Type 1 diabetes diagnosis in a child is overwhelming for the parents. Besides the health concerns, there’s a lot to learn and plenty of lifestyle changes to incorporate at home. Checking blood sugar, cooking healthy meals, being prepared for hypoglycemia, and dealing with feelings, are only the tip of the iceberg.
But you're not alone. Nearly 15,000 children are diagnosed with type 1 diabetes every year in the United States. With the right tools and good practices, as well as strong support, type 1 kids can have a perfectly safe and healthy childhood.
Here’s an in-depth guide for parents whose child has recently been diagnosed with diabetes.
Know the Warning Signs of Type 1 Diabetes in Children
Accompanying your kid through his or her childhood with diabetes first requires one to be able to identify the signs and symptoms of diabetes in children. As a parent of a diabetic child, you especially need to be aware of the signs that may warn you something is wrong. Basically, when your child has type 1 diabetes, two main scenarios are causes for concern:
Hypoglycemia is when the blood sugar level is too low (below 70mg/dL). It can suddenly happen for several reasons including too much insulin, too little carbohydrates, physical activity, and others.
The symptoms of hypoglycemia include shakiness, sweating, headache, looking pale, hunger, fast heartbeat, irritability, dizziness, fatigue, lack of concentration, tingling in the mouth, and others. When blood sugar is very low, symptoms may worsen and your child can become confused, lack coordination, have difficulty talking, have blurry vision, or even lose consciousness and have seizures in the most extreme cases.
Most of the time, your child’s blood sugar will increase and symptoms will disappear after taking fast-acting sugar (juice, candies, glucose tablets, fruits, etc.). If your kid does not respond to treatment and the glycemia does not go back into the normal range, you must rapidly seek medical attention.
Hyperglycemia is the opposite scenario, where blood sugar is too high (above 180 mg/dL). It can happen if your type 1 diabetic child has missed a dose of insulin, has had too many carbohydrates, has an infection or is ill, does less sport than usual, is under a lot of stress or emotional changes, or others.
Related article: What happens if you miss a dose of insulin?
Hyperglycemia symptoms vary and not every child can notice them. They include thirst, fruity-smelling breath, headaches, frequent urination, dry mouth, blurred vision, shortness of breath, weakness, and others. Severe hyperglycemia or hyperglycemia that’s been going on for too long may lead to severe symptoms like abdominal pain, nausea, vomiting, and even confusion and loss of consciousness in the worst cases.
The endocrinologist who oversees your child’s diabetes treatment should have provided you with a hyperglycemia protocol. Most of the time, bolusing fast-acting insulin or increasing basal insulin is enough to lower blood glucose. But severe hyperglycemia or hyperglycemia with ketones may require immediate medical care.
Making sure you recognize the signs of both hypoglycemia and hyperglycemia in your child is the very first and one of the most important parts of parenting a safe childhood with diabetes.
Related article: What to do if you run out of insulin?
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What does Childhood Diabetes Involve?
A child’s diabetes diagnosis brings major changes for every member of the family. It requires medical attention, daily management tasks, new vocabulary, new devices, constant alertness, healthy meal preps, physical exercise, emotional support, and more.
But while it may seem overwhelming for both the child and the parents at first, a safe, fun, and happy childhood with diabetes is highly possible! Here are a few pieces of advice to best accompany your kids through a safe and healthy diabetic childhood:
Don’t miss your child’s medical appointments
Caring for a diabetic child means a lot of medical appointments. Your kid has to regularly meet his diabetes nurse, GP, and endocrinologist, as well as have regular blood check-ups and pick up insulin and diabetic supplies at the pharmacy monthly or even weekly sometimes.
Type 1 diabetes is a life-long chronic disease. But if well managed, it should not affect your child’s health or life expectancy. A few months after the diagnosis, you may feel like you and your kid are mastering diabetes management and you can do it alone. That’s fantastic. But it does not mean you should skip medical appointments.
The diabetes care team is here to supervise but not only. The endocrinologist and diabetes nurses are here to support the family, make sure your child benefits from the best and newest treatments, readjust the insulin dosages and check if there aren’t any signs of complications.
As a parent, following a great diabetes care plan and frequently seeing your child's medical team is key to a long and healthy life with diabetes.
Be familiar with insulin pumps and diabetic supplies
Diabetes is a whole new world to discover. At first, you may feel completely lost when your child’s doctor talks about catheters, tubbing, infusion sites, CGMs, lancets, strips, reservoirs, auto-injectors, cartridges, priming, basal insulin, boluses, and dozens of other odd words you’ve never heard of before.
