A1c Test Results

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8.1

My son had his first A1c test yesterday, and if you read my previous post you’ll know I was a little nervous about it. Well…. He did fine according to the endocrinologist. His A1c is 8.1 which we were told equated to a blood glucose average of 211. At first we were thinking this was a bit high (and in reality it is) but the doctor told us that she didn’t want his numbers any lower for now, 8.1 is basically as good as they want him while he is still so small. There are a couple contributing factors: First, he’s in his honeymoon period and we don’t know when his body will produce some insulin. Second, he is very sensitive to the insulin and sugars. Third, he’s barely 2 years old. All of these factors led to the doctor telling us that we shouldn’t strive for lower numbers right now because it would cause him to have more lows and require more corrections to bring him up. All of this makes sense to me, except one part, which I didn’t realize until I saw my last post. An A1c equals a sugar average of 211? Or is it closer to 185? Well it turns out it depends on where you’re looking, I guess. The chart on my last post is showing an A1c of 8 equaling 183, which caused me to do some research and I saw a whole slew of other charts with different numbers. I guess I figured out which version our diabetes team uses, which will become the one I use, but I still wonder about the variations. Let me show my examples:

My last post showed this chart:
a1c chart<
(actually I wish this was the one we should look at, it seems to have better numbers)

And this must be the version our doctors use:
a1c chart b

I have no idea why so many charts would have so many different numbers, seems like it would be a mathematical conversion formula. Either way, our son is at 8.1 and while this is not where we want him long term, the endocrinologist was very pleased with where he’s at right now. As he gets bigger, we can tighten up and bring him down but for now, it’s a “keep doin’ what yer doin'” situation.

T Minus 5 Days and Counting………

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a1c chart
5 days until my son’s first post diagnosis A1c test and I gotta be honest, I’m a little nervous about it. Managing his diabetes has been a rollercoaster since he was diagnosed in early August, and while I am sure that it’s normal to take some time to get everything smoothed out, I want to make sure he has the best opportunity to minimize or eliminate future complications. Upon his diagnosis, the doctors, nurses and our diabetes team told us that management of 2 year old diabetics can be tricky, and it is. I feel we are doing a fairly good job based on everything, but this will be our first “report card” and I want a good one. Right now, our team is going for a BGL between 100 and 200 giving juice below 80 during the day and 110 at night. This seems like a pretty wide range that would be relatively easy to maintain, however, he is very sensitive to both insulin and sugars. Sometimes a juice box will take him from the 70’s up to over 200 and a half unit of insulin can bring him from 280 to 100. The nights are the hardest part. There are nights where we have to give him insulin at 2am for a 280 and juice at 4:00 to bring him back up. Lately, my wife has had to wake up 4 or 5 times each night (not that I won’t help, I’ve been at work for the past 72 hours) to check him because we are lost as to what his body will do. His Lantus dose has changed from 1 unit to 2 to 3 then back down to 2.5, 2 and currently 1.5. Once we seem to be getting a grip on things and his numbers are leveling off, it all changes. He starts spiking at different times, dropping at others, his doses need to change again and we’re back to square one. One good thing is that it seems like his pancreas may have stopped (or at least slowed down) it’s production of insulin as he’s not seeming to drop into the 60’s for no reason as much. Then there’s the illnesses when they come. He’s had a cough which has since gone away that didn’t cause us too many problems, it was the croup that was bad and the steroids to treat it made it even worse. My son was hitting almost 500 BGL and ketones of 4.0 at it’s worst. Very high (for him) doses of insulin to correct these numbers and a trip to urgent care for “medical hydration”. It sucks to know that all those spikes are going to affect his overall A1c number, but that’s the way the cookie crumbles, I guess. Like I said, they are shooting for 100 to 200 and honestly I am hoping for 250 or lower. At the time of his diagnosis, his A1c was 313 with a current BGL of 519. We think he had developed the diabetes about a month prior based on duration of symptoms. I know things will change, hope they will get better/easier, and will continue to strive for perfection (impossible as it may be) all in the hopes that he won’t have any complications and to teach him how and why he needs to manage his diabetes as he grows. I don’t know if there is any way to guesstimate his A1c without checking it based on BGL averages, I’ll have to do some research, but it doesn’t seem like it would be accurate as the finger prick tests are nothing more than a snapshot of a moment in time and not a good indication of how things had been pre or post test. I will post the results and possibly ask for advice when the test gets done.

