General
Information
Please
select one of the following:
Pre-school
Children with Organic Acidaemias
Use
of Taxi Services for School
Diets
or Why aren't I allowed. ..? !
Legislation
This article has
written with a special bias towards leaders of Pre-school groups and may be of
help to parents considering sending their child to such a group. It is based
upon personal experience and is formulated as answers to series of possible
questions.
First, it should
be stated that children with Organic Acidaemia type disorders have greatly
differing mental abilities. While one child may be considered 'normal', or
nearly so, both physically and mentally, another with the same disorder may be
severely handicapped in either or both areas. This is for various reasons. One
reason is that the child may be suffering from a more severe form of the
disorder. Alternatively, diagnosis may not have been made until later. Under
these circumstances one will realise that it is difficult to generalise.
If a child
suffering from an organic acidaemia became a member of a playgroup or nursery
then the following should be observed.
The child's diet
is critical to his very survival. He must only drink or eat what his parents
allow. The parents must be informed of everything the child eats or drinks in exact
quantities. A covering letter from a doctor and / or dietician may be
requested if necessary and should be forthcoming.
It is very
difficult for a person who is not trained medically to recognise symptoms and
danger signs. Anything different about the child should be reported back to
the parents; signs such as drowsiness or behavioural changes such as excessive
clinginess may be evident. For long term (day) nursery as well to have an
arrangement with a local hospital for the child to be admitted if he becomes
suddenly unwell.
The younger the
child, the quicker he is likely to become unwell. No nursery or playgroup
should consider taking on a child with metabolic problems without thoroughly
discussing these points with the parents and being prepared to listen and do
what they say
The best way for
nursery or playgroup staff to support the child is by listening to the parents
and doing what they request. Strange requests that may be made are not the
result of the parents being ‘neurotic’; they are being made for the good
of the child and come from hard found experience.
Some children
with organic acidaemias are developmentally delayed due to traumas in the
neo-natal period. The best support for these children is for them to attend a
'normal' playgroup where they are able to imitate their peers and to catch up
with them by so doing.
My own daughter
was one of these children. She could not walk or talk and was not potty
trained when she started normal playgroup at age 2. At age 3 she learnt to
talk and read simultaneously. At age 4 she left the playgroup, the leader
having told us that there was nothing else they could do with her - she was
too far ahead of herself mentally for them. She went to a school nursery for a
year and became well enough toilet trained to attend normal school.
It is realised,
however, that in some instances it is better for these children to go to an
'Opportunity Playgroup', or a playgroup especially established for handicapped
children.
No policies are
necessary to protect the health of other children in the group. These
disorders are genetic in origin and are caused by the inheritance of two
faulty genes, one form each parent.
It would be
prudent for the nursery staff to inform the parents of any colds, tummy bugs
or childhood diseases which are 'going round', as some metabolic children are
extremely prone to catching these. Colds and sickness bugs can be very serious
and mean a period in hospital. The parents would want to be told! It would
also be advisable for staff who themselves have colds or minor disorders to
keep away from the metabolic child.
As far as the
normal childhood illnesses are concerned, my personal opinion as a parent is
that the sooner they get them, the sooner they will be over and done with. As
with any child, metabolic or otherwise, is likely to catch these diseases it
shouldn't be necessary to be over-protective about them.
I do, however,
get very annoyed with someone who knowingly puts a child with a tummy
bug in contact with my child!
I have to admit that when going to school by taxi was
first suggested I was very apprehensive about the idea. I would have given
anything for her to go to a school near enough to walk to. none of them seemed to want a special needs child with our
daughter Kathryn's particular set of problems and idiosyncrasies. I have to
say, now, that it has worked very well, and I couldn’t be happier if she had
gone to a school nearer home. I suppose part of my problem was that Kathryn
would be going to school all day. I just wasn't used to this, having had to
collect from school at lunchtime and take her back afterwards. If any of you
have to face this situation, there are a few points to be considered:
First
of all - if you don't ask, you won't
necessarily get. Every time the Education Dept. spoke to us I made comments
about such things as seat-belts, child locks and booster seats. The result is
that all those items are in use. More about that in a minute.
Secondly - Your child does not have to be part of a 'milk
run', i.e. collected by a minibus at some unearthly hour and then dropped off
late. If meal times are critical, as they are with us, then a one to one taxi
service can be requested. This must be supplied if recorded on a Special Needs
Statement.
Thirdly - Safety
a)
Seat-belts. I would say that most taxis, if not all, have rear seat
belts. Make sure they are used
b)
Booster-seats. Kathryn is so small that the adult rear seat belt wraps
itself across her neck - with results that I wouldn't like to imagine if the
car was involved in an accident. We originally lent our own booster seat for
use in the taxi, which is a big one with a back on it. Eventually we bought a
new one from Mothercare for £15 exclusively for use in the taxi. A booster
seat can still be bought for less than £10 and it is well worth every penny
when the safety of your child is concerned. Your child will travel in that
taxi for about 200 days of the year. Even at my level of maths I reckon it's
worth it. Some taxi companies supply 'kiddie seats' of some sort as a matter
of course.
