Tuesday, September 27, 2011

Coping with pre-teen diabetes insanity

Today is Sarah's 12th birthday. She's growing up! She's become such a unique young lady. She's fun and serious and comical and silly and determined and awesome. I am so proud of the young lady she's becoming!

Today we spent half the day traveling to Roseville for a doctors appointment. It was a group appointment, so nothing critical. Even though it was her birthday, Sarah was determined not to miss it. In this appointment, several families with children with diabetes ages 10-12 come at the same time. The kids are sent into one room, the parents to another. If I learned one thing from this appointment, it is that I have a spectacularly awesome kid and I am BEYOND thankful.

Raising a child with diabetes is hard, and it gets harder as they become teenagers and begin to want more independence. And ya know what? These pre-teens are sneaky little buggars! It's not uncommon for kids to begin to pull away and find ways to hide their blood sugar from their parents. It's extra important that we parents remain vigilant and involved.

A parent told me today that her daughter, who is the same age as Sarah, has become amazingly sneaky about hiding her blood sugars - and the kid has been in DKA (diabetic ketoacidosis) three times this year. Among other tricks, she adds water to her blood drop (which apparantly reduces the number), and she's been known to test her little sisters and show her mom their completely perfect numbers rather than test herself. Other kids simply lie about their numbers, and I've heard of some using the solution that comes with the meter and always shows a nice number.

Even Sarah is not completely immune. Just today she told me she didn't test for lunch, because she didn't think she'd have enough time to test and eat (apparently she was doing something with a teacher during lunch today). And last week she ate a few pieces of chocolate during a class (mini candy bars) and didn't bolus. I'm sure you know where that ended up!

So I thought I'd take this opportunity to at least write down how we are handing this, in the hopes that it might help someone else who has a pre-pre teen.

  1. Don't react. That is really the most important rule. No seriously. Don't react. If the number is 40, then that's what it is. Keep a smile on your face and hand over a box of juice. If the number is 400, then that's what it is. Keep a smile on your face and give/supervise a correction and a glass of water. Kids hate it when we react to their blood sugar, they take it personally. It's like getting a bad report card ten times a day!
  2. Don't immediately ask your child for their numbers after school. First ask them how their day was. What did they learn in science class? And maybe tell them a little about your day or something interesting that happened. Then, if you must ask, ask gently (refer to rule #1 above). Better yet, just have an understanding that the meter goes on the kitchen counter in the evening - then, when your child is off doing homework or playing outside, just run through it and look at the days numbers. Kids don't like to think/hear/talk about their diabetes, so the more you can reduce the need, the better.
  3. Encourage positive choices, but don't restrict. The best way to ensure a rebellion is to make something off limits. One thing we do to make things a little easier is to have dessert early, sometimes after lunch, on weekends. It's a lot easier to manage dessert bg's between lunch and dinner than close to bedtime. Also, I always tell Sarah she can have whatever she wants, as long as she takes insulin for it. So if someone brings in cupcakes to school, fine, no problem. She can have that without having to ask or feeling guilty about it later.
  4. Give 'em a break. If your child wants you to test them and make all the decisions in the evening, then do it for them. They've been managing something no kid should have to manage, all day long.
  5. Talk about it when it's appropriate. I've found that sometimes Sarah doesn't want to hear about diabetes at all, and other times she's more than happy to discuss her diabetes, how to manage it better, how we're adjusting her IC ratios, or whatever. Don't do it in front of friends, or even as a family group. Find a time when they're in a receptive good mood, like listening to music on a car ride. Just turn it down a notch and strike up a conversation. Make it conversational, not accusatory or lecturing.
  6. Meet other kids. Kids with diabetes often feel very lonely. Sarah goes to a huge school, and she's the only child with type 1 diabetes. It really helps her to get to know other kids with diabetes. Find local functions, or call JDRF. Encourage your child to go to diabetes camp and come home with some phone numbers and email addresses.
  7. Don't sweat the small stuff. I know, it all seems big sometimes. I totally get it. But look at the big picture.
These kids are expected to make medical decisions that affect their lives, all day long. It's kind of crazy when you think about how much responsibility a child with diabetes has. As parents, our job is to parent, but with a little additional understanding and compassion. It's not always easy, and every kid will make bad decisions from time to time. Help your child learn from those experiences rather than punishing them.

