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Bringing Up a Child with Diabetes

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Eli Lilly and Company LimitedLilly HousePriestley RoadBasingstokeHampshire RG24 9NLTel: (01256) 315000www.lillydiabetes.co.uk/patientsProvided by Lilly as a support to medicine and patients with diabetes.Developed and printed by Lilly UKHMG00086a September 2011A parent/carer guideBringing Up a Child with Diabetes


A parent/carer guideBringing Up a Child with Diabetes


ContentsMoving Forward ............................ 2What Is Diabetes?. .......................... 4Checking Blood Sugar Levels ................. 7What Is Insulin? ........................... 11All About Insulin Types. ..................... 12Healthy Eating for the Child with Diabetes. ...... 16The Diabetes Care Team .................... 26What Is Hypoglycaemia? .................... 30Diabetes at School ......................... 36Your Child’s Diabetes Care Plan .............. 38Diabetes Away from Home ................... 40Getting Support ........................... 44


Moving ForwardMaybe the diagnosis of diabetes has just been made. Maybeit’s been a part of your child’s life for a while. But when your childhas diabetes, it affects both of you. Keeping up with the latestinformation and tools to care for a child with diabetes is a vitalrole for parents. Not only are there frequent advances in diabetescare, but the needs of your child can change as they get older.Managing diabetes at any age requires skill and attention. Thisbrochure is designed to provide basic information about type 1diabetes (formerly known as insulin dependent diabetes) and offersome practical advice on day-to-day management.Achieve your goal of helping your child lead a healthy life.2


What Is Diabetes?Diabetes is the name given to a group of disorders that causethe body to have trouble regulating blood glucose (blood sugar)levels. While there is still no cure for diabetes, there have beenmajor advances in treatment. Today, the disease can be managedeffectively, allowing kids to stay healthier and liveactive lives.There are two major types of diabetes:Type 1 Diabetestheir breathing may even become laboured and heavy. This may bebecause they have developed a condition known as Diabetic Keto-Acidosis (DKA), which must be treated as an emergency.No one knows what causes type 1 diabetes, and developing itis no ones fault. Scientists suspect that genetic, environmental,and autoimmune factors may be involved. It is most commonlydiagnosed in children, teenagers, and young adults.Type 2 DiabetesFormerly known as “insulin-dependent diabetes,” type 1 diabetesFormerly known as “non insulin dependent diabetes” is uncommonis an autoimmune condition. The immune system’s purposein children, although its prevalence is increasing with the rise ofis to protect the body from viruses, bacteria, and other foreignchildhood obesity. Type 2 diabetes is a bit different. With thissubstances, but in type 1 diabetes it mistakenly attacks the betacondition, the pancreas initially still produces some insulin. Butcells in the pancreas, which produce insulin. Insulin is a hormone theeither it’s not enough insulin to meet the body’s needs or the cellsbody uses to convert food into energy.don’t respond as they should. Some people with type 2 diabetescan manage their blood sugar by losing weight, changing theirThere are warning signs when children develop type 1 diabetes.diet, and exercising. Others need to take medications, which mayThey typically experience symptoms such as extreme thirstiness,include insulin.frequent need to urinate caused by increased sugar in the urine,drowsiness, lethargy, sudden changes in vision, increasedFor all children with diabetes, it’s necessary to balance food intake,appetite, and weight loss, which may be dramatic. If blood glucoseactivity levels, and medications to maintain a healthy blood glucoselevels stay high for a prolonged time your child may becomelevel. Monitoring blood glucose levels is important to understandingunwell. They may have a sweet, fruity odor to their breath, andhow these three things interact.4 5


Some Tips on How to Check Blood Glucose Level• Wash hands in warm water and dry.• Prepare the glucose meter. Each meter works a bitdifferently, so be sure to read the directions. Whether youor your child is using the meter, it’s best to work with adoctor or diabetes nurse to receive training on the routineuse and maintenance of the meter and supplies.• Choose the spot to perform the check, using adifferent finger each time. It’s best to prick the sideof the fingertip, avoiding thumb and index finger.• Follow the instructions that come with the lancet andfinger-pricking device, as each kind is a little different.• Place the finger-pricking device against the finger andpush the button.• Let the hand hang down and then ‘milk’ the palm of thehand down to the finger pricked to get the drop of bloodonto the test strip as per manufacturer’s instructions. Ifthis is a problem you may want to ask your doctor for adifferent kind of device.• Wait for the results and record blood glucose result inyour monitoring diary. Keeping track of blood glucoselevels is important. Work with your diabetes team todetermine the best method for you and your child.Keeping RecordsRecord keeping is essential to managing your child’s diabetes.This helps you understand if your child’s treatment plan is keepingblood glucose levels well controlled. It also allows you to keep trackof what happens to your child’s blood glucose on a daily basis andduring those important events like the school sports day or yourchild’s birthday party.8 9


