A call from the nurse

So M has been in high school for about 6 weeks.

As with most high-schoolers, there have been some bumps along the way, but for the most part her transition has been pretty smooth, especially considering that her previous school was so tiny. And Montessori.

In a small Montessori school, diabetes was pretty easy to manage.

M could eat when she was hungry. She could check her bg any time she felt like it. She could leave her work for a moment without losing valuable instruction time.

In traditional public school, these options are not typically available.

For example, students are not allowed to eat in class.

Oh sure, because she has a "disability", M is permitted to eat in class. But if no one else is permitted to eat in class, then M feels like she is making a big stinky deal out of being "special".

To check her bg, M either has to check it in class, which causes a distraction, or excuse herself to go to the bathroom (Ick! High school bathrooms!) or the nurse's office. Leaving the room excludes her from valuable instruction time.

Not to mention that racing from room to room, visiting her locker, carrying and organizing a bunch of stuff, etc. gives her plenty of opportunities to "forget" that she has to take care of herself.

Overall, she forgets less than she might.

However, while at work the other day, the phone in my classroom rings. I pick up the phone and our school secretary asks me to hold the line for M's school nurse.

I go into "I-am-calm-and-will-not-panic" mode.

I try to sound pleasant as the nurse asks how I am. I say something foolish like, "I don't know. You tell me!"

She explains that M has had a couple of lows that morning, and that it took her a few hours to shake them. She had to lie down in the office for a while and missed her Spanish class and thus valuable instruction time. She is fine now.

The nurse goes on to explain that M has not been eating breakfast in the mornings, which is news to me. The nurse suggests that perhaps M doesn't have time in the mornings to eat.

I stupidly begin to argue with the messenger, "She has an hour..." but I cut myself off. It is not the nurse that needs to realize that she has plenty of time. I have met M before. She does not like to eat in the mornings. She never has. In fact, when she was in preschool, her teacher once called to ask me if I fed M breakfast in the morning, because she was always starving at 9:00 am. My answer at the time was, "I try to, but she only eats about two bites before she says she's full."

M is still the same person she was at three years old. She is never hungry in the morning. In Montessori school, M ate when she was hungry. The problem is that traditional schools need to have designated lunch times or students will lose valuable instruction time.

I tell the nurse that I will buy M some Zone bars so that she can shove something into her face before heading to school. The nurse thinks that this is a good idea.

I ask the nurse to please have M come visit her before the end of the day to check her bg again. She had a field hockey game that afternoon, and I didn't want to burden her coaches with a sick, weak, or unstable kid at an away game. The nurse agrees and I hang up.

It was my prep period, so I only had one student in the classroom with me, looking for extra help.

"Is everything okay with M?" she asked. All of my students know about M's type 1.

"Yes," I sigh. "At least it will be."

Mmmm. Breakfast!

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.

Paranoia

Recently, Joanne blogged about what is known in the DOC as "the thought." Her son is approaching the age at which her daughter was diagnosed with Type 1 diabetes. "The thought" has also been addressed by Kerri, a diabetic mother with a not-quite-two-year-old.

"The thought" plagues every parent that has diabetes, or has a child with diabetes. "The thought" is the idea that perhaps another one of our loved ones will be stricken with this disease.

You see, nearly everyone's Type 1 diabetes diagnosis has a similar story. " I felt sick/ nauseous/ fatigued for two/ three weeks. I was eating/ drinking all of the time. I was also extremely moody. I thought I was just suffering from a bad cold/ going through a growth spurt. After a while, I went/was taken to the doctor, where I found out that I lost 10/ 14 / 20 pounds in those couple of weeks. The doctor tested my blood sugar and it was 470/635/900. I didn't really know what that meant until I found out that a normal person's blood sugar readings are between 80 and 100."

(FYI: M's story is nauseous, fatigued, three weeks, eating, cold and growth spurt, 20 lbs, bg of 635).

But, as you can see, the symptoms of diabetes can easily be misconstrued as a bad cold, mono, or a mild case of the flu. In fact, in ancient times, there was only one way to identify whether someone had diabetes. One had to taste the patient's urine. If it was really sweet, then one knew that the person had diabetes and was going to die within a year or two. (Yikes!)

The point is, the symptoms of diabetes are very similar to those of many other, less life-threatening maladies. A list of such common symptoms can make things a little harrowing for those of us who have gone through the process of Type 1 diagnosis in the past.

Case in point: M has an older brother. Not one full year after M was diagnosed, he started exhibiting these symptoms: fatigue, pallid complexion, unusual thirst, and weight loss.

My mind went right to diabetes.

