All about Guillain-Barré Syndrome - Courtney suffered from GBS as a five-yr old, here is her story!

This story was printed in the New Zealand GBS Support Group newsletter, March 2006 and is reprinted here by permission.

"Courtney is a dear little eight year old girl, and a brave one too. Not only has she fought that horrible illness called Guillain Barré Syndrome, but she and her mum and her Nana came all the way to Wellington in April 2005 to our GBS conference. Courtney spoke to everyone about her experience with GBS, and here is her story:

On Monday the first of December 2003 at athletics my legs went funny and I looked funny running. I went to school on Tuesday with my funny legs.

The next day I went to school with my Aunty Shelley. When I went into my classroom I turned around to look at my Aunty but my legs just gave way on me. My Aunty left me with the office lady and went and got my Mum, and then we went to see the doctor.

The doctor told my Mum that I had to go to the hospital. Mum and Aunty drove me to Waikato Hospital, then we went into the waiting room and waited for a nurse. After I saw the nurse we waited for the doctor to come and see me.

The doctor said I would have to stay in hospital the night to have some tests done so then I called Grandma and Dee (Grandad) to let them know what was happening.

They did two blood tests and we had to wait for the results. Before they put the needle in they put some numbing cream on my arm for half an hour.

The tests confirmed that I had GBS (Guillain Barré Syndrome).

Then we went up to Ward 52: it was late so I went to sleep.

The next day the doctor came and checked my reflexes and my heart. I didn’t have any reflexes. The doctor said that my mum and I would have to stay a while in hospital. Mum cried, I think she was worried.

The next day the doctors came around and got me to walk up and down some steps while they video’d me for research, as GBS is very rare, especially in children. I couldn’t walk on my own any more and had to have people by my side in case my legs gave way.

I also had more blood tests and a lumbar puncture (they put a needle in my spine and took some fluid out).

My Grandma came to stay one night so my mum could go home for a rest. (We live 2 hours from the hospital). Grandma snored really loud. Then mum came back to hospital.

A couple of days later I saw a neurologist. I was given medicine to make me sleepy, while he did some electric shock tests on arms and legs. It hurt a wee bit when he turned up the shocks. The medicine made me go a bit silly, I made everyone laugh.

I started coughing and the nurses got worried because they said it was a ‘cows’ cough so I started on peak flows 3 times a day. The next day the cough had gone and the nurses said I was very lucky.

The neurologist told mum and I that I needed to have a blood transfusion (Intragram P).

The next day I started the transfusion by I.V – 8 hours a day for 5 days. I got really tired and it was hard to do anything with the line in my hand all the time.

My Aunty came and stayed a night with me while mum went home for another rest and pack some more things for me. Aunty took me for a wheel chair race around the hospital with Uncle Tim. And we had McDonalds for dinner.

I couldn’t feed myself very well, as my hands were getting really stiff and sore. By now I couldn’t walk at all and had to be carried everywhere or in a wheelchair. I was lucky that it all didn’t affect my lungs.

After the 5-day blood transfusion I saw a physio who did some exercises with me and showed me what to do when I got home.

After the weekend I was allowed to go home. I was given my own wheelchair and shower chair to take home with me. I spent ten days in hospital; I had so many visitors, cards, presents and flowers.

My teacher sent me a parcel of cards from everyone in my class, and some photos.

On the 13th of December I got home and my Aunty had put a bed in the lounge for me, and had decorated it with balloons. All the furniture around the house was moved so that the wheelchair could move around the house.

A Physio from Thames came and brought me a special toilet armchair, and got a man to put rails down the stairs. A local physiotherapist, Marion, volunteered to come to my house every second day to come and help me. She wouldn’t take any money from my mum because she wanted to help. I think she is a lovely lady. She was a lot of fun and she let me have spas.

Some days I was a bit naughty and wouldn’t do some of the activities because I was tired, but Marion kept coming back!

Christmas was a bit crazy as I got a skipping rope and soccer ball from Santa, but I couldn’t play with them. My grandma said my legs looked like sticks as I had no muscles in them.

Over the school holidays I had a lot of friends come to visit me. I started school for the year in my wheelchair because I still couldn’t walk. I had a teacher aide with me, her name was Karen. She helped me get around the playground with the other kids and take me to the bathroom.

My teacher was Mrs Somerville and she helped me lots, she had me writing stories again. I was a lot slower and messier than the other kids in my class.

I used to come home on Tuesdays and Thursdays from school to have my physio treatment, and to have an afternoon sleep.

A couple of months later mum, Aunty and Harrison were in the lounge and I was playing in my room and I surprised everyone when I walked out of my room on my own. They just looked at me really funny and mum started to cry and smile. I don’t know why I tried to walk but I just did it. I was really wobbly but really happy.

It was 4 months and 3 weeks that I had not walked, and now I had to slowly learn how to do this all over again.

I was only allowed to walk a few steps at a time and only when an adult was with me. I got really tired when I practiced walking, and some days I just couldn’t do it because my legs had lost their muscles.

Within a few weeks of walking I did the school cross-country with my Aunty running beside me. I got a special certificate in the school assembly for trying so hard.

My mum and my family would like to thank all those who helped me in my months of illness. A very special thanks to the community of Whangamata, they never stopped caring and helping my mum and me."

Courtney
03.2006