Browsing Tag

epilepsy

A change of mind

Posted on 9th September 2018

Last month I drafted a very long post about social media and connection, I was about to publish it and then I came across an article online which completely changed my outlook. It was about humanity and the blame culture, I realised complaining about humanity and the way we rely so heavily on social media was counter productive.

Rather than complain and point fingers at faults, how could I work to improve my own use of social media? It’s our responsibility to model the things we want to see and value in society, kindness, compassion and meaningful interaction. I think lately this ties in well with the current issues we are experiencing globally and the social awareness towards our environmental impact. For one currently in the eye of the media is the plastic in the sea, the strange weather we’ve been experiencing – both of these things have raised important questions about bringing home the important of our own impact on our future.

Starting again using a more positive framework, I’ve recently taken a break from my own personal social media accounts. It’s so easy to use up the idle time between tasks with a quick swipe of Facebook and scroll down the feed. I wanted to be present more mentally and I’d like to maintain more of my friendships outside of this viewfinder kind of window box world.

I have found being more “offline” has meant I am much more productive, much more aware, much less attached to my phone although I do still use it for Instagram which I love. I find little snapshots and images are far quicker to process and disconnect from. Right now I’m using my time to keep on top of all the tasks required to organise two children, one with many medical needs, two cats, a household. I’m finding far more time for myself, I now attend the gym which I have always thought about doing but never wanted to invest time into during the evenings. I’ve lost 20lbs in weight (comparing my pre pregnancy weight) and am the slimmest and the most physically fit that I have ever been in my life thus far. My original motivation was to get stronger as my wrists and arms were beginning to ache every day carrying Ariella, fortunately I have done this but she also has started to become stronger herself and needing me slightly less so now I am beginning to lose my tolerance for carrying her at all.

I’m not sure it was constructive for me to always be so visually aware of the things that children the same age as Ariella are doing. It’s much easier to just live in the now and work with her timeline than to see what she “would” of been doing had things been different. So far it’s going really well for me, my friends have mostly adapted to letting me know when they want to chat and use more direct means. It does mean that occasionally I miss announcements but much like sending a letter in the post compared to email, most of the time it still arrives.

We’ve been making some positive changes generally to our lifestyle, Sebastian is now using Eco nappies which is really just one tiny change but it makes me feel a little better. I can’t quite get my mind around going full cloth after comments about having a poo spatula from others but we are trying the Eco Naty disposables that are biodegradable. So far I really like them, they aren’t as absorbent as say Pampers which we use over night, so need changing about as often as cloth would but it’s a good positive start on removing something that really does not degrade – nappies and we use a lot of them!

What have we been up to?

If you’ve been keeping tabs on my instagram you will have seen that we all entered the 100,000 genome project last month – linked in case you would like to read more about the project. It’s the very best chance we have to find a diagnosis for Ariella, I am so pleased we are finally in the system and although it will be many years (around 1 – 2 at least) there was the possibility we could well have missed the deadline as it is now closed. Last May 2017 the discussion of the project being the next step was raised, but we didn’t hear anything back and after chasing we have just met the deadline, I can’t tell you how horrified I would have been if we had not been able to enter. It’s a very important project in which the whole genome is considered against the medical record data, a position in which the NHS is well suited to accommodate in England. Hopefully in future years the data gained will benefit in more ways that I can imagine, certainly if it can help stop future families living a lifetime of uncertainty about their child’s health that will in itself be more than enough.

We also saw Neurology at the same time when visiting St Georges Hospital, Ariella will be having another MRI at the end of the month this time under general anaesthetic. Probably for the best given the last MRI she woke up during it.

Sebastian is doing well, progressing well, sleeping well, smiling – he is a very happy chap with his two teeth. Every day is interesting and every day I’m reminded of how different my experience is this time around. He is almost crawling now, luckily everything is baby proofed still. We still have our stair gates in place as Ariella has just started to crawl downstairs. I am looking forward to getting more one to one time with Sebastian once Ariella starts preschool next week Ariella has now finished nursery but previously nursery days were often unwillingly Ariella admin days.

I have had a whole week with the two children, it has reminded me that actually once you get into a rhythm is isn’t all that bad. To keep busy and feel somewhat in control I planned the weeks events out in my new paper diary, this worked really well and I was able to prepare Ariella every day better. I don’t know why I didn’t do this before, it’s much easier and you can actually make good use of your time. So often I would just waste time or not be efficient with being “outside” and doing the outdoor tasks all together. When you have so many steps to come up and down with two children attached to you, you begin to appreciate reducing those trips up and down. I was fortunate that this past week Ariella’s seizures have calmed down slightly so she has been happier in herself.

This week we tried to make use of some of the memberships we have with the National Trust and RHS, we visited the local Arboretum which both children seemed to enjoy. We took many trips to various local parks to feed the ducks, use the swings and go for walks. We stopped by our local garden centre for ice cream and to use their garden piano which Ariella is so fond of and finally ending with a trip South to the beach, soft play and swimming. Ariella sleeps better when she’s had some good daily physical exertion now, if we stay indoors the whole day then bedtime can be a little prolonged.

