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.

Advertisements

Uncle Midaz

Midazolam has been in our lives since the early days. It has become a very important part of our armoury in the battle against Samuel’s seizures. It is his emergency drug.

The protocol of when to give Midazolam to Samuel is if he’s had a seizure lasting more than 10 minutes or if he’s had a cluster of four or five short ones in half an hour. It is only given for full on focal seizures and not his general twitching.

In the very early days, Samuel had Midazolam a lot. On average he’d have about five doses A DAY! There wasn’t really a clear protocol at that time so he was given it almost as soon as he’d seizure. Problem was, Samuel would seizure a lot and medical staff are trained to zap seizure activity immediately! But the neurologist stepped in and changed the rules. She made us and his hospital team wait. It was hard. I’d be there holding my boy who’d been having a seizure for 8 long minutes and I wasn’t giving him anything. But it worked. It showed us all that more often that not, Samuel will self resolve after about 10 minutes and then be fine.

When the going is good and things are quite balanced, Samuel on average has Midazolam about once every two weeks. Although when the Ketogenic Diet was at it’s best he went without it for about 60 days!

Midazolam is the only thing Samuel has orally. It is squirted into his cheek and absorbed that way. After Samuel has been given it, he can take a bit of time to wind down. Sometimes he will even have another seizure after he’s had it. But then he eventually calms down and relaxes and usually goes off to sleep for about three hours.

Giving Midazolam is at last much easier after the introduction of pre-filled syringes. Before, Midazolam came in a little brown bottle and you would have to push the syringe through the stopper to draw up the Midazolam. This wasn’t always as simple as it sounds. There was always a big label over the bottle making it awkward to see what you were doing, if you’d already used the bottle a couple of times and the liquid was getting low, you’d have to angle the bottle a certain way to ensure you got enough in your syringe. Then you have the problem of air bubbles. When drawing up a medicine, you have to get rid of air bubbles as where air bubbles are, medicine isn’t. Don’t forget this is an emergency medicine. You are trying to do all this as quickly as possible too!

20121216-102738.jpgSo at last we have pre-filled syringes. All you do is remove the seal of the tube, take out the syringe, break off the tab and it’s all ready to give.

We have a bit of a love & hate relationship with Midazolam. We love the effect it has. How it works. How it stops what is happening. But we hate it too. We hate having to give it. We hate what it symbolises…that Samuel’s had a bad patch.

But the relief you feel when you’ve been watching Samuel seizure for over 10 minutes and then suddenly he stops, relaxes and yawns and goes off to sleep. All is calm. Samuel is safe and content once more. That is why Uncle Midaz is a very important part of Team Sam.

Keto update – stick or twist?

Samuel started the Ketogenic Diet in April. If you have been following this blog for a while you will know that we started off really well, in fact Samuel went without Midazolam for a record time and everyone who knew him said how different he was.

Then the seizures started to creep back in, he was also losing weight as it seemed that he wasn’t absorbing fats. So he was moved onto the MCT version of the diet to help him gain weight. Because of the importance of getting back on top of his weight, we increased the calories, so really Samuel hasn’t been on the ‘proper’ Ketogenic Diet for a while, because of the high calories.

But today his weight finally hit 10kg and the dietician is now happy to start dropping very slowly, some of his calories and carbohydrate. We are really hoping that reducing this side of his diet and therefore returning to a more pure and traditional ketogenic diet will positively affect his seizures.

The real test will be once we are fully back on the proper diet for a while. If we feel that he is benefiting from the diet and his seizures are better, then we will stick with it. But if not, then the twist will be that we will come off. Perhaps we might revisit the diet again in the future, but in the meantime it would be a case of back to just relying on drugs again.

You may think well there are must be lots of anti-epileptic medicines around for Samuel to try, but it’s not that simple. In his two years of life he has already made good headway working through the drug book and some medicines he did try, barely touched the sides. Although there is sometimes scope to increase the dose, the risk is that you end up reaching the ceiling for that medicine and you can’t increase it anymore. That’s why it is so crucial that this diet works for our Samuel. If it works, if we can go back to how things were when he originally started the diet that would be wonderful. We had almost seizure free days – to have that again would be…well beyond words.

