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!

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.

In the beginning

If you are the parent of a Type 1 diabetic, this story will seem familiar to you. My daughter, M, was 11 years old. It was spring, as much as March can be spring in New England. She started feeling crummy, as kids in New England often do in the spring. She had a sore throat, was sluggish, and slept a lot. She was also cranky. Very cranky.

 My son, five years her senior, had gone through just this sort of thing in the past. It normally signaled some kind of stress for him. He merely needed rest, and he was up in a day or two. With that in mind, I gave M a couple of mental health days.

After her days of rest, she seemed better. She was eating. A lot.

We joked that she was eating like she had a tapeworm. All of her friends were starting to get thinner and taller, and she seemed to be doing the same thing. "It must be hormones," I thought. I certainly wasn't worried about it. We watched her eat and eat and eat. She never seemed to gain weight.

The Sunday after her mental health days, M went up to the front of the church to sing in the "choir." I put choir in quotes, because it is more like a rock group at the mass that we attend. It's very loud. About halfway through the mass, I saw her sit down in the chair normally reserved for a girl who had intermittent leg pain. She looked like she was going to throw up. Then M swiftly got up from the chair and passed through the door to the sacristy. For those of you who are not Catholic, the sacristy is the back of the church, behind the "stage" where the priest gets ready before mass.

At this point I was anxious. I decided to count to 100 before charging up in front of everybody and running into the sacristy to see why my daughter went in there. At 87 she emerged, with a water bottle in her hand, not looking much better, and stood for the remainder of the mass to sing.

"What was that all about?" I asked her on the way home.

"I don't know," she said. "I just felt dizzy. I feel okay, now.  It was weird."

We decided that she probably was thirsty and that she had better stay hydrated.

Don't judge me. M had always been a normal kid, health wise. I had no reason to suspect a major diagnosis was coming.

The Wednesday and Thursday after mass, she felt crummy again. I let her stay home. She was eating and staying hydrated. There was no vomiting. Just malaise, I thought.

The following weekend was Easter weekend. If you are hardcore like me, you attend the Triduum: Holy Thursday, Good Friday, Easter Vigil, and Easter Sunday. Our particular church has a large group of hard core "high holiday" Catholics in it. Both of my kids are altar servers. They both volunteered to serve during the Easter Vigil mass.

The Easter Vigil mass, for those of you who don't know, is a big, stinky deal. It usually lasts about three hours. People are baptized and confirmed into the faith that night, on top of several readings and the regular mass stuff. Also, there is a ton of music. M's job was to hold and carry around a big-ass candle, weighing about 10 pounds. Carrying a candle of ten pounds for three hours would normally not be a big deal for her - M is the strongest and most athletic member of our family - but tonight, it gave her some grief. At one point, she stumbled and nearly fell off the stage. But, you know "No harm, no foul." It just looked like a stumble until I put the pieces together later.

The Tuesday after Easter, she did not feel well again. Being a high school teacher, I asked her all the typical health and eating disorder questions.

Me: "Have you been peeing a lot?"
She: "No."
Me: "How about in the middle of the night?"
She: "Only once in a while."
(I later found out that I was asking the wrong person. Her brother's room is right next to the bathroom. After she was diagnosed, he told me that she was going three or four times a night, waking him up in the process.)

Me: "Have you been throwing up?" (I'm thinking eating disorder. She eats so much and she's so thin!)
She: "No, but I've been nauseous." (Phew! She has no idea what I am talking about!)

Mono had been going around my son's school, and my daughter had been exposed to a number of carriers. After all, we had spent time with the FIRST robotics team every weekend for 9 weeks. I decided to call her doctor and make an appointment to see if she was okay. He was available the next day after school.

When she woke up the next morning, she fell down the last four steps on the staircase. Now this was weird. She is the most graceful person we've had in our family for three generations! I was worried. She looked pale. I was glad we were going to see the doctor.

We brought her after school. My son installed himself in the waiting room while my daughter and I went in to see Doctor G. Doctor G. is a younger guy, and I love him because he never claims to have all the answers. He describes options, risks and opinions as if we are reasonable adults. He speaks to my children with respect. Before we see Doctor G, my daughter got her height and weight measured. This is the point at which I start becoming a shaky, irrational mother.

M weighed 83 pounds.

"So?" you might be thinking, "That sounds like a normal weight for an 11-year-old."

Well, maybe it is if that 11-year-old didn't weigh 103 pounds seven months ago at her last check up.

20 pounds. She had lost 20 pounds.

"Maybe we read it wrong at the last weigh-in," the nurse suggested.

"No," I said, tight-lipped, "I am pretty sure you didn't."

I wait in concerned silence for Doctor G. to arrive.

After weighing her again, and confirming that she does, indeed, weigh 83 pounds, Doctor G asked questions of M and myself. We answered the questions as best we could. Doctor G decided that we needed to run some blood tests. He wanted to test for diabetes, thyroid, and mono. We were sent to the lab immediately.

Here is where the fun begins. M is absolutely TERRIFIED of needles. This is not funny. She was fine with them when she was little, but around the age of six, she suddenly developed a fear of needles and dentists. This is not normal for me. I am a 'suck-it-up-and-deal-with-it' person. I have to work very hard to muster up any sympathy for my child in these situations. I actually brought her to therapy to help her come up with coping strategies because I am so inept at providing with the tools necessary to calm a panicked child down. They're just needles! It's temporary! Deal with it!

