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.

An O thing

So, we spent the last week in hospital. ‘What?‘ You say. ‘I didn’t know about that‘. Well reader I would have written a little post if I could have done (mainly to relieve my boredom) but the signal was so bad that my phone was rubbish! Anyway, I digress…

At 8pm on Tuesday we had to give Samuel his emergency medicine Midazolam as he was clustering and we couldn’t wait for his evening medicines to kick in (which we had just given him). After having Midazolam, Samuel often has quite an elaborate wind down with lots of fussing and this time it was no different but he then started to cough up A LOT of phlegm.

Once he’d calmed down and was sedated his breathing started to very quickly become quite laboured and exaggerated and he was flaring his nostrils. We checked his SATs and they were quite poor. So we packed him up and took him into hospital.

As soon as he was in hospital he was put on oxygen and hooked up to a saturation monitor and you could see the  instant benefit of the oxygen.

To cut a long story short, they think he might have had a virus which had caused the breathing problems. He started off on 90% oxygen but quite soon we were able to start weaning him off. He was initially given an oxygen mask, then he was put in an oxygen box (which looked like a little greenhouse), then as he was taken out of the box and given nasal prongs.

While in hospital, Samuel’s epilepsy was very bad. Not sure if that was just a coincidence or something to do with the virus (he was also a bit constipated which may have contributed). He had several doses of Midazolam and we had to grit our teeth and hope this wasn’t the start of something else.

It was also frustrating that Samuel’s brilliant paedetrician, who is the one person at the hospital who knows and understands everything about Samuel (as much as that is possible), was on holiday, but the nurses were brilliant and I think the other doctors are starting to get the hang of our little tricky customer.

As hospital stays go, it wasn’t too bad. We could see that as far as the virus was concerned he was getting better. His seizures did calm down and he didn’t have any emergency medicine yesterday (Friday). I also wasn’t alone during our stay. Although Samuel’s Dad had to go to work, two of my lovely Mum-friends from Julia’s House were also in hospital with their children, so we had a chance for a good natter.

We’ve got to see how things go, his breathing is back to normal but he’s still jerky and while I’ve been writing this he’s had a couple of short seizures. It might all be fine or he might end up having some emergency medicine before the end of the day.

Either way it is great to be home.

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.

Chez Samuel

The occupational therapist from the council came to our home today (same lady who sorted Samuel out with his new highchair) to talk about our options for making changes to our house to make it easier to move Samuel about as he gets bigger.

Although Samuel is only two years old, he is getting noticeably heavier to move around the house. He doesn’t hold on or help, so you have to provide all the support when he’s being carried. Imagine carrying a 6-week-old baby the size of a two year-old.

We discussed the following options:

1. Stair lift – it’s a conventional stair lift with something to go in it to hold in people of Samuel’s size. I don’t like this option as our stairs and landing are very narrow  and once it gets to the top I’ll have to take Samuel out right at the top of the stairs. Keeping in mind how much support he needs, plus his seizures, I don’t think this is a safe option, to which the occupational therapist agreed.
2. Lift – our spare bedroom (slightly bigger than Samuel’s current bedroom) is above the garage. The lift would be positioned in the garage and go up into the bedroom. Although our garage is integral, there is no access to it from inside the house, so a doorway would have to be created so we can access the garage and lift from inside the house. In the bedroom the lift would take up a fair amount of space and of course we would have to make sure that there is adequate space around it to take Samuel in and out of the lift. As the bedroom is already rather small, it would hardly leave any space – we were struggling to work out how we’d fit in his chest of drawers! Because of the amount of space it would take up (plus I’m not sure I like the idea of sending Samuel up in a lift on his own), I’m not entirely fond of this idea.
3. Garage conversion – our garage is integral, so we could convert it into a downstairs bedroom for Samuel. To do so we would have to create a door from inside of the house into the garage/new bedroom, but we’d hope that wouldn’t be a problem. Apparently the council would rather not create a bedroom off the kitchen (which Sam’s would be if we did this), but they still do it when necessary.
4. Extension – we have an end-of-terrace house with quite a good-sized front and side garden so there should be space to build a bedroom for Samuel on the side of our house.

Once the council decides which are the best options for us and our home, they will then choose the cheapest option to fund. If, for example, we were very keen to do the side extension but it didn’t come out as the cheapest option, we could take the money they are prepared to give us and add to it from our pockets to create the extension.

