I've Become a Data Junkie

(Daniels Mom) #1

Our son was diagnosed June 30, 2008; so I am not as "seasoned" as many of you.   However, does anyone else find themselves obsessed with the data?

I download his reads into my software program (way too often) so that I can see the graphs and possibly make better sense of what the trends are (I also have a paper log).

I stand and stare at the numbers in the paper log, as if some magical answer will pop out to me.

I lay awake at night pondering highs.  "Why did he go from 125 at bedtime to 285 at 2 am?"  "Did I mis-measure his food?"  "Did I mis-measure his insulin?"

I searched and searched to find data on what "non-diabetic" glucose levels are right after eating, and how quickly they come down.  I found it.

I wouldn't put him through it; BUT I would love to have a CGM so that I could ALWAYS See what the numbers were.

Does anyone else do these obsessive things or should I make sure my MENTAL health insurance is paid up?

(peteandjulesmom) #2

This is a disease that would make even the most laid back people into obsessive compulsive people...My husband and I are still doing what you do, and most likely we will always do so, until our son is an adult. I do always look for data and it at least lets me know I'm not the only one confused about Type 1 diabetes. I have resolved to take good care of my son, marvel as I watch him grow up--and try to let go just a little--

 

Pete and Jules mom

(car1olyn) #3

I totally used to obsess over the numbers as well, and unexpected highs would totally stress me out and make me think of the long term complications and stuff. But I have mellowed out in the last 6 months or so, and I think that time will mellow you out a little. If only because the obsession is exhausting and you will eventually see that a few random highs or unexpected numbers won't really impact their A1Cs and you will accept that there's only so much you can do.

My girls were both diagnosed about 2 years ago. We've been on the pump since June, and I will say that the pump has helped me not be so stressed out as well (not being able to feed the kids when they were hungry (humalog/NPH and meal plan) was stressful for me.) Give it some time. I really think you will mellow too!

(Lisa kasabian) #4

My son is 10 years old and has been a diabetic for 8 years.  I went through the same thing in the beginning.  I kept spreadsheets and diet, exercize and health records.  It's was hard to realize that there are so many factors our of our control.  I no longer try to track everything but do look for trends in his numbers.  If he starts to show high numbers for a few days we call our diabetic educator and adjust our dosage.  Now we are to the point that we can made the adjustments ourselves. 

We can't figure out the exceptions either.  We have to live with the exceptions and hope that alot of testing and control will help him.  We are looking for the cure.

(ShannonSamples) #5

My son Christopher was also diagnosed on June 30, 2008.  I know exactly how you feel about obsessing over data. My husband is as bad as I am.  They actually told us to relax a little about everthing at the last endo. appointment! At this point we still haven't quite mastered that. Christopher is supposed to start pumping in  early April. Hopefully things will get easier then. At the moment we get to obsess about how the pump start will go!

(cschultz) #6

I know what you mean, my daughter was diagnosed at 15 months and is now almost 10, she has been on a pump since she was 4.  We have now been on a CGM for the last 4 months.  I like the data that the CGM gives me especially the trends.  Since the cgm i spend less time lying in bed wonder how her blood sugar got so high.   there are still a lot of unexplained random highs and lows.  One day will be perfect the next will be bad.  It is amazing how different the body reacts day to day.

(dancemommy) #7

Dearest Daniels Mom,

Your obsessive reaction to all of this will pass with time.  I think everyone experiences it in the beginning.  I have a daughter whom just celebrated her 10th diabetes birthday!  She is a blessing, and I was the exact same way in the beginning (dx age 6).

Everything will get easier, I promise, it is so hard to deal with the overwhelming responsibilities that have been given to your family.  For you I (and any other Mom with a diabetic child), I offer a poem written by Erma Bombeck (? spelling of last name), but the title is "How God Selects the Mother of a Child with Diabetes", it will give you strength, google, print it out, and put it on your refrigerator!

God Bless,

dancemommy

(JamesChambers) #8

Exact same boat...though we definately tend to get more obsessive when he's "off" his regular numbers.

Excercise, birthday parties and family gettogethers still freak us out...

<wife> okay, but if they eat at 2:30 he won't need snack

<me> yeah, but the last time they didn't end up having hot dogs until after presents

<w> so should we send a snack?

<m> no, last time they got mixed up and gave him his snack and the hotdog

<w> i know, his numbers we crazy.  and he didn't even want to eat the cake.

<m> what if we short him on lunch and send instructions with the emergency snack in case he needs something?

<w> or we could give him lunch and let him eat what he wants to...

<m> ...and just correct him when he gets home?

<w> *sigh* i don't want to leave him high like that...maybe I should just go with him...

...but we are learning ever corner we turn to be a little bit more calm about it...

At age seven we're finding it's hard because we don't want him to be dependant or defenseless.  His A1C's are good, but the daily stuff can be killer...

Never mind just a CGM!  I want something that contstantly measures his adrelaline, body temperature and heart rate.  I want that charted against the CGM results.  I want...perfection...

Hehehe...and, yeah, top up that mental health fund.  It may come in handy ;o)

Cheers,