Type 1 Diabetes

What is Type 1 Diabetes?

Type 1 Diabetes is an auto-immune disorder. T1D cannot be prevented and there is no cure.

People with T1D must take insulin injections to survive. That's why you sometimes hear it referred to as "insulin-dependent diabetes." Only about 5% of people with diabetes have type 1. Although it usually begins when people are young, it can occur at any age.

The current understanding is that the body attacks and destroys the insulin-making cells in the pancreas. This may be do to genetics, a virus, environment, or any combination of these.

When the body receives food, it turns the sugars and starches into glucose that is then sent into the blood cells. Insulin is the bridge that lets the sugar in the blood stream reach the blood cells to be turned into energy. Without insulin, the sugar cannot pass into the cells and the body cannot use food for energy. The sugar gets sent out with the urine and the body resorts to using fat for energy, causing severe complications.




 A Type 1 Diabetic is completely dependent on insulin that is injected into the skin at every meal. The body cannot survive without this insulin.  People living with T1D and their families are quickly forced to adapt to a 24/7, unrelenting cycle of blood sugar level testing and insulin injections to manage the disease and stay alive. They must pay careful attention to diet, exercise, sleep, stress, and other factors that can upset the balance between dangerous blood sugar lows and highs.

What ISN'T it?

T1D differs from Type 2 because it is an inability to make insulin, as opposed to a resistance to insulin. Pills, or a change in diet or lifestyle will not cure T1D. A healthy diet is essential, but will not keep a T1 diabetic from needing insulin shots for their entire life - until a cure is found.  At this point there is no reliable cure, but researchers are working on finding a way to turn the insulin-making cells back on.

 

T1D is not caused by eating too much sugar. It is caused by some combination of genes, the immune system attacking the pancreas, and a virus or chemical trigger that sets everything in motion.

Our family has a very healthy diet, and Bella's diet will not change. She can still have juice and sweets in the same moderation as any healthy child, but everything must be counted so that we can calculate the correct amount of insulin that her body will need to use that food.

 
A lunch that is counted for our outing to the doctor's office.

How did this happen?

Since the cause is not known, we can only speculate. For Bella, it is likely that her body started turning on her pancreas months ago and she was slowly working through her limited insulin production. While we were on vacation in June, she caught a cold that unbalanced her body enough that insulin production shut off completely and she quickly depleted her insulin reserves.

June 10th - before any obvious symptoms, and before catching the cold that triggered everything.

In that month she started chugging water, peeing a lot, eating a lot, losing weight, complaining that her legs were too tired to walk, as well as several other symptoms that could also be explained by hot weather and increased summer activity. In the week before diagnosis, she stopped almost all activity and responded very little to conversation. On Monday night she started throwing up, so we thought she had a stomach bug. The next day she had very labored breathing and threw up again in the evening. By midnight she was screaming with stomach pains, which quickly progressed to rolling on the floor in pure agony. It was obvious the second we got to the ER exactly what we were dealing with, as all the symptoms came together seamlessly.



July 10


July 16 - one month after her cold.

Her symptoms were caused by Diabetic Ketoacidosis (DKA), which means that the body had completely run out of insulin, and thus had no way of getting energy from food. It started using fat as energy instead, so she rapidly lost weight. Because there was so much sugar in her blood, the body needed more urine to flush it out, so she was relentlessly thirsty and had to pee often. She was drinking liters a day, but was dehydrated. She was eating several full meals a day, but was starving.

The process of breaking down fats created acid (ketones) in her body, causing her to have leg pains and stomach aches which led to vomiting, and eventually system failure. This is the same acid that we test for in pregnancy with a simple pee strip every time we visit the doctor or midwife.

July 24 - ER admission


July 24 - morning at Mary Bridge, as she started rehydrating but was still in severe DKA pain. After the DKA subsided she slept for the next 24 hours.


July 30 - third day out of the hospital

What is the same in our lives?

Much is the same in our lives. Bella is still recovering from starvation and hyperglycemia at the moment, and it will be a while before she has her blood sugars under control and feels great. She already feels better now than she did in the weeks leading up to diagnosis. Once her sugar is under control, she will have plenty of energy for all her favorite activities.

She will get to live the same wonderful life, with a bit more structure and extra attention to certain details.

Our diet has not changed, either. A healthy diet is helpful in controlling blood sugar, but sugar and carbohydrates are not off limits. We have a leg up, as our diet was already very healthy to begin with, and the girls are used to watching what they eat and are offered because of our gluten free diet.

What is different?

That being said, MUCH is different and it will take a while before it is a natural part of our lives.

CONSTANT MONITORING: At the moment, our lives revolve around keeping Bella's sugars at safe levels. We test her blood by a finger prick before breakfast, mid morning, lunch, mid afternoon, dinner, bedtime, at 10pm, and again at 2am. We also test any time in between those times that she may be feeling funny or if she is being extra active or having an extra treat. Usually we get to every finger in the span of 24 hours.

