Ups, Downs, and Opinions

Shortly after M switched to Novolog, she also began lacrosse season, which usually requires a couple of weeks of adjustment.

I am pretty sure that the timing could not have been worse.

Having two major changes in lifestyle make the diabetic body, let's just say, unpredictable.

Her blood sugar was a mess. 32! 595! 31! 536! AHHHHHH!

This change and unpredictability sparked a lot of debate and discussion among those of us who were responsible for M's care.

First it was the DNE, who told me that "insulin is insulin", and that any change that was occurring must have to do with her renewed exercise levels. I disagreed, knowing that we have made this change before, and it was never quite this erratic. I did wonder if maybe M was eating food that I didn't know about, but she assured me that she was not.

Then the school nurse decided to chime in. "You need to get that insulin changed back! Ask the insurance company to change it! They will make an exception if there is a reaction that is detrimental to her health!"

The athletic trainer agreed. "It was not this bad before! It must be the insulin!"

I found these forceful declarations unfair.

I was exhausted. I was checking M's bg levels every two hours around the clock. I was stressed. I was tired. I actually became weepy a work. My coworker suggested that I take a mental health day after she asked me how M was doing, and I welled up at the thought of my daughter and her unpredictable results. I wondered daily which child I would be coming home to: the pasty gray-faced child, or the insane cranky child who felt defensive about her test results.

My diabetic students told me to hang in there; that I was doing the right thing. Monitoring bg levels regularly would give me the information that I needed.

M and I decided to give it a month. After two weeks of bi-hourly monitoring, we adjusted her basal rate rather aggressively, up in some places, down in others.

Happily, after about 4 weeks, we are back within our "normal" range.

But let me tell you, having everyone give me, a strung out parent, different advice just about sent me over the edge. I understood each point of view, and they all reflected my own guesses as to what was going on. I felt defensive any time someone felt that they could give me an absolute answer.

There are no absolute answers, no matter who thinks that just one thing will make a person's body go from insane to normal.

I knew in my gut that it had to be a combination of factors.

And while that reasoning and very careful monitoring paid off, I still feel that it would be inappropriate to tell people that they were only partially right.

Saying, "I am smarter than you are," just seems a little rude.

I may even be smarter than this car!

Concussion

As I may have mentioned, M is the goalie for her field hockey team. Although she has never played before this season, her improvement has been marked.

Earlier this week, however, her team got a new kind of penalty that neither she nor I had heard of. A player fell on the ball, apparently covering it with her body.

I guess this was a serious one, because M was set up in the goal while the rest of her team was set up behind the midline. A girl on the other team was given a one-on-one shot at the goal.

The girl wound up and smacked the ball. It traveled in an upward fashion, hitting May on the front of her (helmeted) head.

It would have been a lot cooler if it had deflected right back into the field, but instead it went into the corner of the goal.

I wondered if it hurt. So when M returned for a time out, I asked her how she felt. She said, "I have a wicked headache!"

Somewhat alarmed, but not panicked, I asked if she wanted some Tylenol. She said she would be fine, and finished out the game.

It is three days later, and she still has the headache. She took "the concussion test", which she did not want to do ("It's so friggin' long!"), and it came back as "not a concussion" but with "22 symptoms."

While I wait to hear from the trainer about her recommendations regarding a doctor visit, I decide to look up information about diabetes and concussions.

To my dismay, I found something. It seems that diabetics do not "withstand impacts to the head" as well as non-diabetics. This is something I had never thought about, and is certainly not up there with the "diabetic feet" issues that are so frequently communicated to the diabetic community.

Why, you may ask, would having diabetes matter to your head with regard to impact?

Evidently, if brain cells contain high levels of glucose and magnesium, they are practically invincible. Unfortunately, since the diabetic body doesn't use glucose very efficiently, and depletion of magnesium nearly always predates insulin resistance (in Type 2),  we have the perfect cocktail of brain cells' natural defenses going down.

Not good.

In the meantime, I will wait for advice from the trainer and the school nurse.

And I will look up new and exciting things for me to worry about.

Field Hockey and Diabetes

Before I launch into this post, I would like to say that I am so very proud of M for trying field hockey. She loves lacrosse, and decided that she would like to stay conditioned so that she would be in good shape for the high school lacrosse team in the spring. Joining another team so that she could stay in shape seemed an excellent idea.

She had never played field hockey before.

After two weeks, she told the coach that she would like to try the goalie position. The coach assigned her a mentor to show her the ropes, and the following day she was playing goalie for a full Junior Varsity game. WOW! Talk about fearless.

