Monday, 26 March 2012

Ketogenic diet: Week 4 -poorly boy


The ketogenic diet: Week Four


KETOGENIC TUBE FEEDS

The initial option for tube fed babies/children is usually Ketocal.

This is a powder formula feed made in a ketogenic ration of 4:1. It is incredibly simple to use and actually is no more difficult that making a baby formula milk.  Various other things can be added to the Ketocal to change the ratio or to ease common symptoms of the diet like constipation.

Any addition to the feed will affect the ratio, so it is very important that if you are giving you child a fibre supplement of any sort that you inform your dietician so as they can adjust your recipe accordingly.

For children that have more complex feeding problems/intolerances there is a modular version of the feed where components are partially digested (or broken down) into their simplest form. This means that the tummy has to work less hard to digest the feed.

Modular feeds are made up of the same basic nutrients as Ketocal but as separate components of fat , carbohydrate , protein ,minerals ,electrolytes and water. There are many types of products which provide these components eg. Maxijul is a carbohydrate powder often used in such feeds.

An experienced dietician will chose the individual products from the range available to make up a feed tailored to each child's individual requirements. Each of the components can be individually manipulated to suit the child's specific needs.

The recipes often have as many as 8 ingredients all need to be carefully weighed and measured.  Making up such a feed requires painstaking accuracy and care.

Week Four: Thursday 15th – Wednesday 21st March (days 22-28)

#Ketogenicdiet tweets for the week:

19th March: #ketogenicdiet day 26 ketones still low-dropping maxijul to 5scoops. Poorly boy here, use medinol to keep temp down-has low carbs #epilepsy

Bit rubbish at the ketogenic tweets this week then!


Basic stats:

Ketone levels: Highest was 2.7 but they are still just below 1 (aiming for between 3 and 5).  Using just 5 scoops of maxijul now to try and get his ketone levels up.  Come on Hugh!!!

xxxxx

Poorly boy this week so bit rubbish at tweeting.  Also explains the very delayed update.  Biggest worry this week was how we’d manage the keto feed if he got admitted to hospital – a distinct possibility on the Monday.  Luckily, with a lot of hard work on our part we managed to keep him at home but the question remains – if (or more likely when) he gets admitted to hospital whilst on the keto diet how will we manage it?  We currently mix up a full days feeds in two 500ml containers which we keep in the fridge until we need them.  Under normal cirmustances, in hospital, the nurses provide us with the Nutrini, pump, giving sets etc – all the paraphernalia needed for a tube feed.  They won’t however be able to provide our ketogenic feeds.  I assume then, that each day before work, Mr. M will have to make up the feeds and drop them to the hospital for them to keep in the fridge.  This is going to be a bit tricky.  Less tricky though, I imagine, than if I had to prepare ‘real’ food.  Still, it’s something I’d not thought of until now.  He’s booked in for his gastrostomy in June, but this is at the Children’s hospital, not the local hospital we normally go to when he is ill.  It is under the consultant and dietician at the Children’s hospital that we are doing the keto diet so I wonder if it will be easier to organise when he is admitted there?  I don’t know – but it is something I will ask the dietician when I am next talking to her.

As an aside, the support from the dieticians is amazing – I speak to them at least twice a week and they are always at the end of the phone if needed.

Apologies for the late update.  Next week’s will be late too I imagine, since I’m taking Cheeky away for a few days.  I did suggest to Mr. M that he write the next update and tweet on my behalf, but if you knew Mr. M you’d realise just how laughable a suggestion that is!  So it’ll all be quiet here for a few days but I’ll update on my return.



Monday, 19 March 2012

Normal? Isn't that just another word for boring?


Just a short and sweet one this week - yes, I know that's unusual for me!  

So as part of Renata's #definenormal bloghop, I'm thinking again about normal.  I considered sharing more insights into my not so normal life with Little H and his myriad of medical mysteries, but since he's unwell at the moment and I have a strict half-hourly schedule of saline nebulisers, oxygen giving, chest-physio-ing, administering medication of one type or another, suctioning, temperature checking, NG feeding, there just isn't the time.  So short and sweet it is.

