What is Type 1 Diabetes?

Type one diabetes is an autoimmune condition. This means that one’s own immune system has attacked part of their body thinking it is foreign, bad, an infection, or something else that should not be there. Type one diabetes is NOT, I repeat – NOT caused by anything that anyone did. No, the person with diabetes did not eat too much sugar, or at least that did not cause them to develop diabetes. There are many misconceptions about diabetes and the causes of developing diabetes. Erase those all from your mind NOW!
The pancreas is an organ that makes insulin. It is the insulin producing cells in the pancreas that are attacked and rendered useless in type one diabetes. Now, what is insulin you ask? Insulin is a hormone that helps your body use the food you eat for energy. Think of it as a key that opens the cells to allow sugar in. If the sugar can’t get into those cells, it’s floating around in your body making you feel rotten. Without the sugar in those cells, the cells are hungry and confused and do not function as well as they should. Why does this matter? You are made of cells. Cells play a huge role in everything your body does, so in order for your cells to get the energy they need to function, you need – what? YOU NEED INSULIN! When your pancreas does not make that insulin anymore, you need to get it another way. The way people with diabetes get their insulin is by injection or infusion. We’ll discuss that all more later on, but for now – let’s review the key points to type 1 diabetes.
1) Nothing you or anyone else did caused this disease to develop. It is autoimmune and no one’s fault.
2) Type 1 diabetes is never going away. You do not grow out of it, despite the slight misnomer of “juvenile diabetes”.
3) The body of someone with type 1 diabetes has stopped producing a hormone called insulin that everyone else’s bodies makes, so therefore, they need to somehow replace that missing hormone.
4) A person with type 1 diabetes can do ANYTHING that someone without the condition can do – it just sometimes takes a bit more planning and effort.

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Sugar and Insulin Imbalances

In the previous section, we discussed some of the very basics of insulin. We know that insulin and sugar work together to give cells the energy they need for your body to function.
If the sugar cannot get into the cells due to lack of insulin, then there is much more than you need (your general functioning level of sugar in the blood) left floating around in the body. This is high blood sugar or hyperglycemia. If this is caused by a lack of insulin, then how do you treat hyperglycemia? You treat this imbalance with insulin so that the sugar, or glucose can once again get in the cells and restore that balance so that only your working level of sugar remains in the blood.
When there is more insulin than you really need to satisfy your cells, those extra insulin molecules pair up with sugars that are floating around in your blood causing low blood sugar or hypoglycemia. There is once again an imbalance where this time, your working level of sugar in your blood is lower than ideal. So if you do not have enough sugar able to work as energy in your bloodstream because of more insulin than you need, how do you treat this? SUGAR! You need to restore that balance so that you are back at your “normal” working level of sugar in your blood without all that extra insulin capturing the sugar so it cannot be used.
Now that we know what hyper- and hypo- glycemia are, let’s review some of the signs and symptoms of these conditions so you can recognize them. Since diabetes is a very individual disease, the way people feel high and low blood sugars and the way they react to them varies person to person.
Low blood sugar signs and symptoms can include:
• Dizziness
• Shaking
• Feeling faint
• Looking pale
• Unsteady movements
• Having a hard time balancing
• Tired
• Grumpy
• Headache
• Sweating
• Feeling weak
• Hungry
If someone you care for feels this way or you observe these symptoms in them, they may need sugar to raise their blood sugar level. First, you should verify that these signs are indeed causes by low blood sugar, and then if that is the case, treat the low blood sugar with something like juice, regular soda, glucose tabs, glucose gel, hard candy, or sugar packets. Most people consider hypoglycemia to be a blood sugar under 70, but please ask the parent what their specific number is. It would also be a good idea to ask them the preferred method of treating the low blood sugar, and how much of that specific form of sugar they use for treating lows.
High blood sugar signs and symptoms can include:
• Thirst
• Frequent urination
• Hungry
• Grumpy
• Blurred vision
• Headache
• Tired
• Dizziness
• Nausea
When these symptoms are noticed by your or the child with diabetes, you first need to check the blood sugar to see if in fact these are from high blood sugar. Generally a high blood sugar is anything over 200, but please verify what number is considered high for this person with diabetes. To treat high blood sugar, insulin is needed. Usually there is some sort of correction factor or sliding scale so you know how much insulin is needed for a certain high blood sugar number.
**Remember: If in doubt and no blood sugar check has been done, treat as if the blood sugar is low since those are generally more immediately dangerous than high blood sugars. **