You would think I would have learned all of the coping strategies necessary to deal with her participation in field hockey this fall, after all of the exciting experiences we had last spring in lacrosse.

Well, high school sports are really different from middle school sports.

First of all, in high school, they have practice or a game every day.

This means that M is never home before 5:00 pm on a school night. It also means that two times per week she isn't home before 8:00 pm.

For most parents, this inconvenience means setting aside another plate for dinner, and a grumpy kid trying to get his homework done before 11:00 pm. For many other parents, it means driving forgotten gear to games or packing extra snacks. It also means a lot more laundry and a higher water bill as your teen showers twice every day.

For me, it means all of these things, but it also means not knowing how M is doing that day until she comes home with a headache, or nausea, or battling a low bg that won't go away. All three of these situations occurred during M's first week of school.

Headache- Cause: who knows? Dehydration? Her bg seemed fine, although she didn't test it very often. She is supposed to test it 6 times per day. But, because of the tight schedule during the school day, she managed to test it only once during school, leaving her with tests before school, during lunch, before the game, and after the game/dinner.

Nausea and seemingly ceaseless low- Cause: High bg 437. M "just didn't check" her bg before the game. After the game, that 437 set off a roller coaster for the next 24 hours.

• correct 302
• eat and bolus 258
• bedtime check 198
• 6:00 am 49
• 6:20 am 98
• 8:00 am 62
• 10:00 am 81
• 11:00 am 160 (yea!)
• lunch 215
• 2:00 pm 173
• 7:00 pm 245
• 9:00 pm 181

Sigh.

These are hard-learned lessons for a fourteen-year-old. M is starting to remember how sick diabetes can make one feel. That nausea didn't go away for a long time.

These ups and downs are not as fun as they sound!

For now things are "normal". There are no practices this weekend. Hopefully we can use that time to level her out.

Thinking ahead, maybe we will need to designate another "official" time for her to check her bg during school. Then she might be able to stay on top of her bg levels before they develop into crazy bg swings.

In the meantime, I will try to concentrate on cheering M on during a game, rather than searching for evidence of a diabetic crisis looming on the horizon.

Cheat sheet

To: Coaches X and Y

From: Annoying mother

Re: My diabetic kid

There is a lot of information about Type 1 diabetes out there. If you are curious, you may check out these websites:

www.jdrf.org

www.diabetes.org

But here is the stuff you really need to know about My diabetic kid.

1)   M treats her diabetes by using an infusion pump, which can be removed. The pump is a remarkable machine that helps M calculate how much insulin she needs and administers it through a tube into the fatty layer just below the skin.

2)   There are blood sugar (bg) highs and lows. An average person’s bg is between 80 and 100. M checks her bg with another machine, called a blood glucose meter. She will prick her finger to get a drop of blood and apply it to a strip. The meter will tell her what her bg is in about 5 seconds. She will test her bg immediately before and immediately after a game or a practice.

3)   I am not as worried about bg highs.

Bg highs tend to cause long-term complications. When you hear about someone going blind, or having their foot amputated due to diabetes, it is generally caused by unchecked bg highs.

In diabetes world, anything over 200 is high. 350 is considered serious, over 400 is ridiculously high. If M checks her bg levels right before a game, and immediately after, she will not have time to have her bg climb that high. It takes several hours for a bg to climb to what we would consider a dangerous level.

SYMPTOMS OF A HIGH: Extreme irrational crankiness. Have her check her bg and treat as necessary She can do this independently, but a bg high is like serious PMS: You think you are upset for a valid reason. A quick 5 second bg check can put everyone at ease.

4)   Bg lows are more serious, and more likely to happen during a game.

M will try to snack before every game, and enter every game or practice with a slightly higher bg, because her bg tends to go down when she exercises.

Treatment for a low is candy. M will keep a stockpile of Smarties with her equipment, just in case. When her bg is low, a really sugary (in diabetes language – fast acting carb) treat will make her feel better within about 20 minutes. These include Smarties, and fully sugared soda, like Coke, or juice.

A low bg is under 70. Since she is exercising, she will need to eat something before it gets more dangerous ( in the 50s is considered dangerous, although she once hit 22 and revived herself by eating candy and checking her bg every 10 minutes)

M easily recognizes when she is going low. She will give you a signal that she needs to be benched, will check her bg, and give herself the appropriate treatment. She should communicate to you how long she will need to sit. Some days it is ten minutes, other days it could be the rest of the game.