A few days' worth of needles.

FOOD: She gets two insulin shots in the morning, and one after every meal. That is usually about six needle pokes a day in her little body. Our lives are consumed by counting carbs, which will get easier as we get her sugar under control and our own estimates improve. Bella is only allowed to snack between her specific eating times on rare occasions, since every piece of food must be counted and enough insulin calculated and given so that her her body can use the food.

At every meal and every snack, we count the carbs in whatever we are serving. Bella eats to her heart's content, and then we count whatever she didn't finish or add more if she wants seconds. Then we calculate the right amount of insulin depending on the number of carbs in her meal. Too much and she risks the dangers of going low, too little and she risks the complications of high blood sugar.

In our own family, this job is especially hard because we cook from scratch. Instead of reading labels, we weigh and measure each ingredient and then calculate how much of that will eventually make it into Bella's serving.

While the counting and estimates will get easier with time, this is not something that will ever disappear. If Bella mindlessly munches on chips at a party or picks berries without a good estimate on how many she consumed, she risks a dangerous upset in sugar levels.

SPONTENAIETY: Eating times must be very regular, as a missed snack, delayed meal, or extra exercise can cause dangerous low sugar. Bella cannot leave the house without her diabetic supplies. She is completely dependent on insulin for survival, and if she were to have high sugar she would need a shot to bring it down, and if she had low sugar she would need fast acting sugar such as juice to rapidly bring her sugar up. She also carries and emergency glucose syringe in case her sugar falls so rapidly that she is unconscious and cannot eat to raise it. Luckily since we eat gluten-free, dairy-free, we are very much used to packing all our food with us, so this is just a matter of adding insulin and extra safety checks to the routine.


Bella's new shadow.

CHILD CARE: We have many friends who often take Bella and Lia for an afternoon or an hour or two. Now those friends must know how to administer shots, take glucose levels, know her schedule, count carbs, and know the symptoms and remedies of high and low blood sugar.

SICKNESS: Being sick now means around the clock monitoring and pushing fluids, in addition to all the usual discomforts of being sick.

SCHOOL: We are continuing our plans to home school, and hopefully we will find willing and inclusive teachers and nurses in all of our schooling activities.

How friends can help make this transition easier.

Please do not be afraid to ask anything, and please do not worry about saying the wrong thing to us.

UNDERSTANDING: I think I probably don't have to ask this of most of our friends. We will need a bit of extra understanding. As parents, we are currently sleep deprived from night checks, and have little extra time due to the additional time it takes to count while cooking, prepare counted snacks for outings, check sugar, administer shots, and document everything. We also have regular doctor appointments and the general emotional stress of working through these major life changes with a five year old who doesn't quite understand, and a three year old who reaaaally doesn't understand. If we find sugar levels are off as we leave the house for an outing, that may delay us a good half hour as we correct things. If we are on an outing we may have to stop and correct levels. If the kids are very active, we may have to stop and check levels. Often Bella will have to check her sugar before she can play, so feel free to explain this to family members so they understand her new routine.

SCHEDULING: We are now on a very strict schedule, at least until we get control of Bella's sugar. That means that if we are visiting during a meal time, you can expect us to stop and eat and administer insulin. Likewise if her sugar levels are off. Bella is not shy of her routine at the moment, and positive interest and questions are welcome.

GET TOGETHERS: If you are planning a get together or party, we understand that we are not your only guests. However, since many people have asked, there are a few things you can do to make our lives easier. If you are setting out food, please keep the nutrition labels. This helps us a ton, especially right now while we are evening out Bella's sugars and the wrong estimates can set her off for a full day. If the food is homemade, we will just do our best to estimate or bring our own version as we tend to anyhow with our gfdf diet. If there will be sweets/cake time, an estimate of the time when they will be served is super helpful, so that we can plan ahead to adjust Bella's insulin to kick in at the right time. If there is food out the entire time, try not to police Bella for me. If you see her grazing out of habit or during a time you are certain is not her meal time, please give me a heads up, or gently ask her to check with me.

SHARING FOOD: Bella has a healthy sense of food and is allowed to eat anything she would normally want. However, the food MUST BE COUNTED, and should only be eaten at meal times. Please do not offer her a bite of anything without checking with parents first, and try to explain this to your own family members so that Bella is not put in the awkward position of turning down food that she wants. She is only five, and trying to feel normal. I will do my best to inform friends if we are visiting during an eating time or not, and we can try to coordinate our food schedules to minimize the pressure on Bella, as we have many friends who snack all day.

CHILD CARE: If you are one of our extremely kind friends who like to trade child care, please let me know if you are still interested. I will be happy to train you on how to care for Bella. In general it is not difficult and it will get easier as time passes. If you are not comfortable with caring for her, that will not offend me.

Thanks for reading all this! It means a lot to us to have friends and family who care so much about Bella.


To learn even more and in more detail, check out JDRF- The Juvenile Diabetes Research Foundation and click on Life with T1D.

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