The Seizure Story

No, Joseph did not experience a seizure. Thank God.

But I did hear of another diabetic child who did.

On Tuesday night I attended a local JDRF support group meeting that began with folks talking about problem foods. You know the ones that send your kid’s sugars through the roof, and keep them up there way beyond their (and your) comfort zone. Well, after listening to a number of these stories, I chimed in with our recent attempt to bring Indian food back into Joseph’s repertoire of “foods we know how to bolus for.” Clearly, I was overconfident. But we were having a lot of success in matching bolus amount, time and duration with other challenging foods. I really thought we were ready to tackle the Indian food.

And I was dead wrong.

Joseph was in the 300s three hours after he finished his meal. And he stayed there for over five hours– despite our attempts to correct. Luckily he did not spill any ketones. But it was a lousy night for everyone. The morning was not much better when Joseph discovered that he had had an accident overnight. And when you have a 2-year old sister who potty trained herself three months earlier, and hasn’t had a nighttime accident since, wetting the bed at 9 ½ is pretty harsh. He knows the reason. It’s nothing he can prevent. But I know it bothers the hell out of him just the same.

Everyone tried to give suggestions on how to handle the Indian food quandary. Some said just eliminate it all together, but the kid loves the stuff. We all do. And I’m determined to make it work. For now, we just won’t give it to him at night– when he’ll be inactive for hours following the meal.

Anyhow, the meeting continued with all of us talking and thinking about those things that push up our kid’s sugars– until Eileen, the group leader, said quietly “Sean had a seizure.”

Everyone stopped talking.

She continued in a low, shaky voice. “He’s never had one before. It really caught us off guard. It happened early in the evening. He’d been out playing golf earlier that day – Sean is on the high school golf team, you know. He wasn't any more active than usual. He didn't eat any more or less than he typically has in a given day." Eileen shook her head as she said these things. She stopped talking a moment.

Then, as if suddenly remembering that we were all there in the room with her, she went on.

"My husband was walking by his bedroom and heard a gurgling sound coming from inside. He opened the door and saw Sean lying there, saying nothing, but making these awful sounds. He called me into the room.

We tried to get him to eat something. We even offered him chocolate– and that’s when we knew it was serious because he didn’t respond. And Sean LOVES chocolate. Next we tried to put cake icing in his mouth, but it didn’t seem to do anything. Finally, I realized we needed to give him the glucagon.

My husband said “Do you know how to do that? Because I don’t have any idea.”

I ran, got the kit – and thank god I had just practiced doing this recently with an expired kit, because I knew exactly what to do. I injected the liquid into the powder, shook the vial, and drew the combined solution into the syringe.

Then I panicked a little. I knew I had to give it to him in a muscle, but I couldn’t remember if it had to be in his buttock or thigh, or if I could give it to him in his arm. Sean’s a big kid. And in the state he was in, I thought it would take a while to get his pants down. My husband quickly looked through the instructions and found that we could give it in the arm. I gave Sean the shot, and within minutes he was back. We still called 911. The paramedics didn’t want to move him right away. They wanted to be sure that he hadn’t had an epileptic seizure. Eventually we made it to the ER where they observed him for several hours to make sure his blood sugar came up and stayed up. We still don't know exactly how low Sean's blood sugar was at the time of the seizure, but right after we gave him the glucagon we checked him-- he was 50.”

It was very quiet after Eileen finished talking. After all, she had just described an experience that every one of us feared more than almost anything else connected with this disease-- the moment when your child's life is at stake and YOU have to act quickly and correctly in order to prevent brain damage or death.

Up to that point I'd tried to avoid even thinking about the seizure possibility. But when I was finally able to speak, I asked Eileen if she'd brought any of those expired glucagon kits to this meeting.

She smiled, then passed out the kits.

He Found Out

Last week Joseph and I went out to pick a video for our "Friday Night Family Movie," and to get some takeout for dinner. Joseph was in a terrific mood-- and with good reason. We had just gotten him a long-overdue new bike the week before (he's getting so tall!); he recently started playing little-league baseball and was really enjoying it; and we were on a roll with his blood sugar control-- no big highs or lows for almost a week.

I was feeling pretty darn good myself.

