Let’s make this clear,
Seizures sucks ! They are pretty much the one thing I wish I could take away forever.
Watching them attack at the most random times and crippling my daughters mind and body over and over again from 1 min to 6 hours.
She has a chromosomal condition which has led to a brain condition that causes her seizures. Her seizures come for her brain stem so can’t be treated with surgery.
We were lucky enough to to have five months seizure free last year but this year they are all over the place but not lasting as long. Most under 20 minutes.
There have been many times seizures have almost taken the life of our miss 7. Many times in the middle of the night and many times where she needs assistance breathing. See some seizures she breathes fines and others only exhales and no inhaling, then the bad ones where nothing at all. Now I have been told that in order for the seizures to switch off it needs the co2 levels to rise high enough. So in other words the person goes blue and then hopefully the seizures stops and if it doesn’t you need to intervene. I have had to give breaths in and also had to preform full CPR. Many times she has needed to be intubated (put on life support ) and treated with emergency stop drugs.
Epilepsy affects all the family not just the person who is suffering from the disease.
In one way we are lucky my daughter doesn’t walk as I’m certain her injuries would be so damaging when falling with a seizure. Only just this afternoon after I had her sitting on my lap for cuddles she started convulsing within minutes of putting her in her waterchair ( lounge chair )
The panic does change but the fear never gets easier. Each seizure I still suffer the what ifs ?
Maybe this is the final one that will kill her
Maybe this one we will have to go to hospital as it won’t stop
Maybe maybe maybe
How will I juggle the kids
I have a seizure plan to avoid going to hospital that I follow as my daughter has cluster seizures one after the other and the neurologist made me a plan with drugs to use to help stop them in order to stay home. Otherwise we would be in hospital all the time.
These drugs for our emergency plan are the typical midazolam and an old drug clobozam. We take them when needed to stop the clusters and they work taking them then. However the daily seizure medications are kept very strict with times and measurements. She is currently on four anti epileptic drugs three times a day.
I just wish people wouldn’t have to be hit by such a horrible disease. It’s deadly and people don’t realise how dangerous it is. I have been told my daughter is at such a huge risk of dying from sudep. Sudden unexplained epilepsy death.
Two out of my four children have experienced seizures but only one is epileptic. I hope one day there is a cure