3rd Annual Diabetes Blog: What can we improve on...

What can we improve on….

Well, I’m not sure there is anything that we can do better. Most problems we have with Alyssa’s D1 is out of our control. No two days are alike; but lately, for the most part there are more good days than bad. Now, of course this disease is ever changing and what is working now, may not work a few months from now. Things have been going well recently and I think this is because we have a consistent routine of checking blood sugars and calculating carbs. I have found in the last year and a half, that consistency is a must. If she eats the same amount of carbs at about the same time each day for her meals, then her BG’s are normally within range. Of course there are times that her BG’s are low or high and that is usually because of extra activity or if we’ve gone out to eat (I’ve found most restaurants’ nutrition information is not always accurate).

Diabetes Blog Week: One Great Thing 5/15/2012

Managing Alyssa’s diabetes is a lot of work and I do find that I become obsessed with glucose levels and calculating everything that she puts in her mouth.  It can become the center of your life; like many D-moms, Alyssa’s diabetes is the first thing I think about in the morning and the last thing I think about at night. 

There are many times I feel overwhelmed and get frustrated when her numbers aren’t good or when she suffers with a lows.  And then I remember I’m not the one with the disease.  What I do try to remind myself is Alyssa is a child and she just wants to be like every other almost 9 year old. 

It’s impossible to be perfect, but there are many things that she does spectacularly!! Alyssa knows when she isn’t felling right and she will immediately go for her meter and check her BG and she’s not embarrassed about it…she’ll pull it out anywhere.  If it’s low, she goes for a juice box and a lot of times she’s treating her low before I even know what’s going on. 

This has helped lift some of my fear—I don’t stress as much when she’s playing outside or when she’s at cheer practice because I feel confident that she knows to address any change in how she feels right away.  More importantly, this has given Alyssa the opportunity to be more like other kids her age.

Diabete Blog Week: She needs no introduction

Most of you probably have read her blog, but I had to mention that D-Mom Blog: The sweet life with a diabetic child was the first blog I read (and I still read) after my daughter was diagnosed a year and a half ago. Her blog helped me prepare my daughter to return to school after her diagnosis—as most of us, I was at a loss.  I’m not sure I would have survived the chaos without it! 

Our daughters are close in age and I find that I relate with many of the diabetes related issues she writes about. I read all of her posts on her blog and follow her Facebook page. She provides an amazing amount of information and if I’m not sure about something, I look at her older posts for the answer because I know she has already been where I am at. 

For the few who have not read her blog, I recommend D-mom, whether your family is new to type 1 diabetes or not.

Diabetes is Scary

Our trip to the endocrinologist went well today.  Alyssa's A1C was 7.9 (recommended between 6-8 for her age) and there was no change to her regimen.  We did discuss the pump and we both agreed that Alyssa will let us know when she's ready.  They sent us home with a sample OmniPod (without the connection) so she could try wearing it and see how it felt. The omnipod is tubeless, but they also gave us information about the Paradigm Real-Time Revel and the OneTouch Ping.


Right now Alyssa is dead set against the pump.  Her biggest concern was wearing it during gymnastics, cheer, or when she swims; but, we have found out that some pumps can be removed during these activities and some are also waterproof.  She doesn't know anyone that has a pump, so I'm hoping once she meets someone that has one, she'll be more open to it.  We are going to a pump class next month so that we can have some hands on time with different pumps and also for her to meet others that are considering getting the pump.



Alyssa rarely complains, but on occasion, she asks 'why does she have diabetes?'.  On a recent FB post, I shared my answer "Its His plan and maybe its because one day you'll help other T1 kids".  And then we discuss how her beta cells in her islets of Langerhans do not produce enough insulin to turn her food into fuel....she thinks the islets of Langerhans is a funny name.   So she laughs and that's usually enough.  However today, sadly, while we were waiting for the endo, Alyssa said to me that she thought she was going to die early.  Diabetes does not run in our family, but my (step) dad was diagnosed with T2 many years ago and is insulin dependent.  Currently he is suffering with complications of the disease.  He has been recently diagnosed with diabetic retinopathy and moderate chronic kidney disease (stage 3).  She may not fully understand these conditions but she knows they are terrible and this is very scary to an 8 year old little girl.  My reply to her statement was that she is going to live a long healthy life and that the reason I make sure she checks her blood sugar, eats healthy, and gets insulin injections is so that will happen.  This is a double edge sword, on one had you want to shelter your child from the scariness of this disease and on the other, you want to stress how important it is that she take care of her health.