The other issue we looked at was access to the house. We have a very steep drive and a small entrance way, so it has been suggested that we could look at using the garden entrance/exit for Samuel. If we did do this then I would ask the council if it would be possible that one of the spaces at the side of the house could be marked up to be used by Samuel, as we simply can’t park at the end of the street because someone has taken the space!

As the back doorway is very narrow and can’t be made bigger because of the kitchen units (but is currently the only access point other than the front door), it was suggested that perhaps we could look at changing the large window in the adjoining lounge/dinning room to french doors. I think this is a great idea, but only problem is we wont be able to use our already small dining area, as the dining table sits in front of where the doors would go! So, perhaps if we somehow come into some money we could look at building a conservatory on the side of the house to use as a dining room, if we haven’t already used the space for an extension.

This process is a long one, but we have at least got the ball rolling. We thought we should get things moving now, before Samuel gets too heavy to take up and down the stairs and we find ourselves in a pickle. We love our home and want to make sure that Samuel can continue to be at the heart of it and doesn’t miss out on anything. Oh and we don’t wreck our backs carrying him around!

So watch this space I guess! If we do financially contribute to the work then we will have to do some fundraising, so you will hear from us if we need your help…unless some building and decorating fairies happen to pop by!

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:

• Celebrate: The ultimate milestone

Celebrate: The ultimate milestone

Under ‘normal’ circumstances (whatever that may be), in my 17 months career so far as a Mum, I’d have noted and celebrated Samuel’s milestones. When he said his first word and what it was, the first time he laughed, when he started to roll over, crawl, walk, when we started getting him onto solids and so on.

But these are milestones that we have never reached and may never do. But I think Samuel has reached milestones that beat all these.

Milestone 1 – Coming home from NICU. We were warned that it might never happen. We might never be able to take him home because we’d either lose him to his seizures or he’d be so heavily sedated, he’d have to stay in hospital indefinitely.

Milestone 2 – First birthday. Something we felt we could only dream of reaching. And we did and had a fantastic family birthday party.

Milestone 3 – Christmas. Samuel spent his first Christmas in hospital, but he spent his second at home with us and it was absolutely wonderful.

Milestone 4 – Our one year anniversary of being home from NICU.

Milestone 5 – Beating the genetics prognosis. Last April (2011), we were told that it was very likely that we would only have Samuel for months. His condition would deteriorate and finally beat him. Beat us. That was a year ago and look at him now. His neurologist has said herself how impressed she is with how well he is doing. Since we’ve been home from NICU we have only had one emergency admission. I think this is the ultimate milestone and Samuel has reached it with bells on.

My brave little solder. Still here, still fighting, still gorgeous.

Team Sam. 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.

Share your celebration post below and once you are done grab the Celebrate Blogging Challenge badge for your blog!

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

What colour is your grass?

Is your grass greener than mine? Probably.

I was catching up on blog posts and came across the latest post by Single Dad/Disabled Daughter. The post was called ‘I like my grass brown, thank you very much..’ and he talks about comparing disabilities and looking at how he’d rather his children had less painful, less limiting conditions than they do. He has two children Pearlsky and David, I think both are in their teens and both have extremely life limiting (as in they cannot do anything for themselves) conditions with a bit of epilepsy thrown in for good measure. I may have just done his children a total disservice by not explaining their conditions properly and in detail, so if you want to find out more than have a look at his blog.

I like my grass brown, thank you very much

I seem to have launched a discussion a few posts ago about comparing disabilities when I said “Autistic? Screw you. I’d kill for a kid that was autistic.” Let me take that a bit further …

I would rather be deaf than blind. I don’t think I will ever have a choice, and the exercise is academic, but the fact is, I think one is less onerous than the other. I would rather be a paraplegic than have uncontrolled epilepsy. Hence, I can “rank” disabilities. Would I rather have a child that is autistic or has an in-born error of metabolism of a certain amino acid? I can voice an opinion.

It does get much harder when there are multiple disabilities. Would I rather be deaf with epilepsy or blind and have a g-tube? Now the discussion gets a bit bizarre and I need not go further, except to say that when talking about multiple disabilities, the combinations are infinite and the comparisons are impossible.

