Seizures suck

I was almost going to call this blog post ‘Missing in action’ as that’s how I feel I’ve been lately. But this title sums up our mood quite well!

We had our brief spell in hospital in early January for Samuel’s seizures and since then it’s true to say that things have been consistently rocky seizure-wise with perhaps one exceptionally good week thrown in.

It’s been tough. In fact the rough patch started just before Christmas but then Samuel had a heavy cold so that made everything worse and we hoped that once his cold cleared things would improve. No such luck.

We found ourselves giving Samuel’s emergency medicine, Midazolam, if not every day, then every other day. So it was decided to increase Clobazam – which so happens to be a sister drug to Midaz. As Samuel is already on such a high dose we only really had room to put it up an extra 1ml a day.

That didn’t really make enough (or any) impact. So we then increased Samuel’s morning dose of Vigabatrin. Whether it was the initial shock to the system of this increase or just coincidence but following that we found ourselves having an amazing week seizure wise. But this turned into just a good blip and we found ourselves back in a pickle again.

So we have this week increased the evening dose of Vigabatrin in the hope that it will have enough of an impact to get Samuel out of this funk. He’s also had another bad cough & cold this last couple of weeks which has just made matters worse.

We’ve also had to reach for Samuel’s sleepy drug, Chloral Hydrate, a few times recently to help calm & relax him. Chloral is normally given at bedtime, but we’ve agreed with his doctor that if he needs it during the day, we can give him an extra dose.

At least we have things in our armoury to keep Samuel comfortable.

And so we wait. Patiently.

And the ketogenic diet? *shrugs* The jury is now out on that one. Yes, he is still on it but not seeing any evidence it is doing much for Samuel. We have a review meeting with his doctor in March so will discuss it then. We may decide to give it another few months & then consider coming off. We’ve recently dropped some of the calories (and will be able to drop some more again soon) which may help the diet be more effective. I want to give it the best chance we can as I know if the diet works it can be a complete game-changer.

So that’s us. Over and out.

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Zzzz

One question we are asked a lot is about Samuel’s bedtime. ‘Does Samuel sleep well at bedtime?’ This is often asked by other parents, especially when they see Samuel in a very long, deep sleep and I think they worry that he wont sleep for us at bedtime.

But he sleeps very well at bedtime and that is because we cheat. At 10pm each evening Samuel has a medicine called Chloral Hydrate which we call his sleepy drug. It is also thought that Chloral Hydrate has some anticonvulsant properties which of course is an extra bonus.

He’s been on this medicine since he was around two months old as it was felt that he didn’t have a proper sense of night and day. He is only on a small dose of the medicine (about half of what he could have for his weight) but it is very effective. He still does wake in the night if his seizures are very bad, he has a wet or dirty nappy that has disturbed him or he is unwell, but generally our nights are very good.

With the Ketogenic Diet being effective now, I feel a bit more confident about looking at weaning Samuel (and us!) off Chloral Hydrate as he may be better now at night and perhaps he doesn’t actually need it anymore. But I will still keep it in our armoury, just in case!

If you don’t understand about Samuel’s condition this may surprise you but he stays up with us until we go to bed. He is not really aware of the world around him and isn’t disturbed by noise or light so he snoozes with us in the lounge until we decide to go to bed. That way his Dad (who misses him dreadfully when he is at work) gets extra cuddle time in the evening and I suppose is a habit we’ve got into.

Samuel moved in to his own bedroom on his first birthday. Before then he slept in his cot next to our bed on my side of the room and I’d often shuffle down the bed so I could sleep while holding his hand or just lay there staring at him. We both found it extremely difficult to come to the decision to move him out into his own room, but my father bought us a video monitor and that made things much easier (I do have the volume up very high and still lay in bed staring at him during the night!). We’ve so far (will just quickly touch everything in sight that may be wooden) not had any problems with Samuel’s breathing, so feel that he is safe in his own room.

Samuel can snooze anywhere!

Another little achievement we made is taking Samuel off his saturation monitor. Saturation monitors are used to monitor heart rate and oxygen in the blood. This has always been a frustrating piece of equipment as they aren’t designed for children who twitch and jerk a lot and it would often have a poor trace and give an inaccurate reading. There were times that I would notice that it didn’t seem to react when Sam had a seizure but would alarm when he cried afterwards! I told Samuel’s pediatrician that I was going to stop using the monitor and he said that he was very happy for us to do so as we have so far not had any problems with his saturation levels or his breathing. We are keeping the monitor though as we may wish to use it when he is poorly.

I wonder if you are reading this thinking that this all sounds so very alien to you. Quite bizarre in fact. But to us it is normal and works very well. Samuel is like a very little baby, so isn’t distracted by things that other 18 month old children would be. But anyway, what matters is it works and that is all that matters.

This post was inspired by Little Mamma Said and her post Bedtime. Please do pop over and have a read.

This post has been included in the the #definenormal blogging challenge. Pop over to Just Bring The Chocolate to find out more and read other #definenormal posts.

Medicine cabinet

You may not be surprised to know that we have a rather bulging medicine cabinet (well actually it’s a red box rather than a cabinet) with all the medicines needed to manage Samuel’s epilepsy, reflux and general bits and bobs:

Day in the life

Well there is no such thing really as a typical day for us. Sam makes up his own rules as he goes along – no two days are ever the same. But we do have to have a rough routine for his medicines so I guess that does keep us organised. This is how we roll:

  • 8am – Turn off the pump feed & flush through with sterilised water.
  • 9am – Give Samuel his medicines with flushes of water in between – Topiramate, Vigabatrin and Clobazam.
  • 11.15am – Give Samuel his reflux medicine (this is a new thing and I’ll talk about this more another time).
  • Noon – Sam starts his pump feed of good old Pepti Junior. After the feed we flush him through with water.
  • 3pm – Sam starts his pump feed of good old Pepti Junior with a sachet of baby Gaviscon mixed in. After the feed we flush him through with water.
  • 6pm – Sam starts his pump feed of good old Pepti Junior with a sachet of baby Gaviscon mixed in. After the feed we flush him through with water.
  • 9pm – Give Samuel his medicines with flushes of water in between – Topiramate, Vigabatrin and Clobazam.
  • 10pm – Give Samuel his bedtime medicine Chloral Hydrate which helps him sleep and flush with water.
  • 10.10pm – Start his overnight pump feed (500ml to run over 10 hours).

This is of course a bog standard day for us. This doesn’t include if Sam has had a bad seizure

Infinity Pump bag

and we’ve had to give him some Midazolam. We medicate if his seizure has been going on for 10 minutes or if he’s clustered and had four/five in 30 minutes. Midazolam is squirted into the cheek and then you rub the cheek to make sure it is absorbed.

Also this doesn’t include if we’ve given him Calpol etc. It still feels strange when we give him a ‘normal’ medicine as we are so used to it being prescription only and doses tightly controlled.

In addition to this I have to do regular care of his gastrostomy button. Turn it every day and give the skin area around the button a good wipe. I also have to replace the water in the button once a week.

Sam’s pump is very portable, we have a nifty rucksack to take it in so he can have a feed anywhere – the boy has eaten in restaurants, cafes, shopping centres, parks and the car.

So there you go. That’s how we roll in our world.¬†Updated to be included as part of the BlogHop #definenormal. Pop over to Just Bring the Chocolate to find out more.