November 29, 2007

Feel Felt Found

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At CWD a parent asked for thoughts on approaching her child's school about a situation where her D child was disciplined for behaviors that may have in part been due to high blood sugars. We D parents all know how hard it is to learn to check first and consider BG as a behavior factor in raising our kids.

My thought, from the dispassionate distance of the Internet, was to approaching it using the old “feel - felt – found” technique. The key isn't to tell others what to do but to lead them, in this case the school, to a new behavior. You may feel... Others have felt... doing this they found… something like this:

With diabetic kids it is hard to know if they are acting out from will or from the complications of their condition. We respect that you may feel that our child was acting disrespectfully. We support you and spoke with her about the importance of showing respect.

You may be interested to know her meter readings suggest she may have been having blood issues. We have had instances where we felt discipline was necessary and discovered her blood was so far out of range that the behaviors we were seeing were signs of that blood sugar imbalance. It is hard in those cases to pause and test, particularly where the behavior is out of character and we are disappointed with the behavior. We, and many other diabetic care givers, have found that when blood sugars are well outside range it can and does affect cognitive ability and behavior.Checking first is difficult. Diabetic parent’s around the country talk about the struggle to remember to check blood sugar first and discipline second. It is running topic on web sites dedicated to raising diabetic children, to the point of many folks joke darkly about how they finally to a point where they think, your blood sugar had better be way off or you are going to be in trouble.


So the keys here are:
  1. Recognition of what feelings MAY be (the conditional may is important, it softens things by moving the conversation to a hypothetical maybe)
  2. Call in the experience of others who felt similar (build empathy, you are not alone if you feel this)
  3. Then use what those other - not you, others - found, as a guiding path to what to do.
Sounds easy. It isn't I know doing this feel felt found calmly in real life is about as hard checking blood first when there is behavior that may warrant discipline. Here is the scary part, that technique is something I learned teaching bankers of all people in a training class - ya adapt and improvise what ya can. (Thanks Cohen Brown where ever you are.)

Some people feel the have questions.
Others have felt the same way.
They have found CWD is a good place for conversation. - LOL see ya can use it for anything.

November 27, 2007

Correction: It is an adjustment.

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What we say matters, or so I hear.

At a session on effective type 1 parenting I picked up the little gem that we should call blood measurements checks not tests. The point being that a check is a check to see where things are. A test implies there is a right and a WRONG answer.

More importantly than the term is what we call it with body language and reaction. So I have held the balloon drop and streamers I usually schlep out for a blood glucose of 103. (Ever notice the BG reading on meters in ads? Always dead on target.) It is just as important hold back the Spanish Inquisition (no one expects the Spanish Inquisition) that accompanies a reading of 427.

Our kids try to please us, or at least stay out of the dog house. They give us, what gets them a good response from us. What we want is for them to be aware of and react to their blood sugar. We don't want them feeling they have a reason to hide numbers from us. Our reactions have an impact on their behaviors. So no balloons, no inquisition.

So if the blood is high, I (try to) calmly thank them for checking and correcting.

WAIT! Correction implies they were incorrect to start! Maybe I should correct my behavior and get used to calling it an adjustment. - That would that be the correct thing to do. LOL.

I see your Tesch and raise you Richard

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We just can't use pumps....

The American Diabetes Association Expands Commitment to Youth With Type 1 Diabetes


ALEXANDRIA, Va., Nov 27, 2007 /PRNewswire via COMTEX/ --

Tesch West, ADA's National Youth Advocate, emphasizes the critical need for

ALEXANDRIA, Va., Nov. 27 /PRNewswire-USNewswire/ November is American Diabetes Month(R) and the American Diabetes Association (ADA) is recognizing "The Many Faces of Diabetes" by teaming up with their newly selected National Youth Advocate, Tesch West of Utah, and calling attention to the critical needs of youth with type 1 diabetes.

November 25, 2007

Declaration of Independence

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Our D son turns 14 at the end of November. With that in mind I offer the following, with apologies to Messrs Jefferson, Adams and Franklin for mutilating their original work:




With Diabetes, November 30, 2007
The unanimous Declaration
of the parents of someone who is no longer thirteen in the united
States of America

When in the Course of human events it becomes necessary for one people to dissolve the medical care bands which have connected them with another and for them to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature's God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.

We hold these truths to be self-evident, that while all kids with type 1 are created equal, their diabetes may vary, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. — That to secure these rights, glucose management is instituted among them, deriving its just powers from the consent of the managed, — That whenever any Form of parental oversight becomes destructive of these ends, it is the Right of the People with Diabetes to alter and in time to abolish it, and to institute new glucose management, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness. Prudence, indeed, will dictate that glucose management long established should not be changed for light and transient causes; and accordingly all experience hath shewn that mankind are more disposed to suffer, while evils are sufferable than to right themselves by abolishing the forms to which they are accustomed. To avoid a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their duty, to throw off such glucose management, and to provide new Guards for their future security. — Such has been the patient sufferance of these kids; and such is now the necessity which constrains them to alter their former Systems of Glucose Management.