What Is Insulin?It’s the only hormone in the body that converts food into energy.Like all hormones, it’s produced by a gland, in this case thepancreas. Specifically, insulin is produced by certain cells in thepancreas called “beta” cells. Your body uses insulin to movethe glucose obtained from food from the bloodstream into cellsthroughout the body, which then use the glucose for energy. Whenbeta cells are destroyed, no insulin is produced and the glucosestays in the blood. This results in higher than normal blood glucoselevels, which can cause damage to all the body’s organ systems.That’s why children with type 1 diabetes have to take insulin. Theyeither receive twice daily or multiple injections of insulin throughoutthe day or have it constantly delivered in tiny amounts via an insulinpump. Insulin injections are most commonly given by a needle/pensystem or sometimes vial/syringe system. Insulin helps balancetheir food intake and their physical activity to avoid both high bloodglucose (hyperglycaemia) at times of food intake and low bloodglucose (hypoglycaemia) at times of of physical activity, which canbe dangerous. There are several forms of insulin to replace theinsulin the body can’t make.11


All About Insulin TypesThere are several kinds of manufactured insulin, which start to workat different speeds and last for different amounts of time. Mostpeople use more than one kind of insulin to more closely mimic theway the body’s own insulin would act. Your doctor and nurse willdiscuss with you what insulin treatment is right for your child.Meal Time InsulinRapid-Acting Analogue Insulin — Your healthcare team maysuggest that your child use rapid acting insulin as part of his orher treatment. Rapid-acting insulins can be injected shortly beforemeals or if necessary soon after meals. These insulins have anonset of action of around 15 minutes and last for between 2-5hours. This rapid action is similar to the body’s own insulin actionafter meals.Short-Acting Insulin — called soluble — takes a little longer towork. It is usually injected 30 minutes before a meal, and has itsmaximum or peak activity 2 to 3 hours later. It continues workingfor up to 8 hours.Basal InsulinIntermediate-Acting Insulin — called isophane or NPH — starts towork 1-2 hours after being injected, and can last for about 16 hours.It can be injected in the morning and evening to keep a basal levelof insulin in the body all day and night. This basal level of insulin isnecessary to keep the blood glucose level normal between meals.Isophane insulin may be mixed in the same syringe with rapid orshort-acting insulin if recommended by your healthcare teamLong-Acting Analogue Insulin — these can also be used toprovide a basal level of insulin and last for up to 24 hours. Theseinsulins are usually injected one or two times per day in peoplewith type 1 diabetes.Insulin MixturesThese types of insulin can contain either a short or rapid actinginsulin together with an intermediate acting insulin. This meansthat they have an insulin to help control mealtime blood glucoseas well as a basal insulin to carry on working between meals.Mixtures containing soluble insulin as the meal time insulin areusually injected 15-30 minutes before the meal. Mixtures that havea rapid acting insulin analogue as the meal time insulin are usuallytaken immediately before a meal.12 13


Storage and Handling of InsulinLots of things can affect how well your child’s insulin works, soit’s important to read all the directions that come with it. Here aresome general tips:• Keep unopened insulin in the refrigerator and do not use afterthe expiration date stamped on the label.• Never let insulin freeze. Do not use insulin if it has been frozen.• Insulin should be protected from extreme heat, cold, or light.• Avoid shaking insulin hard or letting it get tossed around. Thiscould cause it to clump and then be less effective.• Most insulin must be thrown out 28 days* after first use, evenif there is insulin remaining, whether it is in a prefilled pen or acartridge.Depending on the type of insulin delivery method being used,here are some additional tips.Reusable Pens and Insulin Cartridges – Once in use, cartridgesmay be used for up to 28 days*. After the cartridge has beeninserted in a pen, the pen should be stored below 30°C andshould not be refrigerated.Prefilled Pens – Once in use, pens may be used for up to 28 days*.Pens in use should be stored below 30°C and should notbe refrigerated.*Some insulins may last longer than 28 days or need to be stored atdifferent temperatures, so please refer to the insulin pack leafletKeep all unopened insulin in your refrigerator.14


