Lisa Sheridan - Birmingham Expand "Hello, I am Lisa Sheridan. I have worked as a Dietitian since 2011 and in paediatric dietetics since 2014. During this time I have covered general paediatrics, cardiology and neonatal surgery. I started ketogenic dietetics in 2018, which I really enjoy. I am extremely grateful to The Daisy Garland for funding my role at Birmingham Women’s and Children’s Hospital, giving me the opportunity to help children with drug resistant epilepsy reach their full potential."
Zonisamide (Zonegran) Expand Used together with other anticonvulsant medications to treat partial seizures. Possible side effects: Skin rash, breathing difficulties, swelling of face, lips, tongue or throat, anxiety, behaviour changes, insomnia, drowsiness, panic attacks, hyperactivity, depression. Also rapid heart rate, flu symptoms, loss of appetite, loss of balance or co-ordination and dizziness.
Vitamin B6 (Pyridoxine) Expand The diagnosis of pyridoxine dependency should be suspected in every infant with convulsions in the first eighteen months of life. Certain clinical features may be indicative, including: Seizures of unknown origin in a previously normal infant without an abnormal gestational or perinatal history. A history of severe convulsive disorders, in both the family and the individual. The occurrence of long-lasting focal or unilateral seizures, often with partial preservation of consciousness. Irritability, restlessness, crying and vomiting preceding the actual seizure.* If large amounts of B6 alone are given, the need for other B vitamins, particularly vitamin B2 and pantothenic acid, is so increased that harm can be done unless they too are supplied. *Morello, Gaetano. (1996) "Treating Epilepsy Effectively," American Journal of Natural Medicine (October), 14-20.
Absence seizures Expand Absence seizures (petit mal) are common in children and may often be mistaken for daydreaming. During an absence seizure the child experiences a brief interruption of consciousness and becomes unresponsive. They may appear 'blank' or 'staring' usually without any other features, except for a fluttering of the eyelids. These seizures often last for only a couple of seconds and due to their subtle nature may even go unnoticed.
Atonic seizures (drop attacks) Expand Due to a sudden loss of muscle tone, the child may fall suddenly to the ground where there is a risk of injury, but generally recovery is rapid.
Biotin Expand Preliminary studies suggest that biotin supplements may help counteract the biotin-reducing effects of antiepileptic medications. These drugs (e.g., carbamazepine, phenobarbital, phenytoin, primidone, and valproic acid) administered orally to help prevent seizures can significantly decrease available biotin levels in the body and cause biotin deficiency. This is a common side effect of some anticonvulsant medications (occurring in over 80% of patients with epilepsy) and is believed to be caused by the drugs and not the condition (the deficiency only occurs after the drug is taken).* * Higdon, Jane, Drake, Victoria J. and Mock, Donald. Micronutrient Information Center: Biotin. Oregon State University: Linus Pauling Institute. [Online] August 2008. Pharmacological Biotin Supplementation Maintains Biotin Status and Function in Rats Administered Dietary Carbamazepine. Rathman, Sara C., Jesse F. Gregory, III and McMahon, Robert J. [ed.] John W. Suttie. 9, Bethesda: American Society for Nutritional Sciences, September 1, 2003, The Journal of Nutrition, Vol. 133, pp. 2857-2862.
Reading - Rati Gill Expand Hello. My name is Rati Gill. I have been working as a dietitian for 15 years, specialising in paediatrics since September 2013. The areas that I have been covering within the Royal Berkshire Hospital paediatric department are allergies, metabolic disorders, feeding clinic for restrictive eaters, general clinics and general inpatient ward based work. I have also worked in the Berkshire community as an enteral feeding dietitian for children with complex needs. My interest in the ketogenic diet grew after attending one of the keto cookery sessions and shadowing my colleague Nina Brierley in one of her clinics watching her providing exemplary care for her patients and supporting their families. I am very excited joining the team and grateful for Daisy Garland for giving me this opportunity as a ‘Ketogenic Dietitian’. I look forward to helping more families interested in starting the ketogenic diet.