September means new beginnings for all of us, preschool every day (eventually) will be quite an adjustment. It will feel I’m sure much like the school run, I hope we adjust to it okay. I hope that Ariella adjusts to her new “nursery” okay too, she will get lots of support so I’m sure that will make it easier for her. Right now she is often going through weeks of phases where she is quite confused, repeating phrases, screaming and generally seeming quite distressed. It feels like there is a lot going on neurologically, I hope that we get some answers soon so that she can carry on moving forward more and we all have a calmer environment. The change in state seems to go hand in hand with seizure activity, absences, tremors, a new kind of seizure too where her body muscles jerk oddly for a few seconds then stop.

Medication is going up but once the seizure activity passes we have a few weeks of calm (with the normal challenges) again.

I often feel like I can’t quite keep up with the updates of what is going on, each week is different. I try and write about what we are up to and then the goal posts will change!

Being Mum Weekly Update

Docket, Docket? What’s a Docket???

Posted on 1st September 2018

I don’t even know how to articulate the true mental voyage I went on yesterday. The day started well with a trip to the gym, making use of the creche facilities – but from start to end it’s felt like someone is puppeteering from above, trying desperately to steer me into a state of emergency.

Let me rewind back and explain how my last nursery toddler free day ended in being more about the toddler than the baby. Monday I received a text message to tell me Ariella’s prescriptions were in, perfect I thought – I’ll go get those Thursday on a nursery day. Taking Ariella into a shop like that in which you usually have to wait a small or potentially large amount of time is not an activity I’d choose to do ever – unless I have no choice.

Thursday comes and I visit the pharmacy, no epilepsy medicine just all the others. We have enough to last the day and Friday but not the weekend. The pharmacist assures me that it’s no problem, they aren’t sure why it wasn’t repeated but they would put it through as urgent and it should be ready Friday morning, at the latest Friday afternoon. It’s a little less time than I’d hope for, granted but I had no reason to think it wouldn’t be completely fine.

That evening Ariella does something really odd while sat in her highchair, an odd jerk and muscle twitch – we have no idea what happened but we do know it wasn’t right and are waiting for more information on this. There has been a lot of screaming, lots of hand tremors lately so we’ve had a heads up that something isn’t quite right, while concerned we move on – with plans to query this later.

Friday arrives, I go to the gym and just as I’m getting in the car to head home my phone rings. Nursery, well what is this going to be? I think pretty much every parent assumes the Calpol call, am I right? I never assume that anymore because I’m child is way past the Calpol call. Absent seizures, lots of absences reported throughout the day – I get a call later to say some odd things were occurring while she slept. Eight members of staff are surrounding her watching and waiting to see if she’s going to have a seizure. I know why because it’s terrifying alone, being alone and responsible for administering rescue medication is not to be taken lightly.

I get home and call the pharmacy to check the medication is in, my second task of the day. It hasn’t arrived yet but is probably going to be here by lunch time I’m told – call back later and if not the pharmacy will chase. Feeling a little unsure about waiting and relying on someone else to action the task I drive to the doctors surgery to speak with the receptionist, the very lovely lady informs me that the epilepsy medication has fallen off the list – somehow. Explained why the repeat didn’t go through, explained why the following urgent repeat didn’t go through too.

I called the doctors last week to check that it had processed through as the medication is often changing, increasing in dose and up until that point being distributed every two weeks. How did it go from all there and correctly change to every month, to not being there at all.

The receptionist takes all the details down and goes off to find a doctor to sign for a new prescription so it can be sent to my pharmacy. All being done urgently, I leave pretty reassured that I will get a phone call, the lady was nice and I could tell she understood the implications of going cold turkey from that medication. Lots of seizures. This lady followed through with her actions, thank you receptionist lady.

I do get the call, it’s ready at the pharmacy for me to go and request, for them to fill it and I would soon enough be heading my way down with my todo list ticked off. Reassured I head into the pharmacy, they look and say “It’s not in stock, but we can order it for tomorrow (Saturday)?”.

My brain just stops for a moment, the very same lady that I spoke to Thursday and had a conversation about the medication being required for Friday. The same lady who promised to chase the GP for me but never did knowing it needed to be filled the same day. The very same one is staring at me telling me there is no stock in…Today.

I explained again it needs to be administered at 6am Saturday morning and we run out this evening. They begin calling all the local pharmacies asking if anyone has any stock, three calls later – no stock. Finally one pharmacy does and the prescription is released, two boxes kept back and we can pick it up whenever. Relief again. Sorted, but not ticked off the list just yet.

Jamie heads out while I feed the children their dinner and reaches the new in stock pharmacy only to be told he needs a Docket. What the heck is a Docket? I get a call from him saying that the pharmacy won’t give him the prescription without a docket. I explain that it’s completely electronic, the original pharmacy was sent it electronically, we have no paper documentation after he tells me this docket is a piece of paper.

It’s now been several hours since my very last nursery day started and I was still without my child’s pills that she needed. I phone the new pharmacy and speak to them directly, after a really quick download from me in the most polite manner I could manage they ask for Ariella’s NHS number and it’s all rectified in seconds. Medicine in hand, job done, tick. Manic laughing and a glass of wine. What could possible go wrong next?