Normal I have decided is actually just another way of saying boring.  If I have nothing interesting to say about somewhere or someone, I'd say it's/they're 'normal' or 'alright' or 'fine' (imagine these words said with a shrug and you'll get the gist).  Basically - dull, forgettable, not particularly interesting; not even interesting enough to actively like or dislike.  It's/they're not lively, entertaining, funny, clever, artistic, talkative, quiet ...[insert any adjective at all here pretty much]... they're not anything! 

So I'm not really sure I want me or my family to be normal anyway.




SO THERE!!!





This post is written as part of the bloghop #definenormal.  Pop along to Just bring the chocolate to find out more, join in and get a funky badge too, just like the one on the right!  :D 


Saturday, 17 March 2012

Preparing for the future


“You will never know how much you believe something until it is a matter of life and death
C. S. Lewis

I am terrified when I think about the future and try not to look too far ahead.  I catch myself saying ‘please God’ after sentences which is something my Granny used to say and I always found odd.   “I’ll see you next year, please God”, she’d say, knowing that there was every possibility she might not live until the following summer.  It seemed to me such an odd thing to say, I had no concept of death or dying; but now, I can barely look six weeks into the future without adding ‘please God’ at the end of every sentence. 

When I began to realise the extent of H’s physical difficulties I worried about how I’d care for a grown man, unable to do anything for himself.  How would I lift him, wash him, change him?  It came as a cold hard blow to the chest when I discovered that I would be incredibly lucky to be able to care for him as a man.  There is every chance he won’t make it that far.  I mention again the Consultant who spoke to me last week and said, “We neverexpected him to make it this far”.  It is a strange and surreal way to live.  You can’t think about it too much.   You can’t believe it’s true.  I can say words like life-limited and life threatened but deep in my heart I have to believe that it isn’t really going to happen; that the doctors have got it all wrong.  I don’t think I’d make it through the day without convincing myself of that.

I worry about the effect having a brother like Little H has on Cheeky as much as I worry about Little H’s future.  How will he cope?  How can a child possibly cope with something like that?  I spoke to our palliative care nurse about explaining to Cheeky why H spends so much time in hospital.  There are a lot of books out there aimed at siblings of children with Autism or Downs Syndrome but I could find nothing appropriate for an undiagnosed child.  In any case, it wasn’t the ‘label’ (or lackof) that I wanted to explain, it was why H and I were regularly whisked off in the back of an ambulance and Cheeky was hastily bundled into the back of a friend’s car for an unscheduled playdate; why Mummy had to give Little H a ‘special kiss’ (mouth to mouth) and why we used oxygen.  In the end, I made a book myself with photos.  The book the nurse returned with wasn’t what I had expected and led me to question how much I should be preparing Cheeky for what may happen in the future.  It was called ‘Sam and his Special Book’ and is about a child who is life limited and who thinks about what his bedroom might look like in heaven.  I sobbed when I read it; then quickly hid it out of sight.  I’ve been given books by the nurses about preparing an end of life plan and thinking about funerals, Mr. M and I have had to discuss Little H’s ‘resuscitation status’ with our paediatrician, we visit a hospice and I’ve seen forms with the words ‘life limited and life threatened’ written in black and white (there is something so much worse about seeing it written down).  But I have been metaphorically putting my fingers in my ears, closing my eyes and chanting ‘lah lah lah, I can’t hear you!’  But it’s there.  It’s a burden you carry round with you all the time.  It’s a sick feeling in the pit of your stomach, a heaviness in your heart.  It never leaves.  Some days I can almost forget and behave like a ‘normal’ functioning adult.  But other days it sneaks up and grabs me by the throat, leaving me gasping for breath.  Those are the days when I wake and silently pray ‘please still be alive’ or the days when his seizures go on too long and I beg ‘not now, please not now, I’m not ready’.  (Will I ever be ready?  Is anyone ever ready for that?)  But I have been warned; I am aware that this is a possibility.  Cheeky hasn’t.

So what should I do?  Burden him with that knowledge and prepare him that it’s a possibility or avoid telling him and deal with the catastrophic consequences when if it happens?  I don’t know.  He is only three.  Too young to understand the real implications, but the maybe slowly introducing him to these things might be better than a formal discussion when he is older.  He found the book anyway, so the decision to share it with him was taken out of my hands.  I didn’t change the words.  Maybe I should have?  He didn’t ask any really difficult questions, except he seemed a bit confused that the doctors couldn’t make Sam better.  “But doctors can make you better Mum, can’t they?”  He could see the similarities with H - Sam has an NG tube, he swims with his brother “Me and H like swimming at Acorns (the hospice we use)”, he has a special chair with wheels.  We talked about heaven and God and he knows (in as much as a three year old understands) that his Nanna and Granddad are already in heaven.  He seemed to enjoy it as a story but didn’t pick up on the wider implications. 

