Just the beginning...

It was March 2011 and our daughter had woken up with a tummy ache and had to rush to the toilet. She vomited over and over again, then back to bed, up again vomiting 2 minutes later, then back to bed, up again...the cycle continued for about 4 hours, then she suddenly fell into a very deep sleep. You couldn't wake her. We let her sleep it off and after about 4 hours, she woke up back to her usual bright and bubbly self. It was as though we had just imagined the morning. We shrugged it off as a virus or something she'd eaten and didn't think about it again. That is until a month later, the same thing happened. Early morning pains, leading to an episode of vomiting, then sleep, then back to normal by 1pm. Just another virus? Hmmm, could be. Then it happened again, the next month. And then again, the month after.

Then it began to happen every 2 weeks. All this time we had been taking her to the Doctors, who shrugged it off as a virus, by the time we got her to them in the afternoon, she was chirpy and bright and I'm sure they thought we were making it up. It happened every 2 weeks for about 2 months, then it began happening weekly. Every Monday morning.

"She must be getting bullied at school.", "She's scared of something", "Is everything ok at home?". We had these questions asked over and over again. I was in consultation with her teacher thinking something was happening and she just wasn't telling us. Nothing, couldn't be happier at school, top of the class, has lots of friends. Her teacher was as puzzled as we were because she knew she was going well.

We saw a wonderful Doctor, who referred her for ALL sorts of tests. All returned negative. Coeliac screening - negative. Giardia - negative. Urine analysis - Normal. Stool culture - Normal. Incredibly frustrating.

The Doctor decided to give her the antibiotics that treat Giardia just in case. This was in July 2011. From July to mid-November, she didn't have another episode. Must have been a tummy parasite.

15 November 2011. I wake to the sounds of her coughing in the toilet...surely not. Unfortunately, there she was, hunched over the toilet, hair in her face, vomiting again. My heart broke for her.

1 December 2011. Driving to work at 6:30am, I get a call from my husband. "She's doing it again".

13 December 2011. 2:30am I hear the sounds of coughing again. Over the toilet again.

27 December 2011. I get home from a night shift, go up the hallway to have a shower and hear the coughing again. She's so upset and tired.

Each episode lasts from 3-5 hours and is followed by about a 4 hour sleep (coma-like is the only way I can describe it). It normally begins early morning and wakes her up with a pain. She has about 30 seconds to rush to the toilet between feeling the pain and vomiting. She vomits over 20 times in an hour. We try and give her fluids in between just to give her something to bring up. It is heart breaking to know that all you can do is pull her hair back and rub her back. We do not have a diagnosis right now. We see a GI specialist on 3 Feb 2012. That day can not come quick enough. Our Doctor thinks it may be Cyclic Vomiting Syndrome.

Back in May/June, I thought this was just a name made up because they couldn't work out what it actually was. Turns out I was very wrong. I stumbled across information on it and a wonderful forum and have done so much research on it now that I am 99% sure that this is what is wrong.

My beautiful little girl has been going through this since March, there are many others who have lived with this since they were 2 years old!!!! I plan on using this blog to document her progress, from initial symptoms to diagnosis and treatment. She is a special girl and deserves that at least. Her strength amazes me. She is so brave. I know I have missed many things out here, but I will continue to add to it as I can.

Kenze, we will fix it honey and when we do, we'll spend early mornings together with a milo instead of a toilet bowl x x x