10 Things I Hate to Hear from My Diabetic Daughter (and 10 Things I am Looking Forward to Saying Someday)
We are getting very near to the date of my youngest child's first "diaversary" (anniversary of the diagnosis of her Type 1 Diabetes.) I'd like to say that I am just now starting to think about how diabetes has affected our lives, but in all honesty, I think about it every day. Many, many times each day. You probably know this because I talk about it all the time. It really is quite consuming.
I don't mean to get depressing, but here are a few things I hear my daughter say that just make me sad. My heart really drops. She's 8. I hate that she has to deal with pain every day - physical and emotional. She does not say all 10 of these things in a day, but probably 8 of the 10 I will hear at least once in a week. But then, be sure to read on, because there is hope at the end of this post.
1. Darn it! I didn't get enough blood out. Now I have to prick my finger again.
Really, why should anyone's child need to make herself bleed? Her fingers are a mess. The finger pricks are actually much less dreaded than they were the first few months of diabetes, but she still hates it, and bargains with me to put it off when we can. The worst is when she pokes her finger and doesn't get out a measurable amount of blood. So she has to do it again. Very stressful.
2. Do you have to change my pod now?
We have found the insulin pump to be a much more effective way of controlling blood sugar than the shots we were giving. But the pod that holds the insulin only lasts about 2 days for her, and she does not look forward to getting that injection every other day. Especially if we have to do it while she is awake.
3. Today's a Dexcom day?
The Dexcom is her Continuous Glucose Monitor. It is a device that has a needle injected into her skin to take constant blood sugar readings. (Because it can be less accurate than ideal, we still need to do the finger pricks too. The Dexcom just gives us a good idea where her blood sugar is heading (high or low) and to what degree. Whereas her insulin pod is an automated injection, I have to insert her sensor for the CGM manually. Since I only have to change this once a week or so, (and we have only had it a few months), I am really not that good yet at inserting this flawlessly. And apparently, it hurts A LOT. (Especially to a little girl with Sensory Processing Disorder.) When I mess up and have to do it again, I feel just sick to my stomach. Even when she's sleeping, she cries in pain. Moms don't like to hear that from their babies. Especially from something they are doing to their babies.
4. Can I have a cookie?
If it doesn't have a carb count, then no. I am finding that cookies are the worst because they can vary so widely on grams of carbs. (Note: Diabetics of both types count carbs, not sugar. Sugar-free really means nothing to them.) We do have a fantastic scale that can tell us carbs on certain foods, but if we can't look up a carb count or make some kind of reasonable estimate, then we have no idea how much insulin to give. We can't risk giving too much or too little in a body that only weighs nearly 60 lbs.
5. Mom, I must be high. I'm SOOO hungry!
This is the meanest trick of diabetes. When her blood sugar is really high - when she really can't have something to eat - then her body craves food. We try to get around it with 0-carb foods, but apparently that doesn't cut it. I don't understand this, but it is totally not fair.
6. Where's my <insert one of many supplies we keep track of… meter, test strips, wipes, Dexcom, PDM, etc….>? or Did you remember to pack my… (see above)?
There are just so many things to think about when leaving the house. There is one little machine that controls her insulin pump - so that must go with her everywhere. If it gets left at school, we better get to the school before it closes! And don't even think about it ever getting lost somewhere. Out of test strips? That's a problem. No spare insulin pod? That's a problem. No fast acting candy for low blood sugar? That's a problem. Forget any of these when you leave the house, and you have to turn around and go home. One time, I had her bag all packed for church - and I left it on the kitchen counter. Yep, you guessed it. We had to leave church and go home. Last week at the pool, her blood sugar went down to 27. It doesn't get a whole lot lower than that before you need to do the emergency glucagon (concentrated injectable sugar to bring her out of a coma) shot. And I did not have the glucagon with us! Must have everything, everywhere.
7. Mom, I have a headache.
She gets these a lot. They happen when she goes from really high to really low, or some other big change. We are blessed that ibuprofen has worked well for her, but until it takes effect, she can't take noise, or light, or movement. It's just no fun.
8. But I don't want to sit out! My friends are having fun in the pool!
I don't know what it is about the water, but we have found this summer that anytime she goes near the pool, she goes low. So of course, if she's low, she needs to sit out of the activity until she goes up a little. And she's the one of my three kids who most likes to be in it, so sitting out is like punishment.