The Basics of Insulin Administration

There are two basic types of insulins. There are long-acting or background insulins, and there are quick or short acting insulins. The two main long-acting insulins are Lantus and Levemir. The most widely used quick acting insulins are Humalog, Novolog, and Apidra.
Insulin can be administered in two basic ways. The first way insulin can get into you is by injection either using vials of insulin and syringes, or with insulin pens and needles. The other main way you can get insulin into you is by insulin pump, also called continuous insulin infusion. Either way, you are accomplishing the same goal of replacing the insulin that the pancreas of someone with type 1 diabetes no longer produces. Neither way is necessarily better than the other, they both have positives and both have negatives. Some people even bounce back and forth between methods of insulin delivery depending on various circumstances.
When injections are used as the primary method of insulin delivery, generally both types of insulins will be used. A long-acting insulin will be injected once or twice a day to act almost like a constant IV drip of insulin since “normal” people always have insulin working in their systems. This is called basal insulin. In addition to this basal insulin, most people who use injections also inject an extra bolus or extra burst of quick acting insulin to go side by side with foods.
Insulin pumps come in two types. The most commonly used type is a tubed pump. With this type of pump, there is a pager-looking device connected to an infusion set by tubing. The infusion set is attached to the body. With any kind of insulin pump, the device is most always attached to the wearer, but with tubed pumps, the pump can be disconnected for showers, baths, swimming, high impact sports, etc. Tubeless pumps or patch pumps have two components. There is the actual pump pod that is attached to the body with adhesive. This part holds the insulin and infuses is as needed. The other component is the PDM, controller, remote, whatever you chose to call it – it does the same thing. This part allows you to program changes to your normal basal pattern, this is also where you program in a bolus for meals or high blood sugars.
Every insulin pump is different. Please refer to the manufacturer’s website or user manual as well as the primary caregiver for instructions on how to make any adjustments to the settings or insulin infusion rates.

Basal Insulin

In your role as a part-time caregiver for someone with type 1 diabetes, you will likely not have much to do with the long-acting insulin or the basal insulin rates. You may have to inject the long-acting insulin depending on when you are caring for this child, and if so – please get the hands-on teaching from the parent as there are many ways to inject insulin and children tend to like routine.
If the child is on an insulin pump – either tubed or tubeless, you may be asked to adjust the basal rate temporarily. Do not be scared! Many people choose to lower the amount of insulin if there is going to be planned exercise or activity, or raise the basal rate for times of stress or illness. This can easily be accomplished by setting a temporary basal rate at a certain percentage higher than the normal rate. Since every pump is different, please refer to the manufacturer’s website or user manual and the primary caregiver for instructions on how to change various settings.

Bolus Insulin

Generally speaking, whenever someone with type one diabetes eats anything with carbohydrates, they need insulin to cover those carbohydrates so their blood sugar does not shoot to the moon. This can be accomplished a few ways: a bolus by injection, a bolus by insulin pump, or in more rare instances, the carbohydrates are covered by longer-acting insulin that is already “on board” and waiting to work.
When you have diabetes, food is a very interesting thing. As soon as you are diagnosed with the condition, your relationship with food automatically is changing. Some foods will make your blood sugar go high no matter what you do, some will make you drop even if you count them as less than you should. Here is where we will start talking about some of the more complex aspects of diabetes life.
Most people with type 1 diabetes will have an insulin to carbohydrate ratio that their diabetes doctors have helped them figure out. This ratio tells us how much insulin you need for a certain number of carbohydrates. For example, one can have a ratio of 1 unit of insulin to cover 15 grams of carbohydrate. To put it in diabetes terms, their I:C ratio is 1:15.
The other main type of blousing for someone with type one diabetes is a correction bolus. This is used when the blood sugar is higher than you would like it to be. With correction boluses, there is something called an insulin sensitivity factor, or ISF. This ratio will tell you how much insulin will LOWER the blood sugar a certain amount. For example, you can have an ISF where 1 unit of insulin will lower the blood sugar 100 points. This would be an ISF of 1:100.
You can have a meal / snack bolus alone, you can subtract some from the bolus because of a slightly lower than desired blood sugar or for upcoming activity that would be expected to drop the blood sugar. Correction boluses can also be given alone. Sometimes you even have to get a bit crazy and give a bolus that is for a meal / snack AND correcting a high blood sugar at the same time!

