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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Meeting with Dr H

This coming week we have an appointment with Samuel’s pediatrician and we have a lot to discuss regarding the Ketogenic Diet.

We are still feeling that it is working and certainly making a difference to Samuel’s epilepsy but we have noticed a slight increase in seizure activity in the evening (but still amazing compared to before) and he is far more sleepy during the day. Also his ketones are still really low. Really low. We seem to be stuck between 1.4 and 1.6 and despite changing the recipe (Samuel is fed a special formula through his gastrostomy, so I’m referring to changing the concentration of the feed) we seem to be stuck.

When I last spoke to Samuel’s doctor and mentioned about the excessive sleepiness (with the diet working, it is now like he is a bit over medicated), he suggested that when we come into clinic for our appointment we discuss reducing Clobazam. Now we love Clobazam. It bloody works. It is a very strong drug (it is sister to Midazolam, Sam’s emergency drug) and can cause extra drowsiness. We are nervous about reducing this medicine but do see that it could really help us have more awake time with Samuel.

But the drug I do want to discuss with Dr H is Topiramate. Now we do have a fondness for Topiramate as it basically got Samuel home from NICU. But he has been on it a long time and he is on quite a high dose (14mls twice a day) and I think Clobazam and his other drug Vigabatrin have superceded it. Last weekend, while frustrated with Samuel’s ketones and no one around at the hospital to speak to, we phoned Matthew’s Friends. We were lucky enough to speak to Emma, Matthew’s Mum who advised that Topiramate can cause acidosis in the stomach which can reduce ketone levels. Well isn’t that something? So that will be high on my list to discuss with Dr H.

Although his brain and body does seem to be responding to the diet, I’m not sure what it is doing with his ketones but I really want to see them increase and increase soon as it’s the one nagging thing about the diet. We need Samuel’s ketones to remain at a stable level between 2 and 5. Even when they have been high (they have been above 2 a few times), it hasn’t been consistent and they’ve come back down again.

Do I dare wonder what his epilepsy would be like when his ketones are at a stable high level? That is just too exciting to think about. But in the meantime, maybe this is just Samuel changing the rules again. I just wish he’d let us in on the new rules!

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.