I’ll hide the book away again now, perhaps more for my own sake than for Cheeky’s.  And maybe we’ll revisit it again at a later stage.  I won’t lie to him and there may be a time when he will begin to wonder and ask those questions.  There may also come a time when it will become apparent that we do need to have that discussion.  We’ve been warned by our Consultant and our palliative care nurse that there will be a time that they will want to have that discussion with us.  But in the meantime, I think I’ll keep my fingers in my ears and remind myself that the doctors don’t know everything.

The last page shows Sam standing (though he’d previously been in a wheelchair) opening a door to an unseen bright light.  Cheeky wanted to know if he was going out to play in the snow.  I smiled and said ‘maybe’.


 You can see an interactive version of the full book here: http://www.paediatric-chaplaincy-network.org/media/online-videos/sam-and-his-special-book/

Wednesday, 14 March 2012

The ketogenic diet: Week Three - prescription panics

Some more Frequently Asked Questions about the ketogenic diet & epilepsy:
Original source: http://site.matthewsfriends.org/uploads/pdf/when-to-consider.pdf

When should the diet be considered?
Approximately 70% of children who develop epilepsy will respond to pharmacologic treatment but about 30% will develop difficult to control seizures or experience ill-effects from antiseizure medication. These are the children that may benefit from dietary therapies. A consensus report from a panel of 26 pediatric epilepsy specialists and dietitians concluded that “the ketogenic diet should be strongly considered in a child who failed two to three anticonvulsant therapies, regardless of age or gender, and particularly in those with symptomatic generalized epilepsies” (Epilepsia 2008). In addition, the group recommends using diet therapy early in a child’s life when diet is easier to control.

Who can be helped by the diet?
Children with epilepsy from infancy through adulthood may be helped by the diet. The published reviews and studies on the diet consistently show that 50-75% of children with difficult to control seizures of all types are helped by the diet. Some children, especially those over the age of 5 years may find the diet difficult to follow due to its strictness. Creative recipes and more liberal ratios have helped to make the diet more enjoyable.

Week Three: Thursday 8th – Wednesday 14th March (days 15-21)

#Ketogenicdiet tweets for the week:

Thursday 8th : Today's the start of week 3 on the #ketogenicdiet. Hoping to reach full feeds by weekend. H tolerating feeds well so far. #epilepsy

Friday 9th: Day 23#ketogenicdiet up to full feeds! :D

Tuesday 13th: #ketogenicdiet day 20, having regular contact with dietician. Reducing maxijul (carbs) to try & increase ketone levels. #epilepsy

Wednesday 14th: #ketogenicdiet day 21: highest ketones so far-2.3. yay! Getting there :D

Ooops – obviously got a bit mixed up with days there!



Basic stats:

Taking all keto feeds now, no more Nutrini (for now anyway). 

Ketone levels: Highest was 2.3 but they are still just below 1 (aiming for between 3 and 5).  Using less maxijul now to try and get his ketone levels up.


Number of seizures this week: 0 (shhh!!!)

xxxxx

Diet still going well.  Seizure free again this week but since his ketones are still so low it can’t really be attributed to the diet. Not sure why he’s having such a good patch recently, but it’s great.  He’s had a few lovely comments this week about how much more alert and vocal he is lately, people are beginning to see a real difference in him.  I don’t know if that is to do with the diet, the lack of seizures or just the next stage in his development.  Either way, it is lovely to hear and see.

I’m mixing the feeds up later in the day now and doing 1litre which covers 24hours worth of feeds (5 bolus feeds via his NG tube).  It needs to be kept in the frudge and I worry that it’ll be cold when I come to feed him but he doesn’t seem to mind.  If I remember, I take it out of the fridge for a wee while before his feed is due, but I usually forget. 