Food, Glorious Food!! (Except not always in the diabetes world…)

One of the best ways to start getting acquainted with counting carbohydrates (the most commonly used way to bolus for the foods we eat) is to simply start looking at the labels of all the foods you yourself eat. How many servings are there in a package? Is this something I can eyeball, or do I need a measuring cup? If this is a prepackaged food, is it truly 1 serving per package, or are the food people trying to trick you and it’s actually 3 servings per package?
Here comes a curve-ball: look at the fat, fiber, and protein. All of these components of food can slow down the digestion rate and make blousing a bit more complicated. The more protein, fat, fiber in a meal, the slower it generally gets into you to start raising the blood sugar. In order to work these more complex foods such as pizza, high fiber granola, or high protein steak with a baked potato into our diets, we can use different types of boluses on an insulin pump. With injecting insulin, there is really only one kind of bolus, and that is the “normal” bolus. If an insulin pump is the method of infusion, there are THREE kinds of boluses that you have in your arsenal.
The “NORMAL” bolus. This is just like if you inject fast acting insulin. All the insulin goes in at one single time, and gets in and out of you rather quickly. This is the most often used bolus type for many people. If you are eating simple carbohydrates, or a meal not complicated with loads of fat, fiber, and protein, this is a great bolus to use. This is also generally the bolus type that is used for correction boluses for high blood sugars.
The extended or square bolus is one that takes the bolus amount and extends it out over a longer time period. This is my personal favorite bolus type for days like Thanksgiving and Christmas where you end up grazing all day. You are eating food over a more extended time period, and the insulin is matching that and going in over a more extended time period.
The third type of bolus is the combination or dual wave bolus. This combines the square wave or extended wave and the normal bolus into one package. With this bolus type, you get a higher amount of insulin up front, and the remainder of the bolus spread out over a longer time period. This type of bolus is great for meals that have parts that will get in you quicker, and also fatty parts that will be delayed in the digestion. Pizza is one prime example of where I personally use this kind of bolus.

Based on 10 units of insulin over a period of 5 hours, the following explains how these boluses would work.  The normal bolus infuses the insulin all at one time, right at the start – all 10 units in hour 1.  The square / extended bolus takes that 10 units (or however many units are needed) and spreads it out over whatever length of time you choose -in this case, 5 hours, which would result in 2 units of insulin each hour for 5 hours making a total bolus of 10 units.  The combo / dual wave bolus is just like it says – it is a combination of the normal and the square wave.  There is a portion of the total 10 units given up front, say 6 units at hour 1, and the remaining amount of the bolus is extended out over 5 hours  which would result in 1 unit given at hours 2, 3, 4, and 5.

Adventuring in the Real World

When leaving the home environment where you likely have every supply and back-up you could ever need, you may ask what all you would need to bring with when leaving for an extended amount of time.
If leaving for less than one full day:
• Insulin pump (with enough insulin for a full day and a half to two days)
OR
• Insulin vial with syringes (only fast acting is needed unless you will be gone during the time for a long acting shot)
OR
• Insulin pen with pen needles (only fast acting is required unless you will be gone during the time for a long acting shot)
• QUICK sugar source such as: glucose tabs or gel, juice boxes, hard candy
(if in a bind, honey packets, sugar packets, or regular soda can be used)
• Glucometer with plenty of test strips
• Hand sanitizer or alcohol wipes for cleaning fingers before pokes
• Emergency phone numbers (primary caregiver, doctor, etc.)

If leaving for an overnight or more:
• Insulin pump with twice the anticipated amount of insulin needed
OR
• Insulin vials (both short and long acting) with syringes
OR
• Insulin penS (both short and long acting) with pen needles
• Glucometer with more extra vial of test strips
• Quick acting sugar such as: glucose tabs or gel, juice boxes, hard candy
• Emergency phone numbers
• Hand sanitizer or alcohol wipes
• Snacks such as peanut-butter crackers, granola bars, etc.

Always check with primary caregiver the best way to get in touch with someone and who to get in touch with in case of emergency, diabetes or otherwise.

