Ethan's story

Hi my name is Ethan, I have Nephrotic Syndrome and I have to go to hospital quite often. I have written this to help you understand what will happen when you go to hospital and I hope that after you have read it you won't feel scared.

This is me going to hospital in my car. I usually feel quite excited, as I like visiting the cafe and shop at the hospital. I don't really feel nervous as all the Nurses and Doctors are really nice and because I am used to going I know that everything will be ok.

When we arrive at the hospital, we have to check-in and hand in my appointment card. I then have to wait in the waiting area for quite a while. There are plenty of toys to play with or books to read, but sometimes it is nice to take along something from home, like a games console to keep yourself amused.

I also have to have my height checked, to make sure that I am growing properly.

 This is me getting weighed.Sometimes I have put on weight because of my medication.


Here I am getting my blood pressure taken. The nurse puts a cuff or band round my arm and it gets quite tight before it measures my blood pressure. This doesn't hurt but it can feel quite tight.

Usually I have to give a sample of my urine (wee). The Nurse gives me a bottle and I can go to the toilet to fill a bottle or container, which she will test. Sometimes I have to drink extra juice at the hospital so that I can do this.

This is the Doctor taking a sample of my blood. I know it sounds scary, but it doesn't really hurt that much, especially if you use "magic cream". This is white cream which the hospital can put on your arm, half an hour beforehand and it makes your skin go numb. Now I don't use the cream because I'm so used to it and I don't find it really sore anymore.

Ethan's tips - Don't look at the needle - think of something nice e.g. holiday/xmas - squeeze Mum/Dad's hand and talk to them

Notes to Parents/Carers

It is always a good idea to explain to your child what will happen at the hospital - so there are no "nasty" surprises and you can gauge how your child is likely to react.
Try to allow extra time before your appointment to explore the best parts of the hospital e.g. cafe and shops and sometimes the promise of a treat afterwards is a good incentive.
Expect delays - appointments are rarely on time - although there are toys/books and magazines it is quite a good idea for your child to take something to amuse themselves. with.
You may wish to take a drink for your child in case giving a urine sample is difficult.
If your child isn't used to needles/or is quite upset at the prospect of having blood taken - Emla cream is very good at numbing the skin. Although the hospital can provide this it is possible to get this cream and plasters from your G.P. allowing you to apply it before your appointment - This saves you time waiting at the hospital for the cream to work.
It is worth noting that you will have to apply the cream on a few different places - as you may not be sure that the Nurse/Doctor may have to make a few different attempts.
Emla Cream can be very effective in minimizing your child's fear or needles - but it can sometimes cause veins to recede, especially if their skin becomes sensitive to the cream and ironically this can make it more difficult to get blood.