So readers, I ask for your positive thoughts and prayers.

Previous keto blog posts – read more about Samuel’s journey on the Ketogenic Diet

Little H is a good friend of Samuel’s and is also on the Ketogenic Diet. Pop over to Little Mamma said and read his positive story.

If you want to find out more about the diet, Matthew’s Friends has lots of really useful information and support.

Hopes and wishes for 2012 – part 2

I wrote a post at the start of the year about my hopes and wishes for 2012.  A few things we’ve achieved, some things we are still working on:

In no particular order:

  • Samuel’s seizures improve! I think we’ve come a long way and I’m proud of how strong our boy is. For one good spell he went 60 days without Midazolam. Amazing.
  • Sam doesn’t catch many (or any if that is possible) bugs and has a very healthy year. I think we’ve been quite lucky this year, although it did break my heart in the Autumn when Samuel had a small chest infection, but as everyone kept telling me, bearing in mind his disabilities, for him to have his first one at almost two years old is extremely good!
  • Sam makes some progress development wise. My real dream would be that this year Sam starts to make eye contact and smiles. The only time we get to see him smile is when he has a seizure (and it would be a cracking smile if it wasn’t for the circumstances), so to have him look into our eyes and smile would be amazing. No development progress, but he’s achieved so much more hasn’t he?
  • We become part of the hospice community and I meet other parents in our world. I think having the hospice involved in our lives will be fantastic, not only for Samuel but for us too. I really can’t wait. Well, if you’ve been reading this blog for a while now you will know that I have fallen head over heels in love with Julia’s House. I’ve made some fantastic mum friends and I really feel that the hospice have become part of the family.
  • Samuel starts the ketogenic diet and we can see a positive difference. We started the ketogenic diet in April and it worked! We had a blissful time initially but then he started to lose weight and we had a bit of a battle on our hands. BUT we are still on it and although it might not be having the same overwhelming experience as before, I do think it is making a small positive difference.
  • Samuel finally gets some teeth! We’ve had teething but no actual teeth have come through yet. Samuel now has five teeth!
  • I get to see much more of my sister and nieces. They live over two hours away and I just don’t seem to see them very much, but I do really miss them. I love and adore them but I still don’t see enough of them. Not for the want of trying though.
  • Sam’s dad has a good year at work and gets the recognition he deserves. All I’ll say is that he works so hard and is so committed to his job, it’s just a shame that some people don’t seem to be able to acknowledge that.
  • Sam gets some strength in his neck and is able to support his own head. Unfortunately no progress here but we perservere with regular physio, so who knows.
  • I master Skype so I can chat with my faraway friends.
    Almost!
  • My blog grows and helps people who find themselves in our world. I’ve been overwhelmed by all the comments I get and the fact that people actually come and read my ramblings! I’ve made contact with a few wonderful families through my blog too which has been great. I love sharing our world and telling the world about our amazing little man.
  • Sam starts hydrotherapy and seems to like it/benefit from it. We did a course of hydrotherapy which I think I enjoyed more than Samuel. He slept through every session and even snored through the last one!
  • We continue to strengthen our friendship with our NICU parent-friends. What can I say? This has been an amazing year as far as our NICU friends go. It’s such a privilege to have them as friends as they are an amazing group of people and their children are little miracles. I adore them! They have all become part of our family!
  • We transform the garden to make it a nice sensory area for Samuel and for it to be more Sam-friendly. Sam’s Dad and Grannie did a lot of work in the garden over the summer and although we have more to do in the Spring, I think we are getting there.
  • I get to meet some of my lovely blogging and twitter friends. I’ve met a few but there are still more I desperately want to meet!
  • We finally start our veg patch and it is a success.
    Failed.
  • My sewing skills improve. I’m notthe best sewer or crafter, but I’ve been really enjoying making things and selling the odd thing. I wish I’d discovered this ages ago.
  • I learn to knit. Started. Stopped. Started again…will try and perservere with it.
  • I do much more cooking and baking. Baking yes, cooking…no comment!
  • Sam’s Grandparents finally get the confidence to look after Samuel on their own, or at the very least start helping by doing things like his nappies etc! No progress unfortunately.
  • We celebrate Sam’s second birthday and Christmas 2012 at home. Samuel has just had his second birthday and we had a wonderful time. Can’t wait for Christmas!
  • We win the lottery so Samuel’s dad doesn’t have to go to work and can  spend ALL day, EVERY day with his boy. Unfortunately we’ve had no luck with this!

