The Low Lows

Grace's sugar has been running low-like real low. Starting on Saturday we began to see number in the 60's, 50's, and even once in the 40's. We had had a super busy day. Grace and I went for a nice 2 mile bike ride, came home, and it was low. I figured it was from the activity and didn't give it much more thought. I gave Grace a juice box which typically brings her number back up quickly. It did and we moved on with our day.

We spent the afternoon at a friends' house and the kids were nuts swimming. Grace stopped for a snack so I checked her sugar and it was 56. Ugh. I gave another juice box and patted myself on the back for my wise investment at Costco of approximately 1 billion small juice boxes. Grace felt better and assumed her fish-like existence in the pool. About an hour later I noticed her sitting very still in the pool looking very, very washed out. I called her over and asked her to check her sugar (she usually insists on doing it herself). I kept staring at her thinking "My God she is grey." Then I saw her hands were shaking and she couldn't actually take her sugar. I finished for her and saw our lowest sugar to date: 44. That one sent me into a panic. You treat it the same way--a fast acting sugar like juice but jeesh-that was just too low. I've read that the scariest part of hypoglycemia is the confusion it creates. You would like someone in hypoglycemia might think, "Hmmm, I'm confused-I bet my sugar is low!" The confusion can actually lead to inaction because the person doesn't even remember they have diabetes and they need to act quickly. This is where diabetes gets scary and why you need to surround yourself with people who recognize the signs of trouble. Each time Grace's sugar came back up but it makes it hard to enjoy a pool, wine, and good company when all you do is stare at your child for the slightest sign of trouble.

I wrote the day off assuming what we saw was a function of lots of activity. But the lows have persisted. Not quite as low as Saturday but barely anything over 100. We decided today was the day to check in with the doctor. The doctor ran through the numbers and asked me what I thought was going on. He explained that sooner than we think, we will be making the call on insulin doses. That we will be the experts on Grace's diabetes and, believe it or not, we'll barely be speaking to him unless we need a script refilled. I said given how long the lows have been going on, maybe her lantus insulin was too high. Lantus is the bedtime insulin that regulates Grace's blood sugar for 24 hours. He concurred, felt this was the correct first step to take and said we'll talk in 2 days. So we are going to adjust the lantus down and see if that helps. While pleased that I *may* have figured out what's going on, this is nothing I ever wanted to be an expert in. As Grace once said to me, "Why couldn't you have been the helpful kind of doctor?" Seriously, kid.

I'm in a little bit of a panic over this with school around the corner. Grace doesn't always realize when her sugar is low. She has a new teacher this year and I'm not sure she will realize when Grace's sugar is low. I'm really hoping we can fix this thing before school starts. The last thing Grace needs is a rough start to school when the kid is already worked up about it as is. Hopefully, this adjustment will do the trick and we'll soon become those experts.

CHOP Visit

Yesterday we had our first follow-up visit with the Diabetes Center at CHOP. I was anxious to hear how we were doing and to get some news on how well (or not) we were managing Grace's diabetes. I noticed on the way to CHOP that Grace was quiet--like super quiet. At one point I looked in the rear-view mirror and noticed her just staring out the window with such a sad face. It broke my heart. It never occurred to me that she wouldn't want to go but her face said it all.

Returning to CHOP brought back a lot of emotions for me as well. Being surrounded by sick children is inescapable. Children in wheelchairs, crying babies, kids with bald heads-parents putting on their brave face- it takes a lot out of you emotionally. I noticed Grace taking it in as well so I just gave her some gentle hand squeezes. CHOP is both everywhere you want to be and nowhere you want to be.

Our first appointment with with the nutritionist. This went really well. If there's anything I can do well, it's nutrition and I know we rock this portion of diabetes management. She loved to hear that Grace can count carbs, can even guess her insulin dose--white flour is like satan in our house. Where we need to make changes is *when* we give insulin. We "post-dose" Grace. Grace eats a meal, we count how many carbs she ate, and give her insulin. I like post-dosing because it allows Grace the freedom to go back for more. The problem with post-dosing is the second Grace begins to eat, her sugar begins to climb. Grace also has a tendency to take her time while eating, run after the dog, running after the cat, bust a move, yell at her brother. . . Short of tying her to her chair, and screaming "My God your blood sugar is rising child, eat, eat!", we had to change course. So now we will be "pre-dosing." We'll make a plate for Grace, give her her insulin and no going back for seconds. This should allow us better control over her blood sugar. She's also put weight back on though has room to gain even more. Ice cream for dessert!

