Ragdoll Mummas share epilepsy home truths – Part 2

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What tips do you have for kids getting an EEG and other invasive tests?


Ragdoll Mumma Kelly
: The first time my son had an EEG he was a hospital inpatient after suffering status seizures. He was in an isolation room because medical staff had been unable to establish why a healthy kid was suddenly having big seizures.

A male nurse came to his room and informed us that they needed to run some tests so he was going to have an EEG. He offered to get our son a wheelchair, but I insisted he walk after being cooped up in a small room for two days.

So off we trotted, I remember I had no idea what the test was and what they were going to do to our son. But I also remember, the nurse standing red-faced outside cardiology and reading the medical test request form again. “Oh, it’s an EEG not an ECG. We are in the wrong place,” he said.

At the time it wasn’t funny. I was exhausted, lost and just wanted some answers to what was going on with our son. So we just then followed the nurse to the right place where they would perform the first of many EEGs on my son.

My first bit of advice would be to a child’s parents to find out as much information about any tests that may be carried out on your child. Know that there is a big difference between an EEG and an ECG. Know that there are different types of EEGs available – week long, overnight, hour long, sleep deprived and ambulatory EEGs. Depending on your child’s epilepsy and where you live, may play a factor in what type of EEG they have.

Sleep deprived EEGs are the pits! This test involves having to keep your child up most of the night then wake them early the next morning. Travel to the hospital whilst keeping the cranky exhausted child awake and then ask them to perform a series of tasks including blowing on a toy windmill until they almost pass out. Then and only then when your both exhausted and ready to cry, they’ll ask you child to sleep. After finally settling enough to sleep they’ll leave them for a short time and then wake them up. At this stage with a head full of sticky concrete glue, they soak/wash your exhaustipated child’s head before sending you and your child on your way without any idea of results. THIS IS NEVER FUN!!!

My tips for your kids – have a heap of fun activities lined up for staying up late. We bake, play board and card games, watch a favourite movie and run outside to jump on the trampoline while the rest of the family sleeps. This is cool. In the morning a play at the park or a walk with some fresh air and as much technology playing and television watching as it takes without them falling asleep.

Good luck! You’ve got this!

Ragdoll Mumma Zoe: Well every child is different when it comes to EEGs eg sensory on head – and you won’t know until you do it the first time. For us there would always be a visual like a photo or video that we would show Lizzy so she knew exactly what was happening. We did this with any testing like MRI or PET scans. We would talk about things like flashing lights and having to blow the pinwheel at an EEG or the noise of the MRI and how she had to stay still. Blood tests have never been her favourite but we just talk her through every time.

The biggest tip I can give for any test is bribery. Yep good old fashion bribery. Example: if you can stay really still like a statue in the MRI you will get that doll you want or for blood tests a magazine. She would still be worried but knew there was something at the end to look forward to and that really helped.

There is a time and a place for bribery and invasive tests is a time to use them. I know that for some children they will be under general anaesthetic when getting tests done but I still think explaining what is happening if you can is helpful to take their anxiety away. As I said at the start, each child is different and do what works for them.   Sleep deprived EEGs are never fun hourly activities to keep them awake works well and an early trip to McDonalds always helps too.

What has epilepsy cost you?

Ragdoll Mumma Kelly: I’ve stopped counting the cost. Epilepsy has taken a toll on our whole family financially and emotionally. No one ever comes out ahead. I had to give up part-time work as I was unable to commit to many jobs because of the uncertainty that epilepsy brought to our lives.

Epilepsy shattered our perfectly normal family. I really think it broke me and even though we’ve managed to put things back together it still constantly looms.

Epilepsy is unfair. All of our kids have missed out because of it. I know I expect much more of my kids than they should have to cope with. They shouldn’t have to be part of this. No one should!
Ragdoll Mumma Zoe: My sanity, I’m serious! Epilepsy cost me any shred of sanity I had. I have come out the other side of a breakdown but my anxiety is still there and I have to manage my mental health all the time. It has personally cost me the chance to take on more work which I suppose in some ways shouldn’t be a cost because family comes first, but knowing that my girls are 10 and 12 and that I haven’t been able to take on more work to help our family financially is frustrating, but it is what it is.