We’ve had a wonderful year the three of us. I love my little family and I’m so lucky to have my gorgeous boys. I feel greedy to think of hopes and dreams for next year, but all I really want is to be here this time next year telling you what a great year 2013 has been and how strong our little boy is.

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!

20120830-170755.jpg

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.

God save our NHS

I talk a lot about Team Sam. Team Sam is headed up by, well Samuel of course, and consists of not only his Dad and I, but all the people who love and care for him – that includes Julia’s House who look after him and his therapists and doctors who oversee his care.

But I must say one massive component in Team Sam, I mean without it we wouldn’t be able to do what we do so easily, is our old faithful NHS.

Hopefully during our lives most of us will only have to rely on the NHS a few times and for only minor things. We, however, are so reliant on the NHS for everything. As a family our biggest financial cost of having Samuel was me having to give up work. When I was pregnant our intention was for me to go back part-time, whether that was for three or four days (we were still negotiating that right up until his arrival). But we soon realised that there was no option and I was to  give up work and be his carer.

But wow, Samuel must cost the NHS a pretty penny. Off the top of my head they pay for:

  • All his medicines (and don’t forget he has quite a few and I have been reliably informed by my local chemist that they aren’t cheap)
  • Ketogenic formula
  • Pump equipment and bits and bobs
  • Gastrostomy care and related bits and bobs
  • Syringes
  • Various therapies including hydrotherapy and physiotherapy
  • Special buggy
  • Special tumble form seat
  • Special high chair
  • EEGs (recording of electrical activity in the brain)
  • Stuff to test Samuel’s blood ketones and glucose – monitor, lancers and the test strips (one box of 10 ketone strips costs £30 & we use two a day)
  • Paedetrician, Neurologist, Genetics, Child Development, Community Nurse, Speech and Language Therapist, Dietician
  • Treatment and care when admitted as an inpatient (although Samuel has only been admitted once as an emergency patient since coming out of NICU)

I know I’ve forgotten a number of things but I think you get the idea. Anyway, the fantastic NHS pays for all of that. Its all free. We don’t have to have special medical or health insurance. We just get it all because we live in England. I love the NHS. The NHS has helped our little lad defy the odds.

One of Samuel’s best friends Liam lives in America. They don’t have the NHS like us and his Mum and Dad have to worry about medical and health insurance. I think they may not even be covered for Liam starting the Ketogenic Diet which we can’t even imagine happening here. I must admit that I do feel guilty about how lucky we are and it makes me feel all the more grateful.

So to you NHS here is a massive thank you from Samuel, our family and also all the families in this country who benefit like we do.

And so a message to Mr Cameron. The NHS is vital for children like Samuel and without our free medical care, I can’t even imagine what we’d do and the effect it would have on Samuel. Would it mean that we’d have to make certain choices as to which therapies, or worse, which medicines he could have because we, or our insurance company, would be paying and couldn’t afford (or wouldn’t pay out) for certain things? Would we have to look at cheaper alternatives for some of Samuel’s care and treatment? Hands off our NHS Mr Cameron, I’m warning you.

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!