One hour later we met with our social worker. This brought our momentary high right back down. We've all had some concerns that Grace's stay at CHOP and her new diagnosis has left her sad--very, very sad. She frequently wakes up in the middle of the night, refuses to talk about her hospital stay, and dodges questions from me about how she's feeling. I frequently find her in the office coloring like a mad woman, just wanting to be left alone. The social worker tried to engage Grace who had been pretty happy and chatty but Grace just rolled into a ball on Tom's lap and buried her head in his chest. Some behaviors that we've seen like irritability, waking at night, and even physical symptoms like headaches are a sign that Grace needs to talk to someone. We're working on getting that set up.

One hour after that we met with our diabetes doctor. CHOP has a reputation for having brilliant doctors but not necessarily the most kid-friendly doctors. This has certainly been our experience with the allergists. Our new doc, though, was perhaps the friendliest doctor I've ever met. He immediately engaged Grace, used gentle touches, lots of "sweeties," smiles, nodding--absolutely made sure she was part of the conversation. Our biggest problem right now is the injections. She cries and sobs and it's just terrible. Hurting your kid multiple times a day leaves you broken. I have a rep for being the meanest mom in the world but honestly, making your kid sob upwards of 4x a day is just not in my mean mommy repertoire.

The doctor more than understood and gave us a few tips on how to improve on our technique. One thing he really pushed was introducing new injection sites. Currently we use arms and legs. He wants us to move into the belly and back. Grace HATED the idea but we remained open to talking about it. The problem with using the same sites over and over is the build up of scar tissue which then makes it hard for the body to absorb the insulin.

The doctor was pleased with her numbers over the past month and we're going to work on getting it in an even tighter range. He acknowledged how hard it is for us as parents and just said all the right things. He reassured us that his 92 year-old grandma has lived with diabetes all her life. He felt confident that we're moving from the phase of diabetes controlling us, to us controlling diabetes.

So this is how much of a champ Grace is. We got home at dinnertime and she immediately said let's do the insulin before dinner. I was shocked. Then she said, let's do a tummy shot. I was double shocked. Grace's capacity for managing this damn thing continues to amaze me. And while the tummy shot did not go well-awful, terrible, no good--she wanted to try again this morning and went much, much better. Back again for another visit in 2 months.

Ups and Downs

When they told us in the ER that Grace's sugar was over 500 I had no idea what that meant. I mean, I knew it wasn't good because everyone kept telling us over and over what her number was but if you had asked me what a "normal" blood sugar should be, I wouldn't have had any idea. As the days ticked by at CHOP, I became fixated on what Grace's blood sugar number was. It slowly started to come down but I was extremely anxious that it was no where close to being in range. We learned in our classes that we are aiming for a number between 70-180. If it goes above 240, we have to test Grace's urine for the presence of ketones. Ketones are bad news. They occur when there's not enough insulin in the body. Essentially it means your body is burning fat for energy. In our classes we learned not to be too fixated with the high numbers. Those would be coming down. What we needed to super vigilant about were the lows.

I was not even remotely interested in hearing about the "lows" when all we were seeing were the "highs." But now that Grace's sugar is, more often than not, in range, we've experienced some of those lows and they ain't pretty. When Grace's sugar is high, she gets crabby and lethargic. When her number is low she gets super pale, washed out, headachey. Going too low (hyperglycemia) can be very, very bad. When it's high, it's annoying and needs correction but there's nothing immediately dangerous about it. When it goes low, there is a need to act quickly to bring it back up. If left untreated, the worst case scenario is shock and coma. We were assured that this is very rare but you need to stay on top of it. Grace is doing an awesome job of actually telling us when she thinks she is going low. She'll announce "I think I should test my sugar, I think it's low." Sometimes she seems fine and it's a little low. Other times she just looks pale and we know something is up. Physical activity can bring sugar down and during the week of soccer camp we saw that a few times. Misdosing insulin can also bring it down too low. If we miscount the carbs in her meal and error on the high side, too much insulin takes it too low. This is why, if you dine out with us, you'll see some serious faces as we study Grace's plate trying to determine how much she ate, what the carbs *may* have been, and how much we should dose. Big chain restaurants have information sheets on meals. I typically hate big chain restaurants. Mom and pop places (places I like) don't have that info and the guessing game begins.

