Bank account details Expand To make personal/fundraising donations directly into our charity bank account, please use the following details... Account Name: The Daisy Garland Bank: Barclays, Wimbledon Account Number: 43559157 Sort Code: 20-96-89 When transferring funds into our account, please use your name as a reference so that we can match the funds up to you.
Hannah Queenan - Sheffield Expand "Hello, I am Hannah Queenan and I am delighted to be appointed as Daisy Garland Ketogenic Dietitian at Sheffield Children's Hospital. Following qualification as a dietitian from Queen Margaret University, Edinburgh in 2016 I immediately began my career as a paediatric dietitian. In 2017, I joined the dietetic team at Sheffield Children's Hospital as a specialist Home Enteral Tube Feeding Dietitian. In this role, I worked within a range of specialities including neurology, neurodisability, gastroenterology, respiratory and surgery. I am extremely excited to be joining an excellent ketogenic team. I look forward to developing and growing our service, giving more children the opportunity to try ketogenic diet therapy. I am very grateful The Daisy Garland funded my position, which will allow me to guide and support more families through their ketogenic journey. I am so proud to represent a fantastic charity, making a difference to the lives of children with epilepsy and their family." Hannah has written an article for Complete Nutrition Magazine on 'The Role of a Daisy Garland Ketogenic Dietitian'. Please click on the link below to read more... Complete Nutrition - Hannah Queenan
Hannah Warn, Daisy Garland Dietetic Support Worker - Bristol Expand "Hello, I am Hannah Warn. I am a Daisy Garland Ketogenic Dietetic Support Worker at Bristol Royal Hospital for Children where I work alongside the ketogenic team supporting children and their families through their ketogenic journey. I’m a registered associate nutritionist, a graduate from Bath Spa University. As well as working within the special needs education sector in Bristol Primary schools, I have developed my own practice working one-to-one with clients on nutrition related issues. My interest in the ketogenic diet developed due to having a family member with epilepsy who is on the ketogenic diet. It is amazing to see the benefits diet modification has on quality of life for the entire family. I would like to say a huge thank you to The Daisy Garland for funding my position, making my role within Bristol Children's Hospital possible."
Rati Gill - Reading Expand "Hello, I am Rati Gill and I am a Daisy Garland Ketogenic Dietitian at The Royal Berkshire Hospital in Reading. I have 15 years experience as a dietitian and have specialised in paediatrics since 2013, covering allergies, metabolic disorders, feeding clinic for restrictive eaters and general inpatient based ward work. I have also worked in the Berkshire community as an enteral feeding dietitian for children with complex needs. I am very grateful to The Daisy Garland for giving me the opportunity to develop the ketogenic service at The Royal Berkshire and I look forward to helping as many families as possible."
Marian Devlin - Daisy Garland Keto Nutritionist Expand Marian, a former Daisy Garland Ketogenic Dietitian, brings a wealth of expertise and experience to Daisy's Keto Café, our on-line parent support group. Marian is always on hand to help and encourage, compiling tasty keto recipes, offering enhanced support and guidance for families - old and new - on the ketogenic diet.
Nikki Heather Nikki is the newest recruit to The Daisy Garland, starting in April 2019. Expand Nikki is the first point of contact at The Daisy Garland, where her cheery and caring manner provides help and reassurance at the other end of the phone. Nikki, who joins us from a service-based industry, enjoys nothing more than getting to grips with a tricky task, following through from A to Z - customer satisfaction is always at the top of her list. Nikki looks after our monitor families, takes great delight in making up our Daisy Ketogenic Welcome Boxes, looking after our Daisy Shop, and is always keen to roll up her sleeves when there's a large newsletter mail out. Nikki is also very active in organising our parent support groups and is responsible for keeping our charity resources well stocked and up to date. An enthusiastic fan of stand-up comedy, a cuppa and a Jaffa cake (and so say all of us) Nikki gives her post as Daisy Garland Family Support Assistant 10/10. Of her appointment Nikki said: ‘I love my job because it offers variety and it is extremely rewarding. I look forward to going to work every day! I feel lucky and proud to be part of a close-knit team that provides positive support and care for families in desperate situations. And Flossie, the office dog, is the icing on the cake.’ A keen weekend cyclist Nikki can often be found whizzing around the beautiful lanes surrounding her home in Brixham… sporting her favourite colour, pink! Nikki is a valued member of Team Daisy.
