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.

Advertisements

Lonely battle

It feels weird starting this as I’m not actually sure if I will ever publish this post and if I do, how long it will stay ‘live’ for. When I started this blog I never wanted to complain, to moan or be negative. It was never going to be a fluffy blog, apart from lovely things like enjoying our gorgeous boy and Samuel cuddles, there isn’t much that’s fluffy in our world. But I didn’t want to ever moan.

But things are feeling quite shitty lately. We are on Plan B with the diet and we have no idea whether it will work and if we will ever go back to the wonderful seizure free times we had on the Ketogenic Diet. We are having quite a difficult time  at the moment with Samuel’s seizures and we are literally taking  it one day at a time. If I worried about tomorrow after just about getting through today, I wouldn’t sleep tonight. We are doing everything we can to avoid Samuel (and I) having to go back into hospital for another diet or drug review. Things are hard.

I do believe that since having Samuel I am a better person in many ways. I know I’m more compassionate than I ever was before and my eyes are wide open now to disabilities. I am not frightened or nervous when I meet a child with a disability, I see their little character and am not afraid to take their hand and chat to them. But also I must admit in many ways, I’ve become less tolerant of people. Since joining this new world I’ve realised how stupid and thoughtless people are and how the phrase ‘Oh, but they mean well’, really sticks in my throat.

Something I personally find difficult is how on our own I feel we are. Yes we have my beautiful friends, who are here for me to talk to, cuddle and moan to, the invaluable support from our Julia’s House family and of course my online family who regularly tweet me and ask me how things are.

But often I feel that we are doing this very much on our own. Some of our family seem to choose to stick their heads in the sand and apart from the odd ‘hugs to Sam’ text message, we don’t hear anything from them. So if things start to go pear-shaped we have to ring and tell them, like we are announcing something. If they were on the road with us then they would know already.

Some of our family do ring regularly and although I know they feel out of their depth, they really try to keep up and to understand what is going on. They might not say very much, lots of ‘Oh right’ but they listen. They want to know. They remember our conversation. And I really appreciate that, it helps me to feel that they are there with us.

But I struggle with the people who just cream off the good stuff. They just want to see and cuddle Samuel and maybe be told the bottom line, but not the details. They aren’t on the bumpy road with us at all. They may talk about him proudly and I know love him very much, but they have no idea whatsoever what it’s like to have a hellish evening with a boy who wont stop having seizures and an emergency medicine that feels like it might not actually work.

The thing is I know that if we rang them up and said can we have/borrow x they’d say ‘Yes of course’. If we wanted them to do something for us they’d do it. But we would have to ask. When you are in our situation sometimes you need people to offer. To say straight ‘Can we do x for you?’ To call up and for them to make the effort to be kept up-to-date on how Samuel is doing rather than the responsibility to be constantly on us to report back, that would mean alot.

I know what you are thinking. Tell them. Let them know you feel like this. But it’s hard to get people to listen when their heads are firmly wedged in that sand. And what then? They feel like they have to call us up regularly and force themselves to listen? No. They have to do it because they want to do it.

It really feels that it is just Chris, Samuel and I fighting this battle on our own. To make decisions when to sedate our own child. When we feel we have to take him into hospital. When at 7pm he is all over the place but an hour away from medicines and we have to decide which route to take – early medicines, emergency medicines or maybe his sleepy drug? When to sound the alarm bells that things are getting more serious and we might be heading for trouble. Who makes those decisions? Us, just us. It can be a lonely battle.

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.

Fats and Fits

TUESDAY

So, day two of our hospital stay. Not quite sure what to say really. We’ve started Samuel on a medicine called Pancrex to help him absorb fats better. He started on 1.55ml yesterday but we’ve cranked up the dose today. So far we’ve not seen a difference. Dietician is still not happy with Samuel’s nappies and quite frankly, as the one changing them, neither am I!

Pancrex is an odd gloopy medicine that I make from a powder and water. It is probably the ugliest medicine I have seen with a very creepy smell.

