Type 1 Diabetes: Learning to Manage a Lifelong Condition
Type 1 diabetes (T1D) is a chronic autoimmune condition that attacks the insulin-making cells in the pancreas. Insulin helps blood sugar enter the cells in your body for use as energy, according to the (CDC). Without insulin, blood sugar cannot penetrate your cells. Instead, it builds up in your bloodstream. Uncontrolled high blood sugar can damage many parts of your body, including your heart and blood vessels, eyes, kidneys, nerves, gums and gastrointestinal tract.听
Once called juvenile diabetes, T1D usually begins in childhood or adolescence, but it can actually show up at any age. While Type 2 diabetes (T2D) tends to be lifestyle-related and develops over time, T1D is believed to be genetic in origin. You can鈥檛 get it from eating too many sweets.听听
See your doctor and have your blood sugar tested if you have any of the following symptoms:听
- Frequent urination, especially at night听
- Unusual thirst听
- Weight loss (without trying)听
- Hunger听
- Blurry vision听
- Numbness or tingling in the hands or feet听
- Fatigue听
- Very dry skin听
- Sores that heal slowly听
- More infections than usual听
- Nausea, vomiting or stomach pain听
If your child has T1D鈥攅specially a young child鈥攜ou鈥檒濒 be handling diabetes care on a day-to-day basis, from preparing healthy foods to giving insulin injections and checking for low or high blood sugar. You鈥檒濒 also need to stay in close contact with your child鈥檚 health-care team. They will help you understand the treatment plan and how to help your child stay safe and healthy.听
When daily life is the biggest challenge of all听
First comes the diagnosis, and then comes the rest of your life, says Dr. Zoltan Antal, Chief of Pediatric Endocrinology at 麻豆传媒高清版 and an assistant attending pediatrician at NewYork-Presbyterian鈥檚 Phyllis and David Komansky Center for Children鈥s Health.听
At first, managing the disease can be exhausting, both physically and mentally, he says. 鈥淥苍肠别 a child or teen adjusts to all the glucose testing and insulin injections鈥攁nd they always do, often better than adults鈥the next challenge is to adopt strategies for incorporating T1D care into daily life.听
鈥Just as challenging,鈥 he continues, 鈥渋s the need to gain acceptance and understanding from your friends. That will take time, but you will soon become an excellent peer educator as well as an advocate for your needs and an expert in diabetes management and self-care.鈥听听
One thing is certain: Once a child or adolescent is diagnosed with Type 1 diabetes, that young person鈥檚 life will never be the same.听听
All the things: A short list听听
It would require a book to list every aspect of daily life affected by T1D, so let鈥檚 get started with the following short list of everyday activities that require special attention.听
- Taking a test in class? Keep your juice around, just in case you start feeling low.听
- Snacking on pizza or popcorn at the movies or a friend鈥檚 house? Make sure to check your blood sugar and give yourself an insulin dose within the required interval鈥攏ormally within 30 minutes.听
- Feeling tired? Check to make sure it鈥檚 not a blood sugar problem.听
- Going on vacation? Bring enough blood testing supplies, insulin and extra snacks, especially if you鈥檙e traveling abroad.听
- Going to the gym or the park? Check your blood sugar to see if you need a snack for low glucose or insulin for high glucose.听
- 鈥nd before bedtime, check your blood glucose again.听
How can parents help?听
Dr. Antal鈥檚 short answer to that question is: Have a plan. And the best way to create one is to sit down with your child or teen and ask for their input. Planning is a family affair.听
鈥淚t鈥檚 not a question of 鈥榳ell, now that you have diabetes, we all need to just accept that this is the new normal.鈥 It鈥檚 more like 鈥榟ow can we incorporate diabetes management into the things you do or want to do?鈥 Because there is always a way.听听
鈥淎s a family, anticipate potential problems and make a plan that involves school, friends, family members, your child鈥檚 medical team and whatever advocacy groups you choose to join,鈥 he adds. 鈥淭hat will be key to your child鈥檚 ability to live as fully, happily and safely as possible.鈥听
What if there is inadequate support at school?听
Schools do not always have nurses, and even if they do, nurses aren鈥檛 always trained to use the latest diabetes devices, Dr. Antal explains. Even more frustrating, legal and administrative challenges make a child鈥檚 day tougher.听听
鈥淵ou may be forced to go to the nurse鈥檚 office to have your blood sugar checked before lunch and get an insulin injection, and you鈥檒濒 arrive late to the lunchroom every day. That means you鈥檒濒 miss out on lunch-hour socialization and have less time to eat. And if your school doesn鈥檛 have a nurse at all, you鈥檒濒 need to miss school trips.鈥听
Although there is no easy way to navigate these issues, you can anticipate them and revisit the plan. 鈥The child with T1D should always be involved. It鈥檚 their life and their diagnosis, after all. Children always feel empowered when they鈥檙e engaged in decision-making. And sometimes, they even come up with the best solutions.鈥听听
You should also become familiar with laws that protect people with medical conditions from being discriminated against. It is perfectly acceptable for a child to check their blood sugar in the classroom if the parent, child and care team agree they can do so independently. Schools should be open to these negotiations.听听
Mental health screening and care听
Once the initial shock of the diagnosis wears off, the idea of life with a chronic condition sets in, says Dr. Antal.听
As children grow, there is often a natural increase in the risk of anxiety and regression鈥攁 response to stress in which a child or adolescent starts to behave in a younger, age-inappropriate way. Having a chronic illness may magnify these risks.听
鈥淚f mental health is not addressed early, and these issues are not identified and managed before they become severe,鈥 Dr. Antal says, 鈥渨e often end up having to manage more dangerous behaviors down the road such as cutting, intentional insulin omission or overdosing or outright suicidality. These risks can all be mitigated with early mental health screening and care.听
鈥淐hildren thrive when they have an outlet for their emotional and psychological issues on a regular basis,鈥 he continues. 鈥淓ven family therapy should be started early, for those fortunate enough to have access to mental health care.鈥听
And for those who lack such access, engaging in advocacy can be an empowering and health-promoting way to go, he says. There鈥檚 a lot you can learn from those already navigating T1D.听
Join a community support group through the Juvenile Diabetes Research Foundation (JDRF). Participate in annual diabetes walks. And schedule parent-child 鈥渃offee hours鈥 to check in and see how everyone is doing.听
Tools, tech and resources听
An insulin pump can help patients avoid numerous insulin injections. Small, durable and easy to use, the pump can be regulated via a phone app or small device.听听
A wearable continuous glucose monitor sends out blood sugar levels regularly to your phone app, eliminating the need for daily finger sticks. And it can warn you in advance of an impending low or high blood sugar level so that you can deal with either of these before you start feeling sick.听
Additionally, Dr. Antal advises his young patients and their families to take advantage of chat groups, especially those involving school staff and teachers, for ongoing daytime communication.听听
鈥淎nd plan ahead,鈥 he reiterates. 鈥淓verything takes longer when you factor in diabetes.听
鈥淭补肠办濒别 diabetes as a family. Count carbs together. Everyone can benefit from healthy eating. Maybe only one child gets insulin, but everyone in the family can adopt the same habits so it won鈥檛 feel as lonely for the child with T1D.鈥听听
To make an appointment with a pediatric endocrinologist at Weill Cornell, visit /pedsendo听