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Tube Feeding The Keto Diet

Untitled document

Written by Alison Maguire

Assistant Co-ordinator – Matthew’s Friends

Dietetic Content approved by Gwyneth Magrath RD – Matthew’s Friends Medical Board

My Background

I am Alison, mum to Niamh.

Niamh is featured in the Matthew’s Friends DVD and her story has been shared by many professionals in the neurological world, as example of success with the ketogenic diet against all odds.

My daughter’s story can be found at www.niamhsjourney.com but in summary Niamh went from 100+ seizures a day to zero in 6 weeks on commencing the Ketogenic diet.

She was totally tube fed, and we administered the diet in liquid only form due to the severe and complex gastro-intestinal problems she regularly experienced as part of her underlying condition.

Many around us had concerns that with all her pre-existing feeding problems whether it would be possible to administer a diet based epilepsy treatment effectively - but we did.
We solved the problems as they arose, and we did not give up without exhausting every possibility.

Read more about Alison HERE

The next few sections explain tube feeding and the liquid ketogenic diet and discuses some of the problems we encountered along our way and how we resolved these.
I have a lot of direct experience in the field of tube feeding the ketogenic diet and am happy to receive any individual questions through alison@matthewsfriends.org

Throughout this section I have  noted any personal experience which you may found useful with this flower symbol.

 

 

BACKGROUND TO TUBE FEEDING & THE KETOGENIC DIET


Many children with different medical problems receive nutrition through a naso-gastric tube (NG) or gastrostomy tube (GT). Children may need these tubes for several reasons:

  • The child may not be able to eat at all; or
  • They may not eat enough to meet their nutritional requirements; or
  • They may not be able to swallow safely, which may eventually lead to them    aspirating feed and getting recurrent chest infections.

The Liquid Ketogenic Diet can be given in exactly the same way as regular liquid feed, using any of the existing tube feeding methods.

There is no evidence to suggest any of the tube feeding routes are more or less effective than another, nor that one produces better ketones than the other on the diet.

In fact, because tube fed children are less likely to be able to “cheat” on the diet, tube fed children are often seen to produce the most remarkable response to the diet of all the groups.

TYPES OF TUBE


Tubes can be divided into two general categories:

Those that are inserted manually through the nose
(naso-gastric tubes)

Those that are inserted surgically through the stomach
(i.e. gastrostomy tubes)


Each of these types of tube have their own advantages and disadvantages and the choice of tube will be very dependent on each child’s individual needs.

More Information on each tube can be found by clicking the button links below:

Naso-gastric & Naso-jejunal Tube Feeding xxxx Gastrostomy Tube Feeding xxxx Jejunal Tube Feeding xxxx Gastro-Jejunal Tube Feeding

 

Our Experience with Tubes

Our daughter started aspirating feeds within the first few months of her life which had resulted in 2 bouts of bronchiolitis and one of pneumonia within 4 months.
She also had a reluctance to feed and would only take tiny amounts which were not sufficient for her to thrive and she was experiencing so many seizures (and was on so many anti-convulsant drugs) that she spent most of her life either fitting or sedated through medication. Both of these were not conducive to oral feeds.

For these reasons we started with Naso-gastric feeding at about 3 months old and added a naso-jejunal tube during times of severe sickness.
We continued this regime until 15months when she had a gastrostomy tube surgically inserted and at that time the naso-jejunal tube was temporarily removed.
At the age of 18 months  we had the naso-jejunal tube re-passed passed (as her reflux remained severe)  to use alongside her gastrostomy however, this naso-jejunal tube just kept coming out (our little angel was able to reverse this tube backwards through her intestine and curl it in knots in her tummy – then throw it up – quite a clever trick we were told!)

After numerous trips to GOSH fluoroscopy department to re-pass this tube under x-ray, we finally decided at the age of 2 ½ to opt for a Gastro-Jejunal tube – This was surgically inserted through her existing gastrostomy stoma and didn’t come out! It was only marginally bigger than her previous gastrostomy and a much more effective way of feeding her.

One port entered the stomach and the other port fed a tube down into the jejunum :-

Niamh was fed her ketogenic feeds through all these routes.