Flossie Puppy Flossie is a much-loved member of The Daisy Garland team. Expand Flossie was born in France and moved to Totnes when she was 6 months old, she is a much-loved member of The Daisy Garland team. Flossie’s favourite haunt is Vire Island, where she enjoys meeting her four-legged chums. Totnes is twinned with the French town of Vire, after which the peninsula on the River Dart is named. Flossie’s pastime activities include walking, chasing squirrels, endless ball games and chewing socks. When relaxing Flossie can always be found on her sheepskin rug with a tasty tripe treat! On her role as canine support for the Daisy Garland team, Flossie said: "Woof.’’
Funding ketogenic dietitians and dietetic support workers Expand We are the leading UK charity funding ketogenic dietitians and dietetic support workers who work in NHS hospitals countrywide, treating thousands of children who suffer from drug-resistant epilepsy with the ketogenic diet. Each full-time dietitian costs c.£61,000 pa. Once a hospital has identified the need for a ketogenic service the consultant responsible contacts us to request funding. We offer pump-prime funding, usually for 2/3 years, on the understanding that a business case evidencing the success of the service is put forward to the hospital Trust to ensure that continued funding will be available when our funding ends. Our funding allows NHS hospitals to develop and expand ketogenic services and our proven success rate in Trust take overs has allowed us to make this medical-led diet widely available, free of charge, to families nationwide. In 2019 we funded our first two Daisy Dietetic Support Workers, who work within ketogenic services ensuring lengthy waiting lists are substantially reduced. Our work in the promotion of the ketogenic diet as a therapy for drug-resistant epilepsy has positively changed the way it is viewed by the medical profession and we are thrilled that it has been wholly embraced by the NHS. Our work in this field has been life-changing and is on-going. What is the ketogenic diet? The Daisy Garland offer an extensive range of invaluable ketogenic resources, free of charge to every family in the UK starting their keto journey. Browse our ketogenic recipes here. Meet Tia, one of the many keto children supported by The Daisy Garland charity:
Funding life-saving monitors Expand The Daisy Garland fund grants for night-time breathing (SATs/epilepsy) monitors for use in the home keeping children safe while they sleep helping reduce the risk of SUDEP (sudden, unexpected death in epilepsy). Read more about SUDEP in Daisy's story. If you live in the UK and your child has been diagnosed with epilepsy, is having regular seizure activity despite taking daily anticonvulsant medication and/or is on the ketogenic diet, please get in touch for more information about our Daisy Garland monitor programme. Monitor grant enquiry form Parent testimonials: Last night Alice was really poorly and we ended up in A&E. When we arrived at the hospital Alice was still connected to her Daisy Garland SATs monitor. The Triage nurse was very impressed and said our monitor was far better than theirs. Thankfully things settled down and after a few hours we were able to come home. The reassurance our Daisy Garland monitor gives is just amazing. Thank you! Because of our Daisy monitor Aryan was saved. He was asleep and the monitor alarmed. I rushed to his room, he was blue around the lips, hands and feet so I dialled 999. When the rescue team arrived they had to insert a tube to open his airways and give him oxygen... I cannot thank you enough for our monitor. Thomas has epilepsy and autism. I worry endlessly about the unthinkable happening to him when he's asleep as his nocturnal seizures leave him face down. Before receiving our monitor he slept in with me and I woke every hour to check on him. There are no words to express the peace of mind our Daisy Garland monitor brings. It's invaluable. Thank you. Because of our Daisy monitor Dante will finally be able to sleep in his own bed and if anything happens during the night we will be made instantly aware. Our Daisy SATs monitor will provide respite for our family too as someone has slept beside Dante every night since his diagnosis waking at regular intervals to check on him. Thank you Daisy Garland for the work you do keeping children with epilepsy safe. Our monitor is an absolute godsend! With a family of three who have DEPDC5 gene related epilepsy and uncontrolled seizures I am so very grateful for our Daisy Garland monitor which has given me peace of mind. I have had years of sleep deprivation and this will help me tremendously. As a mum I have to ensure I look after my health too. My diagnosis of breast cancer has been a real eye opener and a reminder that I am mortal. Our Daisy Garland monitor will be a huge help to me and my family. Thank you. X
Classical ketogenic diet Expand The classical diet is based on a ratio of fat to protein and carbohydrate. Most of the fat in the diet comes from cream, butter, oil and other naturally fatty foods. Each meal has the same balance of fat, protein and carbohydrate and each part needs to be carefully weighed to the nearest gram. This diet is particularly useful for young children and tube-fed children. A normal diet should contain around 50% carbohydrate, 35% fat and 15% protein, but the classical diet contains up to: 90% fat 6% protein 4% carbohydrate
MCT diet Expand This diet includes some fat that occurs naturally in food, as well as some from a supplement of medium chain triglycerides (MCT) fat. This supplement can be mixed into food or milk and is only available on prescription. When the MCT is broken down for energy it produces more ketones and as a result more carbohydrate is allowed than on other ketogenic diets. This diet is used for all children and can be helpful in school age children as the slightly increased carbohydrate allowance means they can include some familiar foods. The MCT diet contains: 75% to 90% fat (30%-60% MCT) 10% protein 10% to 15% carbohydrate.