SYMPTOMS OF A LOW: Stumbling, fogginess, shaky, hot. The shakiness really stands out. M is always bright red when she exercises. Do not worry about it. It does not signify anything on the diabetic scale.

5)   We have never had a hospitalization or diabetic emergency since she has been diagnosed. We have never had to use the glucagon. Glucagon is basically pure sugar in a shot. It will be in a bright red case in her equipment bag. It only gets used if she is not alert enough to drink a soda or eat candy. This has not happened to her as of this day.

HOW TO USE GLUCAGON: 1) Open the case, remove the syringe and the vial with the brown stuff in it 2) Inject all of the liquid in the syringe into the vial 3) Using a spinning motion, mix the liquid and the brown stuff together 4) Draw all of the liquid back into the syringe 5)Inject .75 (three quarters) of the syringe into her shoulder or the front of her leg. We want to hit muscle if possible 6) call 911

I will make every attempt to be at as many games as possible, to take the pressure off of you.  But as I said, M hasn’t let us down yet. Most of the time, she is just a normal kid, and aside from seeing her check her bg, you might forget she has diabetes. Chaperones, teachers, and coaches tell me that they forget all of the time, which is usually a good sign that things are under control. I just want you to be prepared in the unlikely event that something comes up.

Thank you for having a great attitude, and giving M a chance to play on your team. She is SUPER excited!

If you have any questions, please call XXX-XXXX or e-mail mye-mail@email.email

Ursula

Thanks for letting my kid feel normal.

First impressions

Sometimes I feel like I am not good at this whole "first impression" thing. Especially when it comes to explaining diabetes to those responsible for my child.

You see, one must strike a balance: reassure people that your child's head will not spin around, projectile vomit pea soup, or simply pop off - "she's perfectly normal!"; while simultaneously telling them that diabetes is a very serious and life-threatening disease.

I have tried several approaches, but none of them really seems to work very well.

The latest attempt I had to make was with M's field hockey coaches. During the first team meeting, M explained that she had Type 1 diabetes. The coach said, "Okay, well, maybe your mom can come talk to us about it tomorrow at practice."

When "tomorrow at practice" arrived, I dutifully waited until the other parents had left or were focused on their own daughters, and began chatting with the coaches.

I started with my usual, cool, laid back introduction to the conversation: " I am not sure how familiar you are with diabetes." I say this, because some coaches have extensive experience with diabetic athletes, and I do not want to talk to them like they are D-life newbies.

The answer from M's coaches today is that they know very little.

Now here is the decision I need to make: Do I need to emphasize that M is capable and in control, or do I have to first let them know how important it is that we keep her safe?

I start with the concrete. I point to her pump. I say, "M is a Type 1 diabetic, which means she needs this in order to live."

I realize my mistake immediately, as I see the coaches' eyes widen. I imagine their pupils dilating in fear. I hesitate, thinking that I may have chosen the wrong route here, but it is too late. I can't say, "Never mind. What I meant to say was, 'you don't normally have to worry about her'."

The die is cast. I must plow ahead.

I try to change tactics. "I want you to know that M has never had a diabetic emergency. She has never passed out or been in the hospital since her diagnosis."

This is better. The coaches nod. One of them says, "She has control."

I think, "Okay, good choice of words. Apparently all of those television commercials  for Type 2 diabetes paraphernalia have a use. They educate the public and give them appropriate key phrases to use." I smile and tell them, yes, she has control, and she is very responsible (at least on the field!) with her diabetes.

I tell the coaches that bg can go high or low, but the one I am most concerned with is the low, because a) it is more immediately dangerous and b) she tends to go low while playing sports.

Sure highs aren't great, either, but it takes a long time for M to "go high", and if she checks her bg before and after a game, there is no way it will go high enough to be dangerous.

I explain the symptoms for a low: spaciness, shakiness, faltering, feeling hot from the inside. I explain that M can identify when she begins to go low, and she will let them know that she needs a rest to check her bg and possibly have a snack, which is what will bring her bg back up.

The coaches are beautifully alert (perhaps because I gave them the death scare right at the beginning, for which I am still feeling badly), and nod. They suggest a hand signal that M can give them from the field to let them know she needs a break ("hang loose"). They encourage her to communicate with them and they let her know that she will not be penalized for taking breaks due to her diabetes. They nod and smile encouragingly. Things are going swimmingly.

Until I have to tell them about the Glucagon.