You and your child will need to familiarize yourselves with diabetes vocabulary and supplies. Do not hesitate to ask the doctors or nurses when you don't understand. And don’t worry, you’ll quickly pick up and become a diabetes expert, trust me!
Depending on how old your child is, you may have to help him or her with the daily diabetes tasks. That includes checking blood sugar (with a continuous blood glucose monitor – CGM or a simple pricking glucose meter), installing, changing, and manipulating an insulin pump, injecting with syringes or autoinjector pens, using ketone urine strips, and much more.
Related article: Can you swim or shower with an insulin pump?
Check your kid’s blood sugar often
Accompanying your type 1 child through a healthy childhood implies checking his or her blood sugar level often (very often!). As a caring parent, your kid’s blood sugar levels will become an obsession. It's normal, and it's great. Although, be careful not to put too much pressure on yourself or your child.
Diabetes requires constant blood sugar control. Depending on how old your type 1 child is and what glycemic control device is used, you may need to help him or her check his blood sugar.
Usually, kids with type 1 diabetes are advised to check their blood sugar at least four times a day. Ideally, blood sugar should be checked before and after every meal, plus whenever there’s a sign of hypoglycemia or hyperglycemia. If your child uses a continuous blood glucose monitor, checking blood sugar is much simpler, quicker, and less invasive than with a pricking device.
Sometimes, parents of type 1 diabetic children wake up in the middle of the night to monitor their kid's blood glucose. It’s necessary mostly when the child’s bedtime glycemia is on the edge of being too low or too high, or when the child is ill for example.
Related article: How to comfortably sleep with an insulin pump?
How Can Parents Best Accompany a Type 1 Diabetic Kid?
Besides the above purely medical support, diabetes also requires lifestyle changes and strong emotional support. A healthy and stress-free childhood with diabetes goes hand in hand with emergency preparedness, a nutritional diet, physical activities, and solid support from your child's entourage.
Always be prepared for hypoglycemia
There’s nothing more stressful for a child to see his or her parents panicking. Parents are supposed to be the ones who reassure them. But you never know when hypoglycemia is going to occur, and that situation is by nature stressful. So, it's good practice to always be prepared for your child’s next low blood sugar event.
Whether you’re running quick errands at the nearby store, picking them up at school, driving to the pharmacy, going to the beach, or spending a day at Disneyland, always carry fast-acting sugar on you (not in the car). In case your child is having a hypoglycemic episode away from home, you’ll be rapidly able to help and act calmly without causing additional stress.
In the same manner, if your kid is spending the day without you, at school, at a friend’s house, or anywhere else, make sure to pack fast-acting sugar in his or her bag and inform the adult in charge.
Remember, fast-acting sugar is conveniently found in fruit juice, apple sauce pouches, soda, or glucose tablets for example.
Use a Silicone Insulin Vial Protector to Protect your Kids' vials of insulin!
Home-cook healthy meals for your diabetic kids
Of course, food plays a huge role in your child’s diabetes management, and a healthy childhood with diabetes demands nutritionally balanced meals.
There are no prohibited foods for type 1 diabetic children and there’s no such thing as a “diabetic diet for kids”. But everything your child eats may impact blood glucose. So, there are many things to consider before preparing meals, including carb-counting. It’s all about nutrition, balance, and bolus!
As a rule of thumb, avoid industrially prepared foods and always prefer home-cooked meals with fresh ingredients. Try to stay away from fast food as much as possible. Control snacking in between meals or add an insulin bolus if needed. Make sure your kid gets enough fruits and vegetables, as well as proteins and carbohydrates (which should count for about 50-60% of your child’s daily calories).
While your child’s daily meals must be nutritionally balanced, allowing some exceptions is also essential. Remember that before being diabetic, your child is a kid. As such, he or she must be able to enjoy friends’ birthday cakes, popcorn movie nights, and burger parties occasionally. But don’t forget the extra bolus!
If you have difficulties balancing your child’s diet, ask for a doctor's or dietitian's advice. Meal planning for diabetic children is not easy and it's a skill that takes time to learn. But you'll soon become a carb-counting expert!
Related article: Sugar-free diabetic snack ideas for happy type 1 kids!
Promote children’s physical exercise
Physical exercise is crucial for good diabetes management and blood sugar control. While most children are physically active, promoting your kid's activity is even more essential with type 1 diabetes.
Being active helps control blood sugar by increasing insulin sensitivity and has a direct impact on a diabetic’s overall health. Sports and physical exercise also help boost your child's mood, relieve diabetes-induced stress, and build your child's self-confidence.
