Re: MEGAN - SCHOOLS (long)

[Guest guest]

asked for a copy of my letter to the school. I thought I'd just post

it to the list in case it was useful to other people. Feel free to delete

if your dealing with older children.

Much love to all,

-

Mum to Cate 10yrs wocf and Sian 6yrs wcf, asthma, GERD and ADD?

Canberra Australia-

Dear Miss ,

Welcome to the Trinity teaching staff, and welcome to Year One! My name is

, and I am the mother of Sian (pronounced " Sharn " ) who is

overjoyed to have you as her teacher this year.

I imagine that Prattis has handed over to you a bundle of information

about Sian and cystic fibrosis (CF). While I hope that you will have time

to absorb all of the information contained in that bundle at some stage, I

would like to give you a short summary of how the Kindergarten teachers and

I worked on the management of Sian¹s condition in the classroom. I would

also like you to have a brief description of how Sian presents with CF.

Since I don¹t know how much background knowledge you have on CF, I¹m going

to start at the absolute basics. CF is a terminal, progressive genetic

disease which affects approximately one in every 2000 children born in

Australia. At this time, the average life expectancy of a person with CF is

around 30 years. While there have been major advances in treatment in

recent years, there is still no cure. CF affects the digestive and

respiratory systems. People with CF generally require a high salt, high

fat, high sugar diets, with additional fluid intakes. People with CF are

frequently more susceptible to infection.

What does all this mean for you?

Sian dehydrates faster than a " healthy " child, because she sweats much more.

Exercise on a hot day will turn Sian bright red, and she will sweat so much

she drips. Early warning signs of dehydration in Sian are lethargy and

grumpiness. Sian requires her water bottle available to her at all times.

She will place it on her desk in the mornings, and will take it to music,

gross motor and sport. In hot weather, I would expect that her water bottle

would need refilling during the day. In extreme hot weather, Sian will take

a salt supplement at home.

Sian requires a high energy diet. During last year we found it useful for

Sian to eat at recess, lunch, and at around 2.30pm. This means that Sian

can fit in her required intake, and doesn¹t throw food away so that she has

time to play with her friends! I will provide a written note in her diary

every day, detailing what she is to eat for each meal, and how much

medication is required. On the first day of school (or earlier if you like)

I will provide you with a bottle of " Pancrease " . This is an enzyme

supplement, which Sian must take before eating any foods containing fat.

It is frequently difficult to get the balance of medication to food correct,

as it¹s nearly impossible to guess how much Sian is going to eat of the food

provided to her. The consequences of an incorrect balance of medication are

either constipation or the complete opposite. There will be times when Sian

needs to go to the toilet, and doesn¹t have time to ask permission. I would

prefer that Sian simply went to the toilet when required, and told you that

she had been when she returns to the class room.

Another complication of Sian¹s digestive system is Gastric Reflux (GERD).

Sian is on medication for this, which is taken at breakfast time. Even with

the medication, Sian belches frequently, loudly and repeatedly. She has no

control over this, and finds the whole situation extremely traumatic. I

would ask for sensitivity in your handling of this matter. That said, the

other children need to know that this is an aspect of Sian¹s medical

condition, as she doesn¹t handle people teasing her about her belching at

all well.

As you can see, Sian most often presents with digestive complications.

There will be times through the year when she has respiratory infections.

The common cold affects Sian the way influenza affects you and I. Influenza

affects her the way pneumonia affects us. If Sian is unwell/infectious she

will not attend school. There will be times when Sian is at school

following an infection, when she still has a cough. (A complicating side

line to this, Sian also has asthma. There is a puffer and spacer kept at

the sick bay, but I would be willing to provide one for the classroom as

well.) There will be days when I have been unable to complete all of Sian¹s

breathing treatments before coming to school. On those days, if you are

happy for us to do so, we will do the treatments in the back room, and I

will listen to some reading.

A CF cough is quite dramatic. I can track Sian through shopping centres by

the cough. It sounds like it¹s coming out of her toes. Having a drink of

water will do nothing to ease the cough. Should a cough start up during the

day, please call me straight away.

Aside from CF, asthma and GERD, Sian has some difficulties with her

attention span. There have been days when I feel like having her assessed

for Attention Deficit Disorder. She is not " hyperactive " , she is extremely

intelligent, she just has periods of complete lack of attention. Even after

six years of requiring medication before she eats, she still sometimes goes

straight from washing her hands to eating her lunch, without taking the

medicine. At least once per week, she will leave her lunch box in the

playground. If the work she is doing doesn¹t interest her, she will

frequently drift off into " la la " land. This drives me stark, raving mad.

Academically, Sian is well in advance of most of the children her age. I am

sure Prattis will have given you a run down on where Sian was up to at

the end of Kindergarten. Over the holidays, Sian has continued reading

Harry Potter (Chamber of Secrets), Black Beauty, and the Enchanted Wood.

She has also added Jennings to her list of currently favoured authors.

I anticipate that Sian¹s reader level will be somewhere around level 40 at

the start of first term.

Sian is very much looking forward to meeting you, but has expressed a

concern that Year One will be too easy and boring. I assured her that there

would be challenges for her, and hope that we are able to continue our story

writing development which we began in the later half of last year. Last

year, Sian found it helpful to have a novel/research book of her choice at

her desk for when she had finished her set work.

I would welcome the opportunity to discuss any of the matters raised in this

letter, and to answer any questions you may have regarding Sian and the

management of her conditions. Please feel free to call me on 6294 1572 or

0416 191166.