I’ve discovered a clever (well I thought it was) way of ensuring that the ‘super soluble’ (yeah right) maxijul is easier to mix – add the ketocal first.  Oh, was that the obvious solution?!!!  The instructions I was given clearly stated to measure out the scoops of maxijul first then add the ketocal – but this left a load of powder in the bottom that only vigorous shaking and poking and prodding and more shaking – sometimes with disastrous consequences - could dissolve.  So by adding the ketocal into the bottle first, the powder doesn’t get the chance to hide in all the little nooks and crannys and with a quick shake it’s gone.  Ta-dah!  Not just a pretty face, see? (OK, not even a pretty face).

Nutricia delivery is due tomorrow and after the ridiculous palaver we had with the GP sending/not sending/losing/lying about the prescription for the ketocal, I was delighted to find out that the prescription had finally arrived and was safe in the hands of the guys at Nutricia Homeward.  Panic over. 

Not quite. 

The team at Nutricia rang today to say that they’ve run out of ketocal!!!! Aargh. Our dietician is on leave until Monday, I have enough ketocal to last until Saturday, the delivery (minus the ketocal) arrives tomorrow and it’ll be the end of next week at the earliest before they can dispatch the ketocal!!!  Lots of phonecalls and faffing later and Mr. M is going to collect some ketocal from the hospital tomorrow instead.  Phew!


 xxxxx

So that’s it for this week. Fingers crossed we’ll get some ketocal and can get those ketone levels up up up!


Sunday, 11 March 2012

Appreciating what we've got



This isn’t’ the life I expected.  This isn’t the life I had planned.  When I had my two boys just 13 months apart, I had visions of them growing up to be close friends, playing football in the garden, having rough and tumble fights.  I didn’t expect things to turn out like this.

I have always read posts by special needs parents saying ‘I wouldn’t change them for the world’ with a degree of scepticism.  Really?  You wouldn’t change them/your situation?  I often thought it was something people claimed but never really felt.  I’m not quite there yet but I am starting to see the light at the end of this long dark tunnel, I’ve been dragging myself through for the past two years.  I’d take away H’s epilepsy in a heartbeat, don’t get me wrong.  But I’m starting to count my blessings a bit more.  And what’s enlightening is I do feel happy and overjoyed and blessed and I’m not just saying it because I think it’s what  I should say or what people want to hear.

This was the post from @tricy_customer that first got me thinking.  And while it played on my mind all week, I attended an appointment with a consultant of H’s who said;

“Well, none of us ever expected him to make it this far!” 

Sounds a bit harsh I know.  But rather than reduce me to tears, I felt immensely proud of all that H has achieved and against the odds is still here, still smiling and still making progress.  He’s not and never will be your typical child.  But he’ll be two in a couple of weeks and his Consultants didn’t expect that, least of all that he’d be so strong and healthy.  He gets ill of course; sometimes seriously so, and yes, his epilepsy is still life threatening, but that comment opened my eyes to a truth: I have two beautiful, wonderful boys and I am immensely proud of them both.  So proud I could burst.

I am very very lucky.  It’s not so long ago I was told I would never have any children.  Would I rather be here with Little H and all the challenges he presents with us, or back there with all the invasive tests and treatments, praying each month that it was our turn at last?  Do I really need to answer that? 

I watched some of the other Mums and babies at Molly Music this week and I realised that they just didn’t appreciate what they had.  Sorry, that sounds quite scathing and I don’t mean it quite like that.  It’s just I sat there delighted as Little H smiled and felt such joy and pride that he had responded to the music. Genuine heartfelt joy.  You can’t truly appreciate something so simple if you’ve never realised that it is in fact a huge accomplishment.  With Cheeky, I looked towards the next milestone, wondering when he’d make the move from pulling himself up on the seat to letting go and walking.  Did I ever truly appreciate the fact that he had managed to pull himself up to standing in the first place?  I took such achievements for granted.  But now, a smile or a head turned in the direction of a sound, all of these things are huge achievements and I feel blessed to witness them, I feel proud when H achieves them.  I feel blessed that I really can and do take pride in the smallest of things.  I feel lucky.

It is a wonderful feeling.  I feel released almost from the burden I had been carrying. It’s not to say I don’t worry about the future or that I won’t feel sad about the things H won’t be able to do but I feel genuine pleasure in things he can do.  I feel that perhaps now, I am starting to appreciate my little boy for the wonderful, beautiful amazing, strong, smiley, happy delightful little child that he is.  Finally I can see past the challenges and the diagnoses and the medical complexities and just appreciate what I have.