Now perhaps this seems crazy to a medical professional. After all, M is the ONLY person in my giant extended family with Type 1. The closest relative we could find that had it was my father's cousin's grandson. (What is that, her 17th cousin 7 times removed? I never understood how that worked...). Indeed I wondered if I might be a little paranoid.

But I felt better after talking with Bill.

I asked, "Do you think I'm crazy for thinking that our son could possibly have diabetes?"

I felt so much less crazy when he said this:

"No. I'm thinking that it could be diabetes. Of course we are thinking it could be diabetes. Why wouldn't we?"

Which is one of the many reasons I love this man.

The quick answer was to use May's bg meter on her brother to learn that his bg was normal, which it was. He just had a bad cold. But I will tell you that the 5 seconds of waiting for the result were the longest 5 seconds we had had in a long time.

I see diabetes everywhere. One week my dog seems especially thirsty. Does she have diabetes? I have a student who seems increasingly pale and tired. Does she have diabetes?

It's nerve-wracking.

"The thought" even makes people feel guilty for thinking it, as if by thinking it, we might make it happen.

"The thought" robs people of normalcy.

Well, at least the normalcy you can have while checking, double checking, and triple checking bg levels, adjusting insulin doses, tracking all food consumption, waking up in the middle of the night to make sure your kid is still breathing, etc.

But seriously, with all the punishment that comes with diabetes, it seems that "the thought" just adds insult to injury.

We must rally to find a cure for "the thought".

I don't know if this quite qualifies as a "cure" but maybe it's a start!

Flu shots

As I drive around scouting Back to School sales, I have begun to notice those signs cropping up outside of pharmacies.

Back in my more carefree days, I thought flu shots were for the elderly and infirm.

I have scoffed at flu shots, thinking that they were an unnecessary expense and a hassle. I had heard too many stories about people getting a mild case of the flu from the flu shot, and I thought that I would take my chances with the real flu.

My gambling paid off. My kids had never had neither the shot nor the flu. After 21 years of teaching, I have had the flu twice. Each time it was two horrible days of torture, and then it was over.

What doesn't kill you makes you stronger, right?

But then M was diagnosed with diabetes, and I had to reconsider my relationship with the flu shot. I hated to do it, but she was going to have to get it.

Every year.

Vomiting is just too big a deal when you are diabetic.

Another one of life's choices robbed by diabetes.

Charlie Kimball

Almost immediately after M was diagnosed with Type 1 diabetes, Bill and I learned that recently confirmed Supreme Court Justice Sonia Sotomayor also had Type 1. We were excited to be able to hold up a prominent role model with Type 1, so that M could see that, even living with Type 1, many possibilities were within her reach.

Sorry Sonia, just not cool enough for an 11-year-old. WE love you, though!

Unfortunately, M was 11 years old at the time, and a supreme court justice with Type 1 did not impress her.

Nick Jonas, on the other hand, did.

At least M notices you, Nick. Even if she prefers your brother.

She watched the Jonas Brothers TV show, and although she preferred Kevin, she admired Nick's handling of the disease. She even bought the Nick Jonas dog tags that helped support diabetic research. And she wore them almost every day.

A few months later she heard about Brett Michaels, some old 1980's rock star, who had Type 1, and she thought it was nice that he won Celebrity Apprentice and donated his winnings to the American Diabetes Association.

Live to rock, rock to live, Baby!

But this year, her father learned about a race car driver who had Type 1. Being a car guy and a mechanical engineer, he found the story of a man driving a car at over 200 miles per hour while managing his bg fascinating.

The man's name is Charlie Kimball.

"Hi, I'm Charlie Kimball!"

Now, if you think that what M goes through every day sounds like a royal pain, you should hear what a normal day at work looks like for this guy.

When she turns 16, M will have to check her bg before starting her car each and every time that she drives. This is so M can treat herself prior to operating the machine if she needs to. If she does lose consciousness, she might hit a tree, or another person/car/cat, and someone could be hurt or killed.

If Charlie has a dangerous low on an ordinary work day, he will likely do millions of dollars in damage to many cars, and most certainly injure or kill someone along the way. Charlie says that no one in the race circuits has ever expressed concerns about his diabetes. I suspect that they really don't understand the disease.

Of course, Charlie is VERY responsible and keeps a doctor on staff in the pits with him.

Instead of a water tank in the car, Charlie has a water tank AND a sugar-water tank, in case his bg slips down a little.

Well, you may be thinking, how does he know what his bg is? It's not as if he can pull over and check his bg with a lancet and some test strips. Well, Charlie has a CGM (continuous glucose monitoring device). This nifty device constantly reads bg, and indicates a trend line showing whether his bg is climbing or descending. Pretty nifty, huh? He straps the monitor to his steering wheel, and calls out his bg readings to his doctor over his headset. She then lets him know what corrective actions to take, if any.