 

FEED DELIVERY METHODS & RATES

Many children whom are tube fed will also have underlying gastro-intestinal problems therefore feeding may not be as straightforward as simply putting in a tube then getting started.

Feeding pumps and other equipment have been devised to provide a variety of methods of giving the feeds so as the delivery rates and volumes can be tailored to each child.

Some children can happily take bolus tube feeds where the full feed is delivered into the tummy over 15-30 minutes, but other children will simply not tolerate large volumes of feed in one go and these children prefer continuous drip feeding.

More Information on each method can be found by clicking the button links below

xxxx

Bolus
Feeds

xxxx Continuous
Drip Feeds
xxxx

 

 

Our Experience with Delivery Methods and Rates

Despite two fundoplication operations (to narrow the top opening to her stomach) and high doses of anti-reflux and anti-inflammatory medications, our daughter still suffered severe reflux, regular gastrisis, and frequent retching, gagging and vomiting.

This was not a consequence of the ketogenic  diet – it was just part of her, and we searched for various ways to minimise these problems.
She had weeks where her gut just worked in reverse (anti-peristalsis) and bile would pass back into her stomach causing her to vomit. During these times she could only take water.

She was not able to tolerate large volumes nor fast rates of feed and her swallow was weak.
Her gastric problems continued throughout her time on the diet – but we were not going to let these get in the way of a life without seizures for her.

We Tried:

  • Bolus Feeds – these were not right for our daughter, She could simply not tolerate more than 100mls of liquid in one go and if this was given too fast it would just come straight back up.
  • Continuous Drip Feeds – This was better for Niamh and we used a feeding pump to deliver it.
  • Rates: We regularly varied her rates & her feeding patterns whilst trying to maintain a stable volume/day.
    • We trialled 24hour continuous feeds, which was accompanied by 24 hour continuous screaming.
    • On the other end of the scale we tried 10 x 30 min feeds – 30 mins on 2 hours off (day and night) which led to very exhausted parents.
    • It goes without saying we tried everything in between

Over time through trial and error, we found what worked best for her was:

  • 1 x 10 hour jejunal feed at 30mls/hr overnight and
  • 4 x 1 hour day feeds via gastrostomy at 100mls/hr (with 3 hour breaks in between.)

Having the G-J tube was incredible helpful as we had two feeding options – Gastrostomy feeding into her Tummy and Jejunal feeding into her Jejunum.

 

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.

Our Experience

We mainly used Ketocal, but did try the modular version of the diet for a time.

We actually saw no difference in ketosis using either method, but unfortunately nor did we see any improvement in stomach symptoms.

As the modular feed was more complicated to make, we reverted back to Ketocal after a few months.

 

 

RATIOS


The aim with the Ketogenic diet is to find a ratio for your child that allows them to produce regular and stable ketones to a level that offers therapeutic relief from seizures.

There is no “right” ratio to achieve this – in fact it is different for every child, so it is very much a matter of trial and error.

It is much easier to get this ratio right when tube feeding as ratio’s can be altered relatively simply and quickly if required.

The usual target ratio is 4:1 which means four parts fat to one part carbohydrate and protein. Some children may go up as high as a 5:1 ratio or as low as a 2:1 ratio - it is different for every child.

If your child obtains good seizure control at a low ratio, there is no need to increase this.

The lower the ratio the less chance you will become overly ketotic and therefore health professionals will try and find the lowest suitable ratio for your child.

Liquid feed ratio’s can be varied by the addition of Calogen (fat) to increase ratio or Maxijul (carbohydrate) to decrease the ratio.


Our Experience

We weaned to up a 4:1 ratio then settled at a 3.7:1 for most of our daughter’s diet. This produced good consistent ketones for her.

 

MAKING UP TUBE FEEDS

Ketocal

In its simplest form, add equal amounts of boiling and cool boiled tap water to get your water at about 50’C.

Mix with Ketocal, whisk (ensuring you include the powder in the baseline edge as this tends to miss the whisk) and put into sealed bottles, allow to cool to room temperature then refrigerate – simple as that!

Our Experience

When you whisk, ensure you include the powder in the baseline edge of the missing jug as this tends to miss the whisk.

