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The calm after the storm

Take me back to one month ago and I didn’t think I would ever be writing this blog. W has been seizure free for FOUR WEEKS! Four, whole, glorious weeks. Today we danced to ‘Backstreet Boys’ in the living room with sunglasses on and hat’s on backwards (though these blogs you might be getting an idea of my very varied musical tastes).

For the first time,in a while, I could breathe.

The funny thing is…I knew that everything was stressful, but until now I don’t think I’ve taken in how stressful it has been.

I have felt rather poorly this week. Completely worn out and able to sleep at the drop of a hat. I decided I was coming down with a bug, but nothing has materialised. I have slept for hours, I’ve cried and screamed and have realised it isn’t a bug. It’s the calm after the storm. I need to assess, redress and rebuild. Self-care is needed.

I still struggle with the unknown of Epilepsy. W’s medication is seeming to control his seizures, but no one can confirm it will continue this way. I feel unsure how to deal with this ‘calmness’ which I realise sounds weird and ungrateful. We are overjoyed that W has had some respite. I realise how lucky we are too. We’ve been able to do all of the fun things we used to do.

Still in the back of my mind I’m waiting for something.

I’m prepared. I’m on alert.

How to deal with these random set of emotions is tricky. My solution is booking in as many random activities as possible. Tubing down the local ski slope has kick started this. You are basically chucked down a slope in an inflatable ring. It’s amazing! Concerts, comedians and wild beach camping is to follow. We’ve promised W that we can camp in the garden when the weather is nice too.

Any other advice from parents who are dealing with the ‘calmness’ would be very welcome.

I hope you all have a lovely bank holiday weekend (when this horrid weather clears)

Love,

Clare x

Diagnosis and medication, Epilepsy and parenting

Buccolam (Emergency medication).

For a while I’ve been anxious about going anywhere ‘too far off the beaten track’. I plan our outings meticulously if they are somewhere we haven’t been before. I even started googling Ambulance response times. The problem with doing this is that it made me panic even more. I realised even if W was having a prolonged seizure he would be a category two. This would mean that if anyone in the area was a category one he wouldn’t be priority. Every single Tonic Clonic W has had has been over five minutes. If paramedics didn’t arrive quickly, we would be watching him go through the motions of a TC and would be unable to stop it. We couldn’t prevent status epilepticus.

Status epilepticus is a condition where a person has a seizure (convulsion or fit) or a series of seizures that last for 30 minutes or more, without a complete recovery of consciousness.

https://www.gosh.nhs.uk/medical-information/medicines-information/buccal-oromucosal-midazolam

It was like going into battle without reinforcements or armour for that matter.

A friend @epilepsy_parent listened to my concerns and highlighted that Buccolam (Emergency medication) should be something we should be asking the Neurologist for. I did have to push. I called a lot. I asked for the criteria and then finally I got the call…

They were issuing Buccolam to us and wanted to begin the administration training asap.

I can’t not explain the overwhelming relief I felt. I cried. I danced. I sang to the Lion King in the kitchen.

The training was 45 minutes long and Buccolam is easy to administer. On its first usage a paramedic or health professional must be present as it can affect breathing and may turn into a CPR situation. After the first usage you are free to administer yourself (once trained). You are given four doses and these are tailored to the age and size of each child/adult. They stop the need for paramedics to use diazepam, which is a lot more traumatic for the patient. The 4 doses enable us to have one at home, one at nursery, one in W’s bag (which we take everywhere) and one spare just incase.

We went on our first holiday (since W’s diagnosis) this week. It was the very first time I felt ok about taking him far from home. We could help him if needed. We finally had the troops and armour with us wherever we went.

Buccolam has empowered us. I feel enabled to make sure that Epilepsy will not beat W. We are waiting and prepared to conquer that monster, when and if it rears its ugly head.

Love,

Clare x

Emotional support, Epilepsy and parenting

Living life on high alert.

The phone rings. I receive a text. Someone calls my name from the other room. There’s a strange noise. These are all moments that currently have my heart leaping out of my chest. The worry isn’t just your ordinary everyday worry. It is a deep all-consuming worry that sticks in your throat and makes your chest feel heavy.

Each time W has had a seizure it has been a shock. They are completely random and we still can’t detect noticeable triggers. I’m on high alert 24/7.

Sleep. I don’t think we’ve had a settled night since October when the Tonic-clonic seizures began. We bought a cheap video baby monitor in a hope to alleviate some anxiety. The problem is…every single sound makes us jump out of our skin. The panic that we might miss a seizure and he is laying on his back, without help, often invades my dreams.

Quite understandably, I also don’t want to be more than 15 minutes from W at any given time. Fortunately, I work 5 minutes from his nursery and approximately 10 minutes from my home. Each place we visit I also check for phone signal/ or if there is close surrounding help if something did happen. It’s sometimes a hard decision between making sure that W is ‘living life like a toddler’ and making sure that he’s safe. Large soft play area’s for instance; I’m sure W would find exciting, but the idea of not being able to see him for periods or time or him having a seizure high up fills me with dread.  

Medication worries us. What if we forget? What if he hasn’t eaten enough food before it and it plays up his belly again? We have set alarms on both phones and regularly check each other. We make sure we are almost over stocked in the house. The repeat prescriptions can’t be forgotten and we also pray that he keeps the dosage down, so we don’t have to decide if it needs to be given again or not.

We are finding the most difficult thing after the Epilepsy diagnosis is there is no certainty. No one can tell us why. No one can tell us when. No one can tell us if it can be controlled. No one can give us any assurance. Everything is completely out of our control.

Deep breathes, count to ten and plough on. We got you baby. We’ll beat this thing and together we’ll stay strong.

Lots of love,

Clare