Complex partial seizures Expand These are seizures which affect consciousness. When a larger area of the brain is involved the child may experience some strange sensations depending on which of the brain's four lobes is affected. A complex partial seizure can spread quickly or slowly, and it may cut the child off from the outside world altogether. They will have limited or no memory of the seizure having happened. In temporal lobe seizures, the child may have incredibly powerful emotional experiences, such as fear or terror. Another feeling is of intense deja vu (the feeling that this has all happened before), or conversely, jamais vu, when familiar surroundings and objects appear strange. Children affected may see scenes from their past unfolding before their eyes, have other hallucinations, or forget where they are and what they are doing. They may also smell strong aromas or they may speak unintelligibly or even be unable to speak at all. All these feelings are incredibly intense, much more so than the feelings we experience in our everyday lives. In frontal lobe seizures, there may be twitching or jerking of the arms or legs, or involuntary eye movements. Partial lobe seizures, may cause tingling or pins and needles in some part of the body, for example down one side of the body. With occipital lobe seizures, the child may see flashing lights for a few seconds. A complex partial seizure may also involve automatic behaviour (also known as an automatism) in which the children affected wander around, sometimes continuing with actions they were involved in prior to the seizure starting. They may look purposeful but in fact they have no awareness of their actions, and once the seizure is over, they have no memory of it. Their actions are usually simple and stereotyped (such as smacking their lips or pulling at their clothes). Sometimes the nature of their actions might be more complicated, for example undressing and putting themselves to bed.
Drug-resistant epilepsy Expand In the UK there are over 60,000 children under the age of 16 suffering from epilepsy. More than 18,000 have what is termed as drug-resistant epilepsy, this means their seizures continue in spite of taking appropriate, prescribed medication. In this instance, the ketogenic diet may be the next line of treatment you wish to consider. Be in touch today to request a free Daisy Garland Ketogenic Diet Information Pack. Request a Daisy Garland Ketogenic Information Pack
Calcium Expand Calcium is a very important mineral for the normal functioning of brain cells, and low levels of calcium can cause seizures. A deficiency of magnesium, a mineral that interacts with calcium, may cause low blood calcium and therefore seizures.* *Ibid., 151a
Carnitine Expand Carnitine is not an amino acid in the strictest sense; it's actually related to the B vitamins. But because it has a chemical structure similar to that of amino acids, it is usually grouped with them. It helps transport fatty acids into the mitochondria, part of the cell that contains enzymes responsible for the conversion of food into usable energy. Carnitine deficiency is not uncommon in patients with epilepsy. Research has found carnitine levels to be lowest in patients taking sodium valproate (epilim), but levels may be low in those taking other anticonvulsants, too. This can be a cause of concern because more than one hundred people have died from valproate-induced hepatic (liver) failure.* About 90% of total body carnitine is in muscle tissue, much higher than in the blood, so a normal blood carnitine level reading may be misleading. Symptoms of carnitine deficiency include listlessness, hypoglycemia (low blood sugar), heart failure, and muscle weakness. People low in carnitine benefit from supplementation. Many nutritionalists believe that acetyl-carnitine has better brain penetration than L-carnitine and also enhances brain levels of acetylcholine. *Konig, S., et al. (1994) "Severe Hepatoxity During Valproate Therapy: An Update and Report of Eight New Fatalities," Epilepsia (35) 1005-1015.
Vitamin D Expand Vitamin D is important both in its own right and as helping the absorption of calcium. Anticonvulsant drugs interfere with vitamin D and calcium metabolism in some manner not well understood.* Vitamin D is found in most oily fish and some animal products, especially in cheese and fortified milks. It is important to expose your child to sunlight (about half an hour daily) as it is an excellent source of vitamin D. In one study, supplementing the diet of twenty-three people with epilepsy with vitamin D resulted in a significant decrease in the number of seizures, indicating a possible theraputic effect.** *Flodin, N. W. (1988) Pharmacology of Micronutrients. New York: Alan R. Liss.** Christiansen, C. (1974) "Anticonvulsant Action of Vitamin D," British Medical Journal (ii), 2589.
Febrile convulsions Expand Febrile convulsions can occur in babies and young children when their bodies are unable to cope with a sudden high temperature. A tendency to febrile convulsions often runs in families, and the child commonly grows out of it by the time they are four or five years old.
Gelastic Seizure Expand A gelastic seizure, also known as 'gelastic epilepsy', is a rare type of seizure that involves a sudden burst of energy, usually in the form of laughing. This syndrome usually occurs for no obvious reason and is uncontrollable. It is slightly more common in males than females.