I hate the Glucagon talk!

Telling people, "Oh, and by the way, if she passes out, you will need to mix an injection and give it to her. Then call 911." is not fun. This is the part that stops the squeamish from having M over for sleepover parties.

The good news is that I can say, "M has never passed out, and we have never used the Glucagon. In fact, when we renew the prescriptions, we practice mixing with the old ones and then throw them away.

"If she checks her bg before and after practice and games, she should never have any problems, so you will very likely never have to use it. Really. Hehe."

But still, the coaches seem to me to get a little panicky (M disagrees with me here. She says that they seemed fine). They start discussing who would be authorized to administer the injection. Would only the trainer be able? Or could they?

This is new territory for me. M has never been to public school. She has only played sports in private clubs. Wherever she went, people just said, "Okay, but if you're here, you'll do it, right?" I didn't realize that we might have to follow some sort of special protocol here.

The coaches tell me they will look into it (to their credit, they learned by the following day that they are permitted to administer the Glucagon), and I spend the last few minutes of the conversation going back to reassuring them.

I feel very sympathetic about their uncertainty. And I understand their eagerness to understand things clearly.

I know it's stressful to watch someone else's kid when they have a potentially life-threatening condition. I remember taking a four hour hike with an asthmatic who left his inhaler at the bottom of the mountain. Not good.

So this is what I say: "Most of the time, you won't even know that M has diabetes. She will do all of the work, and she will act like a normal kid. The chances of her having any major problems are slim, but I just want you to know that if something does happen, you will need to be prepared."

They were truly terrific in their response. They seemed eager to learn more about the disease, and even asked M if she could share the "danger signs" with her teammates. M readily agreed, and we walked to the car: M content, and I worrying about making the wrong impression.

I worried that they were too worried.

On the other hand, I guess I should be relieved that they didn't worry too little. They definitely took it seriously.

But am I robbing M of having a "normal" relationship with her coaches? Am I stressing the coaches out too much?

I don't know, but I hope not.

Maybe there is a chance that I'll get it right next time.

You're right! I am sure that everything will be fine. Diabetes won't stop us! :)

Then again, maybe not.

Lacrosse and diabetes

So this has been interesting.

As I may have mentioned, M is an athlete. This season she is playing her favorite sport of all time, lacrosse.

Now, as you can likely imagine, running around is a big part of lacrosse, as is whacking sticks and scooping balls off of the ground. It can get a little rough.

So of course M loves it.

The first day of lacrosse practice this season, M opted to wear her pump as well as a purple hair extension that I had to comb into her ponytail, just so everyone could see. I think it was her way of announcing to her new teammates that M is here.

During practice, M learned how to manage having the pump clipped to her shorts or sweats, and experienced no problems. She did have lower bgs than normal, but we knew that was how her body worked after rigorous exercise.

M answered the obligatory questions about the pump from the other girls, and accepted compliments about her hair with grace. She began to get to know people.

After a month or so, along comes the first game. M is playing defense. She is running, blocking, stretching that stick so that nobody can get to the goal.

Then there is a moment of confusion on the field. A time out is called, and M comes running over to me holding the purple device in her hand, infusion set dangling from it.

She hands it to me, saying "I'll deal with this later," and runs back into the field.

I look at the device, decide that it is okay that she is not wearing it- considering her bg generally drops during athletic events- and watch the game.

Don't get me wrong. I am a little annoyed that it has pulled out of her body for the second time in a week. At the same time, I know we will have to figure this out: where to place it on her body, when to disconnect it, etc.

After a few minutes of watching the game, there is a startlingly loud vibrating sound on the bench next to me. It is the pump, much like a cell phone on vibrate, asking for attention.

I dutifully pick it up, look at it, and set it down. I am annoyed with the pump for taking my attention away from my amazing child as she races around the field. Looking at a purple box is not nearly as fun as watching your kid kick butt at a lacrosse game, is it? However, I am fascinated by this new noise.

Evidently, the pump is programmed to do this every fifteen minutes. It is one of those safety features that prevents people from not getting their insulin. It says, "Hey, dummy! I'm not pumping any insulin into you! You wanna do something about that?"

Fortunately, unlike baseball or horse shows, lacrosse is not a long game, so I only have to hear the angry buzz of the pump three more times.

After the game, we jump in the car, check the all-important bg (which is 85mg/dl) and decide to leave the pump off until M showers.

That was just easier.

From now on, the pump is disconnected during a game!

Knock the ball out! Woohoo!