Overcoming Diabetes in Youth
When a child is diagnosed with a chronic medical condition, it can cause a lot of stress not only for the child but their family as well. Diabetes is an example of a condition that often involves all family members. As a result, it can be very easy for the family system to revolve around diabetes, when really it doesn't need to. If stress levels increase, family members may argue and there may be avoidance of diabetes care. To help ensure good diabetes management, there are some things that families can do.
Note: The content of this post is primarily focused on type 1 diabetes. Much of the information can also be applied to type 2, but the regimen examples may be different. In addition, the content in this post is not in any way intended to serve as medical advice. While I give some general suggestions related to things like frequency of measurements, you should follow the guidelines given to you by your endocrinologist.
Clearly define roles
One of the reasons diabetes can become the central focus of a family is that nearly everyone can serve a role in its management. Parents are often highly involved in helping test blood sugar levels, calculating the right number of units to bolus, and giving insulin injections. Even as the child with diabetes matures into adolescence and begins taking on more responsibility for their diabetes care, parents often check-in regularly.
But siblings can also be involved. That may be by helping to remind the child with diabetes that they should check their sugar levels. Or maybe they also help with insulin management if they're an older sibling.
While all of this assistance for the child with diabetes can be helpful (though it can also be counterproductive, which I'll discuss below), it's important to have clearly defined roles and expectations. Without that, it's easy for family members to feel more responsible for the diabetes management than they need to. Anxiety levels can rise out of worry that someone else won't remember to check the sugar levels, or won't be available immediately if there's a low and the child faints.
Setting clear roles and expectations can help prevent some of this unnecessary anxiety. But it can also help to ensure the child with diabetes is handling an appropriate amount of their diabetes care for their age. For example, children can help test their sugar levels and can talk with a caregiver about whether the levels are high or low and what should be done about them. But adult caregivers should handle unit calculations, bolus measurements, and injections at first. As the child enters into adolescence, they can begin to take on some more of these roles as they are able.
Adjusting roles as the child ages
Something that can be difficult for families to manage, for diabetes and other chronic medical conditions, is to figure out how to transition responsibility to a child as he/she transitions into adolescence and adulthood. This is tricky, and it's something that varies from family to family depending on what works best for you. The idea is to at least be aware that this balancing act needs to occur, and to monitor how things are going.
Similar to having clear roles for everyone, it helps to have a clear plan as well. Even if you're unsure what the exact timeline for everything will be, try to think about what makes sense for a next step. If your child is able to consistently check their sugar levels, start talking with them about how the units are calculated. Then start having them do the calculations under your supervision so you can see if they're doing it right. If they are, then they can start helping to measure out the bolus. You can also talk through with them about rotating sites, how to do the injection, and so on. As they are able to demonstrate an understanding, they can start to do some of the things themselves under parent supervision, until eventually they can handle doing it themselves with just occasional check-ins and reminders.
While that sounds simple, it's not always that easy. This generally occurs over a long period of time, especially if the child is diagnosed at an early age. To get some guidance regarding what tasks are developmentally appropriate for your child/teen in terms of their diabetes care, ask your endocrinologist. They can either provide you with some guidance, or they may have a handout that discusses appropriate developmental expectations.
Usually a child is not following through with checking their sugars and dosing corrections, and parents feel a need to push them to do more. But what often happens is that the pushing leads to withdrawal and further ignoring.
Instead, try to avoid the regimen and roles turning into a fight. Try to understand the underlying reason why the child is not doing more. It's rarely anything like laziness. Instead, the child may feel overwhelmed by the condition. In that case, pushing just makes it seem even scarier!
In these situations, it's better to have open communication about the condition and expectations. Collaborate rather than battle one another, and you'll usually find that things go much more smoothly.
Resist checking excessively
For many parents (and sometimes kids), it can be very tempting to check blood sugar levels frequently throughout the day. With continuous glucose monitors (CGMs), this is even easier. But there's a downside to checking all the time: it creates unnecessary anxiety. Blood sugar levels take time to change after eating and after insulin, so checking extra isn't likely to help much. It's also expected for blood sugar levels to be high after eating, and frequently checking during this period of time can give the false impression that the levels are higher than they should be, and that can result in temptations to over-correct. But then after correcting again, it's common to be concerned about lows, prompting additional level checking.
Is this sounding familiar to anyone?
Instead, try to resist the temptation to check excessively. If you're checking every 10 minutes, try going down to every 20 minutes. Keep pushing yourself to check less and less until you reach a good balance based on input from your endocrinology team (generally before every meal and sometimes an extra time or two).