Anyhow, as we were walking toward the video store entrance, I put my arm around Joseph. Surprisingly, instead of checking to see if anyone was looking at us (and pulling away if that was the case), he just slipped his arm around my waist, looked up at me and smiled.

Man. I love this kid.

So we walked in the store, browsed the new releases, and found nothing. Eventually we settled on My Big Fat Greek Wedding. Joseph said he was up for a comedy. I promised him that he'd love it.

Next stop was Noodles & Company to pick up dinner. Just after placing our order, we sat down to wait for our name to be called. It was then that Joseph noticed the poster on the wall behind me. In large letters were the words "Tour de Cure." It was a bike-ride fundraiser sponsored by the American Diabetes Foundation. Joseph jumped out of his chair to get a closer look at the poster. "Mom, we should do this! I think I saw flyers near the cash register." Before I could say anything, he disappeared into the crowd of people waiting to place their order. And before I could call him back, Joseph reappeared holding a small stack of pamphlets.

"Mom, we could give these out to my friends. It says you can form a team. What do you think we should call ours?"

"How about 'Joseph's Crew'?"

"Nah. I don't want it named after me. I know. How about 'The Madison Mad Riders'?"

"Very cool" I said.

So, he sat back down and began studying the pamphlet in earnest. And that is when he found out.

"Blindness" I heard him say in a barely audible voice. “Heart disease.” Quickly I opened one of the flyers and saw what he was reading: "Diabetes can lead to blindness, heart disease, stroke, kidney failure and amputations."

I went cold.

"Joseph, these are the complications of uncontrolled, untreated diabetes. That is NOT you.” The words just tumbled out. And with every one my heart broke a little more as I realized there is no going back. He knows.

His head was down as he continued looking at the page. He said nothing.

"Joseph, the ADA needs to motivate people to ride for a cure. If they write that diabetes is a condition that can be controlled with good habits, careful monitoring and insulin, then motivating people to raise money for a cure would be much more difficult."

Joseph was very quiet on the ride home in the car. Stupidly, I said that dad would really be psyched about doing the ADA bike ride with us.

“I don't want to do that anymore.” That was all he said.

Since last Friday I've felt horrible about not having sat him down early on and told him about the complications of diabetes in more detail. Since his diagnosis I have stressed the importance of good control, and alluded to the fact that people with diabetes who do not take care of themselves can experience other health problems-- while those with good habits tend to be healthier than many in the general population. Joseph's always been so good about checking his sugars, bolusing, and just really being in tuned to his body. We haven't had a problem (so far) motivating him to work with us. And he's been great about letting me know when this stuff is getting to him.

But all this time I've felt like I was keeping some sort of terrible secret from him. When I raised this issue in the past with the folks at his clinic, they said that "he's still young, and he hasn't had diabetes for very long. There's no need to give him anything more to worry about now." And Joseph does tend to worry about things. Eight months ago, when we picked up his prescriptions for the first time, he expressed surprise and concern over the cost of these items. "How am I going to pay for these things when I grow up?"

And now there's blindness. Heart disease. Kidney failure. Amputations.

Last night Joseph was thumbing through our Calorie King pocket carb counter. I took the opportunity to point out the section in there on diabetes. It mentions complications, but prefaces a description with the words “if untreated, diabetes can lead to... " I said "you're getting insulin, you are being treated for this and... ”

“Mom, I'm not scared.”

“What?” I said.

"Mom, you already told me all this. I really understand."

And with that he gave me a little smile and went back to looking at the carb book, shaking his head a bit as he turned the page.

The Day the Cannula Came Out

Joseph called from school earlier today and, in a slightly panicked tone, told me that his cannula was out.

Huh. Well, that's never happened before.

He then said "mom, you've got to come to school right away and change my set."

Maybe it was because I'd gotten a bit of sleep the night before, but I actually didn't internally freak out.

Instead, I said "Calm down honey. Let's check your sugar and see where you're at first. Do you have any idea how long the cannula's been out?"

"No, I just noticed when I went to the bathroom that it was sticking out."

While I waited, Joseph did a finger stick. His blood sugar was 146. "Super," I said. "I'll be there within half an hour. Just hang tight."