I cannot imagine trying to drive 185 mph, two feet away from 35 other cars while managing any health problem, so my hat goes off to Charlie. Our whole family is - in the New England vernacular - "wicked impressed."

While at diabetes camp, M has heard from skiers and bicyclists who talked to campers about managing their Type 1 while pursuing their athletic dreams. This year, it was Charlie Kimball who came to speak to them.

M loved him. She said that he was interesting, kind, engaging, and that he was smart enough to know to repeat some of the quieter questions from the crowd so that everyone could hear.

As a mother, I appreciate Charlie Kimball. He has faced his diagnosis without fear, and has embraced the diabetic community. He, although diagnosed just four short years ago, has begun giving back to that community.

I wish Charlie the best of luck. Our whole family will be watching him!

504 plan

I have mentioned before that I teach in high school.

I may have also mentioned that my kids attended Montessori schools and my older son attended a Catholic high school.

I have never really had the "public school" experience before. At least not from the parenting end.

Now, as a teacher, I receive 504 plans at the beginning of every semester. These plans tell me which student needs special accommodations, eg: make sure this child doesn't eat peanut products, make sure this child is able to use the bathroom as often as he likes, please allow child to eat in classroom, etc.

Now that M is entering public high school, I realize that she probably needs a 504 plan.

The problem is this: I didn't know I was supposed to write the darn thing!

Now, don't ask me who I thought was supposed to write it. I guess I thought that some medical professional would do it. Our DNE, the school nurse, somebody else that wasn't me. Someone that know what they are doing.

Our DNE gave me a sample 504 plan, prepared by the ADA and the DREDF. The sample was lengthy (8 pages!) , and sounded punitive: "Do this or else!" - not exactly the coalition-building language I was seeking. Being a teacher myself, I found the approach of the sample a little offensive. It assumed that I couldn't be trusted to know that if a kid leaves for health management reasons, he should not be penalized.

So I did what any ambivalent parent might do: I tried to get out of writing it.

I e-mailed the guidance counselor who helped M put together her schedule, and asked if I really needed a 504 plan. After all, I reasoned in the e-mail, we interviewed the nurse before we even decided to enroll M in this school, and decided that she was capable. M is independent with her diabetes management so, aside from the occasional snack in class or walk to the nurse' office, she should be fine. Couldn't I just e-mail the teachers, explain what's going on, and talk with them like civilized human beings?

The short answer was no.

"A 504 plan is a very important legal document that protects all of the individuals involved."

I sighed, understanding that people feel better when there is a form filled out somewhere. I also understand that a 504 plan can simplify things for people new to diabetes.

But I don't wanna! It looks hard. And redundant.

I think I would be far more keen to write and implement a plan if M were a frail 6-year-old with Type 1, rather than the robust 14-year-old that she has become. She is far more independent and less distractable than many children who are younger. Also, since most people are diagnosed with diabetes as children or young adults, it makes sense that more children are diagnosed with Type 1 diabetes by the time they hit high school. As a result, I think that a lot more teachers and staff have been exposed to and understand Type 1 diabetes at the high school level.

I pondered my justifications for being a lazy butthead, and continued reading the e-mail, disappointed.

The guidance counselor indicated that the e-mail I sent him would be forwarded to M's regular guidance counselor, so that he could be in touch with me. The regular guidance counselor and I would write the 504 together.

Well today, I got an e-mail from M's regular guidance counselor. This is what it said:

We have several students in the school who have diabetes and other medical issues. They are managed by the school nurse- in my opinion - extremely well. All teachers are notified and the nurse develops a close relationship with the student with daily check-ins as needed. This is available without a 504 plan.

Of course as a parent you have a right to a 504 plan if you would like. I guess I would suggest that maybe we start off without one and see how things go. We can always develop a 504 plan at any time should any party feel it necessary.

Let me know how you would like to proceed or if you would like to come in and meet me.

And I think, "YES!"

Believing that my laziness has paid off, I triumphantly shoot the regular guidance counselor an e-mail, telling him that I think that the "wait and see" approach is a great idea.


But then I realize that laziness is not going to happen. I have decided that I will print up a diabetic cheat sheet for M's teachers, like I did for her coaches, and give them my contact information in case they have any questions.

I comfort myself with the thought that it will probably take less time to write than the 504. And hopefully the language will not be punitive.

And then we'll wait and see. 

Of course, we still have about 20 other forms to fill out!

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.