Also we used to run the whisked Ketocal through a sieve to ensure we didn’t get any lumps.

When taking out of the fridge for use, we allowed it to stand for half an hour to warm to room temperature rather than actually heating it.

 

Modular feeds

These are a bit more tricky and your dietician will give you a recipe that will be tailored to your child.

Our Experience

Mix the benefibre in water first to dissolve it – otherwise it floats on the top.

Metabolic mineral mix – this causes the feed to separate so we used to mix this separately with water and give in three doses spread throughout the day.

 

GENERAL TROUBLE SHOOTING


Constipation

Can be a problem on the diet due to high fat content and low fibre content, Made worse by the fact that tube fed children tend to be less mobile than orally fed children and also that you may be battling to get the full volume of feeds in per day, so fluid levels may not be high.

Mixing Benefibre into feed – will affect ratio. For serious constipation Phosphate enemas contain no carbohydrate and so are “ketogenic diet friendly” – these need to be prescribed for use in children.

Times of Illness

Finding a method that works when your child is well is one thing. Methods of course have to adapt when your child is ill and during times when our daughter experienced inflammation of her stomach lining and reverse peristalsis we had a number of tricks up our sleeves:

  • During these times we varied concentrations by diluting feeds (unfortunately this meant sacrificing calories but anything was better than nothing we believed)
  • During these times we altered the administration route of day feeds from gastrostomy to jejunostomy which although meant less feed (as the rate was much slower) it also meant that more stayed down.

Separation of Feeds

On the odd occasion we did experience separation of Ketocal (but this was not a common occurrence), however much more common was separation of feed components whilst we were on the modular version of the classical diet.

Because our child was fed at such a slow rate overnight, her feed was hanging for the full 6 hours. During this time it separated out into its individual components – ie. fat and protein+carbohydrate.
On the first occasion, (before we realised this was a problem) our poor little Niamh had received her full 6 hour dose of carbs which had sunk to the bottom of her feeding bag (the feed drained from the bottom) followed by all the fat which was floating on the top. Fortunately her tummy realised this was not right and promptly threw it back rather than causing her to seize due to too much carbohydrate followed by ketoacidosis due to too much fat!

Initially the separation problems meant that one of us had to be up every hour overnight to shake the feeding bag to re-mix the feed but we soon found that a small electrical vibrating toy tucked into the front pocket of her feeding bag and a supersize bag of AA batteries did the trick just as well.

Gas & Trapped Wind


A lot of our children have problems with gas and trapped wind. At best this causes them discomfort and at worst vomiting.

There is no evidence that the Ketogenic Diet makes gas or trapped wind worse, but any problem that leads to feed being thrown back up (when the feed is responsible for seizure control) needs to be addressed.

  • Venting - We found our daughter would have to be vented to release stomach air before each feed. Whist she was being vented we gently rocked her from side to side to ensure the inside of her gastrostomy was free to release any air that may be there.
  • Free Drainage – If you have a child with a gastro-jejunostomy you have the added advantage (and it is a huge advantage) of trying “free drainage”. This is where you attach a “bile bag” onto the gastrostomy port and leave it open so as the stomach can drain air/acid freely. You then feed through the jejunual port.

If you don’t have a gastro-jejunal tube, some children still benefit from being on free drainage via their gastrostomy between feeds or overnight.


Weight Loss


Although not common amongst children on the diet, weight loss can be a problem in some children, particularly if they have underlying gastro-intestinal problems.

Concentrating feeds or increasing volume are the only ways to get extra calories into tube fed children on the ketogenic diet but our daughter was not able to tolerate these attempts.

Weight loss was the reason our daughter came off the diet nearly 3 years later.



In Summary - Our Experience

Our daughters feeding regimes were complex and continually changing but  all of our efforts to make this diet work for her, were worth it and I would have no hesitation in doing it all again tomorrow if in the same situation again.
It can be exhausting and at times incredibly frustrating that things have to be so hard, but Matthews Friends coordinators are there to try and help to make it work.


 


If you have any queries please do not hesitate to contact Alison at the following e-mail:

Alison@matthewsfriends.org


 

 

 

 


 


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