Only the Parent of a Diabetic…

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Just a quick post in response to something that made me think about my new role as father of a diabetic. I never thought I’d see a day when I would view my 2 year old playing with needles as a good thing. But today, this is what I see…

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My first reaction was a quick “NO, put that down”. Then, I thought several things. First, I don’t want him to think his lancet is scary or dangerous or something to fear. Second thought, “I don’t think he can even do it”. And my final thought was, “Hey, it’s part of his life, he may as well get used to it, we’ll see how it goes”. Well he did. Not only did he figure out how to line up the hole and push the button, he managed to draw blood, pick up his monitor and excitedly say “JUICE, JUICE”. We finally had to take it away after another minute because he wouldn’t stop “testing” himself. All in all, I can’t complain about how well he is dealing with everything.

On a Happier Note…

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I have come to realize that life for the parent of a diabetic 2 year old is a tense, frustrating and scary one. There is never a time when we don’t have to worry about something (carbs, doses, naps, nights, etc…), but this doesn’t mean we can’t be just as happy as we were waaaaaaaaay back in July when ignorance was, in fact, bliss. I want my posts to be informative, get some of my own questions answered and be helpful, both to myself and to others. However, most of the stuff that consumes my mind these days tends to be things that are related to the earlier mentioned items, scary and frustrating. That’s why I want to start posting some of the happy stuff, too. I’ll start simple and just put up some pictures that bring a smile to my face and warm my heart a little.
Kids in Pagosa
Remember my “Ignorance is bliss” comment? This is exactly what I meant. As my son was slipping into DKA (Diabetic Ketoacidosis) my family went on a few camping trips both in our state and neighboring states. Of course, we didn’t know that there was a problem at this point (although now looking back, he was most certainly getting worse during this, our final camping trip of the season). We feel bad for him knowing he probably felt like crap the whole time, but all in all he had a blast going through southern Colorado with his big bro. While we look back with mixed emotions about these trips, my wife and I are greatful he got to really enjoy his summer before his whole world changed.
Bradley at UNMH
This is a picture of my son Bradley while he was in the hospital a few days after his diagnosis. Not a happy time for any of us, so why did I choose this picture for my post? This was his first trip to the children’s play area after the doctors got him out of DKA, got his pH back to within a normal-ish range and were now less than a day away from moving him out of the PICU and into the Specialty Care Unit. It was so wonderful to see him playing and smiling, out of the bed and disconnected from all the drip tubing (although all the ports were still in his arms). This was our first chance to see that he was going to be fine, even with everything else that was going on.
Kids at park
Out of the hospital and back home. The whole family took a trip to the park and let the kids run wild. We wanted them both to see that even though a lot had changed and things were going to be more difficult, they could still play, have fun and be kids. Connor, our 6 year old was already doing his own “Awareness Campaign” at the park by telling all the other kids about his little brother’s diabetes, what he CAN do, what he CAN’T do and that they shouldn’t worry, they can’t catch it. It was great to be home after a week in the hospital and while things are still hard and we worry a whole lot more than previously, we are so thankful for our children’s health and happiness.

Type 1 and Some Random Confusions

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Over the past week or so, the management of my son’s Type 1 has had some confusion inducing moments.  I know that these things are normal and have probably been experienced by everyone who deals with diabetes, but they are new to me and it can get a bit frustrating.