Modified ketogenic diet (MKD) Expand This diet is similar to the weight loss ‘Dr. Atkins New Diet Revolution’ diet but weight loss is not the goal. It is high in fat and low in carbohydrate but is less restrictive than the traditional ketogenic diet, and has been shown to be well tolerated and an effective therapy for drug-resistant epilepsy. This diet is useful for older children as it can give more flexibility. It focuses on a carbohydrate restriction of 15g to 20g per day, with free protein and fat, although fat needs to be encouraged for good ketosis. The calories are not controlled as in other diets, so it is important that weight and growth are monitored closely. The MKD contains: 65% fat 30% protein 5% carbohydrate.
Low GI treatment (LGIT) Expand The LGIT is a high fat diet similar to the ketogenic diet. It focuses on both the type and amount of carbohydrate consumed. The Glycemic Index (GI) is a measure of the effect of carbohydrates on blood sugar levels. Foods are rated on their GI values ranging from 0 to 100. The LGIT includes foods that have a GI of 50 or lower and typically restrict carbohydrates to around 40g to 60g per day. The digestion of carbohydrate food is also slowed by eating foods containing fat or fibre at the same time. This treatment is normally used in older children as it includes a lot of fibre, which can be challenging for younger children. LGIT contains: 60% fat 30% protein 10% carbohydrate
Emma Gosling - Sheffield Expand "Hello, I am Emma Gosling. I qualified as a dietitian in 2010 and joined the Sheffield Children’s Hospital Nutrition and Dietetic Department in 2014. Prior to my Daisy Garland Ketogenic role, the majority of my paediatric experience has been working within the specialist diabetes and allergy teams. I feel privileged to be a Daisy Garland Ketogenic Dietitian, and work in area where dietary modification can significantly impact a child’s development and a family’s quality of life. I enjoy teaching and empowering families to self-manage the diet. I like that ketogenic diet therapy is an evolving area; the number of research publications has significantly increased over recent years. I am particularly passionate about families receiving safe and evidence-based nutritional information whilst raising the profile of this important dietary therapy. Thank you to The Daisy Garland Charity and supporters for funding this post and providing the opportunity to further develop the Sheffield Children's Hospital Ketogenic Diet service."
Acetazolamide (Diamox) Expand Used to enhance certain other anticonvulsant drugs may also be used for menstrual related seizures and certain episodic disorders. Possible side effects: Weight loss, drowsiness, lack of appetite, pins and needles in hands and feet, depression, joint pains, thirst, increased urine output, headache, fatigue, irritability and dizziness.
Brivaracetam (Briviact) Expand Adjunctive therapy of focal seizures with or without secondary generalisation. Possible side effects: Aggression, anxiety, decreased appetite, constipation, cough, depression, dizziness, drowsiness, fatigue, increased risk of infection, insomnia, irritability, nausea, vertigo and vomiting.
