Feeding Issues

Feeding issues can be a common difficulty found in children with spina bifida and
or hydrocephalus (1). There has been very little research into this, but
developmental, behavioural and neurological factors all play a part. Difficulties
can occur at any age, but most commonly start around the time of weaning from
milk to solids. For the vast majority of children with feeding issues this is a
short-term problem. Only a small proportion of adults have feeding issues.

Main areas of difficulty

Gastro-oesophageal reflux: food that has been swallowed comes back up into
the oesophagus. This can be quite uncomfortable and can lead to vomiting,
which in itself can be distressing. Keeping the baby/child as upright as possible
during and after feeding helps to reduce the occurrence of reflux/vomiting. Some
children may continue to have reflux for some years. Medical advice should be
sought. Medication is available to help relieve the reflux, and thickeners can be
added to milk feeds.

Gagging/choking/retching: this can be caused by the childs intolerance of

certain textures. For example some children cannot tolerate lumpy food, and will
remain on liquidised food a lot longer than their non-disabled peers. For some
children the cause of gagging/choking is a Chiari Malformation. Approximately 1
in 3 babies/children with spina bifida have symptoms of Chiari Malformation
including feeding difficulties (2).

Textures: some children with spina bifida and or hydrocephalus dislike

touching/feeling certain textures, for example sand or cotton wool. This dislike of
textures can be transferred to food. Again many continue on liquidised foods for
longer than their non-disabled peers. Metal cutlery can also be intolerable, and
so the use of plastic cutlery may be more acceptable.

Slow eaters: some children can take over an hour to finish a meal. For some it is
because they have difficulty chewing. Others have texture intolerance, and so it
takes time for them to put food in the mouth and swallow it.

Small amounts: in some instances, a child will have no interest in food and
eating. Some do not feel hungry and so will not ask for food. Many will only eat
one meal a day. Many prefer to graze eating only small amounts throughout
the day.

Fussy/faddy eaters: the term fussy is used here in the sense that they only
have a limited diet; not meaning the child is being deliberately awkward. For
some parents this can be the most frustrating part of having a child with feeding
issues. For many children, once a liking for a certain food has been established,
they may only eat that food. Sometimes this is limited to only 3 or 4 foodstuffs
and is often junk food, e.g. a particular brand or flavour of crisps or certain fast
food restaurant French fries. In some rare instances children have been known to
eat only one colour of food. Some children will only eat from certain plates,
sitting on a particular chair. The fussy/faddy eater can be the most difficult as
often outsiders have an opinion on how your child should behave. Ignore them
you know your child best.

Coping with feeding difficulties.

A parents natural instinct is to feed their child, and they can be left feeling
anxious and distressed if they think they cannot fulfil this basic need.

Try to make meal times as relaxed as possible. Pre-alert your child that a meal
is going to be served. If they are suddenly removed from an activity they are
happily engrossed in, to go to an activity that is historically stressful it may cause
problems.

Eating at a table and chair that is proportionate to the size of the child may make
it easier for them. Dont have distractions like the TV on at mealtimes. Try to
ensure mealtimes are a family activity. This is not always possible in a busy
household, but try to make sure that someone sits with the child when they eat.
Eating at a table is good practise for when you eat out. If the child sits at the
table with the rest of the family at mealtimes, try to sit them in the same place
each time. Regular routines ensure the child is less anxious and knows what is
happening. Eating as a family shows the child how eating can be a sociable
event, and also how to behave appropriately with food.

For those children who are fussy/faddy eaters, gradual introduction of new foods
is advised. Ensure their comfort food is served with new foods. Give praise
and encouragement if the new food is touched or tried. If the new food is left at
the end of the meal, remove the plate, say nothing and try again the next day.
Never bargain with the child by offering them something nice, i.e. a pudding if
they eat all of their main meal. Often the child has no interest in food and
therefore couldnt care if pudding is available or not. For others this adds
pressure to an already stressful time. Never force-feed a child. Do not put too
much food on the plate. This can be off-putting and you may find the child will
not eat anything.

Special equipment, eg plates and cutlery is sometimes needed. An occupational

therapist can advise on what is most appropriate.

Is your child getting enough nourishment/food?

The vast majority of children with spina bifida and or hydrocephalus and feeding
difficulties do thrive, grow and put on weight. Keeping a food diary will show you
exactly how much your child is eating. Speak to your GP and or Health Visitor if
you are worried. It might be that your child will need supplements. Occasionally
the problems are severe and the child does not thrive. Sometimes it is
necessary for the child to be tube fed. This can be done either through the nose
(a naso-gastric or NG tube), or directly into the stomach (a gastrostomy tube).
The NG tube is passed down the nose and into the stomach. This is not a
painful procedure, but can be uncomfortable and distressing for the child. A
gastrostomy tube is a surgical procedure and so is done under general
anaesthetic. A small incision is made in the abdomen and the tube is passed
directly into the stomach.

Tube feeding is often a temporary measure and can be used in conjunction with
conventional feeding. In some children it can be a permanent measure.

Most importantly when feeding/eating with your child relax. A child can sense
when a parent is anxious and this anxiety is transferred to the child.

For more help and information contact ASBAHs Help line on 0845 450 7755.

For advice on tube feeding contact PINNT (Patients on Intravenous and Naso-
Gastric Nutrition Therapy) on 01202 481625. www.pinnt.com

References:

Hill, N; Williams, M. (2002) Feeding Problems In Children with Spina Bifida.

Link Magazine. March/April 2002

Sandler, A. (1997) Living with Spina Bifida. 1st Edition. USA

The University of North Carolina Press