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…..

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Meeting with Dr H

This coming week we have an appointment with Samuel’s pediatrician and we have a lot to discuss regarding the Ketogenic Diet.

We are still feeling that it is working and certainly making a difference to Samuel’s epilepsy but we have noticed a slight increase in seizure activity in the evening (but still amazing compared to before) and he is far more sleepy during the day. Also his ketones are still really low. Really low. We seem to be stuck between 1.4 and 1.6 and despite changing the recipe (Samuel is fed a special formula through his gastrostomy, so I’m referring to changing the concentration of the feed) we seem to be stuck.

When I last spoke to Samuel’s doctor and mentioned about the excessive sleepiness (with the diet working, it is now like he is a bit over medicated), he suggested that when we come into clinic for our appointment we discuss reducing Clobazam. Now we love Clobazam. It bloody works. It is a very strong drug (it is sister to Midazolam, Sam’s emergency drug) and can cause extra drowsiness. We are nervous about reducing this medicine but do see that it could really help us have more awake time with Samuel.

But the drug I do want to discuss with Dr H is Topiramate. Now we do have a fondness for Topiramate as it basically got Samuel home from NICU. But he has been on it a long time and he is on quite a high dose (14mls twice a day) and I think Clobazam and his other drug Vigabatrin have superceded it. Last weekend, while frustrated with Samuel’s ketones and no one around at the hospital to speak to, we phoned Matthew’s Friends. We were lucky enough to speak to Emma, Matthew’s Mum who advised that Topiramate can cause acidosis in the stomach which can reduce ketone levels. Well isn’t that something? So that will be high on my list to discuss with Dr H.

Although his brain and body does seem to be responding to the diet, I’m not sure what it is doing with his ketones but I really want to see them increase and increase soon as it’s the one nagging thing about the diet. We need Samuel’s ketones to remain at a stable level between 2 and 5. Even when they have been high (they have been above 2 a few times), it hasn’t been consistent and they’ve come back down again.

Do I dare wonder what his epilepsy would be like when his ketones are at a stable high level? That is just too exciting to think about. But in the meantime, maybe this is just Samuel changing the rules again. I just wish he’d let us in on the new rules!

Celebrate: The diet dream has come true

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

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

So here goes,

the ketogenic diet is working.

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

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

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

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

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

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

More information: If you want to find out more, please have a look at Samuel’s Ketogenic journey and you can also read a round-up of all my blog posts about Samuel’s Ketogenic adventures. Matthewsfriends.org is a fantastic resource full of really useful information and case studies about the Ketogenic Diet (and explain things much better than I do!).

This post is part of the Celebrate Blogging Challenge. This world of special needs and disabilities has many rocky roads, we will find ourselves on many rollercoasters along the way. But, there are a lot of positives. Through our adventures so far, we have met a lot of amazing, supportive people. It has made us stronger. We have learned to look at the world through new, wider eyes and find ourselves celebrating what to others may seem such a small achievement but to us, it’s the world. It’s a tough world, but there is so much to celebrate. Our children. So please join me each week and post about what there is to celebrate in your world during the past week. I’m looking forward to reading your posts and celebrating with you.

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

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My previous ‘Celebrate’ blog hop posts:

 Tricky Customer Celebrate Blog Hop

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