Carbamazepine (Tegretol, Tegretol Retard) Expand Effective against generalised tonic-clonic and partial seizures. May worsen myoclonic and absence seizures. Ineffective against absences. Possible side effects: Blurred vision, double vision, unsteadiness and nausea may occur initially or if the dose it too high. Skin rash if allergic to carbamazepine. Dizziness and headaches.
Clobazam (Frisium) Expand Effective against generalised tonic-clonic and partial seizures, but tolerance develops in about one third of children. Possible side effects: Irritability, fatigue and depression. Drowsiness may occur although this medication is less sedating than clonazepam or diazepam.
Clonazepam (Rivotril) Expand Effective against absences, generalised tonic-clonic and partial seizures, myoclonic seizures, Lennox-Gastaut syndrome, infantile spasms and status epilepticus. Possible side effects: Sedation and drowsiness are fairly common although these may wear off and tolerance (decline in effectiveness with time) tends to develop. Fatigue, aggression and overactive restlessness. Increased respiratory tract secretions.
Diazepam (Stesolid, Diazepam Rectubes) Expand For emergency use only in status epilepticus. Possible side effects: Blurred vision, vertigo, amnesia, drowsiness and unsteadiness.
Ethosuximide (Emeside, Zarontin) Expand Only effective against generalised absences. Possible side effects: Drowsiness, nausea, headache.
Everolimus (Votubia) Expand Adjunctive treatment of refractory partial-onset seizures, with or without secondary generalisation, associated with tuberous sclerosis complex. Possible side effects include: Alopecia, anaemia, decreased appetite, cough, dry mouth, fever, headache, insomnia, nail disorders, nausea, renal impairment, vomiting, weight decrease.
Gabapentin (Neurontin) Expand Recommended for partial seizures, where previous treatment has been ineffective. May worsen myoclonic and/or absence seizures. Possible side effects: Dizziness, headache, double vision, fatigue, drowsiness, unsteadiness and shaky movements.
Lacosamide (Vimpat) Expand Add-on therapy for focal seizures with or without secondary generalisation. Possible side effects: Nausea, vomiting, constipation, wind, dizziness, headache, impaired coordination, drowsiness, tremor, depression, fatigue, abnormal walking, blurred vision, abnormal eye movements, and itching.
Lamotrigine (Lamictal) Expand Effective against Lennox-Gastaut syndrome, absence, partial and generalised tonic-clonic seizures. Possible side effects: Skin rash particularly if rapid dose increase, if allergic to lamotrigine. Double vision, dizziness, drowsiness, headache and flu-like symptoms, if the dose is too high. Possibly insomnia.
Levetiracetam (Keppra) Expand Currently not licensed for children under 16 years; refractory partial seizures. Possible side effects: Dizziness, nausea, behaviour change and sedation.
Nitrazepam Expand Infantile spasms. Possible side effects: Shaky movements, dependence, loss of memory, confusion, muscle weakness.
Oxcarbazepine (Trileptal) Expand Generalised and partial seizures. Possible side effects: Skin rash if allergic to oxcarbazepine. Headache, nausea, double vision, unsteadiness and confusion.
Perampanel (Fycompa) Expand Add-on therapy for focal seizures with or without secondary generalisation. Possible side effects: Dizziness, sleepiness, loss of or increased appetite, aggression, anger, anxiety, confusion, unsteadiness, speech difficulties, balance disorder, irritability, blurred or double vision, vertigo, nausea, back pain, walking difficulty, fatigue, weight gain, and risk of falling. Report severe reactions, such as a skin rash, to your doctor.
Phenobarbital Expand Effective against generalised partial and tonic-clonic seizures. Neonatal seizures and status epilepticus. Possible side effects: Drowsiness may occur initially, sedation and slowing of mental performance may persist. Listlessness, depression, fatigue, rash, tiredness, insomnia and irritability. Hyperactivity, aggression and subtle impairment of mood, memory and learning capacity.
Phenytoin (Epanutin) Expand Effective against partial and generalised tonic-clonic seizures. Status epilepticus. Blood testing is essential when using phenytoin as the relationship between dose and blood level is complex. Possible side effects: Skin rash if allergic to phenytoin. Unsteadiness, drowsiness and slurred speech may occur if too high a dose is used. Coarsening of facial features, overgrowth of gums, acne and growth of excess hair may be problems with prolonged therapy, as can some anaemias (treated with folic acid). Unsteady gait, shaky movements, sedation and rapid involuntary movement of the eye.