First, these freaking sugar level fluctuations.  Five days ago, my son was coasting along spending most of his time between 100 and 200.  Sure, he would have a spike to 250 or so just before dinner, but other than that his levels were pretty good.  The next day we can’t get him under 225 and his spike is close to 300.  We call our diabetes team and are told to leave his doses alone and call the next day, so we do, only this time we inform her that he has hovered around 250-280 most of the day with only one reading under 200 in the previous 2 days, and unfortunately this was a 69 and led to a juice correction.  We adjust his Lantus to 3 units, up from 2.  That night, his levels creep to over 300.  This is with a new, higher Lantus dose and a 1 unit correction at bedtime.  In the morning, another phone call prompts an increase in Novolog from 1/2 unit per 20 grams to 1/2 unit per 15.  That was yesterday and it was great.  Levels stayed constant between 100 and 200, no spike above 200 and no juices.  At least until bedtime.  He was 148 at 8:00, dropped to 78 at 10:00.  BRING ON THE JUICE!  An hour later, 197.  2 a.m. comes along and we’re getting an 84.  BRING ON SOME MORE JUICE!  4:00 and he’s back up to 165.  WTF was that all about?  Today was just as strange.  His numbers ranged from the 60’s to the low 400’s.  Yep, I said FOUR HUNDREDS.  Now I know he has only had Type 1 for a few months and that his pancreas is still probably dumping some insulin from time to time.  And I know that different things can cause his body to throw off some sugars now and then, but this is getting a bit crazy.  Anyone had experiences like that?  I have come to realize that diabetes is a dynamic, ever-changing condition, but does it ever get easier to control?  I certainly hope so.

NEXT……..What’s up with the insulin coming out of the injection site so frequently?  I’m sure others have this issue, and it may not be a huge problem, my only concern is that half of my son’s dose is oozing out of the hole after we inject it.  He gets a unit for a full meal and when I see a bubble of insulin on his arm after his shot, who knows how much he is getting.  Is this causing the above problem?  I don’t know.  How do you prevent it?  Again, no idea.  If anyone has seen this issue, please let me know if it can be prevented. 

One Thing You Want People to Know about Diabetes

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I started this blog for several reasons.  First, I want to raise awareness for Type 1 diabetes.  Second, I want to learn as much as I can about diabetes so that I may better help my young son grow up healthy and happy.  Finally, I want to give back to others who are affected by diabetes by providing some information that has been useful to me and inform others about the disease, technology and helpful tips/techniques/equipment.  This month being National Diabetes Month, I am taking this opportunity to raise awareness and challenge you to do the same.  On November 2nd, my wife, children, parents, in-laws, cousins and friends joined as a team for the JDRF Walk to Cure Diabetes.  Together we raised over $1700 for research.  On the 14th, my family and I wore blue in honor of World Diabetes Day and my 6 year old told some of his kindergarten friends about his little brother and what diabetes is.  Now I am taking a challenge issued to bloggers to let people know one thing about diabetes.  Please comment with one thing you want others to know as well.

Here is my one thing:

Feeding my 2 year old diabetic dinner is quite an involved process.  When making the recipe, we must calculate the total carbs in each of the ingredients.  We have to divide up the portions based on weight and figure how many carbs are in his serving.  Sometimes, as in the case of pasta, we must weigh a serving, count total number of noodles in a full serving, cook the pasta and then count out the noodles required to meet his nutritional requirements.  Knowing that children often do not eat everything on their plate and typically make a decent mess of their meal, we have to scoop up food off the floor, reconstruct the components of the meal and re-weigh the remaining food to subtract this total from the starting number in order to accurately calculate his insulin dose.  No more opening the pantry, heating something up and eating.  Now dinner includes the food, some weights in grams, a decent amount of math and post-consumption food reconstruction.

I have posted a link to the site from which the challenge was issued.  What is one thing YOU want people to know?

http://www.recallcenter.com/life-diabetes-diabetic-bloggers-want-know/

“November is National Diabetes Month and here at The American Recall Center, we wanted to do our part in helping to raise awareness. Diabetes affects over 25 million people in the United States, or 8.3% of the entire population. Within those 25 million people, over 8 million are undiagnosed, or do not know they are living with diabetes. For diabetes being so widespread, there is a lack of common knowledge about how to recognize diabetes, the different types, and what it takes to manage the disease.  There are also potential risks associated with taking diabetes medication, such as Actos, that we are happy to educate this community about.  An Actos recall has been issued in France and Germany, while the US issued a black box warning on the drug in 2007.

At The American Recall Center, we want to use National Diabetes Month as a platform to help educate everyone about life with diabetes and what they can do to help. With that idea in mind, we reached out to bloggers from all different walks of diabetic-life and asked them for one thing they would like the world to know about this condition. The infographic below, “Life With Diabetes” describes what they want the world to know. So this November, help us raise diabetes awareness by sharing, posting, adding your own voice, and making diabetes awareness the forefront of the national conversation!”