And I should say that this is just what's working for us right now. She's 12. I know it's going to change and get harder. I definitely don't have all the answers (wish I did!). I know there will come a time when we're feeling defeated and begging for help. So I'd love to hear from other parents too, as I know there are parents out there with amazing stories and ideas for better diabetes management.

Thanks for listening!

Wednesday, September 21, 2011

Do Amish get type 1 diabetes?

Strangely, this was on my mind as Amanda and I wandered through Amish country yesterday, but Amanda is the one who asked it out loud. It's a good  question. The Amish are a fascinating culture. They live mostly in the past and are less affected by big city life and all that goes with it. They have much less medical care, though I don't know if they get the usual vaccines and such. I doubt it. And there are different groups of Amish, some stricter than others.

Do they get type 1 in the same numbers as the rest of us? I'd love to know. I did some research last night and found that they have significantly less type 2, though that is thought to be mostly attributable to an active lifestyle. I can tell you also that there's no high fructose corn syrup in their cookies or cooking in general. Same goes for other types of preservatives and junk that we eat. They cook the same way they've been cooking for hundreds of years.

We bought a cookbook.

But back to diabetes. If there was a way, I think this would be a fascinating study. The Amish are generally more genetically linked because they are a relatively small community. Do they get type 1 in the same percentage as the rest of the population? When they do, is it random, or can it be traced to genetics? What is the outcome of an Amish type 1, when you remove the canned and processed crap that the rest of us eat? I think knowing more about how it affects this group might provide some answers, or at least more questions to follow up on.

Regardless, we had a great visit in Amish country. We talked and giggled, we toured an Amish home and ate a fresh baked Amish cookie (best cookie EVER), we rode in a horse drawn buggy. We had sorely needed girl time.

Oh.. and how amazing is this. I just typed this post on my phone while riding in a bus through the PA countryside!

In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com

Monday, September 19, 2011

Let's poke the baby!

I've come to the end of my second day away from my Sarah. For those of you who don't know, I am on the East coast for a conference while Sarah is still in CA. She's doing great, thanks much to my mom for subbing for me and waking late into the night to "poke the baby". Yes... I know Sarah isn't a baby. She's a young lady now. She smart, funny, sarcastic, adventurous, beautiful, and so much fun. And she's my baby.

Sarah's always liked routine. She needs to know where to be, at what time, and what the plan is. Dealing with her diabetes is no different. As long as there's a plan, and we stick to it, she's great. So somehow, at some point in the last 16 months, I decided to be funny and sing a little diddy to her while I poked her finger for her bloodsugar test. It's not really very clever or original. Its basically me singing about poking the baby to the tune of La Cucaracha. Yep... But Sarah loves it. Today, the very first text in the evening after her classes was about how she misses that. She wants mama to come home so I can poke her and sing my silly song. It's kind of funny how much we've bonded through this experience of Diabetes.

I wish I didn't have to poke her at all, but I am looking forward to being home to poke the baby on Friday.

Sunday, September 18, 2011

Enough is enough - we need to stop the need for burning candles

I try hard not to dwell on the negative. But as I sit here in a hotel room about a bazillion miles from my sweet girl, I can't help but ponder. Truth: a small percentage of type 1 parents are members of the diabetic online community. Truth: Since I joined the community far too many children in this community have died. How many more pass by us unnoticed?