9. I think I'm going to throw up.
This is when things are really bad. If her insulin pod is not working, and she does not get insulin at all, all the bad stuff will build up and make her feel very sick. That was the trigger that actually led us to the hospital last year. She was vomiting without relief. Now, sometimes, it could be a stomach bug, but that is not good either. With no sugar left in your body, and no stomach to keep anything down… well, that's just a scary place.
10. Please take me to the hospital!
She has only said this 3 times since (and including) the day of her diagnosis. But she knows about the hospital. And she knows it has to be really bad to go. If she is asking us to take her to the place where she was poked and prodded endlessly until she couldn't remember anything more, then she is really sick. And Lord help me, I never want to go through that again with her.
Phew. That was a rough road. So, I like to think ahead. We are extremely hopeful about a new vaccine called BCG (not a new vaccine, but it is still in trial for treatment of Type 1 Diabetes). With it, we are hopeful that my child will not suffer from this disease after high school. Very, very hopeful. And when that happens, I CAN'T WAIT to say these things:
1. Go ahead and eat!
Especially with breakfast foods, we need to let her sit and wait after we administer the insulin, to give it time to take effect. Sitting and waiting is hard for a hungry child to do! She has been so good for us though. If she is not sure if we pumped it in or not, she will sit at the table and stare at her food until we tell her to go ahead.
2. Good night!
Too often our nights are interrupted with the need to fix blood sugars. Sometimes this takes a long time and we need to stay up through the night to do it. I can't wait to sleep through the night without worrying again.
3. Ready to swim?
No taping down sensors or pods and worrying about standing out. Just jump in the pool and go! No need to remember 4 extra bags of candy or the glucagon gun, just in case. And no more staring at my child when she swims to make sure she resurfaces and didn't go into a low sugar coma and drown. She's going to be okay.
4. Let's see if there are any free cookies out at the bakery.
I love my daughter, but I hate taking her grocery shopping. It was always our tradition to stop by and see if the bakery had any sample cookies out. You know what? Those cookies don't have a carb count. And every chocolate chip cookie is different. We don't go by the bakery anymore. But one day, we will go back.
5. So, what's the school nurse's name?
Our school nurses are terrific. I have heard stories about bad ones, but we are blessed. But I just know them too well. We speak at least once daily. And send notes back and forth. It's like when you know the principal so well for having a child constantly in trouble. No matter how nice the person is, you wish you knew them under better circumstances. But you know what? I know lots of nice people. Let's skip a few. I don't need more school officials to talk to every day.
6. Why don't you go to that sleepover at your friend's house?
She has not been invited to one yet, but I know it's coming. She's a little girl. And she's dying to go to one. Right now, I am terrified of it. I don't want to have to let another parent take my middle of the night responsibilities. Especially if that parent isn't familiar with what to do for a diabetic. My child is a pretty heavy sleeper, and she never wakes up to hear the Dexcom alarm her about her blood sugar. So… another thing I don't want to worry about.
7. I've got my tiny purse, and that's all we need, so let's go!
Remember all that stuff we have to take with us everywhere? It's like having a diaper bag again. It doesn't matter how cute it is, it still has to be big enough to hold everything. Man. I had just gotten back to carrying a little purse with just a wallet and a lipstick.
8. Gee it's been a long time since we got a medical bill.
Now, this is not to say we don't get medical bills for all our other various injuries and check ups, but the ones for diabetes supplies are quite costly. I'd sure like to give those up!
9. What's the number on our health insurance card?
Yup. I called insurance so often I know all the numbers- the phone number, the ID number, and the group number. That means I have been on the phone with them enough times to memorize them. And you know what it's like to be on the phone with insurance! (Actually, I hope you don't.) That said, I am grateful that we DO have insurance.
10. Time to go to the doctor. Just a regular doctor. For that ONE shot you get ONCE A YEAR!
Or whatever! I just want my little girl to not have to get any injections on a daily or near-daily basis. I want her to have as pain-free a life as possible. I mean, isn't that the loftiest motherhood goal? We WILL reach it. We will!
I have no idea how many carbs are in that pizza. Or where it ranks on the gylcemic index. Or how long it will take to reach your system. AND I DON'T CARE!
We want our daughter to eat good food. But we don't want to panic when she eats something less than ideal. We want it to all work itself out. We want her body to take care of her again.
Thank you for reading that glimpse into our life this past year. I know it will be a long road ahead of us, but here's hoping that the worst is behind us and the best is yet to come!
My last blog post, telling the story of the discovery of my little one's Type 1 Diabetes, became one of my most highly viewed posts. That tells me that many of you are concerned about the health of our children - mine and yours as well.