Spring Break

Normally we travel 'somewhere' during the kid's Spring Break, but after my hub's trip to the Middle East and our short get-a-way to the Keys, we decided to push our family vacay back to the summer.

Home for Spring Break=Princess LuLu's Boredom=Hunger

Lu: "I'm Starving!" Me: "How, you just ate lunch?"  So the snacking begins......

 Alyssa's Top Ten snacks (all under 15 g of carbs)

(light) low fat vanilla yogurt
sugar free pudding cups
100 calorie snack packs
4 pk peanut butter crackers
low-fat, no sugar added ice cream cups
medium apples
grapes
cucumber slices with ranch
string cheese
Caprisun's Roarin Water

Type 1 Diabetes Research

My posts have been few and far between lately….mainly because I am a full-time wife, mother, business owner, and student… This semester three of my classes all require extensive paper writing so honestly I haven’t had much time to blog. I have really missed it, so I have decided I will at least try to blog twice a month.

I want to begin with how EXCITED I am about the recent FDA approval for testing the artificial pancreas. This study is already under way in other countries. Although I know it will take some time for testing and for it to be made available to patients suffering with Type 1 Diabetes, at least we are on the road!!

Now, for the naysayers who say JDRF is wasting valuable funds researching this artificial pancreas that could be used towards finding a cure~~ WTH!?! JDRF’s mission is also to fund research that improves the lives of those living with this disease. Without research there never would have been insulin, meters, insulin pumps, medication ect…. All of these discoveries keep our Type 1 loved ones healthy and ALIVE! There is still much research going on about beta cell replacement….which if it works…will help the pancreas make insulin on its own. Research takes time and new developments are happening all the time. I do not claim to be a ‘diabetes expert’, however, I love and am the primary care giver of a child who lives with Type 1 and I make it my business to support, advocate for, and research anything that will make her life a little bit easier.

Ultimately, Diabetes SUCKS!! And when I sit and think about what lies ahead for my daughter~ I cry, I get angry, I even scream sometimes…my job is to protect her and there are times I feel helpless. But then I remember there are so many other diseases out there and many other parents who’s children are suffering with untreatable, incurable diseases and I’m thankful that at least we can somewhat control diabetes and I believe we will see a cure. And we are blessed that more and more options are on the horizon.

JDRF First Outpatient Artificial Pancreas Trial Approval

Diabetes is Ugly

Diabetes has been showing its ugliness.....The last few weeks have been a roller coaster for Alyssa's diabetes.  The week before last, I got a call from school 4 out of 5 days saying that Alyssa's glucose levels were high....300 + every morning at around 8:30a.  She eats breakfast at 6:30a and gets 2 injections (regular insulin and then a long lasting insulin).  So, her sugar should have been within normal range 2 hours later?  Over that weekend, her levels were great!  Last Monday, I decided to up her regular insulin .5 units (a very little) and I got a call at 8:30a saying her sugar was low. ughhh...so on Tuesday, I backed down the dose....8:30 ~another call and low!!  Wednesday and Thursday, the same thing.  Weekend was pretty good, a few highs but in the low 200's and likely because she snacked a little more.  This Monday morning, a call at 10:00.... sugar was 59! Lowered insulin from her normal dose and Tuesday no call!  Thought we were in the clear! Wednesday was an early release day, so I kept her home from school because it would mean she would have to eat lunch at 10:45a, which throws her whole schedule off.  Levels were great!  Yesterday, call at 10a, sugar 300!  What the heck!!  Today (Friday) same thing!  I swear, I'm losing it!  What is insane is that these extreme lows and highs are effects of a minute amount of insulin!  The picture below (on the left) is the actual syringe scale.  She gets 1 unit for every 25 grams of carbs, usually 2 1/2 units.  So,as you can see, 1/2 u is a tiny amount. 

Those of you who know me and Alyssa know that I am borderline obsessed with managing her diabetes.  I measure EVERYTHING she eats and have learned to adjust for her activity levels.  Thank God we have a great Endocrinologist!  I know I've called and emailed her 10+ times.  Finding that perfect dose has been a challenge and unfortunately what worked one day, has not been working the next!

I'm at the point I think there is another culprit besides the pancreas. I know stress can elevate glucose levels. The blood sugar of type 1 diabetics can increase when they’re stressed because of the production of stress hormones. In most people, these hormones help improve the body’s stress response because the liver releases more glucose for additional energy. For diabetics, however, this extra glucose can result in a dangerously high blood sugar level.  My husband was in the Middle East for 2 weeks, and I know she missed him.  I tried to keep as much from her as possible, but she knew that he was in dangerous areas at times.  Now that he's home, I'm hoping things get back to normal and that her glucose levels balance.