night – DiabetesDad

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

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.

My Child, When Low….Will Wake up…..Right? Um…..Not Necessarily.

Posted on September 25, 2012 | by tomkarlya | 41 Comments

I had the opportunity to hear Jeff Hitchcock present this weekend and he addressed night-time testing and the ‘thought’ that our kids wake up when they feel low.

It is thought by many (us…..definitely) that should our kids start to feel low while they sleep they wake up. I know for me it was a fore-gone conclusion because Kaitlyn has done it most of her life.

Does it turnout that we were merely fortunate?

A study from the University of Luebeck in Germany tested 16 nonT1 patients and 16 with T1 diabetes. During the control time none of the patients awoke. In the test of the two groups presented with hypoglycemia; 10 patient in the healthy group awoke when presented with hypoglycemia while only 1 in the group with T1…….

Conclusions: A fall in plasma glucose to 2.2 mmol/l (40 mg/dl) provokes an awakening response in most healthy control participants, but this response is impaired in T1DM patients. … Failure to awaken increases the risk for T1DM patients to suffer prolonged and potentially fatal hypoglycemia. ***

How conclusive is this study?

Well given it is not a huge sample; but it is enough for me to know that either by CGM or testing in the middle of the night is something we probably should all be doing more; and not merely depending on our child, and/or loved one, to merely awake on their own.

This is not written to scare anyone but numbers are numbers and it is a tool/guide/reference for us to consider as we work through the daily management of diabetes.

It has always been just accepted that Kaitlyn and Rob would just wake up when they are low…..this study paints a different picture albeit a small sample group. That said; until such time that someone tells or shows me differently–we will no longer JUST ASSUME they will wake up when low.

Granted that other factors may play a role if we choose to wake up and test them in the middle of the night or not–but one of those factors, which will be removed in our house, is the 100% belief they will just wake up. How about you?

I am a Diabetesdad.

Editor’s note: My point here is we probably should not merely 100% accept that every time PWDs go severely low in the middle of the night—they will just wake up.

***Bernd Schultes, Hamila Jaich-Chara; Eva Reiprich; Werner Kern; Alchim Peters; Herst L. Fehm –Department of Internal Medicine University of Luebeck, Luebeck Germany
Steffan Gais; Manfred Hallschmig; Jan Born-Department of Neuroendocrinology; University of Luebeck, Luebeck Germany
Kerstin M. Oltmanns- Department of Psychiatry & Psychotherapy; University of Luebeck, Luebeck Germany
Emails may be directed to: Schultes@kfg.uni-luebeck.de

Why Do We Get Up in the Middle of the Night?

Posted on September 15, 2012 | by tomkarlya | 3 Comments

A friend of mine asked me recently if I still get up in the middle of the night to check our children’s BG numbers? My answer was only if we feel there might me circumstances that happened during the day that might add to the possibilities of them running low.

SInce she asked me that question I have been dealing with another thought that I cannot seem to shake out of my brain:
So that means that I’m no longer afraid of them dying while they sleep….right?

When Kaitlyn was much younger I once crossed my wife in the hallway at about 3 a.m.–I was later than my usual 2 a.m. check and she was earlier than her usual 4 a.m. check. Turns out for over a year we wer doing ‘our thing’ and didn’t know our partner’s routine.

You see, if I checked and needed to treat a low, I did—-I guess I was supposed to write down what I was doing…….Duh (as I said a million times as Diabetesdad, no one has made more mistakes than I).

I eventually got it correct and did as I should have been doing all along.

But now at this almost 20 years, and now with 2 kids with T1, have we just accepted the fact that they will wake up in the morning? Is that wrong? DO we finally have it down to where we think we understand diabetes? Is that a dangerous way to feel; are we playing craps with their lives?

Last time I was home I got up at 2 a.m. to check if they were breathing…….at age 22 and age 17; they were not in bed yet.

I wish I could go back to when they were kids. I knew what I was doing then……..or did I?

Do we ever REALLY know?

I’m a Diabetesdad.