A quick note here before I continue. For those of you who are unfamiliar with the term "cannula," this is the very small (6 mm long), very thin, teflon tube or catheter that is inserted with a guide needle into my son's abdomen, hip, buttock or thigh-- anywhere he might have a little fat. (Click here for sample photos of infusion sites.) The needle is then removed, while the cannula stays in place just beneath the skin. The cannula is attached externally to a length of detachable tubing (in Joseph's case, 23 inches), that is in turn, connected to his insulin pump-- a device that looks like a small pager, or as Joseph prefers, an Mp3 player.

Voila! When he eats or is running high, we program a bolus amount, then insulin travels from a cartridge inside the pump, down the tubing, into the cannula, and then on into his body. Here, the insulin essentially “unlocks” the cells in his body so that the glucose in his food can be absorbed for energy and growth– as opposed to spilling into his bloodstream and urine.

Now, because Joseph's cannula was out, the concern is that his blood sugar could rise quickly-- this is because the pump only gives him pulses of short-acting insulin as his basal or "background" insulin. And without the safety net of a longer-acting insulin on board, he would be much more vulnerable to DKA (diabetic ketoacidosis).

And that is REALLY bad.

The cells in his body would be in a state of lock down– completely unable to use the glucose coming in from his food. And if this gets out of hand, his body goes elsewhere for energy–- to the fat cells. When fat cells are burned for energy they release toxins, or ketones into the body. You get enough of these buggers and you can become very, very sick. Ever hear of a diabetic coma?

Soooo, cannula out. Not good.

It took about 20 minutes to close out Evan’s game of “beauty shop.” This is one of her favorite past times. When I got the call from Joseph, she was in the process of giving me “blue and pink highlights." Ah well. Leaving in the middle of our game was not a popular decision with the 2-year old toddler. But what can you do?

So, off we went. Ten minutes later we were at the school. Walking into the nurse’s office, I spotted Joseph sitting on the short, black vinyl chaise– the one where the kids who feel sick lie down. He was quietly reading “Harry Potter and the Order of the Phoenix.” And he was all alone. Which really bothered me. But after we checked his sugar and found that he was 153, I felt better. And since school was going to let out soon, I decided to take him home right then to do the set change.

At home, Joseph took the whole cannula popping out in stride. So did I. We were scheduled to put in a new set that day anyway– this incident just moved things up by a couple of hours. And stuff like this is going to happen. Hopefully, not often though. It’s really scary when you start to think about what this might have done had it happened earlier in the day– and if Joseph didn’t notice.

But he DID notice. And he was fine.

Counting Carbs, Counting Sheep

Diabetes has it's ups and downs. That's a fact. With each high blood sugar come thoughts of future complications, and with the lows there is the urgent need to act-- not to mention the fear that too many lows will result in the dulled awareness of a blood sugar drop.

Okay this is what comes of starting a blog after a long string of sleepless nights. Doom and gloom. Nighttime blood sugar checks and a teething two-year old are a deadly combination. Under these circumstances diabetes management becomes diabetes overload real fast. I try to make it look easy to Joseph. I tell him "we're getting there. It's just gonna take some time to get this pump thing down. Remember how it was adjusting to shots?" I don't want him to fear the future when he will have to manage this himself.

And we really have made a ton of progress in all of this.

For example:

One month after diagnosis we got Joseph off of NPH and on Lantus. This was HUGE. While taking NPH, Joseph had to eat the same number of carbs at the same time every day. He had to eat a morning, afternoon and bedtime snack-- hungry or not. In other words, we had to feed the insulin in order to prevent the lows. NPH has a rather nasty peak in insulin action. For one month we were slaves to it. And Joseph absolutely hated the regimen. But the alternative, Lantus, required that he get a shot at school. He wasn't ready for that. It was all so new. And he was starting a new school. Riding the bus for the first time.

Things changed though. He was doing his own finger sticks in the nurse's office before lunch every day. Suddenly, the idea of getting a shot at school didn't sound so bad. Especially after I described how different his life would be while on Lantus.

