Wake Us Up Damnit!!!!! Nitetime Lows???? Warn Us!!!!

WAKE_UPI was asked to rerun this column and respectfully I post it again.

Okay—here is the idea.  While we wait for so many things from a cure to better tools for management like a bionic/artificial pancreas; here is my idea.

Knowing one of the BIGGEST fears for parents is losing our child(ren) (or loved one like a spouse or a  person with diabetes) while they sleep from a diabetes reaction—I offer the following challenge for better minds than me to work through, and could be done fairly quickly I imagine.

Knowing that tools like the CGM are already in place where a radio frequency is sent from the sensor to the device that reads blood sugar (and I get that it is not perfected yet)—cannot the same radio frequency be utilized to send a low or low trending blood sugar alarm to a device that could be triggered to wake up the entire household with the warning that the person with diabetes may be in trouble.  Perhaps at 60—or 55—or perhaps you can set it to the number you like that works best for you.  THIS cannot be a far stretch for the device to do from the alarm it is already activating—just make it a real loud activation. REAL LOUD.

Why does it have to be the whole ball of wax for an AP with reading glucose numbers and dispensing insulin and all that yada yada with FDA, algorithms, etc etc etc . (when it comes, great; but we have a long haul before it gets here—this is for the NOW—this is technology available NOW).

JUST WAKE US UP DAMN-IT

Ring bells—turn on lights—send in the cows—-make the frequency trigger something; THIS cannot be all that hard with available technology.

The CGM is already equipped to set of an alarm, based on info it receives from a sensor…right? All I’m saying is to have an ad hoc attachment that can sit on the night stand and get the same frequency that the CGM receives and activate whatever is needed to wake up the entire household when that number from a diabetes reaction is reached.

The answer?  Nope.  But a step until what we wait for is ready? Yep.

I would sleep a little better…….wouldn’t you?

Send this and share this with everyone and anyone to whoever is out there and willing to listen.

Thoughts? 

I am a Diabetes Dad

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Does Anyone NOT RECOGNIZE this Picture? Ohhhhhh Diabetes.

MessI find it extremely interesting that no matter how much we store in our kids’ rooms for night-time lows; no matter how many juice boxes, gels, cookies, glucose tablets, and whatever else we store; the counter in the morning reveals that a blood-sugar-low led them to waking up and making their way to the kitchen.

It is a clear reminder to all of us when our kids go low they will do what is natural and not what we think is convenient.  Because they don’t think of it when they need to; they go to what they need and know. 

As I wipe the counter off, again, I wonder what it would be like to be a parent without any children with diabetes again.  I would love to get pissed off at them for leaving the counter a mess, yet again, as many parents would do if their kids were just eating to eat–but mine do it to stay alive.   I’m being a bit melodramatic about that point I admit, but it’s how I feel today.

But on a particular morning, as I wipe a counter, it is a labor of love to clean the counter because I know that they did what they had to do; cleaning up after them is not on the ‘must-do’ list after a low.  And I am okay with that.

The more I am at this, I find myself knowing that the little stuff just doesn’t annoy me that much anymore.  I also know that there was a time that the little stuff did get to me, but diabetes changes that in a person.  Just too much THAT DOES matter to sweat every little thing any more.

How I wish to have back the times when diabetes was not around.

SIGH

I am a diabetes dad.

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Emergency at 43,000 Feet.

“Ladies and gentlemen, this is your Captain speaking…….”

The tone in his voice sounded different from when these normal-type announcement comes from the cockpit.  Up until this point we were on a non-stop from the UK to NYC’s Kennedy Airport on an uneventfully calm flight.  This was about to change.

The Captain continued, “We need to know if there are any medical personnel aboard, if so, please hit your flight attendant bell.”

Ding.  Ding.  Ding,  Ding.   Well at least that was a good sign.  Four people rushed forward.  Much activity as we were asked to hold our seats.  And after 15 minutes of activity the Captain returned.

“Ladies and gentlemen, this is your Captain again; we know this is a nonstop flight but I have just requested for an emergency landing in Halifax Nova Scotia for a medical emergency.”   An obvious heart attack. I was sure.  We landed, EMS came aboard and the patient was removed.

