From Dawn Gray
Callum is now 15 years old. Diagnosed with R20 at 7 years old. He started having petit mals when he was 8 years old. They got a lot worse and developed into absence seizures. This made us all very aware as a family not allowing Callum to be left on his own. He would wander off, not be able to speak but could follow instructions.
After several addmissions to hospital we were prescribed Buccal Midazolam. One seizure lasted 7 hours.
Jamie is Callum’s younger brother. Without realising it he keeps an eye on Callum and lets us know if he goes blank. Thankfully now only once or twice a week lasting 1 to 3 minutes. We have noticed that extreme hot or cold can set off a seizure.
Callum would love to go shopping on his own. A real worry for us parents!
He does have behaviour problems although mainly at home. He struggles with learning but school are very supportive.
When Callum was 12 we did the ketogenic diet for 2 years and 2 months. (Recommended 2 years). After 10 days he was much more alert. The diet is hard and you are in the kitchen a lot. It is worth it when you see how Callum is now. He has been on no drugs and no Buccal Midazolam for two and a half years. The diet was hard at the end as he became a teenager and refused or ate the wrong food.
Callum described his head as “feeling clean” when off all AED’s. We tried 7 different drugs and no response to any.
June 2014 we had a coffee and cake afternoon. We raised £670.00 Pampered Chef came and donated £90 through sales. We had local crafts, cards, clothing and the great weather all helped. Wearing our R20 polo shirts really helped too. (Great that Rob at Werx got them done in time!).
Another idea I had which is not a lot of work. Buy a box of chocolates and sell raffle tickets. I did this with an Easter Egg earlier in the year and raised £70.
Jamie’s school then offered me to come and sell tickets at a coffee morning. I was so touched when they wanted to donate to Ring 20 Research & Support UK.
Jamie plays rugby and I am hoping to do another raffle walking round the pitches and selling raffle tickets for a bottle of booze!
I am so glad we are going to have a website. It meant an awful lot to us been able to share what we are going through. We try to be a normal family but living with epilepsy and behaviour problems is very trying.
For all of us and new families the support we have from each other is vital, but also helpful for all the medical professionals involved.
Cheers to our new website. Well done to Allison, Don and Chris.
Happy New Year to you all.
Dawn Gray and family.