Friends, epilepsy has taken away some of the relationships we have had in the past. When you have to say no to things when your little one is having seizures and you know they can’t stay out late or that a BBQ with friends is too overwhelming for them you do lose your connections. Many people don’t fully comprehend the impact and you get frustrated with their lack of understanding and get a little bitter and twisted. When you see someone post about how their child has a cold or an ear infection and how they haven’t had any sleep. Then you think about how you haven’t slept properly for years and your child has a condition that medication isn’t helping, you do become angry with people not appreciating what they have.

But the old adage “walk a day in my shoes” is true and I do understand that people don’t do it intentionally they just have never lived it so don’t get it.

 

What do you wish people knew about epilepsy?

Ragdoll Mumma Zoe: I wish they knew that it’s more than just seizures. I wish they knew that medication doesn’t always work. I wish they knew that there are so many more seizures than the two people most often think about like tonic clonic and absence seizures. I wish they knew that our kids miss out on opportunities because epilepsy is so grossly under supported in the education system. And lastly I wish they knew that living with a child with epilepsy means that you never fully relax and that you are always on edge and waiting for the next seizure, even if they get a break.

Ragdoll Mumma Kelly: It’s more than just seizures and it’s freaking hard. I don’t ever stop worrying about when or if there’ll be another seizure. I often feel guilty that this isn’t the life that we planned for our family.

It’s exhausting. There are ongoing medical appointments. We average at least one or two a week. We have to juggle everything.
Do you ever think of running away?

Ragdoll Mumma Zoe: Oh God yes!! To a secluded island with Sven a tall blond massage therapist and unlimited chocolate. I would sleep half the day away. Option two is a epilepsy commune where you could live with other parents and all share the load and your child could be a complete toe rag and nobody would bat an eyelid.

It becomes all consuming sometimes and you have no other choice but to keep on going.

Mind you I am sure my daughter would like to runaway from her brain which could be a bit messy. I think that is what stops me from walking out the door sometimes. It is knowing that however dodgy my day has been she does it harder.

Ragdoll Mumma Kelly: Sometimes, but I never would. Love my family way too much x
What is worse behaviour or seizure?

Ragdoll Mumma Kelly: Well, both are horrid and I guess it depends on which is winning the war. The status seizures that last for hours strip our family bare. They bring some of our lowest points. I wonder whether our son will survive and what these seizures are doing to his brain. Even though he’s a smart kid, I often fear that brain damage caused by seizures is a real possibility.

On the flip side, our son’s behaviour can cripple our whole family emotionally. I have had to lie on top of him to stop him harming us or himself. He’s physically attacked people he loves; he’s been destructive and has run away from school and home countless times. Intentionally or unintentionally he has put his own life at risk during the bad times. This breaks my heart – my little boy is just nine-years-old.

Fortunately, apart from once recent seizure setback, he is winning! Even though we recently DOUBLED his meds, he’s coping so well. When he is winning we all are.

Ragdoll Mumma Zoe
: Behaviour hands down the seizures are unpredictable and stressful but the behaviour is full time 24/7. The behaviour stems from meds and seizure activity so you know they can’t control it a lot of the time. The more we have learnt the better we are with behaviour management but there are still days when Lizzy has asked for the same thing 150 times and you have explained 150 times that she can’t have it or do it and it wears you down.

We are in a good spot with behaviour, but I have very clear memories of nights spent with a screaming out of control child and my husband and and me taking turns trying to manage her and this was every night, night after night. Oh Keppra how I loathe thee.

It didn’t only impact on Lizzy it deeply affected her sister as well. When Lizzy had a seizure we could help support her and her sister would too. But when it came to behaviour, we would have to send Kenzie to her room so she didn’t get attacked and this created a very unhealthy situation. Kenzie ended up having counselling after a particularly bad run so we could work out some strategies on how to help support her too. Seizures if they are big status ones are confronting and traumatic but  behaviour can be just as traumatic.

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