Carbohydrates (carbs) are for energy. These foods are the mainsource of energy and a good source of vitamins, minerals, and fibre for ourbodies, but we need insulin to be able to use them properly. Carbohydratefoods are digested to produce glucose; glucose is then used by all the cellsof the body for fuel. Carbohydrate foods are often described as sugars andstarches. Sugars, table sugar, sweets, jams, honey and sugar containingdrinks are all carbohydrate foods. Fruit and milk contain the natural sugars,fructose and lactose, which make them carbohydrate as well. Starchese.g. breads, rice, grains, pasta, potatoes, beans, pulses and flour basedproducts form the main sources of carbohydrate in our diets.Meal TimesThe timings of meals and snacks is very important. Insulin isneeded to move glucose from the blood to all the cells of the body,where it is used for energy. Timing of meals and snacks need torelate to when the insulin is working. Missing meals and snackscan cause the blood glucose to fall too low (hypoglycaemia), soeating at the right times is important for blood glucose control.Eating A Balanced Diet?Food is essential for any child to grow and develop.Each food group has a role to play as part ofa healthy diet, eating a healthy dietmeans your child will grow up witha healthier body.Protein repairs and builds up tissue in the body to keep yourchild strong. Protein foods are needed for growth and repair of tissues,they include meat, fish, eggs, poultry, beans, milk and nuts. Some proteinfoods also contain carbohydrate.Fats and Oils are a source of energy, which we all need.Too much fat in the diet contributes to poor health in the long term as itcontributes to weight gain and possibly high cholesterol which puts theperson more at risk of heart disease and a stroke in the future. Whenusing fats try to use unsaturated fats such as margarine, plant oils, nuts,seeds, avocado rather than saturated fats such as cream, lard, butter. Highfat foods include all butter, margarines and oils, some meats, chocolate,crisps, pastry products, cakes and biscuits. This plate model (opposite) isknown as the ‘balance of good health’. It illustrates the proportion of howmuch you should eat from each of the food groups to achieve a balanceddiet. In other words, you should aim to eat more from the bigger sectionsand less from the smaller ones.Diabetes UK recommends that people with diabetes have a balancedhealthy diet, the same kind that is recommended for the rest of thepopulation – low in fat, low in added sugar and salt, with plenty of fruit andvegetables and each meal including some starchy foods, such as bread,potatoes, cereals, pasta and rice.18If you’re wondering about vitamins and minerals, getting these nutrientsfrom food is the best way for your child to get the benefit of them.19


What About Carb Counting?Carb counting (short for carbohydrate counting) is a system whichis used to help match the foods eaten to short or rapid actinginsulin. The total amount of carbohydrate in a meal or snack directlyinfluences how much the blood glucose rises after food. Knowinghow much carbohydrate food you are eating allows you to calculatethe amount of insulin needed to cover the rise in blood glucose thatwill follow a meal or snack.Counting carbs isn’t the same as eating well; you still need to followa healthy meal plan. If carbohydrate counting is applicable to youthen your registered dietitian will teach you or your child how todo this.Carbs have themost immediate effect on blood sugar levels.20


Eating outThere is no reason why a child with diabetes can’t eat out. Veryoften food in restaurants is higher in fat or sugar but don’t letthat stop you trying new things or having dessert. Eating theoccasional meal that is higher in fat or sugar won’t make muchdifference to your child’s overall diabetes control.There should always be some starchy carbohydrate such as rice,noodles, bread, chapatis, pasta to choose from on the menu.If your child needs more carbohydrates to top up thier bloodglucose levels don’t be afraid to ask for extra bread.WhiteMake sure your child gets the appropriateamount of insulin coverage for every meal.22


Party FoodKids and parties go hand in hand, with a little planning your childwith diabetes will still be able to enjoy parties. It is important toinform the parents that your child has diabetes and that your childcan eat the same as the others. You may want to check what timethe food will be served. If it will be later than their usual mealtime,encourage your child to have a snack before leaving home just tomake sure that their blood glucose levels don’t drop too low.Active parties will mean a risk of low blood glucose levels, so youmay need less insulin or more party food. At less active parties,you may need to provide more healthy snacks as alternatives orgive extra insulin. It is wise to check blood glucose levels beforeand after the party.It’s wiseto check sugar levels before the party starts.24


The Diabetes Care TeamYou and your child alone can’t manage diabetes, and you maywork together with a wide range of health care professionals toachieve the best possible diabetes care. To supplement yourlocal primary care team your child’s specialist diabetes team mayinclude a:Consultant paediatricianThe consultant is the clinical lead who takes the decisions on typeand insulin regimen to start and on other supplementary tests.Paediatric diabetes nurse specialistThese nurses are trained to help you and your child learn aboutdiabetes, and to help you with the practical issues. They’ll teachyou how to give insulin and check blood glucose levels, as well asgive you advice about how to fit diabetes care into your everydaylives. They will also help make adjustments to your child’s insulinregimen.DietitianThese are experts in food and nutrition who can help you and yourchild create a healthy eating plan. See a dietitian who has expertisein diabetes management in clinic to help with the changingnutritional needs of your child as he or she grows, and when his orher daily schedule or diabetes treatment changes.Psychosocial supportChildren and young people with diabetes and their familiesshould be offered timely and ongoing access to mental healthprofessionals because they may experience psychological / socialissues. These may include emotional and behavioral problems(including family conflict), anxiety and depression, eating disordersand conduct disorders, that can impact on the management ofdiabetes and well-being.White26 27


