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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

Emotional support

My Stress Control Toolbox

I’m great in an emergency situation. I don’t panic. I’m organised. I know what I’m doing. A couple of weeks, months, years later it is like my mind catches up with my emotion and I need to start employing techniques to reset and restore.

I’ve been attending Stress Control sessions through the NHS Wellbeing service. They are a series of adult education courses where someone will teach you all about stress and how to tackle it. These sessions have enabled me to begin building my own ‘toolbox’ of techniques when things are getting tough. A lot of these techniques you can use quickly whilst at work, hospital etc. In this blog post I’ll be revealing what’s in my ‘toolkit’.

Abdominal breathing and breathing training:

This is basically breathing into your diaphragm and abdomen. When you get stressed you may find that your chest tightens and your heart pounds. This technique helps to calm me down and the great thing is no one needs to know I’m doing it.

  • Fill up your stomach with air. Some people like to place a hand on their chest and belly button to check that the chest isn’t moving but your diaphragm is.
  • Pull in your stomach and not your chest on breathing out.
  • Breathe in through your nose and out through your mouth.
  • I often combine this with ‘Breathing training’. On my first breath I think ‘1’, breath out I think ‘relax’, breath in I think ‘2’ and so on…
  • The idea is to use slow normal breathing. It might take a while to get used to it, so don’t be put off if it’s tricky at first.

Progressive Muscular Relaxation (PMR)

This is my favourite! I was very spectacle at first as I don’t find it easy to relax. This I adore.

  • You’ll need to download the relaxation on https://stresscontrolaudio.com or go to NHS choices www.nhs.uk and search ‘moodzone anxiety control’
  • You need to find a room and some time where you can ensure peace and quiet.
  • DO NOT listen to this whilst driving. It really does work.
  • At first you may find it difficult to relax. Give it a chance and try it a couple of times.
  • I’d recommend being fairly relaxed when you try it for the first time too.
  • When you have honed these skills, you can move onto the ‘Quick Relaxation’ tracks when you feel ready.
  • Eventually the aim is that you’ll be able to do this independently and can ‘nip stress in the bud’ before it begins to take over.

The Big 5 Challenge

This is a way of challenging those negative thought. It enables you to stand back from a situation and to take a moment to assess it. The idea is to ask yourself the below questions:

  • What are the chances?
  • What is the worst thing?
  • Am I right to think that?
  • The five-year rule
  • What is this worth?

Breaking Stress Up

If you are aware that a stressful situation is going to come up. This is a great strategy to use. This is about dealing with the stress in chunks instead of letting it build up.

  • Step 1 Prepare to face the stress -set a plan for coping and realise that it’s ok to feel stressed.
  • Step 2 Face the stress- take it one step at a time and use some of your ‘toolbox’ techniques to stay in control.
  • Step 3 Review how it went- congratulations you did it! Review and realise you can do it again.

I’m not an expert

The above are in my personal ‘toolbox’. I’m not a medical professional or trained in the above techniques. I’m just sharing what is working for me. This is also not a comprehensive list. The stress control session provides a more in-depth overview of stress and anxiety in general and will enable you to build your own personal toolbox. The great things about these sessions is you don’t have to talk and you can also take friend for support. These are the things that work for me. They might not work for you – so I’d advise getting in touch with your GP or calling your local Wellbeing team direct if you feel the need for help.

Wellbeing Norfolk and Suffolk Branch:

www.wellbeingnandw.co.uk

Call: 0300123 1503

Samaritans helpline:

Call: 116 123

Remember you’re not alone. Contact someone if you need help and advice.

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

Diagnosis and medication

Sodium Valproate

Week 1- 4

The idea of medicating a small child (Or anyone for that matter) is a daunting one. I read all of the leaflets and researched online. It didn’t help. In fact it made the situation worse. The best thing I did was ask a ‘friend of a friend’ for advice, as her little one had also been diagnosed with Epilepsy. It was a breath of fresh air. I hope to do the same for anyone reading this.

The side effects for any medication can be vast. They can vary depending on the age and gender of the person taking it (Sodium Valproate is particularly risky if there is any chance of pregnancy -it can seriously harm an unborn baby) Everyone will have a different experience of the same brand/medicine. The side effects of Sodium Valproate are frankly scary – hair loss, liver complications, tiredness, hunger, over activity, mood and behavioral change etc. – but remember these are ‘possible’ side effects not definite ones. For us, so far, things haven’t been as bleak as the inside leaflet suggests .

Week one we started with 1ml in the morning and the same again at night. We hardly saw a change in W. There were no tonic clonic seizures, but he did have a cluster of absences. The seizures didn’t stop straight away which we expected.

Week two (2ml/1ml) and week three (2ml/2ml) is where we started to see some side effects. He was starving. I don’t mean a little bit hungry. I mean starving! We had to restock the cupboards mid week with healthy snacks. He was out eating me and then some. I watched him basically swallow a banana whole! I had visions of him turning into a little, toddler sized, bouncy ball. He also went from tired to super energetic on a couple of occasions making him rather grumpy. I do however wonder if this was a side effect at all or the fact he’s 3. In all honesty he was behaving like a toddler and nothing more dramatic than that.

Week four is where we are now (3ml/2ml). This week the hunger has slowed down. He appears tired, but not as grumpy. A couple of times his speech hasn’t been as clear as normal, but this was at night, after a long day at nursery and returned to normal after a rest.

Remember your little one will be monitored. If any unwanted side effects crop up, let your Neurologist/Epilepsy Nurse know. For us it’s going well.

I’ll update you on week five soon,

Lots of love,

Clare xx

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