Celebrate: The diet dream has come true

I’ve been debating all morning about whether to publish this post. I’m not sure why. I mean do I really think I’ll be tempting fate or am I worried I’m just wrong? But I really don’t think I am.

I think I need to finally say this out loud because everyone around me is saying it and perhaps I just need to get a grip and say it myself.

So here goes,

the ketogenic diet is working.

There I said it. It shouldn’t be working quite as effectively as it is. His ketones are very low and not in the therapeutic range where you could say he is in ketosis. But the diet is working. It seems that Samuel is as usual making up his own rules once again.

It’s not just me that has noticed a difference in Samuel. He spent a whole day last week at Julia’s House and they were all in agreement that he was far more settled and barely displayed any of his normal twitchy behaviour. His Dad, who only seems him during evenings and weekends because of work has barely seen him seizure at all over the last couple of weeks. I’m keeping a note of all his seizure activity and it tells me that he is only having about three seizures a day and they are all quite short ranging from about 30 seconds to just over two minutes. For Samuel that is incredible.

The diet is working. It’s only a month in and I am saying out loud. The diet is working.

To spend the day with Samuel and not have to sit and watch him regularly seizure, not have to see his little body regularly twist and stiffen as he cries, not have to keep an eye on the clock in case I have to start thinking of getting out his emergency medicine – it’s a luxury, a dream, a wonderful feeling that I can’t explain.

We still have a couple of months to go on the trial before it is agreed that Samuel stays on the diet long-term. But a month in, things are looking good, very good.  My dear reader I will say it one more time. The ketogenic diet is bloody working. But if it can have this effect when his ketones are low, what can we expect when they are high? That thought just makes my heart flutter.

The Ketogenic diet is a high fat and protein but low carbohydrate diet that is used to treat difficult to control epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then moved around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures.

More information: If you want to find out more, 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 (and explain things much better than I do!).

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.

Share your celebration post below and then grab the Celebrate Blogging Challenge badge for your blog! Don’t forget to tweet about it too using #celebratebloghop

Click here to enter your link and view this Linky Tools list…

My previous ‘Celebrate’ blog hop posts:

 Tricky Customer Celebrate Blog Hop

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.

Celebrate: A day to remember

20120511-173350.jpgWhat happened (or not happened) yesterday may be just a one-off, never to be repeated again. It may have just been a miraculous day, coincidence, a fluke, just a bloody good day.

Samuel had NO seizures yesterday. None. Samuel can have something like anywhere between 5 and twenty seizures a day. Yesterday, Samuel had none. He has had seizures every single day of his life. Until yesterday.

Is it the ketogenic diet? Did the seizure monster just decide to have the day off yesterday?

Yes, I must admit he was a bit grumpy for a lot of the day, which I’m assuming is teething. Again. But no seizures?

What happened yesterday may never be repeated. Today, tomorrow we may have a terrible day with seizures in full force. But even if that is the case, I will always appreciate and celebrate our day yesterday.

The Ketogenic diet is a high fat and protein but low carbohydrate diet that is used to treat difficult to control epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then moved around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures.

More information: If you want to find out more, 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 (and explain things much better than I do!).

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.

Share your celebration post below and then grab the Celebrate Blogging Challenge badge for your blog! Don’t forget to tweet about it too using #celebratebloghop

Click here to enter your link and view this Linky Tools list…

My previous ‘Celebrate’ blog hop posts:

Tricky Customer Celebrate Blog Hop

Ketogenic Diet – first 14 days

So we are almost coming up to 14 days since Samuel started the Ketogenic Diet. We have finally got the hang of putting together the recipe, currently it’s: 3:1 ratio – 30mls cooled boiled water, add 1 scoop of SMA LF, use only 14mls and discard the rest, add 20g KetoCal, shake well then add cooled boiled water to make a total feed of 180mls. Feed Samuel 160mls via the pump and once finished add 20mls of cooled boiled water to the feed bottle to flush through remaining feed.

