What an emotional roller-coaster of a journey we have been on!
Caitlyn was finally referred to the specialist at the hospital here in Christchurch, New Zealand for her severe eczema early 2014, she was 7 years old. Her specialist Tom was great and we were seeing results. First November 2014 I took Caitlyn to the food and allergy show, where she was lacking energy and wanted to lay down all the time. I struggled to get her to the car and took her to the Dr. He was unsure what was wrong and said it may be a form of childhood arthritis, he was absolutely stumped "come back in a few days if she's not improving"! I booked an appointment with my Dr the following day. By then Caitlyn was complaining of "funny feelings in her feet" and was stomping when she walked... She's a dancer, she does not stomp!! I can not being to explain the fair as a mother seeing your child poorly and no one has answers. Our Dr had just read an article about GBS days earlier - they've never had anyone through the clinic with this so she was very specific in her tests. We were referred to the hospital immediately.
Someone was watching over us this day. When we arrived at the hospital her specialist Tom was the paediatric Dr on the acute ward. He got her to try and climb on the bed, walk, and reflex tests. The trust she had for him was a blessing as next came the lumbar puncture... still amazes me to this day how brave she was. The next morning was the MRI and confirmation she had GBS... What the hell is GBS was my first thought! We were told to google, find out as much as we can as we'll need to know how bad this can be, and find support out there.
Caitlyn was given three doses of immunoglobulin.
She got worse before she got better. Caitlyn ended up having a mild case of GBS. She spent a week in hospital, had her final term before Christmas off school, and six months of weekly, fortnightly hospital visits. It took over a year before all her reflexes were back and her energy levels were back to normal. She would still get tired quickly and sore, but this was getting better.
We are unsure how she got GBS, they said it may have been due to a tummy bug.
30th October 2016, Caitlyn woke with sore feet and legs! I tried not to panic and asked her all the questions the specialists did. I took her to the hospital where she was admitted for observation. Going through all the reflex tests again, I had my fingers crossed we were not going down this path again! Sadly she is 6% of those diagnosed with recurrence GBS! Again it was a mild case. No treatment was given and we spent the next 6 months with hospital visits and tests.
Fast forward April 2017... Caitlyn is doing hiphop lessons, playing football and she even raced in a mountain bike relay. She gives everything 100%, she does however get tired and crashes quickly! Her feet aren't 100% recovered with the jerk reflexes and feeling of temperature, but you would never know the journey she has been on.
This is Caitlyn O'Regan, 9 years old, from Christchurch New Zealand, and she's our GBS warrior ❤