So, I'd like to help you even more. Here, I am providing you a list of ten symptoms that could be clues that you are dealing with Type 1 Diabetes. After reading it, you might be able to get a step up on this disease, should it happen to you or your child. (Type 1 Diabetes does not ONLY affect children. For this reason, it is no longer called "juvenile diabetes.") If you see a combination of these symptoms, contact your doctor. If you suggest you suspect diabetes, a glucose test would be a very simple way to get a better idea.
Before I list the warning signs, first I want to explain how a non-diabetic (Type 1) body functions. Your body takes in sugar (mostly through carbohydrates) to get energy. In order for the sugar to get into the cells, it needs to be delivered to the cells with insulin. Insulin is a hormone produced by your pancreas for that purpose only. Without insulin, the sugar sits around waiting for it to be taken to the cells. The longer it sits waiting, the higher the level of sugar in your blood.
The pancreas of a Type 1 Diabetic has stopped functioning. It no longer produces insulin, so the insulin needs to be injected into the body to get the sugar into the cells. If you don't get the insulin into the body, the following could be seen:
1. Frequent Urination
This is one of the most common symptoms of diabetes - one that should not be overlooked. I should have known something was was wrong when my little one had to visit the restroom 4 times at a baseball game this summer. I thought she was just bored.
Why does this happen?
When the sugar in your body does not go into your cells as it should, it has to go somewhere else. Some of it stays in your body, seeping into your blood, rotting and turning acidic, but some of it is washed out with all the water you are drinking.
2. Unusual Thirst
It was summer. Even though it wasn't too hot, she was going through several water bottles each day. My only thought was, Water is good. I'm glad she's drinking.
If the body is dehydrated (from the frequent urination), it will do whatever it can to compensate. Unfortunately, this is a losing battle until the body gets the insulin needed to make it work.
3. Fruity Breath
I didn't specifically notice that it was fruity, but I did notice a strong smell.
When the ketones (protein in the blood) break down, one of the byproducts released creates a fruity fragrance.
4. Stomach Pain/Vomiting
One way we knew we were not dealing with a virus was that vomiting did not make my daughter feel any better, as it often does with a virus. She felt worse. If this ever happens again, I will know it is a very bad thing.
Vomiting is the body's last resort to get rid of something. In this case, sugar.
5. Shallow (or Deep) Breathing
This was the one symptom my daughter had that helped us realize something was really not right, even when she seemed to be doing okay. It sounded like she had a stuffy nose, but she didn't.
Respiration is another of the body's defenses - a way of trying to get those acidic byproducts out of its system.
For almost the whole summer, my little one seemed to be in a bad mood. Some days she stopped talking altogether, resorting to just screaming and growling. It was terribly unpleasant, and I was tired of making excuses for her. Now that we see a direct correlation between her bad moods and high blood sugar, I feel a lot better knowing the reason for her (now less frequent) grumpiness.
No clue. I actually haven't read anything about this being common. But it is a given in my daughter, maybe just from not feeling good.
I didn't believe my daughter was dehydrated. She had been drinking plenty. Looking at her, however, I could see what the medical professionals meant. Her eyes were very sunken.
It doesn't even out. As much as the body might be taking in by drinking, it gives it right back through urination. Throw in any vomiting whatsoever, and there is now an unbalance.
8. Weight Loss
My daughter was just about 60 lbs. at her well visit in June. At the ER in early September, she weighed just over 40. Through the summer, I noticed she looked thinner, but I assumed it was a growth spurt, and that she was growing taller to stretch out her baby fat.
Your body's cells still need to get energy from somewhere. Since they are not getting it from the sugar ingested, they start to eat away at fat reserves and muscles. (The consumption of the muscle leads more quickly to the drop in the pH level of the blood, because it is getting protein from the muscle and giving off an acidic byproduct.)
No wonder my child wanted to be carried so much more than before. By the time we got to the ER, she couldn't even walk anymore.
Remember- energy comes from the burning of sugar. The sugar that doesn't get into the cells cannot be burned.
We had gone out to dinner the Saturday before my daughter went to the hospital. She didn't want to tell us that her stomach hurt because she was so hungry and afraid we wouldn't let her eat.
Again, sugar is not getting to the body's cells. The cells are sending a message to the brain that they want food/energy!
It's my hope that you do not have to go through this yourself or with any of your children. But if you do, it is much less taxing on the body to catch it early. Here's hoping that a hospital visit can be avoided for any possible diabetics who see these symptoms.
Feel free to pass this information on to those you care about.
Because I love even numbers and lists!