If the adult seat belt is used without a booster
seat, check the fit. It is a common design fault in cars for the fastening end
of the seat belt to be too long for most adults, i.e. it reaches to the groin
area rather than to the side of the hip. This could cause further injury in an
accident and would be even worse in the case of a small child.
c)
Child locks. These are essential if you have a child who is
likely to mess about anywhere near the door handles. Locking the door is no
safeguard and it means that the child would be unable to get out of the car if
it was necessary to in an emergency. Kathryn has only opened the door of a
moving car once - it was an old car (pre child locks era), but was fortunately
going very slowly at the time. I have also heard of a child who fell out of a
taxi, some years ago, before rear seat-belts and child locks were in regular
use. He was somewhat bruised and shocked, but otherwise ok and very lucky.
I'll bet he didn't play with the door handles again either!
To conclude my comments on safety I will say that I have
just noticed that Kathryn is too tall for her combi-seat. She is the height of
an average 6 year old and i
would have expected the seat to last her another 2 years or perhaps more,
according to the weight factor. If our car was involved in an accident her
head would whiplash back over the top of the combi-seat before it hit the rear
seat! Another point for the safety conscious parent to note.
Finally I must just say 'thanks a million' Chris and Pat
and staff at M'Lady Private Car Hire. Keep up the good work!
Does this statement sound familiar to most of you? I'm
sure that it does, and also several variations of it! I'm prompted to write
about 'low protein diets' by a letter sent from Northern Ireland about a girl
of 14 with PKU (Phenylketoneuria) who was taken completely off her rigid diet.
On the way home from hospital she was asked what she would like to eat. She
replied without hesitation ''chocolate'' was duly bought her very first bar of
chocolate and her parents watched with trepidation as she ate it. They were
greatly relieved when nothing drastic happened to her.
The point I'm making is this: that with the modern,
flexible approach to metabolic diets for children and successful monitoring it
should be possible to design a varied diet that does not deprive the child of
interesting tastes.
If you ask my daughter what she cannot have she'll tell
you ''oranges, lemons and nuts''. (This includes grapefruit and anything
containing citric acid.) Although not ruled out of her diet for metabolic
reasons, we don't allow citric fruit because she has a lot of cows' milk and
she was violently sick after having a citrus flavoured pudding immediately
before her cows' milk feed. She cannot have the nuts (or anything containing
them) because she doesn't chew too well and there have been incidences of
small children choking very seriously on nuts. Just in the way of a sideline,
nuts are of course high in protein.
I'd better explain all this hadn't I? To my
unprofessional way of looking at things, there are 3 types of low protein
diet.
This is horribly complicated (to put it mildly) and was
not devised for use as a metabolic diet. It involves dividing food into about
a dozen categories and counting the amount eaten in each category. I'm sure
that it is very good for the purpose for which it was intended, i.e. patients
with kidney disorders. As a metabolic diet, however, it leaves a lot to be
desired. Incidentally, there is an excellent cookery book produced about this
diet that is far superior to anything I have so far seen that has been
produced for those with metabolic problems.
In this those on the diet are allowed a given number of
''exchanges'' a day. This is probably the type of diet that most of your
children are on. There are similarities between this form of diet for those
needing low protein and those needing low carbohydrate diets for diabetes. The
diet involves 3 categories of food:
a)
''Free'' foods.
These can be eaten freely at any time, e.g. sugar and some
fruits.
b)
''Restricted'' foods, e.g.
1 exchange of chips
= 30g
1 exchange of milk chocolate
= 10g
1 exchange of plain chocolate
= 25g
c) ''Banned''
foods, e.g. nuts, peanut butter, steak, etc.
Many people find this a very easy diet to follow, but I
found from the very beginning that I didn't get on very well with it. A
daughter who at the age of about a year would eat only very small dinners of
fairly high protein foods didn’t help this. Around this time, she stopped
eating altogether for about two and a half years and we had no option than to
resort to her being tube fed. When she did eventually start eating, we worked
out between us what I have called the:
This consists simply of knowing the child's weight, her
daily protein allowance; the protein content of the foods she eats and in
Kathryn's case giving supplements in the form of a ''special'' feed.
Did I say ''simply''? Well - in all honesty, I find this
method easier than the ''exchange'' system. Maybe that's because I'm not very
clever! To give an example of how it works:
If Kathryn weighs 20kg and is allowed 1.5g of protein for
every kilogram of weight that means that she is allowed 30g (20 multiplied by
1.5) of protein per day.