His ketone levels have been a bit up and down. We thought hoped they would get a bit more stable come the end of week one and the start of week two. But that doesn’t seem to be the case. But he is tolerating the new diet well (ie keeping it in both ends) but we are wondering if it has made him a little constipated which apparently is common on this sort of diet.

But you want me to tell you if I think it’s working, don’t you? I don’t think I can answer that. It’s still only very early days. We did feel that towards the end of week one, as his ketones were increasing, that he had improved. Although he was still having daily seizures, he was sleeping more (in a good way) and when he was awake he did seem a bit more alert. But the problem you see with this boy is that we have bad patches, bloody bad patches, good patches and bloody good patches. So it is really hard for us to say yet whether the new diet is having an effect.

I think we will only be confident about whether it is working or not when Samuel has been on it longer and his ketones are more stable and he is in effect in ketosis.

When I met with the pediatrician last Monday (which would have been Day 7 of the diet). I told him that we had a good weekend before which I had noticed had coincided with his ketones increasing. The pediatrician started smiling and said he is now optimistic that it may work for Samuel. He gave himself away there. I realised that before we started the diet, although he felt strongly that we had to try the diet, he wasn’t expecting it to work. Why? Well because of the severity of Samuel’s seizures. The fact that some epileptic medicines that usually work didn’t even touch the sides with our boy. But Dr H said he was like us, now cautiously optimistic.

Cautiously optimistic. I can live with that. Because in that there’s hope, isn’t there?

The Ketogenic diet is a high fat and protein but low carbohydrate diet that is used to treat difficult to control epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then moved around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures.

More information: If you want to find out more, 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 too. Samuel’s pal Little H is a couple of months ahead of Samuel on the diet. Pop over and have a read of the Diary of the KetoCal Kid

matthewsfriends.org is a fantastic resource full of really useful information and case studies about the Ketogenic Diet (and explain things much better than I do!).

Celebrate: Ketogenic Diet begins

So we ‘ve done it, Samuel has now started the Ketogenic Diet. As I write this, Samuel’s ketone levels are now just inside the therapeutic range, so we are heading in the right direction.

I’ve written before about how much hope I have for it to work. Even if it means we can just take him off one medicine. With all his physical ‘break through’ seizures he has combined with the seizures we don’t see (I may never have told you that he has seizures in his brain that don’t show physically), I always think it must be very bright and noisy in his brain, so even if the diet can just turn down the volume in his brain just a little, that would be wonderful.

My husband said today that he hopes, along with reduced seizure activity, the new diet lets part of his brain develop and we finally get smiles from Samuel. Just the odd smile now and again would mean the world and more to us.

But while we are all full of hope, we do feel like celebrating too. Celebrating the fact we have been given this chance. Samuel has been given this chance. Who knows what will happen. While I’m trying to be cautiously optimistic (in case it doesn’t work), I’m also so excited!

Whatever happens, the Ketogenic Diet has given Samuel, has given us all a chance and I think that is most definitely worth celebrating.

For more information about the Ketogenic Diet, pop over to Samuel’s Ketogenic Diet diary and also visit  www.matthewsfriends.org

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.

Share your celebration post below and once you are done grab the Celebrate Blogging Challenge badge for your blog! Don’t forget to tweet about it too using #celebratebloghop

Click here to enter your link and view this Linky Tools list…

My previous ‘Celebrate’ blog hop posts:

Tricky Customer Celebrate Blog Hop

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.

20120427-075945.jpg

Tricky customer

Samuel is going into hospital on Monday as an inpatient to start the ketogenic diet. I like our hospital, well as much as anyone likes a hospital. I’m use to it. We got there a lot for appointments or to pick up something – like tubes or new feed. To me it’s just a building where they treat poorly people. The doctors and nurses I’ve met there are really nice. The nurses always seem to fall in love with Samuel quite quickly and are really kind and gentle with him. Also, we are very lucky that Samuel’s pediatrician is wonderful (I’m a bit of a fan of his).