Saturday, 10 March 2012

My (not so) normal changing bag(s)



Remember that feeling when you have a newborn baby and you try to leave the house?  You check and double check the bag – nappies, wipes, nappy bags, change of clothes (x2), bottle of milk etc ...  It seems to take forever to get anywhere and the amount of packing and checking involved is no less than you used to do for a week away.

You thought that was hard?

These are our ESSENTIALS for leaving the house!

From left to right:

Bag 1: Black rucksack style bag - Feeding kit containing ...
Feeding pump
2x giving sets
PH strips
2x 60ml syringes
Bottle of cooled boiled water
500ml container containing H’s ketogenic feed

Bag 2: Long black bag with the patterned Disney store carrier attached – the life saving resuscitation kit, for use during seizures, containing ...
Portable oxygen cylinder (in the long black bag)
Bag and mask (in the Disney bag – the original bag it came in fell apart and I thought I’d use something a bit brighter to carrier it in)
Oxygen mask
Midazolam

Bag 3: The changing bag
nappies
wipes
nappy sacks
change of clothes
extra socks for H’s hands (so he doesn’t pull his NG tube out – but they often get wet as he sucks them so need replacing often)
spare NG tube (just in case he pulls his out)
Tape for fixing NG tube (duoderm, hypafix) & scissors to cut it
antibacterial hand gel – in case preparing feed somewhere they don’t have soap
clobazam –  medication for clusters of seizures, plus 10 ml syringe
Blood testing kit, with ketone strips and blood glucose strips
Seizure management plan – a 3 page detailed care plan which outlines what to do in the event of a seizure, written by his consultant paediatrician, in case we need to call an ambulance or end up at a different hospital.

That’s the bags I take with me everywhere I go – dropping Cheeky to nursery, popping to the shops, hospital appointments or going to a friend’s house.  I have a list by the front door that I check each time I leave the house!  I also have a bag in the boot of the car packed and ready for any emergency hospital admissions which contains clothes & toiletries for us both.  Having it packed in advance means there are no last minute panics when the ambulance arrives.

So there you go!  Little H doesn’t exactly travel light does he?


xxxxx

This post is written as part of the bloghop #definenormal.  Pop along to Just bring the chocolate to find out more, join in and get a funky badge too, just like the one on the right!  :D



Technology: A Special Saturday Post


Happy #specialSaturday everyone!

This week’s theme is Technology

Initially I interpreted this to mean iPads, computers and communication devices that support, teach and allow children with additional needs to learn, develop and interact with others.  Little H doesn’t use any such devices and until recently showed little interest in even the television due to his visual impairment, though through a conversation with @pressuresupport and reading about Mission iPossible, I believe there may actually be programmes on the iPad that Little H CAN access and I intend to take full advantage of it as soon as possible.  So at first, I assumed this week’s theme wasn’t relevant to us.  And then I realised, we use vast amounts of technology with Little H every day.   So here’s a quick run down:

Ketone and blood testing monitor
Twice a day, I test Little H’s ketone levels and blood glucose levels using a monitor similar to this one.  Little H has just started the ketogenic diet and the ketone levels in his blood need to be between 3 and 5.  The hope is that once his ketones reach this level, they will start to have an anti-epileptic effect on his brain. 

Feeding Pump
Little H is fed through an NG (naso-gastric) tube.  A pump like this sets the speed and ensures he receives the required amount. 

Switch adapted toys
The wonderful charity Steps awarded Little H a year’s free membership.  Every 3-4 months he receives a new switch adapted toy on loan.  The switch he uses is very basic and requires minimal pressure on his part.  He can simply move his hand across the switch and it will activate the toy.  Little H has very little control over his movements, often it is difficult ti tell which of his movements are intentional, so a switch like this is perfect for him.  It has finally given him the opportunity to ‘ply’ independently.  The toys he likes are brightly coloured, with noise and flashing lights.  We are hoping that over time he will connect the action of pressing the switch with the reward of the activated toy.  If he can learn the basics of cause and effect in a fun way like this then potentially in the future, he may be able to use a switch device to communicate with us.  Here’s hoping anyway.

