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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

Diagnosis and medication

Sleep deprived EEG, Melatonin and Sodium Valproate.

It’s been a tricky week for W. Not only has he been getting used to Sodium Valproate, but he also managed to get a cold and then underwent another EEG – this time sleep deprived.

W has been exhausted this week. The increase in dosage and the occurrence of a cold, caused a normally rather polite and sensitive young boy, to mutate into a grumpy, irritable, zombie. This thankfully seemed to be short lived.

Sleep deprived EEG

We let W sleep 8 hours (he normally sleeps around 11). We turned the evening into a fun experience and hunkered down on the sofa with a massive bowl of popcorn and a family film. He loved being a ‘big boy’ and being allowed to join Mummy and Daddy for the evening.

Popcorn fiend

We woke him up around 5am to ensure he was tired by his appointment time of 2pm. We had to go to a children’s ward one hour before – to be given Melatonin. Melatonin is a naturally occurring hormone and just aids a gentle drift into sleep.

W slept pretty quickly (this was a massive relief after our hideous sedation experience before his first MRI). The EEG wires were placed onto his head pretty quickly whilst he watched a television that had been wheeled into Neurology. He wasn’t impressed that I’d forgotten his Paw Patrol DVD. During the EEG, which lasted around an hour, they monitored electrical activity in his brain and recorded his movements. After this he was woken up (we think at this point he may have had an absence seizure-tbc) they then tested for photosensitive Epilepsy by asking him to open and close his eyes whilst a light flashed.

W took a while to get back to normal. He did however wake up pretty quickly from the Melatonin and traveled home without any fuss.

Unfortunately before bedtime he started sobbing inconsolably. It had all been a bit too much. He was very overtired and didn’t really understand. We washed the ‘sticky stuff’ off his hair, that was left over from the EEG and I cuddled him to sleep.

Distracted whilst the wires were placed on his head

The next morning our W returned. We have two weeks to wait for the results. We hope that they shed some light onto fully diagnosing his Epilepsy.

We are all looking forward to the weekend and having some time to repair,

Clare x