Vitamin E Expand Vitamin E is important for oxygen flow round the body. In a double-blind trial, twenty-four children with epilepsy received vitamin E or a placebo. There was a significant reduction in the number of seizures in ten out of the twelve patients given vitamin E, compared to none of the twelve given a placebo.* This study suggests that adjunctive treatment with vitamin E can be of value for people with difficult to treat epilepsy. At Great Ormond Street Hospital for Sick Children, a study conducted on children found that shortly after specific food allergies had been identified and the allergen(s) removed, migraine headaches and epilepsy disappeared in 78% out of 88% children.** The exact mechanism is unknown, but vitamin E is non-toxic and should perhaps be considered for those whose epilepsy cannot be controlled by conventional treatment. Such therapy might also allow reduction in doses of anticonvulsant medications. *Ogunmekan, A., and P. A. Hwang. (1989) "A Randomized, Double-Blind, Placebo-Controlled Clinical Trial of D-alpha-tocopheryl Acetate (Vitamin E) as Add-On Therapy, for Epilepsy in Children," Epilepsia (30) 84-89. **Marshall, Fiona (1999) Epilepsy: The Natural Way. Boston: Element Books, 78.
Myoclonic seizures Expand Myoclonic seizures involve sudden muscle jerks - for example, the head may suddenly nod, or there may be abrupt jerking of the arms and/or legs. If myoclonic seizures take place in young children they are normally called infantile spasms or salaam attacks. This form of seizure involves the child's whole body as they are thrown forward with their arms up. These often happen within a short time of waking, either on their own or accompanied by other forms of generalised seizures.
Folic Acid Expand Folic acid deficiency appears to play a role in seizure activity, but there is conflicting information. While some anticonvulsants can deplete your body in folic acid, please be aware that folic acid supplementation may cause and increase seizure activity. You must ensure that you discuss any concerns you have on folic acid deficiency with a qualified health practitioner.
Nocturnal seizures Expand Nocturnal epilepsy is a seizure disorder in which seizures occur only while sleeping. To learn more about our Daisy Garland night-time breathing (SATs/epilepsy) monitor programme please click on the link below. Apply for a monitor grant
Magnesium Expand Magnesium deficiency can result in lowered immunity, improper muscle function, and impaired digestion. Without adequate magnesium, your nerves can become ragged and ultra sensitive to pain and production of new protein is impaired. Magnesium requires adequate amounts of vitamin B6 in order to be absorbed by the tissues. (Testing the blood for magnesium levels is not an accurate way to determine tissue and brain levels of magnesium). People with epilepsy have been shown to have significantly lower serum magnesium levels as compared to the general population, with seizure activity correlating with the level of hypomagnesemia. Magnesium has been shown, in uncontrolled trial studies, to be of benefit in the control of seizures. Carl Pfeiffer, M.D., found that a magnesium deficiency induces muscle tremors and convulsive seizures; he reported success in controlling the seizure activity of thirty patients with epilepsy using magnesium.* 30 children with epilepsy experiencing tonic-clonic or absence seizures were given 450mg of magnesium daily, and their anticonvulsant medications were discontinued. 29 reportedly showed significant improvements in seizure control. One 13 year old child who had a ten year history of uncontrollable seizures had shown signs of retardation. After receiving magnesium, his seizures stopped and his mental capacity improved.** *Pfeiffer, Carl. Mental and Elemental Nutrients. New Canaan, CT: Keats, 278, 402-408.*Barnet, L. B. (1959) Journal of Clinical Physiology (I), 25.
Partial/focal seizures Expand Partial (or focal) seizures are restricted to a certain part of the brain, and consciousness may well be affected, but it is not lost. A child's experiences during a seizure will depend on which area of the brain is being affected by seizure activity.
Selenium Expand Since selenium and vitamin E function synergistically, both must be taken to correct a deficiency in either. Because studies have shown that people with epilepsy have low levels of selenium, supplementation with selenium and vitamin E results in fewer seizures. Selenium is an excellent antioxidant. One study found that patients with epilepsy had significantly lower selenium levels than any other group except those with cancer.* * Smith, Op. Cit.
Secondary generalised seizures Expand This is when the seizure spreads over both halves of the brain resulting in the child losing consciousness evolving into a generalised tonic-clonic seizure. This may happen very quickly, or more slowly. If it is slow, the child may have a 'warning' or 'aura'.
