Epilepsy & Us

Today is epilepsy awareness day and I’m wearing purple for all the purple warriors out there including my own.

Epilepsy affects 1 in 3 of those diagnosed with Autism.

On March 22nd last year my little man was blue lighted to hospital on a code red because he had woken up during the night and was sick, he then gradually became less responsive, no shaking movements like you would imagine a seizure to be like, his oxygen was low and co2 levels high, once at the hospital he had another type of seizure this time he moved, but just on his right side, it was stopped by anti seizure medication, he was also given antibiotics, and antiviral as they were unsure what it was, still unresponsive they spoke of possible intubation, however his condition slowly started to improve those 6-9hours felt like months! He was given an mri and lumber puncher.. Sedated as he had started to wake up, he was very weak all day and was kept in the high care unit within the children’s ward so they could watch him. It took a week for all results to be back and he was allowed home, another week for him to be back to himself.

10 weeks later it happened again, everything the same, almost intubated but this time he responded a little sooner although he didn’t completely wake up for about 12 hours. It was at this point he was diagnosed with epilepsy, and given medication and since then he has been OK.

Children’s brains are growing and changing all the time so we were told that as quickly as it came it could leave, we just have to hope and pray that it stays away, in the meantime we have a stats monitor for him in the night time and he’s in our room so we can watch over him, we didn’t get much sleep last year it was the worst days of my life, I’ve never been so terrified! Nothing prepares you for it! 💜💜💜

Epilepsy definitely isn’t what I thought it was, I was shocked at how little doctors know about it, I thought it was something they knew everything about. I was also shocked at the fact that the night time monitors that could save so many lives were not available on the NHS, they have to be purchased solely yourself and they cost £100’s! There is however a charity I came across called The Daisy Garland set up by parents who lost their beautiful little girl to epilepsy, they raise money and people can apply for the monitors if medication doesn’t work. You can find their Facebook page here

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