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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A Samuel update

(Warning: This post contains poo references)

It’s been a while since I updated you on how Samuel is doing on the Ketogenic diet, so I thought I’d bring you up to speed.

Right, where to start. Things have been going quite well. Samuel had been having only a few seizures a day, mostly (if not all) in the evening and, I can’t believe I’m saying this, but we’ve had a few (just a few but even one is amazing) seizure-free days. As I write this, Samuel has so far gone 59 days since his last dose of his emergency medicine Midazolam. Pre-Ketogenic diet he averaged 14 days between doses, so we think this is pretty damn good.

Over the last few weeks we had noticed that his ketones had stuck on around 0.8. This is much lower than we’d like but the diet was still having a positive effect so we weren’t worried. The thing to make note of is what Samuel is actually doing rather than what the numbers say.

But, over the last week we’ve noticed more seizures have crept in during the day and although they may be short, they are very sharp and seem to unsettle him quite a bit. We’ve also noticed that he might have lost some weight. Samuel has always been like me, long and lean, but lately we’ve felt that he seemed a bit less podgy in certain areas.

Anyway, we got him weighed and sure enough he’s dropped some weight, which was particularly frustrating as we’ve been trying to fatten him up.

But don’t worry reader, we think we are on to it.

Today we handed in two poo samples to the hospital. One is to check whether Samuel has an infection which could affect weight gain and possibly ketone levels. The second sample is to check for fat globules in his poo – it could be that Samuel is effectively pooing out the fats so therefore he isn’t benefiting from them (this is what the dietician thinks the problem is, especially after seeing the consistency of his poo). If this proves to be the case, they can give Samuel a supplement which will him help him properly absorb the fats.

While we wait for the results, we are changing Samuel’s feed from powder to liquid. It is essentially the same feed, but there is thought that sometimes children who use a powder or liquid feed, tolerate one better than the other, so we are giving it a try. The liquid form of the feeds contains more fibre, so that might add a bit of extra excitement to nappy time!

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Samuel’s new liquid feed

Drug wean 1 update – We are in the processing of weaning Samuel off one of his drugs, Topiramate. The wean is going well and sometime mid-September, Samuel should be off the medicine completely. He will still be on two anti-seizure medicines but the fantastic thing is that for the first time we wont be replacing this drug with another seizure medicine.

UPDATE: Since posting this, Samuel’s seizures have got worse and we had to give him Midazolam on Friday afternoon, ending his fantastic 60 day run. His poo nappies have got worse too, so we are hoping that once the lab results come back we can then start him on the supplement to help him absorb his fats better.

Celebrate: 50 days

Today we are celebrating.

We had to give Samuel his emergency medicine Midazolam today. You may think that wouldn’t be something to celebrate, but what we are celebrating is that has been 50 days since we last had to give it to him. 50 days. Samuel’s ‘normal’ average was previously 14 days.

50 days.

We are so very proud of him. That boy is one hell of a fighter. We are so proud to be his Mum and Dad. It is our greatest privilege.

Well done Samuel. x

This post is part of the Celebrate Blogging Challenge. This world of special needs and disabilities has many rocky roads, we will find ourselves on many rollercoasters along the way. But, there are a lot of positives. Through our adventures so far, we have met a lot of amazing, supportive people. It has made us stronger. We have learned to look at the world through new, wider eyes and find ourselves celebrating what to others may seem such a small achievement but to us, it’s the world. It’s a tough world, but there is so much to celebrate. Our children. So please join me each week and post about what there is to celebrate in your world during the past week. I’m looking forward to reading your posts and celebrating with you.

Click here and share your celebration post and then grab the Celebrate Blogging Challenge badge for your blog. Don’t forget to tweet about it too using #celebratebloghop

Tricky Customer Celebrate Blog Hop

My previous ‘Celebrate’ blog hop posts:

Seizure monster has gone missing (and left his lazy assistant in charge!)

I have absolutely no idea where I should start with what I want to say, what I want to tell you. In my previous blog post A day to remember, I told you that for one day last Friday, Samuel had no seizures. None. Zilch.

I couldn’t understand it because his ketones were so low (to anyone new reading this, Samuel is on the Ketogenic Diet – pop over to my ketogenic blog posts page for a quick round-up of what’s it all about), so it couldn’t be the new diet.

But it wasn’t all plain sailing. He was miserable. Grumpy like I’ve never seen him grumpy before. But by Friday evening we realised why. The area around his gastrostomy site was very red, angry and sore looking. Plus the tip of one of his little fingers was very red too. We took him into hospital Saturday morning (and spent 5.5 hours there waiting to be seen and then waiting for antibiotics) and were told that he had a skin infection.

That would explain why he was so very grumpy. And we discovered that infections can reduce ketone levels which is why his ketones were so very low. (For those who still haven’t got their heads around ketones or haven’t been over to my Ketogenic pages to find out more – basically we need Samuel’s ketones to be high and at a consistent stable level for him to be in ketosis and therefore for the diet to work).

