July 30, 2012

Links
From @sixuntilme tweet.

Amazing video: http://t.co/OUqLQcXU

Talking about the first impression of diabetes and how it impacts care. #rds12

Go watch it if you have not already seen it. See it again if you have.


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Location:Welcome to type 1

July 27, 2012

#TwoBits NUmbers and Outtakes

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Here's #TwoBits I enjoyed around the DOC today. I hope you do too.

You Can Do Tis FFL Outtakes: http://www.textingmypancreas.com/2012/07/friends-for-life-outtakes.html

The Good with the Bad (Almost a Clint Eastwood movie title.) Shares this fundamental truth, "with Type 1 diabetes is you cannot dwell on the numbers, it sucks, he’s high, he’s low." Word!
http://bridgetwrites.blogspot.com/2012/07/the-good-with-bad.html

Important Patient Notification: Don't Become Unglued.

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I just got a letter about my son's pump. In red caps it says: IMPORTANT PATIENT NOTIFICATION. I am sure there is another on the way about my daughter's pump too.

Animas wants me to know that the keys can wear and we should check to be sure that while the keys were built to last, some folks' buttons have worn out.  We should reach out to them there is any suspected issue with our pumps.

Thanks for the letter. No worries. We hold these truths to be self evident.



I think it says something significant about how much effort is involved in living with Type 1 Diabetes (T1D) if users wear out the buttons that deliver insulin on their insulin pumps. How many times do you need to bolus to wear out the keys? A crap load I am sure. Each bolus requires a bunch of other stuff too. checking BG, carb counting, considering IOB, activity, protean and fat intake and a partridge in a pear-tree. Okay the pear-tree was deliberately facetious but the rest is only part of the reality. 


But I get it. Pat attention to the devices too. We have had screens crack, button labels wear away, the rubber cover over the buttons come off, cases split and a bunch of other stuff I can't remember. These pumps are on the kids all the time. The pumps take a pounding. 


As if to prove that there is actual rage in a rage bolus we have a broken window upstairs where by son threw a meter that registered unexpectedly high results. I guess at times, all pump buttons get mashed with  a wee bit of emotion. 


Pumps are in use 24/7/365. They go into all kinds of hostile environments regularly. For example my teens' bedrooms, talk about jungles. For the most part the pumps are just fine. That occasionally something is a little off is inevitable. Maybe my kids don't mention it right away. 


I actually think that is great. It means the kids are living life and the pump is going along for the ride. Not - The kids are putting the pump first and avoiding normal kid activities to protect the stupid thing. That is how it should be. Life first, diabetes second. 

Part of our responsibility as users is to pay attention and if something looks funny or acts funny to call the manufacturer. That seems really obvious but somehow I suspect that a notice in the mail means that someone waited for a little funny to become flat out doesn't work. Maybe, from time to time I need to check in with the kids and be sure all is well. 

Animas has been great with us replacing worn and broken pumps. So have a host of other companies like meter manufacturers. I wrote about mySentry a few days ago. I didn't write that somehow it malfunctioned and their normal call process managed to have a new unit in my home at 10:00 am based on a 9:00 pm phone call the night before. (While I was on #DSMA) Great service from the companies happens because there are plans to do it and people who will make sure it happens. (Same for great DOC Twitter chats come to think of it.)

So when I see a letter like this about my son's pump, or the one we'll get tomorrow about my daughters, I see it as a a sign that industry goes to great lengths to support the devices my kids rely on. These firms understand how significant the effort is to try to live well with T1D. They compete, in part, with service.

T1D is stressful. Most of that has little to do with the devices and more to do with the emotions and variability of diabetes itself. So I don't become unglued by an "important patient notification." I see the letters as a sign that people have our back. It is good to know that.

Thanks for being there.

Thanks for the reminder.


July 25, 2012

Of mySentry, The Great Race, the Bat Signal and Teens

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We are in the early stages of using mySentry, Medtronic’s remote CGM screen. Right up front I need to say that the good folks at Medtronic have made the device available to me to try for a a few months at no charge. They did not ask me to write about it or make any request other than I give it back when I’m done and if I write that I disclose they are lending us the device and supplies.



Delaney is the guinea pig.