As I left the plane when we landed in New York, the flight attendant noticed my Children with Diabetes shirt I was wearing; “If I knew that I might have called upon you.”

“Excuse me?”

Our medical emergency was someone with diabetes who left what she needed in case of an emergency ‘low’ (she was quoting the person who was traveling with the person needing aid) in her suit case.”

“You mean glucagon?  You probably should have made an announcement; we have one with us that we gladly would have given the medical personnel.”

Now there is much wrong with this conversation in my eyes and at the top of the list is what was this woman thinking that she did not have everything she needed with her while traveling?  I cannot answer that question and the woman dropped so low that she went into convulsions; hence the emergency landing.

So we learned, as we knew, that NO ONE who has diabetes should not have EVERYTHING they need when on a flight.  You would think common sense….no?

The second is a suggestion we might want to use.  When traveling with diabetes supplies, you might….notice the word; MIGHT, want to consider letting the flight attendant know that should a diabetes emergency occur while you are flying that you have many supplies with you for whatever the reason (you have diabetes or your child has diabetes).

This may never happen again, but when flying again with one of our kids (when we will have most of what is needed, as much as our kids will have as well…I know they are old enough to have it on their own….it’s a ‘parent thing’….parents know what I mean), I will absolutely make sure the flight attendant knows.  I may not agree with ‘how or why’ this emergency happened but once at the emergency stage, it could have been really helpful to know that there was help just 10 rows back.  That would be a good thing.

If we all did this every time we travel, perhaps one life might be saved, and then it would all be worth it….don’t you think?

I am a diabetesdad.

 

Please Send Me a Picture of Your Child in the Hospital

 

There are not many things I’m 100% sure of, really, very few.

My title of this post was to gauge your first reaction.  Of course I would NEVER want a picture of your child laying in a hospital bed, and for the life of me I cannot understand how anyone would post one.

Seriously, when you read the title did you think I had lost my mind?   Why on earth would I ask for such a picture, truth is, I wouldn’t and I never will.  More to the truth is seeing one is not something I care to do either.

PLEASE do me a favor, if you are one of those people who think we have any interest of seeing your child laying in a hospital bed, fight the urge with every ounce of energy; wait until they are better and post a picture of you child doing something wonderful.

We need to celebrate everything our kids actually do……..seeing them in a hospital bed accomplishes nothing constructive.  I just DO NOT see the point and I am 100% sure your child is not in favor of it either; especially a teenager.

If you need prayers, good wishes, and/or hope; absolutely ask away but posting a picture really does not make ANY sense to me……….but I am always willing to learn if you want to state otherwise.

I am a diabetesdad.

 

All I Can Say is………..Whew!!!!!!!!

Two weeks. 

The most important lesson I have learned recently is that so much can happen in two weeks.  To the hundreds of people who wrote to me and wanted to know how we were doing I both; thank you for caring, and apologize for not getting back to you sooner.

I will not go into every detail here but to say we are all okay, although for a while we hadn’t heard from the kids out in the storm working with the fire department and ambulance–that was some of the worst times.   Some of their colleagues were not so lucky and one, in particular, we pray for who stopped to help people in one car and was hit by another; we await word of that recuperation. 

Damage is at a minimum for us and all trees fell all around the house and not on it.  Our neighbors were not so lucky.  It was a two weeks that we will remember for a lifetime; where the second worst storm to hit the United States fell upon us, an election was held, gas is being rationed, power is still out for many, 30 million gallons of water had to be pumped from NYC’s midtown tunnel, power was lost, there was an attempt to steal our generator in the middle of the night, many friends are cleaning up all around the tri-state area, we visited some incredible people in the UK for the CWD UK conference, stopped for a little bit to visit some places new to us, and our return trip that was supposed to be nonstop from London to New York had to emergency land in Halifax, Nova Scotia for a passenger who had a severe hypoglycemic reaction (more on that in a later article).  A very long two weeks.

Much to write about as we move forward but today is just to say 3 quick points; 1).thank you to so many who sent good wishes; 2.)I have been in close contact with many people who have boots-on-the-ground and have heard of no dire need of assistance pertaining to diabetes supplies in our hard-hit area (still monitoring) and 3.) Remember a Veteran this week…..we have so much for they gave their all. 

I am a diabetesdad.

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

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