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CGMs…a Few Points….Parents: We have NO Clue what Our Kids Feel About Nightime Lows!

Posted on October 23, 2012 | by tomkarlya | 8 Comments

CGMs. Continuous Glucose Monitors (CGMs) are fabulous devices. They not only remotely give you an idea on your blood glucose number they also indicate where one is trending (blood sugar rising and/or dropping).

The new Dexcom G4 Platinum looks to be a modern, thinner, easier to read, and more accurate CGM. The Dexcom website states it is the lightest one out there at 2.4 ounces and also the signal can go three times further.

Kaitlyn had not heard that it was approved and from what I am looking at, it sure could be another great asset in Rob and Kaitlyn’s diabetes toolbox.

I do believe that all CGMs should also have what Medtronic has created in their mySentry device. This device can sit on your bed stand and alert you should your child’s blood glucose runs low. It comes with bells and whistles to alert you in the middle of the night. This device is an incredible asset and not just for the parents. When Medtronic flew a bunch of us out to their HQ to see this device, it was a highlight for me to witness. We were informed that people living with T1 as adults could plop this puppy right on their night stand to warn them as well. What a godsend this device is to everyone. I felt very naive when I learned from Kaitlyn just how much a low blood sugar during sleep plays on the minds of those with diabetes. I asked a million questions…..PARENTS: WE HAVE NO CLUE. What we feel is NOTHING compared to what people with diabetes feel. What a lesson she gave me–our fears pale in comparison to their fears. We just have no clue.

All CGM companies need this type of device……get to work folks. 🙂

When dealing with CGMs–I still believe the best-selling point to our kids is that even though one should not dispense insulin based on the CGM readings (it is a technicality that is required for all companies to say as their accuracy is not as exact as the blood glucose meters that are not as exact as perfect as they should be if accuracy is to be exact….did you get all that?–in other words it is a disclaimer—Based on a comment from Tia–you can read her comment below–I need to add the following: It is not ‘merely’ a disclaimer–it is a disclaimer for an absolute reason. One should not dispense insulin based upon a CGM reading and I am not inferring anyone should…ever; until such time that they are as accurate as they need to be to dispense insulin–thank you Tia)–they will feel better in their day-to-day dealings. Mainly because of the incredible trending mechanism in CGMs that allow the individual to actually know they are running low or high BEFORE they actually feel it.

So when speaking to your kids—-let them know the CGM is an asset to make them feel better without the wide swings, THAT is the point to make. Of course there are always exceptions to the rule.

CGMs are now a ‘must carry’ item for insurance coverage in NY State (thank you NY State Assmblyman Bob Sweeney—a POWERHOUSE in diabetes legislation) and check what this means in every state because there are restrictions how insurance coverage works for this device.

When Kaitlyn was diagnosed in 1992, these items were a pipe-dream. Use them…..a dream becoming a reality is a good thing…..until we find that cure.

I’m a diabetesdad

SHUT UP and Give Her a Piece of Candy!

Posted on October 3, 2012 | by tomkarlya | 14 Comments

I’m just a tad tired of seeing ‘that’ horror on the faces of those people who have no clue what bearing candy has in the life of those who have diabetes; honestly, the answer is that it has none.

“WHAT ARE YOU DOING? You cannot have candy out on the table; you have two kids with diabetes!”

(What I wanted to say) “Shut up you more-off (morON is too good for them), you have no idea what you are talking about. It’s not poison, it’s candy.”
(What I said) “No, it’s okay. They can eat candy, they just have to know what the carb ratio is, and bolus accordingly; and depending on their blood sugar level, they might just be able to ‘pop’ it in their mouth.”

Well when I tell you that the mouth was just hanging open.

“Reallllllyyyyyyy” (really long pause) “Wow……..who knew?”

AHA…..and THAT is the point, STUPID. We…..the parents know. AHA……the ones with diabetes know. AND WE ALL NEED NO HELP FROM YOU.

So here’s the deal, IF I do not mention to you that your daughter is not really at her girlfriend’s house like she said or your teen-age son was not really in the woods looking at birds with his friends and those cans were not soda, or the mints and perfume your daughter uses is not that she is so hygiene-savvy, or when your kids say they are at the movies and do not remember what it was about; all leads me to say that MY KIDS and WHAT they eat should have no place on your list of things that you feel compelled to share with me. If I don’t tell you how to raise your kids, don’t tell me about mine—-especially when it comes to diabetes.

Because no matter how much I beat myself up over this wretched disease and everything it means, does, is and continues and regardless what YOU think—–I AM THE EXPERT.

Thank you.

Feel free to hand this out as needed. 🙂

I’m a diabetesdad.

I Would Not Tell You What To Do….no…No…NO!

Posted on September 27, 2012 | by tomkarlya | 3 Comments

Two friends are having lunch. A third person joins them and says, “Hey, did you see the clown out front?” One friend responds, “Was it a real clown or one dressed as one?”

My point; people hear (or in this case, read) something but do not catch the full meaning. I posted something two days ago which in many circles became a very healthy conversation. In others…….not so much. A few people posted what they thought my blog was about and the discussions took off from there.

I, (I would like to say never but my folks taught me never say never) try to take the pathway that does not tell anyone how their diabetes should be managed. It’s a very personal choice for people with diabetes and for parents managing their kids.

I certainly would not want it done to me, and I try VERY HARD not to do it to others. Motivation? Get Involved? Don’t do Nothing? Yes that I do. Management? NO.

My post two days ago entitled, My Child, When Low…Will Wake up…..Right? Um…..Not Necessarily was in no way meant to; or suggest that one should or should not wake up in the middle of the night for night-time blood checks. A few people commented in various places and it was ‘off to the races’.

Whether you do or don’t is up to you and your choice alone. My purpose of the post was only to say that I always thought that a low blood sugar would wake up my kids as it has……..but relying on that; I needed to take another look.

If blood sugars are at a level that you are comfortable with at bedtime and you are okay with that; that is fine by me. I have no right to say otherwise. I was pointing out that I ALWAYS thought my kids woke up…..and I now question that IN OUR LIVES.

What you do is up to you.

I share this because the purpose of my blog is to make people think and inspire when possible by shining a light on the so much so many do every day with that asterisk called diabetes.

Never misunderstand or mis-communicate my words……….diabetes management is up to you. MDI, Pumps, CGMs, insulin, meds, dogs, no dogs, —-it is not my place to tell you what to do—-and no one else should either.

I have been astonished at the wonderful feedback which I thoroughly have enjoyed over the past few weeks since I started this blog as over 11,000 people have read what I have written. I just wanted to set the record straight how I like to work/write and know that I’m an open book and I can be asked anything at any time.

Thanks.

I’m a Diabetesdad.