All right, I need to stop right here a moment and rant about NPH. I can't help it. This is really a sore spot for me. Why in the world are newly diagnosed diabetics still being put on this insulin? After all, Lantus is FDA approved for children 6 and older (it's not approved for children under 6 because there have been no studies conducted within this group). Furthermore, I am astounded at the number of parents I've encountered with children who are STILL on NPH six months, a year, or more after diagnosis. And, most of these parents have never even heard of Lantus. Now that's just messed up. Why aren't their doctors telling them about this option? I understand that Lantus requires an extra shot, but it works so darn well as a long-acting insulin. One shot at bedtime (or in the morning) gives a very stable background insulin for 18-26 hours with virtually no peaks in the majority of people who use it.

Lantus has been called "the poor man's pump" and we quickly discovered why.

Joseph's blood sugars stabilized for the most part. Sure, there were still highs and lows, but not so many extremes. Even better, he felt free. He could eat when he wanted, sleep in on the weekends, snack or not. It was his choice.

Now at this point you might ask, "why did you put him on the pump if Lantus was working so well?" Yes, Lantus at bedtime and short-acting Novalog to cover the foods he ate worked well indeed. But we wanted more. And the syringe is such a blunt tool. I knew we could never achieve the kind of control or flexibility he could get on the pump if we stayed with his existing regimen. Joseph was (and still is) extremely insulin sensitive. And he was (and again, still is) in the honeymoon period of this disease with a total daily dose rarely more than 8 units. I'd read in several places that tight control early could actually extend the honeymoon, delaying the destruction of what little remained of his beta cells. Why do that? Because taking in less insulin is healthier. Because a cure might be found that could involve residual beta cell function. Because I wasn't -- and am still not -- ready to surrender my son completely to this disease.

So we pushed for the pump. And after several months of wrangling with the nurse practitioner at his clinic, we got it.

A Little History

So, I realize I started this blog sort of in the middle of things. Talking about basal rates, bolusing and blood sugars without really telling how we got here. I guess "here" is just over seven months post diagnosis. Astonishingly, Joseph is still considered "newly diagnosed." It feels more like we've been doing this forever. Although, every once in a while I'll come across a photo of him before he became diabetic. And it's almost like a blow.

Last August, I was preparing to go back east to visit my family. All six of my siblings and their families live in Massachusetts. On Monday the 16th-- just five days before I was scheduled to fly out with Joseph and Evan-- my younger sister Teresa called to tell me that our older sister Mary had breast cancer. It was good that I was coming out on Saturday.

On Tuesday, still reeling from the news about my sister, I received a call from a close friend here in Wisconsin. It seems that her 4-year old son had suffered an unexplained seizure that lasted nine hours and was only brought to a halt by putting her child into a medically-induced coma. Jan (that's the mom) was at the UW Hospital with her son. At this point I remember saying that if anything else happens my head is simply going to explode.

All this time I worried about the fact that Joseph had recently begun wetting the bed.

Bedwetting or "enuresis" runs in my family. My younger brother experienced this very same problem as a child. For the first two weeks I felt sure that's what it was. After all, Joseph was eight-- a common age for this issue. He seemed fine. Maybe a little thirstier than usual, but it was summer. He certainly wasn't guzzling water, just coming inside for frequent drinks. And he did need to pee an awful lot, but then again, he was drinking all that water...

But then I thought he looked a little thinner. Joseph's a lean kid anyway, but one morning during that awful week, his collar bone looked more prominent than it should. Ryan said "he's probably going through a growth spurt. " That was always his pattern-- a little paunch, thin out, then shoot up. But I brought the stick up out of the basement-- the one we use to mark off Joseph's height. He hadn't grown since the last mark. Two months earlier.

I looked on the internet. Scoured sites that discussed bedwetting. I'm a real research junky. If there is a question about anything, especially a health issue, I will search for the answers I need on the web. And I will be thorough. And yet, whenever I saw the word diabetes highlighted on any of those enuresis sites-- and there were many-- I ignored it. I never clicked on that link. I wouldn't even look at the symptoms. I wouldn't, that is, until I spoke again with my sister Teresa that Wednesday. I told her about Joseph and my concerns. Immediately she said I should have him checked for diabetes. Her sister-in-law's son was diabetic. She was very familiar with the signs. Then she got another call and put me on hold. I hung up the phone, went online to a bookmarked site on bedwetting. I clicked on the link.

Joseph's pediatric office agreed that, given his symptoms, he should be seen before our trip. I was to bring him in the next day-- Thursday, August 19th. That night Ryan assured me that our son did not have diabetes. But then I reminded him of what he told me the previous week-- that my sister did not have breast cancer.