Seizure wise? They are getting worse. He had Midazolam yesterday afternoon but woke up after a three hour snooze unsettled, which carried on through the evening. At 10pm he had 6ml of Chloral Hydrate and thank goodness for that as he finally relaxed and went off to sleep.

He woke then at 3.30am and was twitchy on and off from then. Today has so far been very strange, his sleeping pattern is very different and he is very twitchy.

We are all hoping that this is to do with his weight loss. He’s not absorbing his fats, so losing weight which is reducing his ketone levels (0.5 today) which could be why his seizures are rapidly increasing. Hopefully if this new medicine works & he puts on weight then we will see an improvement in him. Well that’s what we are hoping and praying for.

I want to end this post all chirpy and upbeat but struggling with that to be honest. It’s obvious that we will be here for most of the week, but at least the nurses, doctors and our poor overworked dietician are all fantastic and all trying their damndest to help Samuel.

WEDNESDAY

After ketones of 0.5 and 0.4 yesterday, it was quite a nice way to start the day with reading of 0.6. Still ridiculously low but at least it’s an increase, if only a slight one.

The dietician had asked me to save her Samuel’s morning dirty nappies (brave woman) and I was pleased to see they looked better. Less, well, fatty. A poo sample is also being sent off to the lab.

Our plan now is to stay in another 48 hours, increase the enzyme medicine some more and keep monitoring his nappies and ketones. It will take a bit of time for us to see a weight gain though.

In the meantime we just have to brace ourselves and use the medicines we have in our armoury to keep the boy comfortable.

So far today has started off much better than yesterday, so I’m feeling cautiously optimistic. We’ve just got to wait and see.

Oh and you may be interested to know that this situation of a child on the ketogenic diet having to use these enzymes is rather unusual. In fact they don’t know of many any in the country it would seem. Why am I not surprised?!

UPDATE: This evening it was discovered (despite numerous different people listening to his chest since he was admitted) that Samuel has a chest infection on his right side. Chest infections are one of the things I fear for Samuel so did panic me initially but he’s been started on a course of antibiotics. Infections can reduce ketones. Is this why his have been so low? Will my son ever stop throwing us curve balls?

THURSDAY

8.30am: Despite having Midazolam at about 4pm yesterday, he ended up having another dose around 9pm. He then settled and had a good night. So far this morning he has been very relaxed and it’s nice to see him so settled even before his morning medicines.

10.30am: It has been suggested that slowing down Samuel’s feed may help his fat absorption. I was asked whether it would work at home having Samuel on a 20 hour continuos pump feed. My response was a big NO, it wouldn’t work. I think the plan may be then to have a very long feed over night and a couple of slightly slower feeds during the day. This should fit in ok hopefully with our daily routine. Well I very much hope so.

9pm: Today has been a much better day. Samuel was very snoozy this morning and although twitchy and did have a number of seizures, he didn’t have any Midazolam and has gone off to sleep on just his usual drugs.

We can also report from Camp Sam that his ketones were surprisingly high this evening, 1.9. Not going to get too excited yet as who knows what is in store for us tomorrow.

FRIDAY

8am: Samuel had a good night overnight, he slept through like a good boy. But, he was put on a saturation monitor overnight and it was showing that his SATs were low so he needed oxygen a lot of the night. I think this will probably mean we will be in hospital for at least another night. Because of the chest infection.

Back to the original reason we came into hospital, we’ve got a new feeding plan which I’m trying to get my head around. It’s confused me as we are reintroducing night feeds and the day feeds are so long (2 hours) I’m not sure what that will be like at home to manage. But if it helps his gut, then who am I to complain!

His ketones were 0.9 this morning so at least they are moving in the right direction.

It’s all a waiting game really.

MONDAY (17 September)

Chest infection: Samuel’s sat levels overnight are causing a headache. They keep sitting at 86 which nurses aren’t happy with and have to put him on oxygen. They want his sats to be in the 90s, preferably above 95. It could be because it’s just Samuel, the medicines he’s on at bedtime, or it’s still a bit of a hangover from his chest infection.

Diet/fats: This weekend Samuel ketones were 0.8 and 0.6 but this morning they were 1.0 which was very pleasing to see. We also weighed him and his weight has gone back up to what it was when he was admitted (it dipped during the week which was thought to be because the antibiotics were causing loose nappies).