As the parent of a type 1 diabetic kid, help him or her find activities that he or she likes. Sign your child up for sports and summer camps. After school and during the weekends, promote outdoor family activities as much as possible like bike riding, jumping rope, playing ball in the backyard, walking the dog, going on adventures, etc.
Though regular physical activity is essential, there are some precautions to take with diabetic children. Exercise may cause hypoglycemia so it's important to check blood sugar levels before, during, and after the activity.
Make sure that your kid has had enough carbohydrates to eat before sport, and always pack fast-acting sugar and a hypo kit in his or her sports bag. If your kid is engaged in organized activities, always inform the coach about diabetes, and teach them how to act in case of hypoglycemia. Some parents of type 1 kids ask their children to wear a medical identification bracelet, which can be a great safety in case something happens.
Physical activity may be scary when your child has diabetes. But both the health and mental benefits greatly outweigh the risks.
Related article: Tips for hiking with diabetes
Team up with the school staff
Diabetes does not take any break and your kid will need to manage his condition at school as much as he or she does at home. Depending on how old your child is, the school staff may be of great help.
In the United States, the IEP (individualized educational plan) and the 504 plan are intended to legally guarantee that every child with a disability attends elementary and secondary schools with the specialized instruction and services he or she may need.
Teaming up with school staff is crucial to guarantee that your kid is safe and happy at school. Each year, work with both the school and your kid’s medical team to set up a 504 plan for students with diabetes.
Meet with the school nurse personally. She will be the main staff responsible for your kid's diabetes care. Talk to your kid's teachers and brief them about diabetes management, warning signs of hypoglycemia, as well as the special needs or behaviors your child may have during a class. You may also want to meet with the cafeteria staff and talk about the menus.
Support your diabetic child emotionally
Diabetes is hard for kids. Besides all the medical issues, this chronic disease brings its own share of emotional ones. Young diabetic kids often feel "different", alone, and isolated from friends and classmates. Later, teenagers with type 1 diabetes may go through a dangerous denial period where they pretend not to have diabetes and skip their medical treatments.
Kids with type 1 diabetes or any other chronic disease often go through emotional phases of sadness, guilt, anger, frustration, fear, anxiety, and even depression sometimes. While these feelings are normal and understandable, parents must make sure they’re only temporary.
Having a child with diabetes demands recognizing your child's feelings and dealing with them. Ask, acknowledge, and talk about it with your kid. If you feel incapable or unprepared to help your child pass through a difficult emotional time, do not hesitate to ask for professional help. Many diabetics resort to the help of a psychologist in the course of their life-long disease.
Treating your kid like a normal kid is absolutely essential so he or she does not feel disabled or different. Do normal things, travel with diabetes, go on adventures and camping trips, etc. Make it so that diabetes adapts itself to your lifestyle, and not the other way around.
Where to Find Support for Parents and Diabetic Kids?
Finding out your child has diabetes is scary and most parents feel completely lost at first, with so many questions, concerns, and doubts about their child's health. If you feel devastated or overwhelmed, do not stay alone. Diabetes affects hundreds of thousands of children in the United States, and families usually stick together and support each other.
Diabetes camps for kids & families
Diabetes camps are all over the States, and they're an amazing way to connect with people who are going through the same difficulties. Usually organized by non-profit organizations, including the American Diabetes Association, diabetes camps center their activities and workshops around diabetes management. But they’re also about fun, friends, bonfire, and a great deal of experiences!
There are different types of diabetes camps. Whether you’re looking for a day camp or a summer camp for your type 1 kid to go have fun safely, or a weekend diabetes camp for your entire family, you’ll find one that suits your expectations.
Diabetes camps are a great way to find professional and peer-to-peer support, both for the parents and the children.
Related article: All you need to know about diabetes camps for kids!
Type 1 parents support groups
Type 1 parents' support groups are usually moderated by a type 1 parent himself or a diabetes professional. Parents of type 1 diabetic kids gather to exchange experiences, ask questions, share their fears and worries, and get advice from the other ones.
You can join type 1 parents support groups online, on Facebook for example, or in person. The Juvenile Diabetes Research Foundation (JDRF) has put up a list of online type 1 parents' groups. You can also ask your diabetes medical care team if they know about any support groups in your area.
Type 1 diabetes is a life-long chronic disease which diagnosis brings a true challenge to the entire family. But with good medical care, thorough management, and great support, type 1 kids can live as healthy and as happy as any other kids.
Please feel free to share your experiences, worries, and advice below!