To fix a low sugar, we carry mini-juice boxes and gummy candies with us. 15 grams of sugar should bring up her sugar by 50 points. We give a drink and wait 15-20 minutes to test again. Usually that does the trick. We typically test right before Grace goes to bed because she needs to have a blood sugar of over 100 in case it dips low in the night. Last night Grace said it might be low and she was right: 64. Of course it was a night when everyone was having fun, running around like idiots, and about 2 hours off their bedtime. 64 is pretty low for before bed so I juice box'd it and some animal crackers and that did the trick. About midnight Grace came into our room sobbing and sobbing and sobbing. We kept asking if she was ok, if something hurt, was it a bad dream? She was incoherent and my first thought was she must have dipped low again. So we hurriedly tested her sugar and it was fine. I have no idea what was going on there but after a half an hour she calmed down and went back to bed. I wish I went back to bed so quickly. That adrenaline surge is enough to keep you awake for a loooong time. Thank goodness for vacations and naps. And cocktail hour.

The Slow Burn

My friend Summer asked me the question “how did you know?” The question has a complicated answer. For those close to us, you know we had some concerns about Grace for a while now. Really our concerns go back to May when Grace started wetting the bed. At first we weren’t too concerned. It was hot, the kids were playing more outside and Grace has always been a deep sleeper. But the episodes started coming with more frequency and we both grew concerned. I try not to be “that parent” who constantly googles her kids various symptoms. I also try not to bother our pediatrician unless I think it’s important. So I googled “bedwetting” and wouldn’t you know what pops up first? Diabetes. I was alarmed but I also remember a funny routine I heard on the radio. If you google any of your medical symptoms you’re likely to come to two conclusions: I have HIV and am going to die. I have cancer and am going to die. I tried to downplay it in my mind and called our pediatrician who assured me kids do go through periods of bedwetting and it’s not at all uncommon.

And then the thirst came. And when I say thirst-I mean thirst. There was no amount of water in the world that could satisfy Grace’s thirst. The constant consumption of water led to more bedwetting. I didn’t call our pediatrician because it was really hot and I asked around (I know my sister is wincing as she reads this) and lots of kids drink a lot of water. And then the hunger came. Grace could pack away as much food as Tom. But she was skinny as a rail- I immediately assumed growth spurt. Again, I asked around- do your kids eat a lot? Of course they do. And then came the moodiness. Grace was just an all out crank. But, pretty much every summer, Grace is cranky especially when growing. So it all made sense--kind of. We talked about making an appointment to see our pediatrician--just too many things weren't adding up.

And then the headaches. Up the mountains Grace experienced God-awful headaches. I mean awful. Screaming, sobbing, holding her head, “please help me mom” headaches. We rushed her to the ER in Scranton where they did nothing. Literally. Asked a few questions, implied perhaps we beat our child, and dismissed the headaches “as something kids sometimes get.” Tom and I looked at each other and said we’re getting the hell out of here. We rushed back, packed up, and headed home. We wanted to be near an ER that took this seriously and booked an appointment with our pediatrician the next day.

We love our pediatrician. One big reason is because he is a pragmatist. He listened carefully as we went through our concerns: the thirst, hunger, bedwetting, moodiness, headaches. He brought up diabetes but said it was rare--very, very rare-since we don’t have it in our families. Each symptom had a very rational explanation. He concluded migraines but, “to dot the i’s and cross the t’s” he would do a urine test.” Tom headed to the car, I was holding the door for the kids to leave when they called us back in. This is the nightmare part--where everything seems to be happening in slow motion. I was watching Grace color as the doctor explained we were headed to CHOP immediately. There was glucose in her urine. I felt sucker punched, as if I had to take a knee. But we couldn’t. We had to get Grace to the ER. I was trying to listen and trying to keep from collapsing. The odds that a child will develop type 1 diabetes in a family with no history of various auto immune disorders is less than 1%--very small consolation. In the ER we learned her sugar was over 500 but, in a sense, we were lucky. Grace’s body had “tolerated” the diabetes quite well. They explained many parents rationalize their kids’ symptoms the same way we did but if it goes on long enough, they come to the ER in a very, very bad way. We were lucky we acted when we did, that our pediatrician--even though he knew the chance was so, so slim- did that urine test.