Piracetum (Nootropil) Expand Adjunctive treatment of cortical myoclonus. Possible side effects: Anxiety, epilepsy exacerbated, hallucination, headache, movement disorders, weight increase, vertigo.
Pregabalin (Alzain, Axalid, Lecaent, Lyrica, Rewisca) Expand Adjunctive therapy for focal seizures with or without secondary generalisation. Not recommended if tonic, atonic, absence or myoclonic seizures are present. Possible side effects: Infection, ataxia, blurred vision, constipation, double vision, dizziness, drowsiness, fatigue, headache, peripheral edema, tremor, weight gain, visual field loss, accidental injury and xerostomia (dry mouth).
Primidone (Mysoline) Expand Effective against partial and generalised tonic-clonic seizures. Possible side effects: Tiredness, depression, listlessness, fatigue, psychosis, overactive restlessness and irritability.
Rufinamide (Inovelon) Expand Used in combination with other medication and therapy to treat Lennox-Gastaut Syndrome and various other seizure disorders. Possible side effects: Seizures, dizziness, drowsiness, fatigue, headache, nausea, vomiting, status epileticus, ataxia, blurred vision, diplopia (double vision) and skin rash.
Sodium Valproate (Epilim, Epilim Chrono) Expand Effective against absences and generalised tonic-clonic and partial seizures. Possible side effects: Weight gain may occur with increased appetite. Hair loss occurs in some people but this is not usually severe and is usually reversible if the dosage is reduced. Gastric problems, hyperactivity and behaviour problems. Long term use of Sodium Valproate may cause carnitine deficiency. The use of sodium valproate has been associated with increased incidence of polycystic ovaries and menstrual irregularities but needs to be evaluated further. Shaky movements and drowsiness are infrequent side effects. Some liquid versions of Sodium Valproate contain colourings that may cause insomnia. We felt this worth mentioning as it's a topic which has been brought to the attention of The Daisy Garland by a number of families we support whose children became restless and unable to sleep. This was remedied by a change in brand. If you have any concerns at all about food colourings/Sodium Valproate please discuss with your Neurologist. WARNING FOR WOMEN AND GIRLS Sodium Valproate can seriously harm an unborn baby. Always use effective contraception during treatment. If you are thinking about becoming pregnant, or you become pregnant, talk to your doctor straightaway. WARNING From January 2024 Sodium Valproate must not be started in new patients aged under 55 unless two specialists agree that there are no alternative options or that “compelling reasons” mean that the reproductive risks “do not apply,”. https://www.bmj.com/content/383/bmj.p2836.full
Stiripentol Expand Improves the effectiveness of many other anticonvulsants and is indicated as an adjunctive therapy with sodium valproate and clobazam for treating severe myoclonic epilepsy in infancy (SMEI, also know as Dravet syndrome). Possible side effects: Nausea and vomiting are particularly noted when used in combination with sodium valproate.
Tiagabine (Gabitril) Expand May make myoclonic seizures worse. Recommended for partial seizures when previous treatment has been ineffective. Possible side effects: Tremor, concentration difficulties, dizziness, anxiety, depression, fatigue, agitation and jerkiness of limbs.
Topiramate (Topamax) Expand Effective against severe myoclonic epilepsy in infancy. For children over 2 years of age. Recommended in partial and generalised seizures. Possible side effects: Pins and needles in hands and feet and loss of weight, headache, drowsiness. Increased risk of kidney stones. Slowing of mental performance and language may occur but minimised if dose started low and increased slowly. Cases of eye reactions have rarely been associated with topiramate occurring within one month of commencement of treatment.
Vigabatrin (Sabril) Expand First line for infantile spasms. May worsen absences and myoclonic seizures. May be considered for resistant partial seizures if visual fields can be monitored. Possible side effects: Behaviour and mood changes, drowsiness, nausea. Visual field defects have been reported in one in three adults taking this drug in the long term. While taking vigabatrin visual fields should be measured every six months. Psychotic reactions have been reported.