Taurine Expand Taurine is an amino acid that helps inhibit neuronal activity and some people with epilepsy are found to be deficient in this. Dr. Atkins also says some patients have discontinued seizure medication while using taurine.* *Atkins, Robert C. (1998) Dr. Atkins' Vita-Nutrient Solution: Nature's Answers to Drugs. New York: Simon & Schuster.
Simple partial seizures Expand Simple partial seizures affect a small area of the brain and the child stays awake throughout. The seizure may be restricted to either rhythmical twitching of one limb or part of a limb, or to unusual tastes or sensations such as pins and needles in a specific part of the body. Simple partial seizures often mark the start of some other form of seizure. They can spread across the whole brain developing into other sorts of seizure and because of this they may be referred to as a 'warning' or 'aura'.
Zinc Expand Zinc plays an important role in blood sugar balance, protein synthesis, brain function, and the immune system, as well as other aspects of health. Children with epilepsy have been found to have significantly lower levels of serum zinc, especially those with West or Lennox-Gastault syndrome. More important, it appears that people with epilepsy may have elevated copper-to-zinc ratio. Seizures may be triggered when zinc levels fall, as in the absence of adequate taurine.* Although the exact role of zinc, or the copper-to-zinc ratio, is not clearly understood, it appears that anticonvulsants may cause zinc deficiency, either by reducing zinc absorption in the intestines or by causing diarrhoea. Therefore, zinc supplementation may be warranted. * Barbeau, A., and J. Donaldson. (1974) "Zinc, Taurine, and Epilepsy," Archives of Neurology (30) 52-58.
Status epilepticus Expand Status epilepticus is classed as a medical emergency. It is when one seizure occurs after another with no recovery period in between. If a child's seizure lasts longer than is normal for them (or for longer than 5 minutes if the normal length of time is not known) an ambulance should be called. A status seizure is potentially an extremely dangerous condition, as the child risks severe brain damage or even death from oxygen shortage to the brain.
Aspartame Expand Aspartame is an artificial sweetener, found in enormous amounts of sugar free products. Please be aware that Aspartame can trigger seizures in some children, due to the fact that it excites the brain cells. Each time I gave Daisy something with this product in she would seize within half an hour of eating/drinking it. So just be aware and please be very careful. Even people who don't have seizure disorders have had seizures after eating foods containing aspartame. More than six hundred commercial airline pilots have reported symptoms, including some reports of tonic-clonic seizures in the cockpit, after eating food containing aspartame.* *Gold, Mark. (1995) "The Bitter Truth About Artificial Sweeteners," Nexus (December-January), 71-75.
SUDEP (Sudden Unexpected Death in Epilepsy) Expand Sudden unexpected death in epilepsy (SUDEP) is when a person with epilepsy dies suddenly and prematurely and no other cause of death is found. Over 1,000 people in the UK die from SUDEP each year. Sadly, we have first hand experience of SUDEP. Our night-time breathing monitor programme helps reduce the risk of SUDEP keeping children safe while they sleep. Click on the link below for more information about our monitor programme. Monitor grant enquiry form
Monosodium glutamate Expand There's a class of chemicals used as food additives that neuroscientists have dubbed excitotoxins, so named because they over stimulate neurons in the brain. This poses a distinct danger, especially to people with epilepsy. The most common excitotoxins are glutamate, found in monosodium glutamate (MSG), and aspartate, found in aspartame products. When the amount of glutamate and aspartate rises above certain levels, too many neurons get excited and fire. Without inhibitory transmitters to balance their firing, they fire and fire until they are damaged or die. This is especially worrisome because a child's developing brain is four times more sensitive to excitoxins than an adult brain.* *Olney, J. W. (1988) "Excitoxic Food Additives: Functional Teratological Aspects, " Progressive Brain Research (18), 283-294.
Todd's paralysis Expand Some people find they have temporary weakness or can’t move part of their body after they’ve had a seizure. This is called Todd’s paresis or Todd’s paralysis. It can last from a few minutes up to 36 hours, before going away.