Initial I thoughts that mySentry is a great device for folks with younger kids, not teens. Little kids are more sensitive to insulin. Their crazy growth and activity patterns make overnights hard to manage. A remote CGM scree that alerts, loudly (and this thing is loud) I thought would be brilliant to help parents sleep better when the numbers are okay and be altered when they are not.

I didn’t think it was as advantageous for older kids. We are not using it for overnight alerts. In fact it doesn’t live in our bedroom but I do see real value in it.

Don’t get me wrong, I do look at the overnight trend lines. CGM is brilliant for managing overnight trend lines. I made a few minor tweaks to her night time basal. Little adjustments that would not have been possible with finger-sticks unless I got up every 20 minutes or so. This is great but not the surprise that makes me see value in the remote CGM screen with a teen.

The value is mySentry helped me not nag my kid about diabetes. No small feat.

There are time all d-parents worry about their kid’s diabetes. Most of these times our kids are not actively worrying about there diabetes. They are going about their lives as if they have actual lives. Smart.

A quick glance at mySentry could show me that everything was okay and not go nagging her about her blood sugar. Not bugging the kids based on my fears is a good thing. Now that didn’t mean I didn’t talk to my kid. It meant that I knew to shut the heck up about diabetes or If I did say something to positively reenforce good behaviors. So we would talk about her latest sewing or other creative adventure and I could say nothing about diabetes or I could say “Max” says you are doing a great.

“Max” is the Delaney gave the CGM’s. Loosely after Perter Falk’s character in the Great Race. The guy Jack Lemmon’s Professor Fate would tell, “Push the button Max.” Classic film. Go rent it now... No wait... buy it, its a keeper.



Max also is a great way to see how fast insulin from a bolus takes to start being effective and how long it lasts. I found out that her bolus doesn’t really kick in for 45 minutes to an hour. Then it seems to trend down for about three hours. Good to know. I do most of the dinner cooking and so I know when dinner will hit the table. I can give her a pre-bolus heads up sooner than I was to better match dinner. I also a clearer idea of the time there is IOB. This is good information that your typical teen could care less about but dad can adjust in the pump settings.

Not nagging you teens is good.
Giving teens positive feed back is good too.
So are better pre-bolusing and IOB understanding.

What about when things are less than good? Well sensing shows trends and sometimes those are heading the wrong way. (This is gong to get confusing because while “Max” is the CGM sensor the other mySentry parts have other names. The relay station in her bedroom that listens to the pump and retransmits that signal to the screen down stairs Medtronic calls the mySentry Outpost,  we call it the “Bat Signal” because it is a night light with stuff on the light part. That makes the mySentry screen either the “Bat Computer” or “Commissioner Gordon.”)



Sorry I digresses.

Anyway if Max tells Bat Signal something is amiss then Commissioner Gordon gives me the opportunity to intervene before it becomes a real big issue. The key here is not to be  seen as an idiot. Not easy for a parent of a teen.

That is not to go running over and say “Max lit up the Bat Signal and Commissioner Gordon sent me over on an emergancy call.” First that sound ridiculous. Second the key with teens is to build a relationship of trust and they aren’t gonna trust Max if he is a stool pigeon. So when it is clear she missed a bolus, I can stop by her room and chat about about her latest sewing or other creative adventure and as I am leaving casually mention checking and correcting. The message here being the stuff she is interested in is more important than diabetes and oh yeah don’t forget the diabetes.

Still, she is not a huge fan of Max. It is another thing to wear and carry (I didn’t ask her to try to learn to use a new pump too.) inserting a sensor is a little less than user friendly and at times so is taking it off. As a result I find I like Commissioner Gordon more than she likes Max.

It is her body and her diabetes so ultimately it is her call how much she wares it. I think that is very important, maybe the most important thing for me to take away from the mySentry experiment. Using it is her choice.

July 21, 2012

Freedom, Love, God and Bad Things Happening

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I wrote most of this years ago for another T1 dad. Today the gist of this is hard to accept in the context of the horrific shootings in Colorado. I try to accept it none the less and have changed this post to reflect that challenge. The original is here.



Bad things happen to good people. 




It isn’t God’s will that these bad thing happen but part of God’s providence. There is a distinction there that is small but I find very significant.

If bad things only happened to bad people we would all easily know who’s evil from the good. Or if god stepped in and stopped occurrences of evil it would be force our acceptance of that god. God showing up in a cloud and tossing about lightening bolts is hard to choose to not follow. There would be no question of who was in charge and we would be forced to believe in that all powerful god.