But dear reader, and perhaps this is the point of the post, so well done for sticking with me, you will be rewarded, Samuel didn’t have a seizure on Saturday either. And this time his Dad was there, so I have a witness. He didn’t have one seizure on Saturday. And Sunday? Sunday he did have a one minute seizure but that was all. That was all. Samuel has severe ‘off the scale epilepsy’ (to quote his padetrician) and has seizures every single day. Well he did.

And today? I’m not going to jinx it, but so far he’s had two 30 second seizures and that is all.

Original image ‘borrowed’ from http://www.littlemammasaid.blogspot.co.uk

So is it the new diet? Is it actually working? I still can’t answer that. And it’s not me being coy or over-cautious, I just really don’t know. His ketones are low, very low, so the diet shouldn’t really be working. But it makes me wonder if Samuel is again making up his own rules, even for this new diet.

I might blog again and tell you that we’ve had a shocking evening tonight, had to give him his emergency medicine (Midazolam) and the rest of the week is dire. It is normal for us to not have two days the same. What is normal is to have two dramatically different days. So I’m confused. Feeling rather shell-shocked actually.

But to sit here with my precious boy and not have to watch his little body twist and stiffen, his arms and legs jerking manically, him screaming and crying, is an overwhelming, wonderful feeling. I wish I could bottle it.#

I’m not sure if the Seizure Monster has just gone away on a short holiday and left his lazy assistant in his place. The Seizure Monster may be missing. But we aren’t missing him.

UPDATE (15/05/12) – Samuel didn’t have any more seizures after I posted yesterday, so that was just two small ones he had yesterday. Today? Well, it’s 8pm and Samuel has only had three very brief seizures today. You may be thinking, ‘well three seizures, that doesn’t sound good’. But three very short seizures in one day, for Samuel, is brilliant. Whatever happens tonight or tomorrow, I am such a very proud mum.

More information: If you want to find out more about the Ketogenic diet, please have a look at Samuel’s Ketogenic journey and you can also read a round-up of all my blog posts about Samuel’s Ketogenic adventures. Matthewsfriends.org is a fantastic resource full of really useful information and case studies about the Ketogenic Diet.

Keep calm and ask Mum

As you know we are in hospital for Samuel to start the Ketogenic Diet. I wrote in a previous blog post, Tricky Customer, that I was mainly nervous about the doctors and nurses and their approach to Samuel’s epilepsy.

I’m all too aware that Samuel has unusual epilepsy and that you don’t medicate all his seizure activity (because that would mean you’d be sedating him every single day when he does usually come out of the seizure by himself). But nurses and doctors are trained to resolve seizure activity as soon as possible.

To add to it all, Samuel didn’t have a great start to the week. We came into hospital on Monday and that evening we gave him Midazolam. But we, as in his Dad and I, decided to give it to him. He also had another dose on Wednesday which was given under my instruction.

And that’s been the theme for this week. Everyone has been told to follow our lead and it is up to us to decide when to give the emergency medication. In fact we’ve been pretty much left to it. I’m doing everything for Samuel as I normally do, doing all his medicines and feed plus managing his seizures. They’ve not even taken his medicines from us, they are here in the room with us for me to use when we need to.

The nurses are lovely as usual and very interested in Samuel and I’ve told them all about him. They notice his twitches and jerks and I explain that they are normal for Samuel and they tell him that he’s a brave boy and stroke his hair.

Being honest I think some of the nurses are relieved they don’t have to make any judgement calls and it can all be left up to Mum. I don’t mind. I don’t mind at all. It’s my job after all and although I might not be trained or be able to do lots of complicated nursing and medical stuff, I’m the best nurse Samuel will ever have.

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Getting it right

Samuel and I spent the day today with our friends at Julia’s House. I’ve come home feeling knackered, which is probably because I did a lot of nattering (I am a chatterbox to be honest) and having to think even more about Samuel’s epilepsy and trying to explain to the carers and nurses about how we medicate Sam’s seizures.

I’ve talked before in my post Early days about the difficulties in explaining just when is the appropriate time to medicate Samuel with Midazolam (his emergency medicine) and when you just give him a good cuddle and ride it out. It isn’t a perfect science and I’m sure I get it wrong sometimes but it can be so difficult, especially as he really does live up to being a tricky customer!

Samuel started off today really snoozy but then as the day went on he became more unsettled. I was hoping that it might be his teeth giving him agro so I gave him some paracetamol as his cheeks were really pink but that didn’t make much of a difference. He progressed to an afternoon of on and off clustering. If I hadn’t have been there he would have had Midazolam, we all knew that.