The next morning I told Joseph we were going to see his doctor that afternoon, but first we would go shoe shopping. He needed new athletic shoes before the start of school in two weeks. Joseph, Evan and I had a great time. The kids tried on shoes and ran around the store. It just seemed so normal. Really, nothing could be wrong with my son.

Ryan came home for lunch so that he could take care of Evan while I took Joseph in for his appointment. The resident who first examined Joseph didn't seem too impressed with his symptoms. He had only lost two pounds since his last visit. Nothing to be concerned about. "It's possible he has a UTI" (that's what I told Joseph, that's what I'd hoped it was). Next, Dr. Edmonson came in, handed Joseph a small plastic cup, and asked him to go to the restroom and bring back a sample. Joseph was very quick. And so was the doctor. Not five minutes passed before the doctor was back in the room-- telling us there was sugar in Joseph's urine.

"He has diabetes. We'll do a blood test as well, but even if it comes back normal, the sugar in his urine almost always means diabetes."

A nurse came in next and poked his finger with a lancet. She squeezed the tip of his finger until a small bubble of blood appeared. Then she placed his finger so that it almost touched the end of a strip that had been inserted into a glucose meter.

5 - 4 - 3 - 2 - 1.

Joseph's blood sugar was 482. I broke down. So did Joseph. He cried, saying that he didn't want to have diabetes. "Mom, I'm scared."

We held each other, having absolutely no idea what this all meant.

My Boy

High Again

After almost two weeks of fairly steady blood sugars, the party's over. Joseph just called from school to give me his before-snack sugar. It was 346. Dang! I told him to correct. With the pump this means entering in your blood sugar and then bolusing the suggested amount of insulin. I also asked him to drink a large glass of water. God I hope this works. He said that his site still looked good... this is where the tubing connected to the pump enters his body. No signs of air bubbles in the tubing. Aw hell. I'm already getting tired of troubleshooting this pump and it's only been two months! Maybe it's because I've insisted we be completely anal about testing-- we test 10-13 times every 24-hours. This includes checks at midnight, 2 or 3 am, and 5 or 6 am. Have I mentioned the lack of sleep here? Thank god Joseph sleeps through the overnight checks, but his fingers are looking rough.

Anyhow, we'll see how well his correction worked in another hour and a half. In the meantime, it's a beautiful sunny day, and it would be nice to take Evan out for a bike ride. But I'm so dog tired. And Joseph's sugar might not have come down....

Update: Joseph's correction worked! Yay! He was 142 before lunch. And with that, I've gotten a second wind. I even managed to take Evan on a bike ride after all. And it was glorious!

Home Alone... Well, Not Exactly

My husband Ryan just left for a business trip.-- a week in Salt Lake City. I'm here alone with the kids. Joseph is down the street playing with his friend Zachary. Before he left he checked his blood sugar (it was 142), had a snack, and a bolus of insulin to cover it. My 2-year old daughter Evan is in the living room having a lively conversation with her hands while she sits huddled behind the couch. There seems to be an argument going on back there. I decide to stay out of it.

So I'm here, thinking about the week ahead. Evan still has a nasty cold. And Joseph's sugars have started creeping up again. He just started using an insulin pump two months ago. I'd read in several places that starting on the pump is like being diagnosed all over again.

Yes, it is.

We've been on a wild rollercoaster of highs and lows. But Joseph's first night on the pump was amazing. His blood sugars that evening were good. However, at midnight he dropped to 76. Normally at that time I would have to wake him up and give him a snack to prevent the inevitable low, but that night I adjusted his basal rate from .125 units /hour to .075. At 3am he was 102 and at 6am, he was 103... incredible!

And the fact that he didn't need a shot at dinner or bedtime or breakfast the next morning had me more choked up than I can say here. He loved his pump in that first 24 hours. Loved being able to put his carbs in and bolus himself. Loved not having to wait for the school nurse to draw up a shot before lunch.

And he still does.

I, however, have come to realize that the pump requires far more of me and Ryan than the syringe ever did. But-- and if you're not on a pump or have a child with a pump, then please take my word -- it is absolutely worth it.