The alterations will be independence free of repeated injuries and usurpations, all having in direct object the preventing the establishment of an absolute Tyranny over those who's blood is being controled. To prove this, let Facts be submitted to a candid world.
  • Independence is for your parents to give Assent to Laws of BG control, the most wholesome and necessary for the public good.
  • Independence is you doing things in the ways that separate but equal.
  • Independence is the recognition that, in transition and after, Your Diabetes May Vary, that doesn't mean you did something wrong, in means you need to adapt and improvise.
  • Independence means it OK if you forget diabetes now and then, that is a Good Thing - it means your are in the pursuit of Life, Liberty and Happiness - fix the BG when you remember.
  • Independence means you manage the blood not us (we may check in from time to time), we still love you none the less.
This and other things which Independent Persons with Diabetes may of right do. — And for the support of this Declaration, with a firm reliance on the protection of Divine Providence, we mutually pledge to each other our Lives, our Fortunes, and our sacred Honor.

November 18, 2007

Life is precious...

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One of my friends , Coni, over at CWD posted this:

Life is precious...thank goodness for insulin, meters, pumps, etc.

The human body is complex and miraculous...try as I might, I am not a pancreas.

You can not control all things...I understand the mechanics of food, insulin, exercise, etc., but who knew she was growing? who knew she was losing a tooth? who knew she was getting a cold? what was the carb count for that mystery muffin at the school pot luck breakfast?

My husband is my ally. He loves our daughter just as I do. His methods and approaches differ from mine, but whenever I come home, our daughter is happy, healthy, and alive.

It's healthier for me to let some things go. I do my best; I am very responsible for the care of my child, but to honor myself and keep my sanity, there are times when I have to step back and say, "This is not in my control and I need to stop acting like it is."

Support is available if you ask. It may not look like you want, and it may not be from the people you thought would help, but it is there. Accept it graciously.

Good stuff.

November 10, 2007

Kiss the Girl

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Our son loves acting. He is in 8th grade and currently in a musical adaptation of Tom Sawyer cast as one of Tom’s buddies. He can sing. We had no idea.

The last play he was in we noticed him starting to sway a little in one scene and could tell his BG was dropping. So far, knock on wood, he is doing a better job of diabetes maintenance.

He is tall, good looking and funny - he has charisma. We are told by other parents and his older sister that the girls in the play have noticed this.

When all the kids are playing in the cave, just before Tom & Becky are lost, he has a scene where the girl he is partnered is a bit forward in suggesting a kiss. His bit is to get a look of terror on his face and bolt stage left.

Saying the young lady playing the roll of the kissing girl is drop dead gorgeous is a huge understatement. She is also a few years older than him, in high school. So being the caring supportive family we are, we gave him a ration of grief about it. “Dude if a girl that attractive wants a kiss…” “Maybe you need glasses…” that kind of caring supportive stuff.

His response, “Apparently my character is 10.”

The play runs two weekends with only a run through in between. Traditionally the actors adlib in that run through. However because of the large number of kids in the play, who are already having a hard enough time staying on task, the directors asked the older kids to play the run through straight. No tempting the little kids to go off.

Some of the adults in the show made up new lyrics for their songs and Connor and his partner in the cave scene were feeling the need to do some improv too but they didn’t want to get in trouble for not playing the scene right. Her mom is the director.

So he ran off stage ending the scene just like it is written. He then ran back in took her in his arms, leaned her dramatically back and kissed her. He described the reaction of the cast and crews as thunderous applause and lascivious whistling.

He talked more about how he had his back to the audience of cast and crew and it would have been a better scene if they planned to turn the other way than the actual kiss. Wait… what was that verb son? Planned? She was in on this huh? LOL. I can get some caring supportive mileage out of that.

Ah but all was not well. It seems that the girls in his 8th grade class, a few of which are in the play and witnessed this amorous adlib, found his kissing a high school girl on stage an issue. They gave him grief the next day in school.

I don’t know what I find the most amusing; the adlib, being caring and supportive by suggesting was a plan by the girl to steal a kiss, the girls in his class being jealous or him just living his dream of being on stage.

November 8, 2007

Profoundly Wise

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With that title, obviously we are not talking about me.

I try hard not to make this blog about diabetes stuff. Technology isn't as important as psychology or so I am trying to teach myself.

Still I remain curious about diabetes management tools that may help provide a better quality of life. The thing that is coming up in the farm teams and looking like a real prospect for major leagues is CGM.

About the only way to learn about this prospect is reading scouting reports, aka blogs. Wendy Morgan's Diabetes Self-Care is about as good a scouting report as there is. She blogged about the Abbott navigator when she wore it in tests. Now writes about the Minimed Real-time she wears now. She blogged in the transition between the two - that is good reading too.

Her perspective is doubly valuable as she is T1 and a mom of a T1 child.

