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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, Epilepsy and parenting

No words

I’m a planner. I write lists. I check them twice (or more). I prepare for most situations way before they happen. Epilepsy doesn’t suit this. Epilepsy sneaks up; it’s unexpected and with W seems to be for absolutely no reason.

I haven’t written a blog for a while, as I frankly don’t know what to write. I have no answers. I don’t know what’s going to happen or what the next steps will be. All of his tests have shown nothing so far which is great. I felt like a weight had lifted and his seizures seemed under control with medication.

Then the absences began.

We had a week of random absences and I concluded he was tired and things would settle after he had rested. We returned to Neurology last Wednesday and they confirmed the absences and upped his medication. Again I thought…it’s ok it’ll all be controlled soon. The increase in medication seemed to trigger ‘Night terrors’ which again left us all exhausted. He then suffered another longer absence this Friday – I was at work.

I told people at work I was tired (which wasn’t a lie) but I just couldn’t verbalise it all again. It’s hard for people to understand. You don’t want to always be the ‘party pooper’ and I didn’t know what to say.

I just couldn’t speak.

We are having to live with the fact that things are completely out of our control.

‘Is he going to have another seizure?’ I don’t know

‘Is he going to grow out of it?’ I don’t know

‘Will the medication control them’ I don’t know

‘Will it affect him when he goes to school?’ I don’t know

‘What type of Epilepsy does he have?’ I don’t know

I know this is the reality of Epilepsy for many. Sometimes there is no reason. We’ve got to live with the unknown and get on with it. I’m determined that it won’t define him. I’m determined that he will be a care free toddler and won’t lose his infectious smile. I’m determined that we will keep fighting on and together will raise awareness of Epilepsy.

Lots of love,

Clare x

Diagnosis and medication

Lets start at the very beginning…

Firstly I am not a medical professional. Just a Mum telling our story so far.

W had two febrile seizures when he was around 18 months old. He had tonsillitis at the time and we were told it was a normal reaction for a child who has a high fever.

Fast forward to this year. W has now had 2 convulsive, tonic clonic seizures and numerous absence/unexplained episodes.

I remember being in the Neurology waiting room. I honestly believed (even after 1 convulsive) they were going to send us home and say ‘come back in 6 months’ but they didn’t. They diagnosed Epilepsy. I cried.

I couldn’t believe it. I still thought they’d made a mistake. I remember speaking to the Epilepsy nurse and considering not putting W on medication. I found the possible side effects of Sodium Valproate daunting. Surely he didn’t need it? Nothing had actually ‘proved’ Epilepsy.

After this we visited hospitals for numerous tests. MRI’s, EEG’s, ECG’s, bloods. Then another convulsive seizure hit 2 days before Christmas. Yet again we were in hospital. It really hit me then. He was Epileptic and this was the start of a new chapter of our lives.

We started his medication on Christmas Eve and so far so good (apart from the tiredness and over eating) he’s only had a cluster of absences.

We are due to attend another EEG next week – but this time sleep deprived. I am anxious but I’ve now developed a little survival kit and grab bag for hospital visits. If you are just starting this journey, like me, it might be helpful (if you’re an experienced pro it would be awesome if you could add any helpful tips in the comment section)

  1. Food (a lot of food, snacks, drinks)
  2. Pj’s and comfortable clothes, as you never know how long you’re going to be there. Dress in layers as it’s so hot in some wards.
  3. Magazines/small toys and DVDs
  4. Wet wipes or similar
  5. Deodorant
  6. Socks/slippers
  7. Phone chargers (depending on length of stay or procedure).
  8. Change for the car park

Wish us luck for next week. I will update you on how it goes,

Love,

Clare xx