When to Seek Help

Sometimes, diabetes will not play fairly. In life in general, things tend to pop up that we may not expect. When dealing with a medical condition that must be monitored and cared for like an additional child, things WILL go wrong. It is inevitable. The important thing is to know when to seek help, what kind of help to seek, and what to do in the interim.

Sustained high blood sugars:
If correction blood sugars are not working as they should, an injection should be given if usually a pumper, or if usually on multiple daily injections, a new vial of insulin or pen should be opened and used for the correction. Call the primary caregiver after a set amount of time that you decide with them, and in the interim, push non-carbohydrate containing fluids such as water, Crystal Light, sugar free Koolaid. Continue to monitor glucose levels every hour or more frequently.

Sustained low blood sugars:
If blood sugars are running low over a long period of time, if on a pump either disconnect or suspend insulin delivery in the pump. Push glucose per primary caregiver guidelines, and continue to monitor glucose levels every hour or more frequently.

Sick days:
If vomiting, call primary caregiver IMMEDIATELY and if blood sugar is running somewhat low (ask primary caregiver what this number would be), suspend or disconnect insulin pump if this method of insulin delivery is used. If running high, continue insulin delivery as normal. In this situation, care is often on a case-by-case basis, so follow primary caregivers’ instructions and continue to monitor glucose levels every hour or more frequently.

Insulin pump falls off:
If the insulin pump falls off, you may end up using shots for insulin delivery until the primary caregiver returns and can insert a new pump site. Please check with primary caregiver BEFORE this happens to make a plan of action specific to that child.

With children, random things happen. With diabetes, random things happen. If anything unusual or out of the ordinary happens, do not hesitate to call the primary caregiver or another designated person who can help with the unusual diabetes circumstances

How it all began

A few years back, one of my good friends was interviewing for a nanny position with a family where one of the daughters had type 1 diabetes.  She asked me to share all my diabetes knowledge with her so that she would know if this was a position she would be interested in, and if she could handle caring for a child with diabetes.  I started telling her all sorts of things she would need to know, and was looking for books to help guide her as well.  This is where I ran into a problem.  So many of the caregiver guides about diabetes were geared towards the parents and were far too involved and complicated for someone like a nanny, babysitter, grandparents, parents of friends, teachers, etc.  I could not find something that was more involved than just a book ABOUT diabetes, but not so overwhelming for someone who doesn’t live with the child 24/7.  I started writing out the information, advice, etc. as a Word document.  I have adopted this as a bit of a pet-project, and have been working on it, editing, revising, etc. for the past few years, but what could I do with this?  I have talked to many pediatric endocrinology offices about getting this printed and available to newly diagnosed families, I have thought about getting it published, but nothing ever played out.  My uncle, Dr. Bill Donovan (Orthopedic surgeon and overall GREAT guy) recently suggested making a blog of my guide, and that way the information would be out there, it would be FREE to get it out there, and there could even be an interactive side to it where people could comment and ask questions.

BRILLIANT!

Coming up soon I will start posting this guide on here for the world to see and hopefully benefit from.  If anyone gets some use out of it, if any newly diagnosed families share this with family, friends, baby-sitters, teachers, etc. and this lets them be able to resume a more “normal” lifestyle after the diabetes diagnosis, I will be happy (and I would love to hear comments about how it helped, what to add or delete, etc.).

Preface

First and foremost, the child you are helping to care for is still a child. They are still a person, they just happen to have diabetes.
Diabetes is a very individual disease. What works for one person may not work for another. If you take two girls, both aged eight years old, both with type one juvenile diabetes – they may have completely different ways of managing their diabetes. This guide will help to teach the basics of type 1 diabetes management to people who do not have to live with the condition every day, but need to know the general ideas behind caring for a child with diabetes.
I was diagnosed with diabetes when I was eight years old. I remember my parents having to go over the basics of caring for me and my diabetes with the various babysitters, teachers, parents of close friends of mine, summer nannies, and relatives. Through my experiences of having diabetes myself, being a babysitter, and working in the medical field, I have learned how to simplify diabetes to the everyday basics.
When a very close friend of mine had the opportunity to work as a live-in nanny for a family with a young child with diabetes, I then decided through helping to educate her that one comprehensive guide really should be out there. I looked through many resources for her, but so many are geared to parents and are far too in-depth and confusing for when someone only needs to know the basics. That is when I decided that with my knowledge and experiences, this was something I could provide to the diabetes community.