OphthalmologistVision issues are very important with diabetes. Children and youngpeople with type 1 diabetes should be offered screening for:retinopathy annually from the age of 12 years.Chiropodist / PodiatristPeople with diabetes sometimes develop problems with their feet,so your doctor may refer your child to a foot specialist.You’ve got to have a team that works with you.28


What Is Hypoglycaemia?The goal of your child’s diabetes treatment is to keep their bloodglucose level within their target range. When the blood glucose levelis below the target range, your child may experience a conditioncalled hypoglycaemia – also known as low blood glucose.Hypoglycaemia can be caused by several different things:• too much insulin• delayed or missed meal or snack• not enough food, especially carbohydrates• unplanned or strenuous exercise• sometimes there are no obvious causesWhen any of these things happen, insulin and blood glucosebecome out of balance. It usually doesn’t happen in people withoutdiabetes because their bodies know to stop making insulin whentheir blood sugar gets low. But when people take insulin, the insulinkeeps working until it’s used up—whether the blood glucose is lowor not, therefore episodes of hypoglycaemia may occur.31


Symptoms may include dizziness, sweating, shakiness,lightheadedness, irritability, confusion, drowsiness, or lack ofconcentration. Both you and your child should be alert to anysymptoms, test blood glucose levels when in doubt, and have asugary snack or drink with your child at all times to treat low bloodglucose. Examples of treatment for hypoglycaemia include 15grams of a carbohydrate, such as 3-5 glucose tablets, a sugarydrink e.g. lucozade, five sweets e.g. jelly babies, followed by a longacting carbohydrate such as a cereal bar, a sandwich, piece of fruit,biscuits or the next meal if it is due. If left untreated the person mayeventually develop severe hypoglycaemia, become unconscious andwill need to be treated with an injection of glucagon (a hormone thatraises blood glucose levels). That’s why it’s so important for you,your child, and family, friends, teachers, and coaches to understandhypoglycaemia and know how to treat it.Your child is in the care of lots of people besides you throughoutthe day. People who may need to be educated about hypoglycaemiainclude after-school activity leaders, school staff, babysitters,grandparents, and other extended family members and friends.A medical ID bracelet or necklace indicating that your child hasdiabetes and takes insulin is strongly recommended.White32 33


WOvertreatingWhen your child experiences hypoglycaemia and eats or drinkssomething sugary to treat it, the tendency may be to keep eatinguntil they feel better. This can result in raising the blood glucoselevel too high. The best way to treat an episode is to eat ameasured amount of quick carbohydrate (15 grams), followed bya long acting carbohydrate (examples of page 32). Then wait 10to 15 minutes and recheck the blood glucose to see if more isneeded. It may be easier for your child to measure the amount ofcarbohydrate by using glucose tablets instead of sweets or juice.Some kinds of sweets, especially chocolate, are less effectivebecause they contain fat, which slows down the absorption ofsugar into the blood. So chocolate bars, sweet baked goods, andother fat-filled sweets aren’t the best choice.34Your child should always carry something to treat hypoglycaemia.Recommended foods that contain about 15 grams of carbohydrate,the correct amount to treat hypoglycaemia, include:• 3-5 glucose tablets• ½ cup of glucose drink or orange or apple juiceA small snack e.g. 2 digestive biscuits can be taken in addition to theprevious items if recommended.35


Your child’s diabetes needs to be managed 24 hours a day – andthat includes the school day and time in daycare or after-schoolcare. Teachers, school nurses, the headteacher, and otherpersonnel will all play an important role in your child’s diabetes care.Diabetes at SchoolThere may need to be a meeting with everyone involved at yourchild’s school to make sure that everyone knows what they needto do and how to do it. Your diabetes nurse can also provideinformation sheets and pamphlets on the basics of diabetes.This plan should contain the following:• General Information on Diabetes. It should explain whatdiabetes is and how it’s treated; what hyperglycaemia andhypoglycaemia are and how they are treated; and any otherinformation that could help them get a better understandingof diabetes.• Your Child’s Diabetes Care Plan. This outlines your child’sdiabetes treatment: target blood glucose range, insulinschedule, eating plan, and usual blood glucose testing times.It should also include instructions on what to do in specificsituations.• Exercise. Your child should be encouraged to exercise andparticipate in sports. At school, advice should be given toteachers on the effects that exercise will have on your child’sblood glucose. Exercise-induced hypoglycaemia should beprevented by monitoring your child’s blood glucose levelsbefore and after exercise and making appropriate changes ininsulin/food intake.36


