THIS DOCUMENT IS ONLY A GUIDE.   IF YOU ARE WORRIED ABOUT YOUR HEATH OR YOUR CHILDS HEALTH IN ANYWAY, THEN YOU MUST CALL YOUR KETOGENIC TEAM, LOCAL DOCTOR OR AN AMBULANCE.

MANAGING ILLNESS WHILST ON A KETOGENIC DIETARY THERAPY

Emergency Protocol

Having an agreed emergency protocol will help reduce confusion should a hospital admission be needed or you need to deal with members of the medical profession who are unfamiliar with these types of diet.

Vomiting and / or Diarrhoea

With this type of illness the patient won’t want to eat as much as usual.  However it is essential to ensure that plenty of clear, low carbohydrate fluids are offered and drunk regularly to avoid dehydration. These fluids should be water or the usual sugar free squash used with the diet.

It may happen that meals are not completed or missed altogether, it is therefore essential to monitor the patient for signs of low blood glucose (hypoglycaemia) and / or excess ketosis (hyperketosis) and treat as recommended by your dietitian.

If the symptoms continue for over 24 hours you will need to contact your keto team or local Doctor as it may be the case that a low glucose oral rehydration fluid such as Dioralyte will be required to replenish the body’s electrolyte levels (your keto team will advise you of what is suitable to give on the diet).

Tube Feeds

When a patient with a gastro enteric infection is fed a Ketogenic formula feed given via a gastrostomy or nasogastric tube they may not be able to tolerate their prescribed feed.

The same principles apply to the feed as to the oral diet, it should be stopped and replaced with clear carbohydrate free fluids to avoid dehydration.  Dioralyte may be required if your keto team advise.  Should there be no improvement or the symptoms persist for 24 hours call your keto team or your doctor.  This is especially important if the patient cannot even tolerate clear fluids or tolerate the re-introduction of their tube feed even at half strength.  Medical help in these circumstances is essential.

When the vomiting and / or diarrhoea have stopped, re-introduce food or feed gradually as tolerated by the patient.

 

Ketogenic Meal Replacement (Ketoshake)

Every patient should have a ‘Ketoshake’ recipe calculated by their dietitian to replace a meal for when they are unable for any reason to eat.

There are 2 types

  1. The first is made up of a variety of ingredients but will not contain appropriate amounts of electrolytes or vitamins and minerals. This may be used for no longer than 24 hours.  So is only suitable for short term infections.

 

  1. The second is made up using the tube feed Ketocal as its basis and is therefore nutritionally complete. This can be used for a longer length of time.  However it is not always possible for everyone’s meal to be replaced by Ketocal as not all diet prescriptions will match its formula.

Fluid intake must be monitored and any shortfall in requirements be made up with suitable carbohydrate free clear fluids to ensure hydration.  This is necessary as the Ketoshakes replace the meals not eaten and contributes to some of the fluid required but cannot replace all the water etc normally drunk throughout the day.

Re-introducing Solid Food

When re-introducing meals, start with half the usual amounts for the first day or two, you could also use an ‘all in one’ recipe or make a favourite meal up and mix it all together.  This means you know that every mouthful they have had has been in the correct balance of fat, protein and carbohydrate and if the meal is not completed you can estimate what has not been eaten.  Alternatively you can try offering half a meal (that is half of the prescribed protein, fat and carbohydrate) followed up with half a recipe of the patients Ketoshake a while later.

If the patient does have difficulty in tolerating their full fat meals due to continued vomiting and/or diarrhoea then it may be necessary to only use half the amount of fat prescribed in each meal to start off with and build the fat content back up over the next couple of days.

On the MCT diet, the chances are you will have to reduce the MCT oil / liquigen amount by half or even a quarter and then build back up slowly.

Tube Feeds

When reintroducing gastrostomy or nasogastric ketogenic feeds, initially use a half strength recipe for 24-48 hours, then gradually build up to full strength as tolerated over a few days if this is not tolerated get medical advice

 

Fever (Colds, Viruses etc)

Normal pain killing tablets such Ibuprofen / Paracetamol / Aspirin can be used for adults – read the labels as much as you can regarding carbohydrate content and use the lowest one there is available to you. Maintain fluid levels and if you don’t want to eat then use your ketoshake recipe.