What's New

I have 5 messages in my mailbox that I've been meaning to answer and a few voicemails I haven't returned from family and friends checking in to see how things are going. I also know many of you have been meaning to call or email or drop a line but feel like you're "hovering" or pestering us. Be assured, you are not. I really do appreciate the calls and emails. To know that so, so many people are behind us is very comforting. I promise you all--I'm not ignoring you. The days go by so quickly that by dinner time my head is hanging and I'm praying for the relief team to come in and get my kids to bed. And then for the relief team to hit my box of wine for a giant glass of sedation.

I'm starting this blog as the most efficient way to keep everyone updated on Grace, how we're all doing, and any new information we'd like to pass along. I have no idea how long the blog will last. In fact, I've come to believe that blogging is an ancient art. But for our situation, it seems to make perfect sense. The format is sooo lame. I'll play with it when I have more time.

So here's what's up. It's been almost 3 weeks since our CHOP experience. In the week we were at CHOP, Tom and I got a crash course in diabetes management. But similar to those silly childbirth classes every anxious parent takes, the classes did not really compare to the real deal of living with diabetes. Our binder of educational materials is well-worn, doctors' numbers are on the top of my contact list, and my bag is loaded with very sharp objects. On a daily basis I am armed with an epi pen, lancets, and syringes. In short, don't mess with me.

I think there is a lot of misinformation out there about diabetes. I know my personal knowledge base was dated by about 10 years. Our first night at CHOP I panicked that Grace would never be able to have sweets again, would be on a special diet, and would eventually come to hate food given the restrictions we've imposed because of her food allergy. The only silver lining I saw was that I'd get a crap-load of new cookbooks out of this. Anyone who's seen my collection knows how serious I take my cookbooks. I had to find a silver lining.

The good news is that Grace can eat whatever she wants. The bad news is that Grace cannot eat whatever she wants. Her days of wandering into the kitchen and grazing on carrots and tomatoes and ranch and hummus and yogurt and whatever else was on her approved snack list have ended. Grace takes 2 kinds of insulin. One is given before bed, the other every time she eats something over 5 grams of carbohydrates. Now stop reading this and go look in your cabinets. Have anything a kid would like that's under 5 grams of carbs? No, I didn't think so. We have a list of snacks that Grace can have that are "freebies"--no insulin required. Cheese, smoked meats (salami, pepperoni, etc), lunchmeat (meat in general), string cheese, guacamole, celery, sunbutter, cream cheese, small servings of veggies with ranch, hardboiled eggs, pickles-I could go on. No where on that list is crackers, Teddy Grahams, yogurt, fruit, pretzels-staples of Grace's diet. Translation: Grace gets a lot of insulin. It's her choice whether or not to have a carb snack but, hang with me here, she has a "limit" of how many carbs she can have a day so we generally limit carb heavy snacks. If Grace wants fruit or yogurt or cookies, it comes at meal time with a dose of insulin.

How do we keep track of all this? I do (by and large), in a notebook I keep with me at all times. I count carbs (more on that in a minute), note her blood sugar (taken with a pin stick to her finger) and I then use a chart Endocrine has given us to calculate her insulin dose. It involves addition, multiplication, and division. Can you see the sweat on my brow? It makes me nervous-very nervous-to calculate an insulin dose. Sometimes it's easy, other times more complicated. If I screw it up, I screw up her blood sugar.

We carb count everything through the internet and a handy book they gave us. Some things are now committed to memory-pizza has 22 carbs per slice, milk, 13 grams per cup, ketchup 4 grams for 2 tablespoons. Other things are not so easily found. For example, the canary melon I received in my farm share today (13 grams for one cup diced)-- took a little digging to find that one. I calculate all her carbs and record the number on a chart we have to keep for our appointments. We have phone contact once a week with Grace's endocrine practice and they ask us to read back numbers to see if an adjustment needs to be made. Up until today, I had to wake Grace every night a 2am to make sure her sugar had not gone too low while she was sleeping.

Some people have asked me if Grace can take insulin orally. No, her body would destroy it. Type one diabetes is an auto immune disorder. For her body to absorb the insulin, it has to be injected. Have you seen how skinny my girl is? Injections either go really well (she barely notices it), or she howls. And howls. And howls. And sometimes hits. And sometimes kicks. But we have a deal--a solemn pinky sworn deal-that I will never, ever walk away when she is upset. So I take it. Just like Grace takes it.

There is much more to write but I'll save it for another day. Feel free to ask questions--fire away. I'll do my best to get back to you and update more as I have time.