But I must admit I am nervous about going in next week. Samuel isn’t having any invasive procedures, he’s not going under the knife or being given general anesthetic. But I still am nervous.

I’m nervous because of his seizures. As the pediatrician put it, Samuel has off the scale epilepsy. Doctors and nurses are trained, are programmed, to treat seizure activity when it occurs. But you don’t do that with Samuel. He has seizures every day, so you would be sedating him every day. As I’ve said before, some seizures you just let happen, you cuddle Samuel and hold on for the bumpy ride until he’s settled again. Sometimes he twitches a lot. That is seizure activity. It unnerves doctors.

Last year we had to take Samuel into hospital because of his seizures (Better late than never). The doctor was a really nice guy. But I almost had to wrestle the emergency seizure medicine off him. We were having a rest in the parents room when the nurse called us to say that they might have to medicate Sam. As we approached the cot the doctor was prepping Samuel’s canula to give him some intravenous medicine. Samuel was twitching. Just twitching. The doctor said that he had seen what Samuel had done the night before (the previous evening was a very rough ride for us all) and said he anticipated that Samuel was about to do the same. I said no. That’s not how we treat his epilepsy. We have to wait and let it become something before we medicate, we don’t medicate just in case (that would mean he’d be medicated every day). I asked the doctor for five minutes more, just give him five minutes. And he did. I got Sam out of his cot and we had a cuddle. The twitches, the ‘seizure activity’ stopped. He settled. Oh yeah, he then went off to sleep.

When we see new doctors, doctors that haven’t met Samuel before, there are always the same questions. Now I know doctors have to ask these questions, it would probably be wrong if they didn’t. But I just find it difficult when the doctors first meet Samuel and are still looking at him through ‘textbook epilepsy’ eyes (I do of course appreciate that there isn’t textbook epilepsy):

  • How many seizures does he have in a day?
  • You realise that this is seizure activity? (Pointing at the twitchy, jerky movements that I haven’t appeared to acknowledge. But I always know every movement my boy does, I just don’t make a song and dance about it every time)
  • What do his other seizures look like?
  • How long do they normally go on for?
  • Is this normal for Samuel? And this is the question I do like because I respond by very enthusiastically saying ‘YES! This is very normal for Samuel.’

And that’s it, what Samuel does is normal for Samuel. It isn’t normal outside of our bubble, but in his bubble it is what he does. He has an abnormal brain, that is why every EEG he has had has always come back the same. As we always say it ‘abnormal, but normal for Samuel’.

The other thing that although doesn’t annoy me, I do find strange is the enthusiastic wafting around of oxygen. Samuel doesn’t have oxygen at home. We have never had oxygen at home. When we came home from NICU we came home with a barrel full of medicines but no oxygen. It was always felt by the doctors in NICU that oxygen didn’t really help. He’d either come out of the seizure by himself or once we’ve given him emergency medicine. This really surprises people but his body seems to cope. with one type of his seizures, when he first starts, his lips very briefly go blue, but then they return to normal. I do thank our lucky stars every day (yes readers, we are extremely lucky) that Samuel doesn’t need help breathing and know that in the future it might all change. But for now it’s a nice feeling I can tell you, knowing your child can breathe independently and not require help.

So when the nurses say ‘shall we give him some oxygen?’ I always respond with ‘well you are very welcome to but we don’t have it at home’ And they do give him a big old waft of oxygen.

Samuel’s pediatrician, have I mentioned I’m a fan? will be around in the background and he is very in tune with our boy, so I do keep reminding myself of that which makes me feel more relaxed. I know he will do everything he can to ensure that the doctors on shift understand as much as anyone can about the quirks of Samuel and what to do and when. And hopefully the doctors and nurses will quickly learn the mantra of: ‘KEEP CALM AND ASK MUM’

I’m not sure the point of this post. But I think it just confirms that for nurses and doctors, Samuel is most definitely a tricky customer. I probably should get him a t-shirt made with that on!