Plan B

Samuel started the Ketogenic Diet in April. It was quite soon that we could see a positive change in Samuel and his seizures. Despite his ketones being low and sometimes very up and down, there was a noticeable difference in how settled Samuel had become. It wasn’t just us that noticed but his carers at Julia’s House and our friends and family.

But over the last few weeks we had noticed that Samuel’s seizures had started to increase and he had also begun to lose weight, which in turn was affecting his ketones. It seems that Samuel had not been absorbing his fats properly and his dirty nappies, let’s just say they looked very fatty!

So we went into hospital for a few days to try a new enzyme called Pancrex to help him absorb fats. It didn’t seem to be making a big difference. He’s being weighed regularly and the scales are showing that his weight isn’t improving,  in fact it seems to be dropping.

We are now moving on to Plan B. We are starting Samuel on the MCT (Medium Chain Triglycerides) Ketogenic Diet. If Samuel fails to gain adequate weight on this diet then we will be coming off Ketogenic Diet all together. If we do have to do this, it may not be the end of the Ketogenic road for Samuel. If we come off the diet, he puts on a good amount of weight and the experts are happy, then we may revisit the diet once again.

As Samuel is fed via a gastrostomy button, the diet is made up in a liquid form. Preparing his feeds feels like a cookery lesson (but with no added spices!). For example, today I’m feeding him 100ml Ketocal (Ketogenic liquid that he was on before), 12ml Liquigen (MCT fat), 3ml Maxijul (carbohydrate), 3g Carbohydrate free mix – the rest of the feed is made up with water. This doesn’t come to us in a made up liquid, we have to put it all together ourselves.The quantities and ratios will be tweaked as time goes on but this is our starting point.

What is MCT Ketogenic Diet?

Most naturally occurring fats are called triglycerides and usually they are Long Chain Triglycerides which take longer to metabolise than carbohydrate and protein. MCT fats also occur naturally, the most abundant source is coconut oil and MCT oil is refined from coconut oil. This type of oil is different because it is metabolised in a different way than LCT fats and a lot quicker too and because of this it produces a lot more ketones.

The rationale for the MCT diet is that because the MCT oil is more ‘ketogenic’, it is possible to increase the levels of carbohydrate and protein, and still achieve the basic objective of the diet which is the body going into ketosis. Because this oil produces a lot of ketones quicker than LCT fats – this oil is used as a ‘supplement’ with this version of the Ketogenic diet and it therefore allows more carbohydrates and calories to be taken in whilst still achieving ‘ketosis’ and hopefully the beneficial effects of that ketosis.

(Taken from Matthew’s Friends’ leaflet)

To find out more about the Ketogenic Diet, please visit Matthew’s Friends. Matthew’s Friends is a charity set up to support families like ours with a child on the ketogenic diet. They have provided a lot of support and information to Samuel’s dieticians.

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.

Your friend Samuel

Samuel is a bit different to your other friends. In our heads we have brains which are very clever, like computers, which help us to do all the amazing things we can do like walking, talking, eating and playing. But Samuel’s brain is missing a piece. If you think of our brains as a jigsaw puzzle, Samuel’s is missing a puzzle piece and because of this there are a few things that he cannot do.

Samuel doesn’t chat or play like you or I. If you go up to him and say hello, he wont say hello back, smile at you or look at your toys. He’s not being rude, it’s just simple things like that are very difficult for him. Samuel cannot walk, but he can still go out and about by being pushed around in his special buggy.

If you met Samuel you might notice that he doesn’t eat food like you or I. He doesn’t drink or eat with his mouth. Samuel’s food looks a bit like a milkshake and he has it through a special button on his tummy. Samuel’s Mummy and Daddy attach a little tube to the button and the milkshake goes through the tube into his tummy. The button doesn’t hurt and all Samuel can feel is the nice milkshake filling up his tummy.

Samuel often visits his friends at Julia’s House. Julia’s House is a bit like a special nursery for children that might be poorly or need some extra special help. When he is there he spends a lot of time being cuddled by some of the grown ups who look after him. Playing with Samuel is a bit different too, the grown ups might ring some noisy bells for him to listen to or they might show him some nice pictures. At Julia’s House the children do arts and crafts, baking or if the weather is nice they might use the swing in the garden. There are always lots of fun things to do. Samuel has even helped to make cookies and make his Mummy a Mothers Day card.

Samuel is sometimes a little bit poorly. You might notice him making funny jerky movements or his legs and arms go in funny positions, but don’t worry, he’s ok. Sometimes his Mummy and Daddy give him medicines which make him feel much better.

Samuel can’t play or chat to you like other children. But he can still be your friend. Just hold his hand and chat to him or show him how your toys work. If he doesn’t look at you, don’t worry because he probably is listening and he does like to hear noises and people talking.

Samuel is a bit different to your other friends, but he can still be your friend.