What we do

The Daisy Garland charity was set up in November 2004 to keep Daisy's memory alive and to help other little children like her.

We fund an increasing number of Ketogenic Dietitians who work in National Health Hospitals treating hundreds of children with intractable epilepsy.

We are the only UK charity funding Ketogenic Dietitians - each dietitian costs up to £45,000 per annum. If you think you could help us fund our next Daisy Garland Ketogenic Dietitian go to HOW YOU CAN HELP. Be in touch today.

Epilepsy affects 1 in every 100 children in the UK
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The Daisyometer shows how much we have raised so far to keep our Daisy Garland Ketogenic Dietitians in place for a total of 3 years at the Royal Hospital for Sick Children, Edinburgh.

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Target: £107,100
£65,475 to date

Stories

A Day in the Life of a Daisy Garland Ketogenic Dietitian

A Day in the Life of Tara Randall and Mary-Anne Leung



We arrive at The Evelina Children’s Hospital at 8.45am, when we check our emails and voice-mails.

This morning we have an out-patient clinic so we get everything ready that we need to take with us - patient notes, diet information, samples for families to try.

We have 5 children coming in today. One is coming to clinic for training on the MCT ketogenic diet. This is quite an intensive session which takes approximately 1-1½ hours; the whole family attends, as it’s important that everyone involved in the child’s care understands the diet. It takes about a day to prepare a new ketogenic diet as the diet is calculated for each child individually. We endeavour to ensure that the children following the diet continue to grow and develop well, achieve ketosis and are happy and compliant following the diet.

We are also seeing one of our established keto children and her parents with the Specialist Speech and Language Therapist. This little girl is fed by a gastrostomy and is very aversive to having food by mouth. The speech Therapist gives some strategies to help which involves some teeth cleaning techniques!

We finish clinic between 1 and 2pm and head off to the Atrium for a quick sandwich.

After lunch we work on any adjustments to the diets of the children seen in outpatients. This can include increasing or decreasing the diet’s calorie content, working out new recipes, changing the ratios, devising plans to wean off the diet, etc.

Later in the afternoon we have a meeting with the keto team - Dr Ruth Williams, Paediatric Neurology Consultant and Layla Robinson the Specialist Outreach Epilepsy Nurse - to discuss action points from the morning clinic.

We then do some discharge planning for a baby on the ward who will be going home next week on a ketogenic feed. There’s a lot to do - letters, a phone call to his local dietitian, arrangements for a feed prescription and feed pump plastics. We end our day planning our next Parents Lunch Meeting. These meetings are a regular and important event as it is a good way for us to meet with parents away from Clinic to hear how things are going. At 5pm we tidy our work stations and head off to catch our trains home after a very busy but rewarding day!

A Day in the Life of Nicol Clayton ‘Daisy Garland Dietitian’ at North Bristol NHS Trust

Daisy Garland

Nicol took up her post at Southmead Hospital in Bristol in July 2009.

As a regional referral centre for neurology, Bristol Consultant Neurologists are keen supporters of the ketogenic diet as a treatment for those children whose epilepsy cannot be adequately controlled with medication. However, previously we had to apply for funding for each individual patient referred, which meant that patients often had to wait a long time before funding was agreed, and some patients ultimately had to be turned away. It was therefore a fantastic boost to receive the Daisy Garland funding last year and I was able to fully take on the role of ketogenic dietitian so that we could develop our service and see more patients much quicker!

My day starts by meeting a recently referred patient with their Consultant Neurologist, where we discuss all the possible treatment options and review the progress made so far. As medication is not adequately controlling the seizures and the family are keen to try using the ketogenic diet, I see the family after the medical consultation and we run through the basics of the diet.

This first meeting with a new patient is often about explaining the foundations of the diet – what is a carbohydrate, where is it found in the diet, and which foods would be restricted alongside how much fat is needed on the ketogenic diet and how it is incorporated into the meals. I show parents pictures of typical meals and we look at the child’s current diet and talk through some of the changes that would be required. As the ketogenic diet involves having high levels of fat, there are a number of tests the child has to undergo before starting the diet to make sure that they are medically safe to commence. We go through these and I also explain how the parents would be able to test for ketones once on the diet, both in their child’s blood and urine.

I give the family a starter pack of information and also a book of recipes, containing typical meals and ideas for making ketogenic bread, muffins, pancakes and biscuits. Over the next month the family will be able to try these with their child to find meals and snacks they are happy to eat, which I will build into their individual diet plan.

Back at the office, I write to the child’s local Paediatrician and GP with details of the tests that need to be done, and asking them the best way to contact them as I expect that I will be speaking with them regularly over the coming months. I also notify Sara at the Daisy Garland (with the patient’s consent), who arranges to send the patient a really useful starter pack, containing essential items needed for the diet such as weighing scales, tupperware containers, carbohydrate free sweetener and information booklets, which the patients really appreciate. It’s then on to emails - as we see patients across the region I frequently use email and telephone contact. A patient has sent through to me their blood ketone readings for the week. This patient’s seizures have been really changed by the ketogenic diet, going from several violent seizures a day to one small one a week, and their child is now alert and happier, Mum is really concerned when she noticed that her ketone levels had dropped recently and her seizures were starting to increase. We go through the diet with a fine tooth comb, making sure that no extra carbohydrate has crept in from unknown sources, such as new medications. We make a couple of changes to ensure that the diet is still providing enough energy for growth and contains enough fat and agree to review her closely over the next week. My next email contains lovely news from a family who have just started the diet and are finding it easier than anticipated to manage. In fact the celeriac mash, used to replace potato, is a great success with all the family! They have also sent through a ketogenic recipe for cheesecake, for others to try. As a developing centre we are building up our database of resources, so, after a quick lunch stop, I calculate the nutritional content of the recipe and add this to our recipe book for new patients.

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