I think of God as a parent. Parents want their kids to do okay and to love them back. We all kind of get around to the idea that the kids have to choose to be okay and love us back for themselves. We can't force real love from them. 

God being infinite is infinitely more loving and wise is more aware of this truth than we are. So God is infinitely more motivated to let us, his children, choose to love him by NOT forcing us to do so. In short God keeps us in freedom to choose to love God or reject God because that is how love works. Because someone choose not to love God and their follow human beings doesn't mean God doesn't exist or failed to love those hurt.

So what does this have to do with the topic at hand? Lots. First we get what we can handle or more precisely what we can handle with God’s help. Nobody did anything bad to deserve this. The victims and we as a group, nation or human race are not being punished. It is the result of freedom. 



Some simpleton is going to say this was god will. I refuse to accept that the harm done was Gods will. I can try to see that it has to be permitted because the freedom to choose love over hate is God's will. Not that that is easy.


It is real hard to keep that in mind particularly as those wearing religious garb say it the shootings were their god's will for some obscure unrelated behavior and projecting that they are all wise and speaking for god. No. They are just human and so is the rational that God would punish movie fans in Colorado for some others' behavior. People can be capricious like that, an infinitely loving God is not.

Second, we only get what individually and collectively can handle, if we couldn’t, if it was going to break us for sure, we wouldn’t get it. That ain’t saying it is an easy load to bear. It is saying we have an even shot. No more, no less, we are in freedom to choose to love God or not. At time that choice is hard. This is such a time. 

Third somehow there is a way to be better for all of it, we have to find that. That is our job and why we are free. We individually and collectively can choose to come out better. I am not so sure that I know what that is. If I figure it out I’ll let you know but it is there someplace. Our gig is to find it and do it.

I am coming to feel that community is more than it seems. We are here to help each other with difficult things and the fact is the real issue is how we let disturbing things get into our heads and hearts. That is about choosing compassion over rage. 
Compassion for those hurt. Active chosen compassion and love that honors those suffering without offering a trite solutions.

It may be that we are here to really reach out and say, “This is wrong. I will stand by my hurt fellow citizens to help by acting in accordance with what is right.” We can’t change the way an individual acted and thought. We can support each other and in doing so help ourselves to be on a better path.

So let me say that I empathize with every negative emotion we are all facing, I know them first hand. The real spiritual issue is not to let what we experience as the shallow hollow self interest of others turn us to those same harmful motivations.

Stand up for our community. We were put on this path because we can come out of it a better stronger man, woman, father, mother, husband, wife, son or daughter. I probably can too. It may well be that by sharing our experience is a way to help us all see what is or real value.

Stand humbled but proud of the choice we each make with the freedom god gives us all . Do so in away that makes us, them and God proud of us. I have faith we can continue to do so.

In the long run - it is how we each react that counts.



Choose to act from love and act. 

July 19, 2012

Charging for CGM Download at Endo?

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My friend Ann Bartlett has an interesting story up on her blog. It seems that her endo charges for downloading and looking at the CGM data. Check out her post here: /www.healthcentral.com/diabetes/c/9993/154668/data-appointment?ap=2008

She is looking for anyone with similar experience. If so leave a comment there.  

Diabetes Pump & CGM Integrated on a Cocktail Napkin

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I got into a rousing conversation about the possibility of over bolusing based on CGM information over drinks at FFL. To be specific we were talking about over bolusing or stacking insulin based on high BGs on a CGM screen. I started drawing on napkins at which point there may have been a case to be made that I over bolused beverages.
Someone pulled out their pump CGM combo and showed a little tick mark that indicated a bolus. Good start. However I think it would be great to see more. How about putting the insulin on board on the CGM trend line as an area chart. This would be a clear visual there is IOB. 
This IOB area would be linked to what ever the pump uses for IOB calculations. For simplicity imagine it runs off evenly over three hours. So when you bolus it puts a little triangle on you CGM screen. The peak is the total units bolused and it slopes down over three hours to zero. So if just after at 6:00 pm bolus for a quick dinner your CGM would show IOB reaching out beyond the current time.  Say something like this:

If you extended the bolus it would take a different shape. The point still is to make IOB clear on the integrated pump cgm screen. 
Say that bolus was part of an imaginary day that started off okay with overnight bouncing around 130. You pre-bolus a little for breakfast and manage to only spike a little to about 200 and work your way down. Dash for lunch try to pre bolus a little spike a little more but come down too much. - because what is a day without a low? Grab a juice to treat the low and pre bolus for dinner. At the time you pre bolus maybe you day’s cgm IOB looks like this: 

(BG scale on the left IOB on the right.)