Justine Urwin, Daisy Garland Dietetic Support Worker - Bristol Expand A big Daisy welcome to Justine Urwin, our newest Daisy Garland Dietetic Support Worker, who has joined the team at Bristol Royal Hospital for Children! Justine is truly brilliant and will be a wonderful support to the busy Bristol team and the lovely families under their care. To read more about Justine and our team of keto dietitians, please click on the link below - OUR DAISY GARLAND KETOGENIC DIETITIANS
Tonic seizures Expand The child's muscles stiffen and he or she may fall to the ground, though there is no jerking. They may injure themselves when they fall to the ground, but generally recovery is quick.
Tonic-clonic seizures Expand Tonic-clonic (grand mal) is the most recognised form of convulsive seizure. Tonic-clonic seizures are where the child may go rigid and fall down, sometimes with an involuntary high cry or shriek. This is caused by air being forced out of the lungs and through the larynx in spasms as the muscles relax and tighten rhythmically, causing the child to jerk in convulsions. This can be very upsetting to watch, as the person may breathe with difficulty due to the fact that the respiratory muscles are also involved in the stiffening process. The child may turn blue in the face, foam at the mouth, bite the inside of the cheek or tongue, grunt or be incontinent. Surprisingly, the child affected is unaware of what is happening, though they may feel tired, confused or have a headache when they come round. There is also a possibility that they may have injured themselves when falling, and will more than likely need to rest in order to recover fully.
Charity Film Awards Expand We are absolutely over the moon to learn that we have reached the shortlist for the prestigious Charity Film Awards! A big Daisy 'Thank You' to everyone who has voted for our film 'The Daisy Garland - Capturing The Essence of our Work' in the Charity Film Awards! We will be sure to keep you posted - please watch this space! 🎉🎉
Working in collaboration with fifteen NHS Trusts 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.£48,000 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. Hospital Trusts benefitting from our ketogenic funding - Royal Hospital for Sick Children, Edinburgh Royal Hospital for Sick Children, Glasgow Leeds Children's Hospital Royal Manchester Children's Hospital Sheffield Children's Hospital Queen's Medical Centre, Nottingham Royal Derby Hospital Birmingham Children's Hospital Oxford Children's Hospital St George's Hospital, London Evelina London Children's Hospital Royal Berkshire Hospital, Reading Bristol Royal Hospital for Children Royal Devon and Exeter Hospital Derriford Hospital, Plymouth As one of the biggest ketogenic diet services in the UK, with an ever-increasing demand, our waiting list for the ketogenic diet has risen significantly. With timely funding from The Daisy Garland for a new dietitian we will be able to reduce the waiting time for children with drug-resistant epilepsy. Dr Shakti Agrawal, Consultant Paediatric Neurologist at Birmingham Women's and Children's Hospital. Thank you for all of your help to date. It has been great to see the effectiveness of The Daisy Garland service develop and meet the needs of patients and families across the region. We are excited we will now be able to build the service even more to meet the increasing demand, and train other dietitians within the team to ensure the service is a success into the future. Mike McLean, Service Lead Paediatric Dietetics, Royal Hospital for Sick Children, Edinburgh.
Points of Light Expand We were extremely proud to receive a Points of Light award from The Prime Minister, Theresa May, given in recognition for our outstanding contribution to the community.
'TEAMDAISY21' Snowdon trek Expand On the hottest August BH weekend on record The Daisy Garland climbed Mount Snowdon to mark what would have been Daisy's 21st year.
Hannah Queenan, Daisy Garland Ketogenic Dietitian - Sheffield Expand A very warm welcome to our newest recruit, Hannah Queenan. Hannah joins our team of Daisy Garland Ketogenic Dietitians working alongside Hannah Taylor and her team at Sheffield Children's Hospital. Hannah's arrival will provide a long awaited enhanced Ketogenic service.
Hannah Warn, Daisy Garland Dietetic Support Worker - Bristol Expand Hannah Warn, Daisy Garland Ketogenic Dietetic Support Worker, joins the keto team at Bristol Children's Hospital, one of the busiest ketogenic services in the UK.
The Daisy Garland Butterfly Ball - London Expand Our Daisy Garland Black-tie Ball, held in celebration of what would have been Daisy's 21st birthday was an evening to remember. 246 guests enjoyed a sparkling evening in the 5-star splendour of the Chelsea harbour Hotel, London. It was the perfect moment to launch our charity film, which received rapturous applause. Our grateful thanks to Will Foxwell for putting the film together for us and to our wonderful Patrons, Jane Asher, Rikki Londesborough and Anne Wadsworth OBE for their valued support in raising awareness of our vital work.