto force food as this will create evenmore of a problem

Is your child eating enoughIt may sometimes feel that your childhas hardly eaten anything all day so it issometimes worth writing down what theyhave eaten It might surprise you that itis quite a lot even if this is chocolatesweets and crisps Take this with youwhen you go to discuss their diet witha health professional

Getting specialist helpThere are times when parents needspecialist help and support Donrsquotstruggle alone but talk to your childrsquosdoctor health visitor or nurse Try to geta referral for help from an appropriateprofessional The dietician communitynurse speech and language therapistand occupational therapist all haveparticular skills which can help you andyour child

Useful contacts

Contact a Family provides support tofamilies of disabled children whatevertheir condition They offer a telephoneinterpreting service in over 120 differentlanguage and written information invarious languages can be downloadedfrom their web siteTel 0808 808 3555 Monday ndash Friday1000am-4pm Mon 530-730pmemail helplinecafamilyorgukweb httpwwwcafamilyorguk

National Autistic Society providesadvice and information services forparents of children with an autisticspectrum disorder (ASD) They offera telephone interpreting service in over120 different languages and writteninformation in various languages canbe downloaded from their web site Tel 0845 070 4004 Monday ndash Friday 1000am-4pmAutism Helpline The National Autistic Society 393 City Road London EC1V 1NGEmail nasnasorgukWeb httpwwwnasorguk

PINNT (Patients on Intravenous andNaso-gastric Nutrition Therapy)Offers advice to parents of children ontube naso-gastric or intravenous feedingTel 01202 481625PO Box 3126ChristchurchDorset BH23 2XSEmail pinntdialpipexcomWeb httpwwwpinntcom

Scope produce factsheets and a CD-ROM about feeding children withcerebral palsy from birth to six yearsPrice pound1500Tel 0808 800 3333 Monday ndash Friday9am ndash 9pm Weekends 2pm to 6pmCerebral Palsy HelplinePO Box 833Milton Keynes MK12 5NYFax 01908 321051Email responsescopeorguk Web httpwwwscopeorguk

Remember

Try not to let your child senseif you are feeling stressed abouthisher eating habits as this maycreate further anxiety and makethe problem worse

This factsheet is available fromContact a Family translatedin various languages

6 Feeding and eating 7Feeding and eating

Possible causes of problemsTry to identify what might be causingproblems Here are some possible ones

bull Not in the right position to eatcomfortably not able to see what theyare eating or feeling insecure sittingin a big chair

bull Not liking certain foods Children cansometimes dislike certain texturestastes or smells Keep a note of foodsaccepted or rejected to see if there is apattern This may simply be a lsquofood fadrsquowhich can affect all children

bull Not liking the feel of cutlery in theirmouth Metal utensils and forks aremore likely to be troublesome

bull Some children like to see the foodpresented on the plates in a certainorder and donrsquot like their food beingmashed together

bull Being overwhelmed with the amountof food on the plate It can be betterto only offer a little food at first andadd more if wanted

bull Some babies prefer to feed themselveswith finger food rather than beingspoon fed

bull Having to sit close to one particularperson

bull Lots of noise or distractions from othermembers of the family

Unsocial behaviourIf your child really plays up at the tableand even resorts to spitting food on thefloor try not to give them a reaction asthis will only reinforce their behaviourand may encourage them to do it againThis is not an easy thing to do Never tryto force food as this will create evenmore of a problem

Is your child eating enoughIt may sometimes feel that your childhas hardly eaten anything all day so it issometimes worth writing down what theyhave eaten It might surprise you that itis quite a lot even if this is chocolatesweets and crisps Take this with youwhen you go to discuss their diet witha health professional

Getting specialist helpThere are times when parents needspecialist help and support Donrsquotstruggle alone but talk to your childrsquosdoctor health visitor or nurse Try to geta referral for help from an appropriateprofessional The dietician communitynurse speech and language therapistand occupational therapist all haveparticular skills which can help you andyour child

Useful contacts

Contact a Family provides support tofamilies of disabled children whatevertheir condition They offer a telephoneinterpreting service in over 120 differentlanguage and written information invarious languages can be downloadedfrom their web siteTel 0808 808 3555 Monday ndash Friday1000am-4pm Mon 530-730pmemail helplinecafamilyorgukweb httpwwwcafamilyorguk

National Autistic Society providesadvice and information services forparents of children with an autisticspectrum disorder (ASD) They offera telephone interpreting service in over120 different languages and writteninformation in various languages canbe downloaded from their web site Tel 0845 070 4004 Monday ndash Friday 1000am-4pmAutism Helpline The National Autistic Society 393 City Road London EC1V 1NGEmail nasnasorgukWeb httpwwwnasorguk

PINNT (Patients on Intravenous andNaso-gastric Nutrition Therapy)Offers advice to parents of children ontube naso-gastric or intravenous feedingTel 01202 481625PO Box 3126ChristchurchDorset BH23 2XSEmail pinntdialpipexcomWeb httpwwwpinntcom

Scope produce factsheets and a CD-ROM about feeding children withcerebral palsy from birth to six yearsPrice pound1500Tel 0808 800 3333 Monday ndash Friday9am ndash 9pm Weekends 2pm to 6pmCerebral Palsy HelplinePO Box 833Milton Keynes MK12 5NYFax 01908 321051Email responsescopeorguk Web httpwwwscopeorguk

Remember

Try not to let your child senseif you are feeling stressed abouthisher eating habits as this maycreate further anxiety and makethe problem worse

This factsheet is available fromContact a Family translatedin various languages