But the problem is the grey area within his protocol.  There are some seizures you count, you look at your watch and mentally log, others you just give him a good old cuddle. But should we be ignoring those seizures? Are we pushing the boundaries too much? I think everyone understands that by nature Samuel is a twitchy boy and those twitches (which are in actual fact seizure activity) are inevitable due to the set-up of his brain, but it’s the other things he does, the seizures. How can I expect people to ignore some but count others? We just don’t want him medicated every day which realistically could happen. Samuel has seizures EVERY day.

I think the nurses, well one in particular, could see the difficulty I have and advised me to talk to Sam’s doctors about it to clarify his protocol. The ridiculous thing is I do agree with the written protocol, in fact I co-wrote it with the doctor over the phone BUT it’s about how it works in practice. She said that she felt that it is such a huge responsibility on my shoulders to make sure that they get it right when I leave him in their care.

You see I love Julia’s House, I really do. The whole place, the people, I just love it there. I cannot explain how amazing the nurses and carers are, how kind, lovely and understanding they are. They make me feel normal. Nothing I tell them phases them. I doubt there is much I can tell them that would surprise them or they hadn’t heard before. They must be the best childminders in the world!!! And I can’t begin to tell you just how lovely they are with Samuel. Right from day one, the way they talk to him, stroke him, cuddle him. As his mother who loves him with every grain of my being, watching these people hold him so gently, look after him with so much care. It just makes my heart swell.

If it wasn’t for this situation with his epilepsy and emergency medication I would have left him there on his own after the first day. I trust them, I really do.

We did end up giving him Midazolam in the end. He did need it to break the cycle he’d got himself into. But although it’s always disappointing when he has to have it, I really did feel we achieved something today. They saw what he does. They witnessed what his epilepsy can be like and they saw how much I want him to be awake and alert as much as possible. They saw the difficult situation I’m in, the hard decisions I often have to make about medicating him and I really felt that they were there behind me, supporting me.

Why is no-one cuddling me?

The nurse was keen to make me see that it isn’t a test of me. It’s not about right or wrong or whether we are looking after Samuel correctly. It’s about us all being in the same team and understanding how we can care for Samuel together.

We will get it sorted. We must. I’ve already put forward some dates to have community sits which is where carers come over to the house to look after Samuel. I will be home, just for the time being, but do have every confidence in them, Samuel and me, that we will get there.

There is a sign up in Julia’s House that says ‘Julia’s House is a happy place’ but it is more than that. Julia’s House is a happy, loving, caring, supportive, cuddly, fun, positive, sunny, friendly place. The sun ALWAYS shines at Julia’s House.

Take the rough with the smooth

Well readers, we seem to be having quite a good period at the moment. Very good in fact.

Please don’t get me wrong, Samuel is still having seizures every day. But at the moment he doesn’t seem to be having as many in a day as previously and instead of being quite low, they are quite short and sharp.

We are often asked how many seizures he has in a day and as we don’t keep a log it is an impossible question to answer exactly. But our staple answer is between five and 15. It just depends on what kind of day we are having and often no two days are the same. For no reason, he could have two dramatically different days. It is just the way things are.

When things are going well we average about two weeks in between giving him Buccal Midazolam. Midazolam is his emergency medicine. The dose we give him at the moment is 0.5ml and as it is a buccal medicine you give it orally (the only thing he has orally). You put the syringe into the mouth push it against the inside of the cheek and then squirt. His system absorbs it very quickly, although it can take between five and 10 minutes for him to unravel from the intensity of the seizure and go to sleep.

Samuel’s current emergency plan is that we give him one dose of Midazolam if he’s been having a seizure for over 10 minutes or he has had a cluster (of say about four or five short ones) in half an hour. We can give him two doses in 24 hours but if he needs more than two doses within 24 hours or when he wakes up from the second dose and we are worried we have to take him into hospital. So far we’ve not needed to call an ambulance and only taken him in twice. We have open access at our hospital which means we don’t have to go via A&E, and we can go straight to the children’s assessment ward.

I should mention at this point that an important note on Sam’s emergency plan is cuddles. Yes, it’s true. When he’s having a seizure, giving him a cuddle not only provides him with comfort, we find it can sometimes help to take the edge off the seizure (what the NICU doctors would call containment) and it can also help you feel the seizure. You can feel its intensity and when it starts to slow down.

We often find that Samuel’s worst time is during the evening. Between 7pm and 9pm is what we call the ‘danger zone’ as this is when the level of Sam’s drugs in him has dropped and we are waiting for the evening dose to top him up. He is often extremely unsettled and more likely to have a seizure. BUT over the last few days (possibly the week) he’s said ‘up yours’ to the danger zone and slept through it!

He has been far more settled and we’ve had a lot more settled awake periods which is lovely. Although it is so nice to see him like this, we still have to take one day at a time because although he’s been so good like this recently, it doesn’t mean it will continue. So we enjoy every minute that he’s calm, settled and relaxed and make sure that we remember it as often you can forget what it is like when you hit a really rough patch.

Epilepsy, plus ARX seem to make up their own rules and just when you think ‘yeah, everything is going really, really well’ it pokes you in the eye!