SATs monitor
We had a bit of a fight in our hands to get a SATs monitor.  H’s seizures are so subtle that monitors used to detect tonic-clonic seizures were not appropriate.  H simply stops breathing during a seizure and initially an apnoea monitor would detect pauses in his breathing while he slept.  His seizures progressed though and although he still doesn’t breathe, he now has some small subtle movements that fool an apnoea monitor into thinking he is still breathing.  The only reliable way to detect a seizure while we are asleep then is to measure his blood oxygen levels.  Of course, conventionally seizures are not detected in this way and so the NHS weren’t keen ti recommend we use one.  Letters, phone-calls and emails later they agreed, that potentially a SATs monitor was appropriate but then didn’t have one available for us to use.  The Boparan Charitable trust kindly agreed to fund one of these monitors for us and we can now sleep easier at night knowing that if Little H does stop breathing that this monitor will alarm and wake us in time to resuscitate him.  This wonderful piece of technology basically saves H’s life.


This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.

Please join the cause by joining the facebook page -http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
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Wednesday, 7 March 2012

The Ketogenic Diet - Week Two: Mixing feeds & making a mess



Keto Q & A (taken from a handout given to me by the Children’s Hospital)

How does the ketogenic diet work? When fasting or starving your body produces chemicals or ketones, which provide energy.  A high fat and low carbohydrate diet will also cause your body to produce ketones.  These ketones seem to have an antiepileptic effect in some people.  However the exact mechanism is not yet known and there may be more than one way that the diet works. 

How soon will we know if the diet is working? Some children improve within a week while others show a slower response and take up to 3 months to respond.  After this time, if sufficient ketones are being maintained and there have been no beneficial changes, the diet should be stopped.

Week One: Thursday 1st – Wednesday 7th March

#Ketogenicdiet tweets for the week:

Thursday 1st: Start of week 2 on #ketogenicdiet so far so good: up to 2 feeds a day, ketone levels still v.low and 0 seizures (shh don't tell H) #epilepsy

Sunday 4th: Day11 #ketogenicdiet H's ketones up to 1.8 which means we can start testing his blood twice a day. Ideal ketones are between 3-5 #epilepsy

Monday 5th: Day 12 on #ketogenicdiet starting to feel quite confident at doing finger prick blood tests. Good job as i'm doing it twice a day! #epilepsy

Tuesday 6th: #ketogenicdiet day 13 grisly boy. Not sure it's diet related but can't give calpol because of the carbs, medinol instead. #epilepsy

Wednesday 7th: #ketogenicdiet day14 up to 4feeds, attempting to make altogether. ketocal all over kitchen. lid undone when I shook it up. Oops. #epilepsy

Basic stats:

Taking four keto feeds a day out of a possible five.  H has five feeds a day through his NG tube.  His 5th feed is still his normal Nutrini milk.  We are looking to increase to 5 feeds before the weekend hopefully! Woo-hoo!

Ketone levels: Highest was 1.8 but they are mostly fluctuating from 0.4 – 1.4 (aiming for between 3 and 5).  Testing his blood twice a day now, once in the morning and once in the evening.  They are generally higher in the evening.

Number of seizures this week: 9 not great but not altogether unexpected either.  We’d had a good run to be honest.  You can read about the seizure monsterreturning here.

xxxxx

Few seizures this week, but since H isn’t “ketotic” yet (with ketones between 3 and 5) I’m not too disappointed.  It’s not an indicator that the diet isn’t working – as pointed out in the quote above, it can take up to three months for changes to take place.  His ketones have been a bit erratic, but we’re not up to five feeds a day yet so that’s nothing to be too concerned about either.  Finding it easier to test his blood now, which I’m doing twice a day and it doesn’t bother H at all which makes it a lot easier.

Mixing the feeds takes a bit of organisation but I’m getting there I think.  Little H is NG fed; if he was fed orally it would be a lot more complicated weighing ingredients and calculating ratios; as it stands, it’s a bit like mixing baby formula.  And as pointed out by the charity Matthew’sFriends preparing the food is much easier than watching your child have seizures. 

For one feed of 140ml I need to mix:
§  8 scoops of maxijul (liquid carbohydrate)
§  130ml of ketocal 4:1LQ (A nutritionally complete, ready-to-feed ketogenic formula in a 4:1 ratio (fat:carbohydrate + protein) for the dietary management of intractable epilepsy; designed for individuals over the age of one year. A medical food)
§  70ml cooled boiled water

Obviously this makes 200ml in total, of which H uses 140ml for his feed.

