Tuesday, August 28, 2007

T1 Kids--How do you handle diabetes care at school?

Today is day two of second grade for my sweet girl. Day one was awesome. Her teacher was prepared, the Teacher's Assistant who cares for her was on hand and ready. Her blood sugars were 92 for morning snack, 112 for lunch and 85 for afternoon snack. Hooray!

Then today, well actually last night, she was 92 at 11:00 p.m. My husband checked her at 2:00 a.m and she was 174. He didn't know she was 92 earlier, so he only did a partial correction. This morning she was 275. Hmmm. I pause, but figure since she didn't get the full correction last night, things might be OK, after all it is only day two of her infusion set. I correct and we head to school.

Morning snack 230, obviously not great, but lower than before. Lunch, 212, OK, lower and its a post morning snack number, but still not great. Afternoon snack, 427. So up to the school my hubby goes to give her a shot (we live a half block from school). She'll be home in 45 minutes, so we decided to wait on changing the infusion set.

Then I went to pick my girl up after school and her teacher was a basket case. She was SOOOO worried that she screwed up. She said, "I should have seen it coming."

I let her know in no uncertain terms that she cannot claim responsibility for my daughter's blood sugar numbers. It is her job to teach her, get to know her and keep and eye out for the symptoms we discussed for almost an hour and a half. I said that if she is worried at all, to ask my girl to take her blood sugar and to call me if there are issues. Her diabetes management is OUR responsibility and we will do our best to care for her with the information we are given each day.

Now, I should say that my daughter has been under the supervision of one Teacher's Assistant since she started Kinder at the school. It took some months of cajoling the administration, but everyone finally agreed that having one person watch over her care (we have no full-time nurse) was better than her, at five years-old, trying to figure out which of the five people at the school was supposed to help her three times per day.

This angel of a TA named Molly is loving and tender and watchful over my girl. She also cares for several children with Autism and Down Syndrome, but every single day at 9:00 a.m., 11:30 a.m. and 2:00 p.m. she is in the room watching blood sugars be taken, writing down the numbers, helping count and add total carbs, monitoring the pump entries and trouble shooting with me on the phone if there are issues or she just thinks my girl just looks a little off today.

Molly knows my child and loves her dearly and this system has worked great for us. I hate the idea of a teacher being responsible for teaching, managing nearly 20 kids and giving her full attention to my child's diabetes. I like the teacher being an active participant, but not the care provider. It works for us.

Tell me how your little one gets care while at school. What is your biggest worry? Do you trust the people/system caring from you child?

Thursday, August 23, 2007

Minimed CGM Update: I've Got a Secret

So summer has been busy and posting fell way off my radar, but I do have a few things to share. First, the CGM makes my life much easier, however it also can drive me nuts. Sometimes I wish I could go back to ignoring my diabetes; "feeling" my way through. I knew I wasn't high and I knew I wasn't low, but I tended to hang in the 150-220 range and that isn't good for anyone all the time.

So here I am, enlightened and technologically hooked up.

For the second time, I tried to insert the Minimed sensor in my upper rear; I love it (day one). It wasn't uncomfortable when I slept, but I was extra cautious when I turned over last night. I really don't prefer to do infusion sets there either, I am a stomach inserter. My daughter is a butt cheek inserter and to show her that the sensor didn't hurt, I had to do it myself.

I have to say, that reaching around to hold the sensor in place with two hands was challenging, but I managed. Next time, I will get my husband to help. The first time I tried to do the sensor in my rear, it went poorly. I did it too high on my hip and it hurt, a lot, so I pulled it out. $35 down the toilet.

So now for my not so secret, secret: I now insert the sensor at night, attach the Minilink transmitter and go to bed. I do not turn it on; I just let it be until morning. When I wake up and my blood sugars are stable, I start the new sensor and within seconds, I get the BG Meter Now calibration request. This lets me skip the first two hour calibration and that is a life/schedule saver for me.

One of the biggest irritations for me is the constant alarms over something or other (which is because the CGM is doing its job), but the calibration alarms have always felt inconvenient. Before, when I would decide to put the sensor on, I would have to think hard about where I was going to be when the first two hour calibration would be required. Usually, I would be in a meeting. Being beeped at, while talking business, then stopping to either snooze the blessed alarm or calibrate, drove me nuts. That is fixed with the evening insertion.

I still have to contend with the six hour calibration, but that is mostly no big deal.

Accuracy is mostly good; within 10mg/dl. I've contended with a few situations that threw me for a loop, but this thing isn't perfect.

Oh! One shocker. My A1C did not come down. It was the same as last time. I have not been vigilantly tweaking my numbers, I have just been preventing lows and highs. After all, I spend most my diabetes vigilance managing my kids diabetes and tend to just ride mine out, but I was shocked that it wasn't lower. I have read all over the place that the CGM isn't necessarily going to lower A1C's, but for me it has reduced the serious fluctuations in sugars. Rather than being high then low, I am more in the middle. I tightened my High alarm from 275 (yes, silly me) to 200. That should help.

I also decided to give Symlin a try again. Haven' t ordered it yet, but will post when I do. I have been gaining weight and increasing my insulin rates with no changes in my diet. I guess age and insulin resistance is the culprit. Not pleased about either, but at least there are options to help with both!

Sunday, August 5, 2007

Travel to Maui: Pumps, CGM & Salt Water

We just returned from Maui where my sister got married and it was spectacular! I have proof!

We saw rainbows EVERY day and I even drove through the end of one. I have never seen anything like this, but only caught one rainbow in photos.

I was SO sick of diabetes on this lovely trip. Every time we turned around either my infusion set was clogged or my girl had sand in hers, or my CGM was beeping constantly at me. She was low, I was high, or we were both low and Dad was pulling his hair out trying to understand all the drama. I wore my CGM on the plane with no issues, either in flight or at security. No beeps and no worries with 10 hours in the air.

Maui is the loveliest place I have ever been, even in a draught. We stayed upcountry, which to me is the REAL Hawaii. The place we stayed had an orchid nursery, along with a property full of bananas plants, papayas, lilikoi (passion fruit), tangerine trees, avocado trees and lemon treess. Lilikoi is the best thing I have ever tasted. I walked out of my room each morning with coffee and grabbed a banana off a bunch that was picked the day before. Sweet!

We also spent plenty of time at the beach. No matter what we did to protect our infusion sets, we had to change them every time. Salt water is to blame I bet. As it dries, the salt crystals clogged the holes. A guess, but probably a good one.

Speaking of beaches, this is where I sat for three days when I wasn't in the water.


Three Years and Counting...

Today is the third anniversary of my daughter's diagnosis of type one diabetes.

I was at work when she called me to say that Daddy had checked her blood sugar; I could tell she had been crying. A wave of fear spread from the top of my head to the tips of my toes as I asked her, "What was it, baby?"

She was three, soon to be four and I knew in that moment that our lives were changed forever.