Everybody was kung fu fighting
Those cats were fast as lightning
In fact it was a little bit frightening
But they fought with expert timing
You now have the song in your head hopefully and are happily singing away to it. Made me laugh when I thought about using it for this blog. It was either this song or eye of the tiger to get you in the mood.
My gorgeous girl has been through a lot in her 8 years with epilepsy but nobody ever ever warned me about this.
I have been scratched, kicked, punched, bitten, pinched, screamed at and had things thrown at me (always happy when a soft toy gets thrown not so much when a harry potter book gets thrown). I never knew how strong a little person could be when they are angry and they don’t look like a cute Kung fu panda either.
A few swift safety moves to keep her and us safe would ensue we would quiet often wrap her like a baby until she had settled down and sometimes we just waited out the 1.5 hour outbursts.
I have watched my daughter cycle through emotions in minutes of each other like someone on the brink of psychosis. (Happy,sad,angry,crying,happy and repeat)
I have watched her sit afterwards crying “my brain made me do it”, “I can’t control it”, “I’m bad”and “you all hate me”.
No one ever told us that medication could cause behaviour issues (oh Keppra how I loathe thee) and no one ever told us that seizures could have a pre-seizure stage which could cause behavioural changes. Hey who hasn’t wished their child to have a seizure so they could reset.
I’m going to be honest with you I think behaviour is a whole lot harder to deal with then seizures.
I talk to lots of parents and the two things we all hate are behaviour and seizures.
“He grabbed a hockey stick at school and hit his principal”
“She threatened her younger brother”
“He ran out of the school and was missing for two hours”
“She is saying she doesn’t want to live anymore”
“We had to hide the knives and scissors”
“She tried to kill the dog”
“He ran into the middle of the road”
“I just can’t handle the hyperactivity these meds are causing”
“She is starting to control everything I think she has OCD”
I’m sure everyone with a child with uncontrolled epilepsy could add to this list( please do in the comments xo)
I’m not painting a very pretty picture actually if it was to be a picture I’m thinking it would be “The Scream” by Edvard Munch.
I remember the day I drove in the drive way from work a couple of years ago and I was sitting there thinking I love my daughter but I bloody hate her at the moment. I contemplated driving out of the driveway and running away. Maybe to a nice deserted island with endless chocolate hmmm I can see it now oh chocolate how I love… Okay back to what I was saying.
At this point seizures were an ongoing thing and behaviour was relentlessly every night. We had reached a point where the behaviour from meds was affecting our whole family. My oldest daughter would go to her room and then try and come out and help to settle the beast and would then end up crying as well because of the noise and tension in the house.
We couldn’t say it was because we were bad parents, we were parents who disciplined our kids if they did the wrong thing. But we could have told our young beastie that it was wrong and she would do it again the next day. No reasoning ability and no memory of the previous days battle.
Was it meds, was it pre-seizure behaviour we had no idea but we were done.
Keppra was booted from our house not long after my driveway moment (it had been my girls main med for four years) we were scared of what coming off it meant for her seizure control would the big statuses come back but by this point I don’t think any of us cared. A week after coming off Keppra this chatty girl started to surface who would natter on and on and on we were all amazed at how she was able to express her feelings. We couldn’t believe the difference in her. This is when we knew we had made the right choice, a scary one but the right one.
Pre-seizure behaviour still happens and we have a saying in our house “don’t poke the bear”. I mean really don’t poke the bear, if you can see their head is about to swivel round like the exorcist step away and let the bear take a deep breath and go and throw things around the bears room.
To all the mummas and pappas out there who are contemplating running away. First off we could get a group deal on a cruise so let’s make sure we don’t do it individually and if you plan on sticking around know that the days and nights can be bloody hard. But as mummas and papas we know our kids best (intuition is a wonderful thing) and we know when a med is not working and is causing more problems then the seizures.
Make sure you chat to your neurologists or paediatricians and discuss what other med options are out there. For some children I know that behaviour medication has been their only option and for those who can’t change please know that we all know what it feels like and we know how hard it is and you are doing the best job you can.
Big Mumma Bear Ragdoll Mumma Hugs to all