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)
This is a different type of blog post for me, but I wanted to tell you all about our first holiday since W’s diagnosis. You’ll know from my last blog that this is something that has made me anxious (taking W far away from home) however we had the best time. A lot of that was due to the amazing experiences we had at Smallicombe Farm.
Smallicombe provides excellent family-run farm accommodation in the Devon countryside. It is an ideal farm-based self-catering cottage holiday destination and quality B&B, providing delightful accommodation near the famous East Devon town of Honiton, close to the Jurassic coast.
These made our holiday. W absolutely loved getting up each morning, putting on his wellies and splash suit and waiting for Ian for 10am sharp – outside the farm house. Firstly, we got to hand feed chickens and search in the hen hut for fresh eggs. There were also ducks roosting on, snow white, eggs which we managed to have a quick peek at.
After the chickens, we went onto feeding the lambs. We got used to standing at the edge of the field shouting ‘sheep, sheep, sheep’ as the lambs skipped over to have their morning bottle. You could feel the texture of their coats and explain where wool came from, which W found rather amazing.
The best bit for us came last in the morning routine. The tiny piglets. W could help to mix up their feed and was taught how to herd them back into their pen. We also got to take a peek at the older pigs who were often just as comical.
On the last day we were lucky enough to watch a new born calf and it’s mother soon after birth. We witnessed the calf getting used to its legs and nuzzling to have its first feed.
Fairy door trail and onsite play area.
The fairy trail is magical. Not only do you get to explore this area of outstanding natural beauty, but you can also paddle in the stream and search for the beautiful fairy doors, spread across this 2 mile trail. We only managed to complete half of it as we had two under 4’s and are from Norfolk – we’re not used to hills.
You’d be hard pushed to find a more idyllic play area location. It is located at the end of the self catering cottages and includes a slide, trampoline, swing, natural wicker den, wooden pirate ship and guinea pigs that you can pet. There is also an area for smaller members of the family that includes a play house, little tikes car, scuttle bug and ride on tractor. There are two picnic benches, so you can relax with a cuppa and take in the scenery whilst the children play.
If you’re looking for a home from home – this is your perfect holiday. We stayed in the Cider Barrel cottage. We managed to fit four adults and two toddlers into the cottage comfortably. We had three bedrooms and two bathrooms (one downstairs and one up). The cottage is equipped with everything you need (obviously self-catering so you need towels, loo roll etc.). We even managed to use the pizza oven and log burner which made our stay even more magical and cosy.
There is a laundrette on site that you can use. You just need to change a ‘new’ pound for an old one at the farm house.
What can you do in the surrounding area?
There is so much to do in the surrounding area. We didn’t manage to visit even half of the things we wanted to. The first thing we wanted to do was to go fossil hunting. If you’re prepared for series hunting, take a small hammer and mask. We headed to Lyme Regis with a knowledgeable friend. We found a mixture of fossils near the cliffs which fasinated W. We even found a rock shaped as a tooth (which W still believes is a ‘real’ dinosaur tooth). After this we headed to the main stretch where we had the tastiest ice cream and explored the sophisicated shops and beautiful beach.
Crealy Theme Park was a fantastic day out. If you buy your tickets online, 24hrs before,you receive a discount. This meant we could collect them from the machines at the entrance – instead of waiting in a queue. You can revisit Crealy for the following 6 days after your initial purchase, which is incredible value for money and means it’s a must at the start of your holiday.
We also visited the Donkey Sanctuary. This is completely free and I was surprised at how well kept, interesting and glorious it was. There is lots for children to do. We were lucky enough to join the Easter Egg hunt and the kids enjoyed finding the eggs as we wondered around the site.
Close to Smallicombe you are within easy reach of a cluster of National Trust buildings/land/beaches. We went to Branscombe where we visited a forge and watched a real blacksmith at work. We then took the short walk to the beach (pushchair friendly) where we huddled into the rocks, as it was a rather windy day and ate our picnic. We took refuge in Sea Shanty Beach Cafe where we ate buttery flapjacks before venturing out again to join the National Trust Rangers at painting rocks and flying kites (a first for W and something he is still talking about). On our walk back we visited the working mill. We counted the rats (not real before there’s panic) and learnt about how it worked and how flour is made. The volunteer guides here are wonderful and full of interesting knowledge.
If you stay at Smallicombe you can also take advantage of the free passes to Pecorama. You need to leave a £20 security deposit at the farm and you’re set. Here you can take rides on miniature stream trains, visit beautiful gardens, a mixture of indoor and outdoor play areas and watch model trains whizzing around at the press of a button.
On this holiday we also managed to grab some adult time (I honestly can’t remember the last time me and my husband have managed it) We stayed with friends, so once W was asleep we ventured out for a meal and drinks. I’m still concerned about being too far from W, so we went to the closest pub. This was The White Hart Inn. We were not disappointed the food was incredible. I highly recommend a visit if you want a sophisticated, yet cosy, meal in a comfortable environment. It’s around 10 minutes from Smallicombe, so you can make the most of your time.
Myself and a friend also visited Aspara Hydro spa in Sidmouth – it was only £12 for a 90 minute session and we left feeling fully relaxed. We had the whole place to ourselves which was incredible. We recharged in the sauna and steam room and floated around in the pool with the jets on full blast.
The practical stuff
You are in a rural location so this needs to be taken into consideration when booking. However everything (including attractions and supermarkets) are within a 30 minute radius.
Honiton Minor Injuries Unit is run by the Royal Devon and Exeter NHS Foundation Trust.
The unit is nurse practionner led with support from doctors both in and out of hours and is open from 0800 until 2200, seven days a week
Failing this you also have Exeter hospital which is approximately a 29 minute car drive.
Telephone signal is difficult to find at the farm, so I recommend making sure you can call via Wi-Fi (which is free to all guests) this should be a simple change of settings if it’s not already enabled. Everyone is so friendly at the farm so you’d also be able to alert someone around you quickly and be able to use a landline if necessary.
Why did we love it so much?
I’m not one for very busy environments. I like my own space and to be able to explore natural environments. Smallicombe is small meaning that it’s not overcrowded. I love children, but on holiday hundreds of them screaming is not my thing. Here we had the best of both worlds. Loads of activities for children, on and off site, with the opportunity to escape into nature and to breathe and relax.
We will definitely be returning. There’s still so much to do! I’m excited for next year already.
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.
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.
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.
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 need to find a room and some time where you
can ensure peace and quiet.
DO NOT listen to this whilst driving. It really
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
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.
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.
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.
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.
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,