WhYour Child’s Diabetes Care PlanGo over the written information that you and your healthcareteam have provided for your child. Answer the school’s questionsabout diabetes and your child’s care. The school may already beexperienced with caring for children with diabetes, but if your childis their first student with diabetes, school staff will probably needdetailed explanations and training.List all the diabetes tasks that will be performed at school. Letthem know which tasks your child can perform without supervision,which tasks need supervision, and which must be done bysomeone at the school. Together with school staff, decide who atthe school will be responsible for doing or supervising each task.Talk with school staff about any necessary accommodations, whichwill vary according to the needs of each child with diabetes.38


Whether it’s a party at a friend’s house or a family holiday, yourchild’s diabetes can still be managed away from home with carefulplanning.Diabetes Away from HomePreparationIt’s a good idea to get up to date advice about diabetes andtravelling before you go on holiday. Travelling across severaltime zones may need some planning before the holiday to allowadjustments to insulin during the journey. Your healthcare team canoffer more advice about the vaccinations you need, timing of yourmedication and the impact that the weather can have on you.Be sure to consult with them when planning your trip as they willbe able to suggest how your child’s day to day routines may beaffected by foreign travel, and what adjustments you may need tomake to have an enjoyable holiday.SuppliesCarry diabetes ID and a letter from your doctor if you are carryinginsulin. Plan to take twice the quantity of medical supplies youwould normally use for your diabetes. If you are travelling to a hotor cold climate this may affect how your insulin and blood glucosemonitor work. Avoid storing insulin in baggage which goes intothe hold, as travelling at altitude may cause the baggage to freeze,which would damage the insulin. Keep with you as hand luggageThere are customised coolbags that can be used to carry insulin.Check with your airline for the most current guidelines for travellingwith medications and supplies.40


SnacksHaving healthy snacks is important on long car or plane trips.Pack a bag with supplies like biscuits, fruit and cereal bars. Besure to check to see what can be brought through security beforeyou get to the airport. Your diabetes team will be able to providea customs/security letter explaining what diabetes supplies andequipment need to be carried. If the flight does serve meals, priorto the flight you can request a special meal for your child.Time Zone ChangesTalk to your child’s doctor about how to adjust your child’s insulinand meal schedule to a new time zone. Generally speaking, a tripeast means a shorter day, requiring less insulin; a trip west makesthe day longer, requiring more insulin. The best practice is to checkyour child’s blood glucose frequently to know if more or less insulinis necessary. Discuss with your diabetes team before you travel.Check Blood Sugar Levels OftenDespite the best intentions, it’s harder to stick to a schedulewhen away from home. By checking blood glucose levels morefrequently, you can adjust insulin appropriately to help keep yourchild’s blood glucose level in the target range.Disposal of Used SuppliesBring along a sharps box, to store used supplies until you candispose of them at home.Recruit Responsible AdultsWhen your child is away from you, whether at a friend’s for a partyor on a school trip, make sure there’s a responsible adult whomthe child feels comfortable with and who can supervise the child’sdiabetes care. Your diabetes team may provide you with specificwritten information specific to your childs needs.Medical IDYour child should always wear or carry a medical ID identifying hisor her diabetes. This is especially important when he or she is notwith the family, on a sleepover or class trip.42


Getting SupportYou’ve already begun the process of managing your child’sdiabetes. While it may seem like an overwhelming amount tolearn right now, in time you’ll find it all becomes second nature.Watching your child grow and take on more responsibility for theirown care will be challenging, but can be gratifying.It’s important to remember you’re not alone. You’ve got family,friends, and an entire team of healthcare providers supportingyou. Ask for help when you need it and don’t forget to take careof yourself.Diabetes WebsitesIf you want to find additional information, the websites below maybe helpful.Diabetes UKwww.diabetes.org.uktelephone: 020 7424 1000Juvenile Diabetes Research Foundation (JDRF)www.jdrf.org.ukemail: info@jdrf.org.uktelephone: 020 7713 2030Children with Diabeteswww.childrenwithdiabetes.comLilly Diabetes patient websitewww.lillydiabetes.co.uk/patients45


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