I’ve started making the feed first thing in the morning.  He’s been having his Nutrini for the 6:30 am feed.  I freshly fill and boil the kettle first thing in the morning so that it is cooled ready to make the ketgenic feeds up for the day.  When he is up to 5 full feeds a day, this will need to be rearranged as I’d to be up at crazy-o’clock mixing formula for the 6:30 feed.  No thanks!  It keeps for 24 hours in the fridge anyway so I can always make the feeds each night before bed instead. 

The dietician said I could make up 4 (eventually 5) individual feeds (as above) or combine them.  It seems easier to mix up all the feeds for the 24 hours in one go. 

The ‘super’ soluble maxijul isn’t quite as soluble as it claims so that takes a bit of mixing.  Had a bit of a disaster this morning when I tried to mix it by shaking it vigorously but the lid wasn’t on: Ketocal all over the kitchen floor! Nice!

xxxxx

That’s all for this week.  Have a good week.

Monday, 5 March 2012

The ketogenic diet: The story begins – Week One


As many of you may know, Little H has started the ketogenic diet in an attempt to control his epilepsy after 5 different anti-epileptic medications have failed.  I know a number of people are considering starting the diet in the near future with their little ones and others that might be interested, so thought I’d share my experiences in a weekly diary-style format.  For those not familiar with the ketogenic diet here’s a brief outline taken from www.matthewsfriends.org which is an amazing website full of information and support for anyone interested in the diet and finding out more.

“The ketogenic diet, a high fat diet designed to mimic starvation, has been used for the treatment of epilepsy for over eighty years. Although used widely initially, use became less widespread with the development of antiepileptic drugs, but with the awareness that medication may not work, and indeed the profile of their possible side effects, use of the diet has again become prominent. Many of the children with seizures resistant to medication may benefit from the ketogenic diet.” 

Week One: Thursday 23rd – Wednesday 29th February

#Ketogenicdiet tweets for the week:
Thursday 23rd: #epilepsy day 1 #ketogenicdiet very very excited. Bit harder to get blood from H's tiny little fingers than I had anticipated.
Friday 24th: #ketogenicdiet day2. Bit fiddly mixing up the feed. Not difficult though- bit like making baby formula. Easy when yr used to it.
Sunday 26th: #ketogenicdiet day 4 - The ketocal drink smells a bit like cream soda. Doesn't taste too bad but is weird consistency.
Tuesday 28th: #epilepsy #ketogenicdiet day 6: moving up to 2 keto feeds a day. Yay! :D


Basic stats:
Taking two keto feeds a day out of a possible 5 (other feeds still his normal Nutrini, gradually increasing the feeds over the course of the first two weeks)
Ketone levels: 0.1 (aiming for between 3 and 5)
Number of seizures this week: 0    :D

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Was very excited to be starting the diet at last.  We’d had to put it off for a couple of weeks as H was ill and in hospital.  Wasn’t quite as organised as I’d thought and discovered I’d not got my prescription of ketone testing strips yet so there was a mad panic to get that organised.  Our pharmacist was brilliant as usual.  Our Doctors surgery always like to make things that extra little bit complicated and can’t seem to work out how to prescribe the ketocal drinks he needs and then send the prescription to Homeward who will deliver our supply once a month.  It shouldn’t require this many phonecalls or so much work, but that’s our surgery for you! 

Taking blood from Little H’s fingers was slightly more fiddly than I had anticipated.  I’m not squeamish about it and it doesn’t bother him at all, it would just be a lot easier if I had at least two more hands!  It’s just a finger prick and then the blood is used to test his ketone levels and then his blood sugar levels once a day.  When his ketones are high enough I will move to testing twice a day.

The feeds themselves aren’t difficult to make up.  It reminds me of mixing baby formula – it’s easy once you’re in the habit of doing it but when you first start out you have to do everything step by step.  I need cooled boiled water, maxijul powder and his ketocal drink for each feed.  Have to remember to switch the kettle on in advance of making the feed!

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So that’s a snippet from our first week on the ketogenic diet.  I’ll try and post every week and keep you all updated and I’ll get organised and add some photos in too.  Hope at least one person has found that useful and it’s not just me prattling nonsense into the ether.