This is how we calculate each meal:
20g of cereal for breakfast at
12% protein with
100ml of cows' milk at
3.3% protein
That equals 5.7g of protein
(12% multiplied by
20g divided by 100% = 2.4 g for the cereal
+
3.3% multiplied by 100ml divided by 100% = 3.3g for the
milk)
|
Time
|
Quantity
|
%
protein
|
|
0700
|
300
ml Special tube feed
|
0.0
|
|
0900
|
200
ml SMA via tube
|
3.0
|
|
1200
|
300
ml Campbell’s condensed chicken soup
|
6.6
|
|
|
200
gm Fruit pudding
|
0.0
|
|
1600
|
300
gm Blancmange with cows' milk
|
9.9
|
|
2200
|
300
ml Special tube feed
|
0.0
|
|
|
1800
ml /or gm
|
26.1%
|
This is a sample day of Kathryn’s menu when she
is well. If she is unwell much of the solid food is replaced by cows' milk via
the N/G tube. If her protein level tops 30g, I use water in place of milk. At
times when Kathryn is very unwell, the dietician very carefully controls her
diet.
Using this format I can see at a glance how much protein
and fluid Kathryn has had. The fluid is import ant because she only takes in
the minimum requirement each day.
Occasionally she asks for a fish finger, sausage or
something similar. If so, she can have it and then be given a ''free'' food
when her protein level reaches the limit. Kathryn knows that when I say that
she has had too much protein she must have a ''free'' food. I can substitute a
''free'' pudding for a milk pudding at any time. If she asks for cereal for
supper she can have it with SMA or even with water if necessary. We have a
supply of baby cereals and also Ready Brek all of which can be used with
water.
I find that by using this system there is no need
for any food ever to be banned (other than nuts!). We usually find a way of
incorporating whatever Kathryn wants. Certainly, she doesn't have to have such
a low protein food as chocolate banned provided that she doesn't eat too much
of it. (Milk chocolate approximately 7.5%, Nestles plain 3.0% protein.)
Most of the ''banned'' foods become ''restricted''
foods and the list of ''allowable but counted'' foods become s greater.
Having said all this, I realise that some children have
to have their protein much more rigidly controlled than Kathryn currently
does. However, I am convinced that at the other end of the spectrum there are
children who's diet is far too restrictive in that too many foods are banned
unnecessarily.
Carers
(Roles and Responsibilities) Act 1995
"The underlying purpose of the Carers (R&S) Act is to ensure that proper recognition is
given to the role of carers. The Act describes local authorities' duties in
relation to the carer who is defined as 'someone who provides (or intends to
provide) a substantial amount of care on a regular basis for a disabled,
ill or elderly person.’ Included in this definition are PARENTS who provide
or intend to provide a substantial amount of care on a regular basis for
disabled children, i.e. levels of care regular beyond that which would usually
be expected for a child of that age. It is probable that the Government will
ask Social Services Departments to determine locally how they will interpret
the terms "substantial" and "regular".
"The Act does NOT place a duty on Social Service
Departments to assess every carer on the 1st April 1996 nor does it place a
duty on them to provide services to the carer. Moreover, the duty to assess
arises only when an assessment or reassessment of the needs of the person
being cared for is being carried out and only then if the carer requests an
assessment or their own needs. However, in deciding what services should be
directed towards the disabled person, the Act recognises that due
consideration should be given to ensuring that carers are enabled to choose
the level of care and support they wish to give to the disabled person. The
local authority may also wish to consider the impact of a child's disability
on his/her siblings. Obviously, the regulations and guidelines of the 1989
Children Act may colour any assessment requested by a Parent under the Carers'
Act. Parents will be able to challenge decisions not to assess their needs
through the Social Services complaints system."
This brings in new laws and measures aimed at ending the
discrimination which many disabled people face. The Act gives disabled people
new rights in the areas of employment, getting goods and services, and buying
or renting land or property. The Act ensures recognition of the needs of
disabled people wishing to study and the provision of better information for
parents, pupils and students. Schools will have to explain their arrangements
for the admission of disabled pupils, how they will help these pupils gain
access and what they will do to ensure they are treated fairly. Further and
higher education institutions funded by the Further and Higher Education
Funding Councils will have to publish disability statements containing
information about facilities for disabled people. Local Education Authorities
will have to provide information on their further education facilities for
disabled people. The Government has begun a lengthy consultation process which
will determine when different parts of the Act are implemented Disabled
people, and many organisations which represent them, are concerned that this
piece of legislation falls far short of the full civil rights bill with proper
powers of enforcement which they had been campaigning for. Although the
National Disability Council has now been set up, this is merely a body to
advise Government on disability issues, not a Commission with legal powers
such as those set up under other anti-discrimination legislation (i.e. Equal
Opportunities and Race Relations).
A Brief Guide to the Act can be obtained in a
variety of formats by telephoning 0345 622633 (text phone 0345 622644).
Remember:
don't alter your child's diet in any way without consulting your dietician and
paediatrician. They know what is best for your child, just as Kathryn's
dietician and paediatrician know what is best for her.
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ALWAYS CHECK
DIETARY AND MEDICAL FACTS WITH YOUR PROFESSIONAL ADVISER