The dietician has been to see us and wants to move Samuel into a tailor made version of the ketogenic diet which should be better for his gut. She has also suggested we increase the speed of his feeds as long feeds may affect ketone levels. She will come back later with a new recipient and feed plan.

The only complication is his saturation levels and whether he needs oxygen. That is what is going to keep us in hospital if the doctors are concerned. The gastro doctor is away today but Sam’s paediatrician is due to visit later so hopefully I will be able to report back later with some good (fingers crossed) news.

TUESDAY

I have some good news for you. We had a pow wow late yesterday with Dr H, Samuel’s paediatrician. We agreed last night to halve Chloral and get nurse just to do spot checks of his sats (instead of leaving him hooked up to the monitor all night) and if Samuel behaves himself then we can go home Tuesday/Today.

Well he did behave and wasn’t put on oxygen at all. Our nurse was fab too (but they’ve all been wonderful I must say).

We now just need the dietician to be on the ball today. We are going to move to the new feed recipe of some ketocal & a new concoction. The dietician said she should have everything ready to start at lunchtime. So if we are freed today, it probably won’t be until late afternoon. Or possibly early evening as we will need to get some bits from pharmacy.

So there is light at the end of the tunnel. But I’m not getting too excited yet. Who knows what the day holds. I’ll save my excitement for when we are actually home and my boy is back where he belongs.

3pm: Well, we are being freed!! The dieticians want to have a play with the new concoction we’ll be giving Samuel. So we’ve agreed that we’ll go home this afternoon BUT will come in as a day patient for a few hours tomorrow to start the new recipe and to weigh the boy. We may also have to come in again on Friday but we are going to see what happens. It’s a pain to have to come back in but knowing that we’ll be able to go home afterwards is fine. And if it helps my little boy then…..

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.

Drugs wean 1

PLAN 1 – wean off Chloral Hydrate completely and begin slow wean off Topiramate.

Well, we met with Dr H this week to discuss the Ketogenic Diet and what our plans are for his drugs. We have always talked about looking at weaning off Topiramate as that and Ketogenic Diet together long-term, may not be good for the kidneys but also Topiramate can cause acidosis in the stomach which can reduce ketones.

But before we reduce Topiramate, Dr H has asked us to start weaning Samuel (and us) off Chloral Hydrate. Now Chloral has been given to Samuel every night at bedtime to help him sleep since he was 8 weeks old. He only has 5mls at bedtime but that certainly seems to be an effective dose. He started having it because he never really had a night and day and Chloral would help him have a good night sleep. Dr H says that it is fine to keep Chloral in our armoury if we should need it, but he doesn’t want Samuel to carry on having it every night, especially as Chloral Hydrate can have a cumulative effect in the body.

So, Wednesday night we started the wean off by halving the dose. Samuel seemed to sleep through the night fine, but the following day was a very different day to his current ‘usual’ days. He was a lot more awake and quite unsettled. Coincidence? Could Samuel be so sensitive to drug changes that it made such a difference to what he was like the following day? I don’t know. But we need to give it more time before we can come to any conclusions. With Samuel one or two days is no way near enough to get a good picture of what’s happening.

So the plan is to carry on weaning off Chloral Hydrate then in two weeks we will start to reduce Topiramate slowly. I’m not sure whether that will be very gradual or whether Dr H will be bold with the pace we reduce it. I’ll keep you posted.

In the past when we weaned Samuel off a drug it was to replace it with another, so not replacing it is a new thing for us. Plus Chloral Hydrate is a really effective drug and has been in our lives so long we are quite nervous about taking him off it. So please wish us luck. x

UPDATE: We got a bit behind on the weaning project because of me being ill so once I was back to normal we decided to speak to the doctor about delaying the wean off Chloral Hydrate and focus first on Topiramate which we saw as the priority. Dr H agreed, so that’s what we are doing. Samuel probably wont be off Topiramate fully until September but at least we have that to look forward to…one drug out of his system was my dream for this diet and we are on the way to getting there!

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: 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:

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.

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