I can also say that I would take any disability that is not genetically inheritable for my child than any one that is. Sophie, of A Moon, Worn As If It Had Been a Shell, can walk and has some forms of communication, but has many break-through seizures (and is severely disabled). Pearlsky has no communication, cannot walk, but does not really have break-through seizures much anymore. Would I trade? Again, a moot question and one not easy to answer. BUT, Sophie has two seemingly wonderful brothers, “normal” brothers. Pearlsky, alas has no “normal” sibling. That I would trade. Of that, I am jealous. I chose to marry into a gene pool that unfortunately did not match mine (actually, matched it too well). We all make mistakes … but I would greatly have preferred an non-genetic based disability. David, my son, would have preferred that as well, I am sure.

As parents of “this” population, I agree, we can’t really compare. And yes, we must support each other.

Another reason we cannot compare has a lot has to do with our own level on the universal shit-o-meter. Let’s say that due to my upbringing, beliefs, education, spirituality, experiences, etc. I can handle up to an 8 on the universal shit-o-meter. At that point I collapse into a quivering heap on the floor and need a Pearlsky-tini to continue (three parts VOX vodka, one part Valium (brand, not generic), chilled). You, on the other hand, may reach quivering-heap-on-the-floor status at a 6 on the universal shit-o-meter. Does not make you less of a person? No, just different. So, your 6 is actually equal in pain to you as my 8 is to me. Your life seems easy to me, I wonder why you can’t deal and may envy your situation where you think my life is beyond impossible, but the truth is we both feel an equivalent level of pain, we have the same level of angst.

The point? You should not feel bad that you have it easier and can’t deal, and I should not think you a wimp for not being able to deal with something I would find easy. Life is not comparable like that. Severe disabilities are not comparable. Shit is shit, though.

Yet, I can still legitimately be envious of your problems.

“You and your friends get together. Everyone puts their problems on the table. When you look at them all, you’ll take back your own.” ~ my maternal grandmother, Pearl, and boy do I miss her.

The grass may be greener, but I guess I like mine brown.

Reading through his blog post I totally understood what he was saying. It might not be the right thing to say, but I completely understood. I’m in contact with a lot fantastic parents of children with a diverse range of special needs and disabilities. I read and hear about their problems and difficulties and while I feel sorry for what the child has to go through and for the parent who has to care for them and worry about them, I do harbour this secret feeling that I would give everything I own, every limb of mine for Samuel to have their condition.

Samuel also has a genetic condition, actually to be pedantic, I too have a genetic condition, but Mother Nature decided that I should escape symptoms, but pass them on to my children.

I don’t want those parents to feel guilty that their children in a bizarre way may be ‘better off’ than Samuel. They’ve got a better deal than we have. And I hope that the parents will understand that in no way is my intention to undermine or belittle their child’s condition and the problems that go with it.

But I can’t help feeling the way I do. Samuel doesn’t and will probably never smile, laugh, give eye contact, sit up, walk, doesn’t acknowledge us, cannot eat orally, doesn’t communicate, has daily breakthrough seizures…I’m sure if we were able to do deals, I’d easily find someone who would have a much better condition to have, but would anyone want to trade for what Samuel has? I doubt it.  But this is the hand we’ve been dealt and yes, we may have been dealt a much harder hand than you. But as Disabled Dad says, shit is still shit, whichever way you look at it.

Believer in hope

We finally have a date for Samuel to go into hospital to start the ketogenic diet. Assuming that he doesn’t suddenly come down with a bug and that there is a bed available, we are booked to go in on 23 April.

If you have not heard of the ketogenic diet, well it is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily 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 transported 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.

I have butterflies in my stomach. I so want this diet to work. To have a positive effect on Samuel. Even at the very least if it means that he just comes off one medicine, that would be fantastic. But I know for some children it has done so much more and made a huge difference to them. I know of a little girl that belongs to Samuel’s hospice and by a year after she started the diet she had come off all her medicines. The diet has made a huge difference to her in other ways too.

The idea of it having such an impact on Samuel, well I can’t put into words what that would mean to all of us. Could it mean that we come of one/some/all of his medicines? Would it allow him to develop – could he finally reach a milestone? Will he be almost/totally seizure free?

Samuel’s doctor has told us that they give the diet three months to see whether it is working. Some children show an improvement very quickly, while some show a slower response. If after three months sufficient ketones are being maintained but there have been no beneficial changes then the diet is stopped. For Samuel it would mean that the doctors return to the drug book and review the cocktail he is on and possibly take him off one and add a new medicine to our drug box.

I hope with every part of me, I pray, oh goodness do I pray and have everything crossed that this does work for our boy. If this works reader, oh my god, if this works it could change everything.

Please hope and pray with us. Team Sam..x

For more information about the ketogenic diet visit www.matthewsfriends.org