For children use sugar free Paracetamol or suppositories at the correct dose for your child. A suitable preparation is sugar free suspension such as Calpol, available from all chemists. Vick / Olbas oil are good to clear airways, but be careful with these, some families have reported their children not being able to tolerate the very strong varieties – so it may be advisable to use a milder formation. Electric vaporisers have been recommended by some families.

Saline nasal sprays are very useful – especially for little ones.

Maintain an adequate fluid intake by offering sugar free fluids without restriction while the patient is unwell. If the patient will eat as usual, then the diet can be maintained. However you may prefer to use the Ketoshake recipe – this can again be sipped throughout the day.

It is important to contact your local Doctor, as you would normally, if you are worried in any way.

Any other medication, such as antibiotics, should be given as a sugar free preparation if possible.

Constipation

As well as being a common side effect of the Ketogenic diet, after a diarrhoea illness it may be a little while before bowels open on a regular basis, if however, this carries on too long then discuss with your dietitian as some dietary changes may be possible, if this still does not help then your centre will prescribe a suitable medication. Be careful with Lactulose as the sugar / carb content can be quite high and will vary from brand to brand and is no longer recommended for use with the Ketogenic diet. Movicol is commonly used with the Ketogenic Diet.

Low Blood Sugar (Hypoglycaemia)

Ketogenic diets contain very little carbohydrate, so there is therefore a possibility that the blood glucose may go too low.  This is why it is checked when the diet is started and at times of illness or even when food is not being eaten very well.

 

Should the blood glucose fall below 2.5mmols or symptoms of hypoglycaemia present themselves then some carbohydrate food to eat or drink must be given.

For example:

Under 5 years  (5g CHO):

50mls of Fruit Juice

25mls of Lucozade

100mls of Milk

Over 5 years  (10g CHO):

100mls of Fruit Juice

50mls of Lucozade

200mls of Milk

The drink should be given and the blood glucose checked again in half an hour.  If it remains low, give more of the carbohydrate drink/food and get medical help.

High Ketones (Hyper Ketosis)

This is when the blood ketones are too high.

This may be due to a diet change or during an illness.  Should there be symptoms of hyper ketosis and high levels of ketones in the blood, you should treat this in the same way as you would low blood glucose (Hypoglycaemia).  Give them the same sort of carbohydrate foods/drink as previously listed.

If you or your child is showing high blood ketones but with no symptoms of hyper ketosis, check the blood ketones again 1 hour later and only treat if they remain high.  If the blood ketones remain high, give more carbohydrate and get medical help.

Symptoms of Hypoglycaemia and Hyper Ketosis

Hypoglycaemia or low blood glucose and Hyper Ketosis have similar symptoms, apart from blood test results:

Lethargy                     Fatigue                        Irritability

There are also differences:

Hypoglycaemia:

  • Dizziness
  • Aggressive Behaviour
  • Sweating
  • Pallor
  • Confused
  • Cold and clammy

Hyper Ketosis:

  • Facial Flushing
  • Vomiting
  • Rapid Breathing
  • Panting

Seizures

Worsening of seizures is common during periods of illness. Check the ketones and contact your local team.

Emergency rescue treatment can be given as normal e.g. rectal diazepam or buccal midazolam.

If taken to hospital and intravenous fluids required, a glucose solution should be avoided (unless in exceptional circumstances). Normal saline and other types of infusion can be used and the local doctors should ask the nurses to monitor blood sugar to check that it does not go too low.

Intravenous Fluids

Should the patient not tolerate clear fluids they need to have medical advice and attention as intravenous fluids may be required.  When intravenous fluids are needed, appropriate carbohydrate free infusions will be used as prescribed by the medical team.  The Doctors and nurses should monitor the patient’s blood sugar to check that it does not go too low and blood ketones to ensure they do not rise to high.  In both cases this must be treated appropriately.

Remember:

All medications that are given must be sugar and carbohydrate free where ever possible.

Sugar free does not necessarily mean carbohydrate free.

Check products regularly as manufacturers change their formulations at times.

When a new medication is necessary, and this means an increase/decrease in carbohydrate, the diet may need to be adjusted to accommodate the change.