Can't have yesterday: Epilepsy Awareness

EPILEPSY AWARENESS MONTH

Yes my friends, it's here again. Time for everyone affected by Epilepsy to turn Purple.
It's out of a mark of respect. It's to remember those who've been lost to it. It's to teach people what it is and how it blights our lives. It's about knowing the facts and taking time out to tip your hat to the strength it takes just to out one foot in front of the other some days.

Zak has Epilepsy. It comes top of the "things that scare us" list.
He has LENNOX GASTAUT SYNDROME which is diagnosed by how it presents both clinically and on EEG. There is a specific EEG pattern. A slow spike and wave is seen. It also shows that Zak is having continual clinical and sub clinical seizures, of varying type, which are resistant to medication.
Physically, LGS means that Zaks development is regressed. At the ripe old age of 7 and a half, he functions at a level similar to that of a new born.

Zaks current favourite seizure type is a bit of an odd one. We find it very difficult to pin point the actual terminology of each of his seizures, so for now, we'll call this one the "pokey eye out one". It is most definitely TONIC in nature, as it involves a period of intense stiffening of his body, mainly his arms, which will simultaneously rise, bent at the elbow, making a bee line for his eyes/face. He has caused himself so many facial injuries but scratching, punching and poking his eyes, it's unreal.

His other seizure types are generally tonic, but he also has some Absence seizures, some are clonic and some we really just have no idea where to start pinning labels to.

What we do know is that 11 Anti-epileptic drugs down the line, and we're yet to find anything that makes even the slightest difference.

I couldn't possibly talk on here about November being Epilepsy Awareness month, without telling you that NOVEMBER is also DIABETES AWARENESS MONTH.

Part of the reason I have been so behind on keeping up with Zaks blog is that in November 2013, his beautiful big Sister, Ashleigh, was diagnosed with Type 1 Diabetes.
On the very day we were supposed to be going on a LONG awaited family holiday to Disneyland, Ashleigh took seriously ill. The GP told us she just had a tummy bug, when infact she was seriously close to slipping away from us.
The ambulance was called at 7 in the morning, after we discovered Ashleigh could not lift her head from her pillow. She'd lost what looked like all of her body weight over night, and her breathing was hard and fast. She looked skeletal. I've rarely been so terrified on my life, and believe me I've seen some scary times.

The paramedics arrived, and it didn't take them long to figure out what was going on. The Paramedic in charge said there wasn't even time to go get the stretcher. He just scooped her up in his arms and carried her to the ambulance waiting outside.

Less than a mile out of our home town, they had to pull over at the side of the road to try and work on her. We were losing her.... but running out of time, they had no choice but to put on the blues and two's and rush her to hospital.

It was horrific to have to stand in the wings while Doctors and Nurses rushed around her, trying desperately to get a line into her veins. But they'd all collapsed and at one point she had 2 Doctors and a Consultant stabbing needles in every part of her fragile body.

Thank god they did, because without that, she'd not be here today.

20 Cannula attempts later, she was having fluids pushed through. She needed Potassium, and Insulin to try to bring her levels back to a healthy point. There was talk of transferring her to Manchester Children's Hospital, and ICU were on standby.

It took about 24 hours, but they finally brought her back to us.

A week in HDU, a diagnosis of TYPE 1 DIABETES, and a fast track session on how to test her blood sugar levels, and inject her own Insulin, and the rest was up to Ashleigh.

In a few days in will be exactly one year since she was diagnosed, and oh my god, I could not be more proud.
She has sat her first year of GCSE's and already has enough marks to get the place at College she wants. We even spent the night at the college of her choice, and enrolled there and then.

She now uses an Insulin pump, where instead of guessing how much Insulin she needs and injecting it 4 times a day...now, she just works out exactly how many carbs are in her food, programmes it into her pump and the pump does the rest.

It's still early days really, but already I am able to take a back seat. She does all of it herself....only ever needing a kick up the bum to get out of bed in the morning, but then, she is still 15...