I can't dwell on this. All I can do personally for my "daughter is to help her manage her bloodsugar closely. But we are a community, and there's power in that. Why have we not DEMANDED of JDRF, ADA, and of any doctors and reasearchers who will listen, that this needs attention. Look it up. There are ideas, loose theories, but no one knows why this keeps happening. I read something the other day that one theory is that a low sugar could result in a heart irregularity. Okay... so Mr. Researcher, why have you not selected a hundred kids or so and put a heart monitor on each to see if there's any irregularity during hypos? And while I understand how much pain these families have to be in, has anyone done research to determine as many facts as possible; MDI or pump? Activity, food, insulin in the hours before the death. Insulin in the blood at time of death. Is there any way to confirm long/short acting? Are there any corrrolations with age, race, geography, length of time since diagnosis, other health problems?

I suspect part of the problem is that it is hard to ask these questions. As a D parent myself, I know that diabetes makes parents feel more responsible than probably any other disease. We aren't just responsible for making sure the kid takes a pill each day, we are responsible for their health 24/7/365. How could we not feel responsible when something goes wrong, even though each of us intellectually know that we can't control D as much as we'd like to think.

So here's my plea to anyone who will listen. Let's make this a priority. Even if this takes a small amount of money away from research towards a cure, I want.... We NEED these deaths to stop.

Thank you

Saturday, September 17, 2011

Taking a trip requires a lot of brainpower!

Tomorrow morning I will leave ridiculously early on a pair of flights to take my older daughter, Amanda, and I to Pittsburgh. I am very much looking forward to this trip because it will be the first time I've had Amanda to myself in quite a long time. Amanda is 20 now, and I am so grateful that she still wants to do things with her mom. I won't write too much about Amanda because, unlike Sarah, it embarassses her. She's my quietest child and prefers to remain mostly anonymous.

So instead I'll focus on the challenges of leaving for a week when you have another child with diabetes. Okay, so it's not just the diabetes. Sarah is my youngest and she's been attached to me like superglue pretty much since she was born. And I have to admit I'm pretty attached to her as well. But when she was diagosed with diabetes 16 months ago, that kind of put our attachment into overdrive. Intellectually, I know that this week is going to be good for both of us. Sarah needs to see that she can take care of herself when mom's not around, and that someone else can do just as good a job at helping her care for herself.

Sarah is staying the week with my mother, though dad will still play chauffer to her various classes during the week. I think it will be good for my mom too, because although she's been with us a fair amount since Sarah was diagnosed, she hasn't had any experience with nighttime - which is usually the only time Sarah really needs any help these days.

So in preparation for her week with grammy, I wrote a novel, most of which (took out the personal stuff) I have posted here. Okay, it's not THAT long, but once I started thinking about the amount of little things that go into keeping Sarah healthy and safe, it just kept getting longer and longer and longer. It's hard to explain what goes through my mind when I'm deciding how to handle a nighttime bloodsugar. How I'm weighing the time and her sleep needs, her insulin on board, how much she ate and whether that might kick in, and whether a basal reduction will work given the current circumstance. I guess I could have just bequeathed her the pink panther book, but it's so generic and I've kind of got Sarah's care down to a science. - If you're a parent of a child with diabetes, please feel free to use any part of this you find helpful, and change anything for your own use.

So tonight I will take Sarah to my mom's in the evening, where we will change her site so my mom can watch and learn. Tomorrow, Amanda and I leave around 4:15am (yikes!!!) so that we can get to the airport in Pittsburgh before dark. Monday and Tuesday we will relax and have some fun. We plan to drive into Ohio and spend some time touring through Amish country, something we've both always wanted to do. Wednesday we head back to the airport so that the Principal Financial awesome trip planners can pick us up and take us to the resort where Amanda can completely chill and relax, along with some horseback riding, cooking classes, and possible art tour, while I learn more about the ins and outs and regulatory issues with retirement plans.

Sarah and I will still be connected through cell phones, text messaging and facebook. I love technology!!!