In 2008 Chloe began having what we called “funny turns” which her GP and a consultant at the hospital were unable to explain.
Her symptoms where almost constant stomach ache, periods where she would be unable to move and complaining she was too hot.
The area around her mouth would become white and see-through. Her eyes would be dilated and glazed over and she did not like to be touched. She also had an increased sensitivity to smells which she had previously liked.
In September 2009 our lives changed forever – Chloe’s funny turn was so bad that we called an ambulance and she was admitted to Tameside General Hospital for observation. The whole family were very distressed as we’d never seen an episode so bad and Chloe was totally distraught.
The following morning we were visited by Dr Massarano who listened patiently to Chloe’s tale and diagnosed a form of Epilepsy called “Panayiotopoulos Syndrome”. At first we could not believe it as we wrongly believed that all epileptics shake while fitting, however Dr Massarano explained the nature of the syndrome and we agreed.
Dr Massarano introduced us to the Paediatric Epilepsy Nurse Carolyn Taylor and they informed us of the care Chloe would need and how to administer the neccesary medication.
Currently Chloe is on 400mg of Carbamazepine twice a day which helped initially but Chloe seems to be building up a tolerance to the drug. Chloe also has other medical conditions which are not related to her Epilepsy. Chloe has developed obsessive compulsive disorder and she has been diagnosed as suffering from hemi hypertrophy which means one side of her body grows faster than the other and is stockier.
We got involved with Hope so that Chloe would meet kids with similar conditions and learn that although times can be hard, with determination and care fun is still possible with epilepsy. We were surprised to find that we have all benefit from our involvement with Hope and we are now proud participants in every meeting and event.
Without the truly excellent help, advice and support of Dr Harris, Carolyn Taylor, Dr Massarano and our amazing friends at Hope I do not know where we would be or how we would have coped over the past year and I simply cannot find words to express how grateful we are for their above-and-beyond help.