Try to remember that the numbers (blood sugar levels and A1C) are meant to help and give guidance. They are not the end-all-be-all, and you should not sacrifice too much quality of life in the quest for perfect numbers.
Trust the devices
As I mentioned CGMs can be both a blessing and a source of stress. Many parents I've worked with have expressed that they don't trust the CGM to be accurate, or to actually warn them when the levels are getting low. But as much as you can, try to trust that the device will work properly. If you're scared to let the sugar levels get low enough to trigger the alarm, increase the threshold for the alarm so you can experience it going off a few times. That can give you comfort that it's working, and then you can lower the threshold again with more confidence.
Expect some unpredictability, especially during teenage years
Diabetes in youth is tricky, because their bodies don't respond to insulin in the same way as an adult's body. That's why it's important to have a pediatric endocrinologist if at all possible.
But even with a wonderful endocrinologist, you should expect there to be periods (sometimes years) when the blood sugar levels seem unstable despite following the regimen closely. That's because the insulin needs to be adjusted as your child grows, and things get extra tricky once puberty kicks in and starts to influence insulin sensitivity further.
Just do your best to remember that these ups and downs are not only ok, but they're a normal part of the process! We want to minimize them as best we can, but excessive worry about inconsistency in numbers will only make it harder to get things back under control. Just keep a consistent log to communicate with your endocrinologist, and they'll help you figure out the right balance.
And always remember that your child is still your child, not just a medical condition involving numbers that need to be balanced. But while we're keeping that in mind, we need to be careful of the other extreme, because sometimes inconsistent numbers can be discouraging.
On the other end: Don't just ignore it
Diabetes can be tricky to keep track of because it's mostly invisible. Plus, the child with diabetes may feel "fine" even when they have hypo- or hyperglycemia. Add that to the fact that there may not always be an immediate consequence to letting your child have uncorrected dessert, and it's easy to see how some families just choose to ignore the condition.
But diabetes can have a significant impact in the long-run. Or, if the child is "honeymooning" (i.e., they are still producing some insulin, so they can get by more easily without consistent care for a period of time), you can expect things to get much worse down the road. While diabetes management can seem burdensome, it can quickly become a part of the family routine. Once it is, you won't notice it as much, and you'll more easily be able to adapt as changes need to be made to the regimen.
Maintain familiar family routines
After a diagnosis of diabetes, many families end up changing their routines. Some become extra lenient due to "feeling bad" for the child. Some become overly strict and stressed out of worry that something will go wrong. Some avoid eating foods or going places they used to go to out of worry that they may not be appropriate for a child who has diabetes.
None of these major changes in family routine is ideal. You want to find a good balance of change and consistency, ideally by adapting current routines rather than replacing them. For example, if your family normally goes out to eat once a week, continue to do so! Maybe just choose healthier options from the menu. This will not only help the child who has diabetes, but it will help their siblings (if they have any) as well.
Familiarity and routine are not only comforting for the child, who will be reassured by the fact that not everything in their life is changing, but it can be reassuring for others in the family as well. Again, we don't want the family system to become focused around the diabetes, and one of the best ways to do that is by maintaining the system as-is to the extent possible. Even expectations for chores and consequences for misbehaviors can be comforting for a child.
Adjust diet of the whole family
That being said, one thing that commonly needs to change as a result of a diabetes diagnosis is diet. But some families will just start to make different food for the child who was diagnosed, while everyone else eats the same old foods. This not only makes the child feel even more different from everyone else, but it also means the family may be maintaining some unhealthy eating practices.
Now, that's not to say that the family eating led to the diabetes. Type 1 in youth is autoimmune, not from diet. But if what the family is eating would be bad for the child with diabetes, then it's probably not very healthy for those who don't have diabetes either.
While adjusting family eating habits and diet can be very difficult, it can also be very rewarding. Consider using the diagnosis as an opportunity to make some of these changes, and you'll start to notice some extra benefits as a result! Just make sure the focus is on improving the health of the family, and not on having to make changes due to the diabetes, otherwise siblings can feel resentment towards the child with diabetes.
There are a lot of other things families can do to help a child (and themselves) work through a diabetes diagnosis, but they will be more specific to each family. Hopefully what I discussed above has been helpful, and helps you think of other things that may be helpful for your family.
If you have any questions about how to best work through this process, I highly encourage you to speak with your endocrinologist and the diabetes educator in your clinic. If you want some additional help, pediatric psychologists are also very familiar with how to work with families going through something like this.
If you've been through this experience, I'd love to hear what you found to be helpful! Either send me a message, or leave a comment below. You can also leave a comment if you have any questions based on what I discussed above.