What a phlebotomist looks like to M.

I will spare you the details about how M kept moving her arm away from the poor woman trying to draw her blood, crying, and periodically shrieking. Let's just say it took nearly two hours to get the blood out of her. I was physically and emotionally drained, and so was M. I have no idea how the phlebotomist fared. I assume she went home to a stiff drink and regaled her seven cats with stories of my screwed up child and her inept mother.

On the ride home, M asks about each of the diseases for which she had been tested. I explain to her about hyperthyrodism, which I had after the birth of her older brother; and mono. When I began to describe diabetes, her older brother said, "Diabetes would be your hell, because it's needles, needles, needles, all the time."

M's response: "Go mono!"

After a draining afternoon (It was nearly 7:00 pm by the time we got home), we all ate a meager dinner, and M went to bed at 8:00 pm. I was exhausted. I took one look at my pile of papers to correct, and realized that I was in no fit state to properly evaluate the writing assignments my students had turned in that day. I always hand back my assignments the next day, but I just couldn't summon the energy to lift the stack out of my satchel. I decided to have a beer.

At 8:45 the phone rang. It was one of the Nurse Practitioners at the clinic. She dropped the bomb. M had diabetes. Could I please bring her in to see Dr. G first thing in the morning?

Of course I could.

I hung up the phone and told my husband, B. I cried. We sat on the couch holding each other. We began to mourn the loss of a potentially easy and wonderful life for our daughter. We agreed that it sucked, but we would deal with it.

At 9:05 the phone rang again. It was Dr. G. "I have looked more closely at M's numbers, and I need you to take her to the Emergency Room right away."

The Mama Bear in me came out.

"No! Absolutely not! She has had a rough day. She's sleeping. She needs her rest. Let her be normal for one more night. She can come in tomorrow morning as we planned."

Silence on the other end. Then, "Ursula, I know how you feel. I am a parent, too. But knowing what I know, it would be irresponsible of me to say that you can keep her at home even one more night."

His words frightened me, not just because of their content, but because he had used the same quiet, calm, voice that I use when I am very worried. I knew we had to go.

I hung up the phone and told B what was happening. I called work to arrange for a sub for the next day while he woke M and got her ready to go. I could hear him telling her, "You'd better bring a book. They usually take a long time getting you in to see the doctor..."

I woke our son and told him that we were taking M to the hospital. His face went ashen at the diagnosis. I told him we would keep him posted and see him in the morning. Then we left.

Our hospital is about 25 minutes from our home. When we arrived the waiting room at the ER was packed with people. There were roughly 40 people there. Some were in wheel chairs, some were vomiting, some were holding their heads. Some looked fine. It was Wednesday, April 15th. Were these people looking for a good excuse for not filing their taxes on time?

B dealt with the paperwork and check-in for M, while she and I found an empty seat. She placed her book on the seat next to mine and went to the bathroom. Before she had even returned, they called her name. I knew this was not a good sign. I know what triage is, and I know that M was just escorted in before 40 some-odd people.

She was brought to a bed and asked to lie down. They tested her blood glucose. 635 mg/dl. She also had these things called ketones, which I had never heard of.

I only knew enough to know that was bad. It would take a few days before I realized how bad it was. I have since heard about people bringing in their kids to find bg levels of 900 or more. I am astounded at how resilient the human body can be.

I have to say that the ER doctor and the nurses were absolutely excellent with M. One nurse, completely sympathetic to M's fear of needles inserted a port so that blood could be drawn from it, and all shots could be administered into the same place without her feeling it. The doctor called me "Mom."

"Mom?" she said, gesturing me out into the hallway.

"Yes?"

"We have her blood glucose down to 450, which puts us in a position to be able to transport her."

"Why do we need to transport her?"

"Our facility is not well-equipped to handle children with diabetes. We would like to send her to DHMC."

(Using my quiet, calm voice) "Will this be by car? Or by ambulance?"

"By ambulance"

"Okay."

This is the point at which I realize I must call my mother. She needs to know so that she can be prepared to assist me with whatever plans I need to make for my son. Plus she would be extraordinarily pissed off if I didn't call her.

As I picked up the phone, the doctor showed up again. "Mom?"

I entered the hallway, saying, "Doc, I think we are beyond the possibility of you surprising me. Just tell me what it is."

"There are no beds at DHMC. We are going to have to send her Children's in Boston."

(Calm, quiet voice)"By ambulance?"

"Well, we are having trouble locating an ambulance at this time. If we can't find one within 20 minutes, we are going to send her by helicopter."

"Oh. Okay. Keep me posted."

I called my mom. She could tell, not just because I was using my quiet, calm voice, but also because I was calling close to midnight, that I had something important to tell her. I vaguely remember her saying "How did this happen?"I told her I would keep her posted and call her in the morning.

In a few minutes, the ambulance was arranged. Two men I had never seen before arrived to take my daughter away, and my husband called 'shotgun' on the ambulance. That left me to go home, pack clothes, and tell my son that we were going to be gone for the next few days.

Our lives would be changed forever.