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.

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.

Meal times

A friend of Samuel’s, Little H (his mum blogs at Little Mamma Said), will be having his gastrostomy operation tomorrow and it got me thinking about when Samuel had his operation and was finally able to get rid of the NG tube.

Samuel has never taken food orally. On his first day of life we were in postnatal with the scarily enthusiastic midwives thrusting him on my breast every five minutes. Samuel wasn’t having any of it. Literally. He would either get agitated and upset or go to sleep. Then on his second day of life we found ourselves in NICU. The (male) Consultants (who were lovely I must add) would say, ‘lets try him on the breast today’. We’d try but have the usual result. Sleep or agitated and crying. But then as days passed and they realised that his seizures were more serious than they’d thought, they started to sedate him more and I was just left to express milk.

As time went on Samuel continued to be sedated so breast-feeding, any kind of feeding other than NG tube feeding, was a no no. He was finally brought out of sedation and I started to ask about whether we could try oral feeding again. Problem was, by this time they needed the Speech and Language Therapist to come over and assess him before they gave him anything orally. But she was the only person in that role and she worked part-time. So we had to wait several days for her to come over and when she did, more often than not, Sam was sleeping, having a seizure or just not performing with his dummy.

The ridiculous thing is on his notes it says something like that he has a poor swallow. But that is simply not the case. Samuel has never once needed suction because of a poor swallow and excess saliva. He has always swallowed his saliva. He only dribbles very occasionally when he is teething or had a big seizure.

But we carried on feeding him via his NG tube and was delighted when in June last year (2011) he had an operation to have a gastrostomy button put in. It was the first operation he had ever had and he was absolutely miserable when he came around from the anesthetic. He was very sore and uncomfortable and he was having increased seizure activity, so our old friend Midazolam did make an appearance. I was also nervous about picking up him to cuddle him as I was so afraid of knocking his new button. But within a few days I was much more confident and before long he was back to having lots of tummy time.

Having the gastrostomy and getting rid of Samuel’s NG tube had so many benefits. I no longer had to pass a tube up his nose and down his throat which wasn’t pleasant for either Sam or I. The tube would be pulled out accidentally a number of times. The tape we had to use to stick the tube to the side of his face, would really aggravate his skin and he would always have a big sore red patch on his face when I’d removed the tape. We also of course got looks and questions too when out in public (by strangers). We were often asked how premature he was (he wasn’t, he was born full-term).

All medicines are given via syringe through Sam’s gastrostomy button on his tummy

Having the gastrostomy button now meant we could feed Samuel by a pump which was fantastic. I hated bolus feeding. With bolus feeding, you fill a syringe with feed or water, connect it to the NG tube and gravity takes the liquid down through the tube. However, hold the syringe too high and the fluid goes down too fas. If he gets agitated, cries, has a seizure, the fluid comes all the way back up the tube and syringe. I wasn’t very good at it!

We noticed quite early on that it was much easier to discreetly feed him when out in public (The pump is really simple to use and we have a specially designed bag that we can put the pump and feed in to take out and about and we use it everywhere!). We’d just hook him up to the pump and it takes care of itself. We only really get attention when the pump beeps or when we are attaching or removing the tubes.

I’m not sure whether we will ever get Samuel eating orally. I really wish that in the early days of NICU I’d insisted that we tried him with a bottle instead of trying to breast feed him. He may have had a better chance. Although in the past we have tried him with tasters, it has only been very tiny amounts of food and has been more for sensory than anything else. I’m hoping that once things are more settled with his new diet we can start the sensory tasters again. I’d love him to have that experience in his mouth. When we have to give him Calpol I always give him the syringe afterwards to suck and he does seem to like it. Perhaps because of his global development delay, he may never get the coordination right or not instinctively know what to do, but I’d like us to give it a good try.

This post has been included in the the #definenormal blogging challenge. Pop over to Just Bring The Chocolate to find out more and read other #definenormal posts.

New set of wheels

We picked up Sam’s new buggy on Friday, a new ‘special’ buggy. The Occupational Therapist wasn’t happy with how unsuported he was in his old one – we use to have to put in rolled up towels to try and improve his positioning – and he was growing out of it fast.

I think husband and I both felt a bit hesistant at first about it, as yes it does look a bit ‘special needs’ but that lasted about 5 minutes once we saw him in it and how well supported he is.

We took the new buggy out at the weekend but did make the mistake of picking a day when the German market was in town and it was absolutely heaving with people. I did feel extra protective of him as he seems much more exposed in his new buggy and people seemed to be walking really close to us. But we then went for a picnic in the park and set up Sam’s gastrostomy pump and we all ate al fresco. People walked past us and I did notice them looking at Samuel, but they didn’t stare in that awful way, but instead titled their head to one side and smiled. That’s Samuel’s magic, he can touch anyone’s heart.