Brilliance right? And it only took a few drinks. 

DOC has News of JnJ Insulin Patch Pump Acquisition

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Kerri at SixUntilMe.com reports on a JnJ of acquisition of Calibra Medical. Who are they you ask? the DOC Bernard has the story. Who are they. Bernard has the story here.

There is an interesting exchange of info on Kerri's Facebook about it here: http://www.facebook.com/kerrisparling/posts/466578396688569?notif_t=close_friend_activity

Think of this as a wearable insulin pen more than a traditional pump and you are on the right track. 

July 11, 2012

MDUFA III - The Summer Sequel

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Hollywood is all about summer block busters. Often these are remakes or spinoffs. So Batman Rises again, Spiderman get a new look and there are More Men are in Black. A less well know franchise just inked a renewal. Even more surprising is the group who produced it - Congress. It is called MDUFA III. It is a sequel. 


You may not be very familiar with MDUFA. I mistakenly call it Mustafa or Medusa regularly. It isn’t a Lion King or a monster of myth with snakes for hair. MDUFA is DC speak for Medical Device User Fee Amendment is part of the regulations that fund and manage the FDA. Some wags may content that means it is a scary monarchical monster but is isn’t.

If you live with a chronic condition that is managed with medical devices you should probably know a little about MDUFA. It started in 2002. (1) It allows for industry to pay fees that fund the FDA. These fees help pay for the review of medical devices. These fees were a means of preventing a backlog of device and drug approvals by funding FDA staff to review applications. 
The review that was just signed into law also creates performance goals for the FDA review process with outside third party review of the FDA’s pre-market approval (PMA) process, meeting these goals. The goal are: 
  • For submissions received in FY 2013, FDA will issue a MDUFA decision for 91% of 510(k) submissions within 90 FDA Days.
  • For submissions received in FY 2014, FDA will issue a MDUFA decision for 93% of 510(k) submissions within 90 FDA Days.
  • For submissions received in FY 2015 through FY 2017, FDA 
To put that into a diabetes perspective the International Organization for Standardization (ISO) 15197 standard that specifies that, for a blood glucose level of below 75 mg/dl, the monitor reading must be within 15 mg/dl of the reference reading and, for readings of 75 mg/dl or higher, the monitor reading must be within 20% of the reference reading in 95% of tests. (2) So starting in October 2012 the FDA will ave tighter response time goals that our meters have accuracy goal. Yes I know that is a bogus comparison but what matters is there are goals to turn around device applications. Those goals get tighter with time. 

I will concede that MDUFA is not as exciting as a summer action movie and it may take longer to read the entire legislation than a film takes to watch. That said I am happy to see this action taken by Congress before the summer is over and election year politicking get in the way of progress. 



Notes:

(2) International Organization for Standardization. In vitro diagnostic test systems—requirements for blood-glucose monitoring systems for self-testing in managing diabetes mellitus. 2010. Mar 20, ISO 15197:2003. http://www.iso.org/iso/iso_catalogue/catalogue_tc/catalogue_detail.htm?csnumber=26309 Accessed.


July 6, 2012

Coco Goes to School

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Lilly and Disney have a new Coco book out. If you have a little type 1 in your family get a copy.

My understanding is that Lilly will make the available to Endo offices through the Lilly physician sales process. If your Endo hasn't heard of it, maybe you can suggest that they should call Lilly and get you one. Personally I and every social media person who met with Lilly recently advocated for more distribution channels. For now call your Endo.

In this adventure Coco goes back to school. You may have figured that out from title.

Coco is a little nervous about T1D and her class. She visits the nurse eats well but has treats and does a science project.

I care a lot about school and Type 1. I am an ADA safe at school advocate. This book is fantastic because it aims at the kid. Diabetes is as much attitude as science. Coco helps tykes have the attitude they can succeed in school.

That is brilliant enough to post about late at night with a cell phone.


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