Oh that’s right, then there is also the seizure activity. Fingers crossed for a quiet weekend!

Being Mum Lifestyle Parenting

Epilepsy and you

Posted on 7th June 2018

I think most people when they think of Epilepsy visualise a physical jerking “fit” like in films however what I’ve come to realise the last few months is just how subtle epilepsy can be. It isn’t just the large tonic clonic seizures where they shake and convulse but also absences which can look merely like a day dream or quick jerks while sleeping.Uncontrolled epilepsy has been much more unsettling that I realised it would be, we used to take for granted that once putting Ariella to bed she would be safe and well mostly.

Twice now I’ve come to collect Ariella on a nursery day only to have a blank stare back at me. It’s baffling to see your own child who should know your face stare at you like you are a stranger, it makes you wonder what has happened and whether it’s temporary. The first time it happened was April the 26th, I walked into her nursery room and she didn’t notice me, this in itself rather unusual as previously she would want to go home as soon as she saw me. Her sort of keyworker (someone who covers her main key worker when she’s not in) said “let’s find mummy!” she replied, “Mummy!”. I’m told she looked in my direction but I’m not sure she did.

She walked over to a table without looking at me and started playing with toys in the room. How unusual I thought, I bent down and said “Ariella, it’s time to go home”. She looked straight at me and there was no sign that she knew my face, no smile, a quick glance then her usual hiding -not looking at you- tactics.

I immediately felt something was wrong, what had happened to her? The staff noticed how strange the interaction was too, so the nursery staff encouraged Ariella by saying “who is it Ariella?”. She didn’t know, the look on her face said that very clearly. She wandered off and went to go play more. Eventually I persuaded her to leave with me, she kept looking back towards the door of her room as if she wasn’t sure about where she was going. Starting to worry quite a bit about her memory now I asked her “Where is our car?”, she didn’t know – again very odd. It was only over the course of several hours that evening that she started to become more herself again. She immediately knew Daddy though, it was the strangest thing and worried me more than anything to this date.

The second time it occurred was the 31st of May, by this point we had seen Ariella’s paediatrician and she had been diagnosed with Epilepsy, it was starting to make sense. I’d sent her a video of Ariella’s hands tremoring but unbeknown to me at the time I had actually also caught an absent seizure on camera. I did notice before the appointment when I watched it back myself, they are so easy to miss in person. I wonder now how long the seizures have been going on for, a lot of the activity for Ariella is always at night. In fact most of her ferible fever induced seizures are often when she is unwell and always between 2 – 4am. We’ve always had an eye on her but I remember when she was under a year old and I thought she was having infantile spasms which are where both limbs shoot up a little like a startle reflex but more like a jack-knife. I was sure I saw this happening, when she was assessed in hospital her EEG was normal and she didn’t do it in hospital. Was that the start?

I know the very first sign that something wasn’t quite right was around 18 months old, her hands would often shake a little. Just a tiny amount, I raised it with her physiotherapist but there was no way of knowing if it was the start of a tremor or just her weaker than normal core strength. After the months went on a pattern began to emerge, the shaking was always worse when she was unwell. Her seizures are always worse when she is unwell too, I think that can be a trigger for some epileptic people? Her ferible convulsions may well never have been ferible and instead were epileptic triggered by fever which would explain the extended duration.

So with each episode of illness the shaking hands would return, it was only the end of last year that the hands moved to the arms and that we started to notice the shaking more often. When she was diagnosed with coeliac disease the shaking all but cleared again. We hoped that was the end of it really that it was due to how poorly she was but it returned and now it makes more sense. Something that is relatively new is the absences, either I didn’t notice them before because I wasn’t aware of what to look for or they have increased. Before medication the absences were occurring daily with little pattern, worse during periods of stress and anxiety for her. It’s still very early days in terms of medication and I think it can be quite a trial to find the right match and dosage, but for now it seems to be helping her a lot. We should be seeing an epilepsy nurse soon which will give us some emergency medication we can administer should she have a prolonged seizure again, I had no idea that brain damage can occur and we’ve always been assured that she was before now having just ferible convulsions but long versions of this. For Ariella a long seizure can be mean she is unable to walk the next day and doesn’t regain her mobility in full for a week, or her face droops on one side, or goodness knows what else can occur that I don’t know about yet. I will sleep much better once we have this medicine to hand.

The last week Ariella has been much less anxious, the medication she is using is used to treat bipolar disorder and anxiety too. The downside to this is she is very hyper and wired, she doesn’t sit and concentrate for long periods at present but until the dosage is at its final level it’s hard to know what the end result will be. She has had her second EEG, which is when they put little electrodes on your head and check for activity – it will be a little while before we know the results of this and in the near future she will need another MRI. But for now she’s happy, she’s hyper, full of energy and far less anxious than before. For the very first time in a very long time we listened to the radio in the car on the way to nursery this morning, much as I love our Ariella approved playlist it’s rather a short selection and I’m pleased to be branching out away from Paramore for a little while.

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