As a parent of pumping T1 kids, my primary interest in CGM is to track BG to help tune basal rates, particularly overnight. Growing kids have a nasty habit of needing basal changes (YDMV!) And the kids keep growing, at astounding rates. Also I would also love a tool to help predict hypos in school as our younger D child has had unexpected lows when things are stressful - like academic testing.

I admit to being concerned about yet another thing being poked into them, the younger in particular. But the larger issue is how it may effect her progress towards independence. Will it make her depend on us more, will it freak her out or will it help?

Now here's a good point that has taken a long time for it to sink, in fact it is still settling in - some parents made very good comments about the importance of independence and trust at CWD's Conference last July. Independence from parents and trust from parents. Most of this came up in a discussion of another device. The device isn't that important (it collected BG and sent it wirelessly to who ever.) The comment was telling.

At first there was a general buzz of excitement. As the talks went a few parents expressed the idea that they were not interested because they didn't want their kids feeling like they, the parents, were checking up on the child the time electronically. That the benefit of data collection in near real time was outweighed by the perception of diminished trust and infringement of young adults independence. That is a profoundly wise attitude about technology. It appreciates that the quality of life involves relationships as much as mechanized tools.

With this in mind it was very interesting to read Wendy's comments about CGM and her child:

"I've decided to wait on the CGM for my seven year-old girl. I have come to find out that it isn't the insertion that worries her most (although it absolutely does), but it is the alarms going off all the time. You know what? That happens frequently. It will really extend the amount of time she is thinking or being reminded about diabetes, which is a lot and for right now, in this first generation of devices, I am willing to let her have some space with it."

This too is profound wise. Thanks Wendy

Psst...

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Richy you ever hear of Google? Here's a sample for Google Scholar
(http://scholar.google.com/scholar?q=Insulin+pumps+pediatric+&hl=en&lr=)
Maybe you can work this into your next dog an pony show?


Insulin pumps in pediatric routine care improve long-term metabolic control without increasing the risk of hypoglycemia
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1399-543X.2006.00145.x

Benefits of continuous subcutaneous insulin infusion in children with type 1 diabetes
http://www.jpeds.com/article/PIIS0022347603005791/abstract

Insulin pump therapy in pediatrics: a therapeutic alternative to safely lower HbA1c levels across all age groups
http://www.blackwell-synergy.com/doi/abs/10.1034/j.1399-5448.2002.30103.x

Persistence of Benefits of Continuous Subcutaneous Insulin Infusion in Very Young Children With Type 1 Diabetes: A Follow-up Report
http://pediatrics.aappublications.org/cgi/content/abstract/114/6/1601

November 7, 2007

T1 Art 2,190 syringes

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Dana Mangnuson made a "chair" of 2,190 syringes to represent the number of insulin shots she gets every year to stay alive.

I Don’t Know...

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I read Mr. Richard Kahn's comments on diabetes care and technology. I have seen the talk at ADA boards, at other boards and on the blogs.

Kudos to Mr. Kahn!

He’s going to single handedly take the heat of responsibility for the stupidest diabetes comment off Halle Berry. I am sure she will be pleased.

He did an outstanding job of focusing my support for diabetes advocacy. I will not renew my ADA membership. I will no longer recommended type 1 parents join ADA, which in the past I have done quite a bit, specifically to support Crystal Jackson's work with schools. Sorry Crystal, I love ya but the Richy is doing more harm than all your good.

Do me a favor Dick - take me off ADA’s emailing lists.

"I believe the sale of insulin pumps or continuous glucose monitors would soar if there were a long-term, randomized–controlled trial showing that either of these technologies really do benefit people with diabetes, and are worth the added cost."
In the context of the 15 pages, clearly the way he put this he doesn’t think either device is worthwhile. Oh it was eloquently done, oh so long winded (did I mention it is 15 pages?) and in ever so lofty sounding scientific terms, that the implication was both clear and plausibly deniable.

Dude, if you thought the studies were needed you would have ADA at the forefront of studies proving it. You don’t. Hell you don’t think type 2s should test. Says a lot.

Mr Kahn's ADA does allow adds in their magazines that talk about cures for diabetes and getting of medications, including insulin, without any distinction between type of diabetes. Says a lot.

"I think you can count on more attention being paid to technology that enables physicians to provide the evidence-based care that’s already available."
Rich does your underlining means you think we already have everything we need, so as a nation we can just skip any additional R&D? Type 2 pills are fine, so why look for cures for type 1? If so we don't much need ADA do we?

It is clear he’s all about the “evidence-based” care. Oh that sounds so like an insurance company letter that turns down a physicians prescription for a CGM. Bad physician tried to Rx something Dickypooh doesn't see as evidence based. But wait they are pediatric endocrinologist and your a PhD of Physiology maybe they have a better read on the evidence?

In a type 1 family the parents are the primary care givers. Every day. Every night. All Week. All Month. All Year. Evidence is measure every three months, we call it A1C.

"A technology that gets the 70% or so of people with diabetes who are not taking their medications as directed, to start taking their drugs like they should, would much more likely have greater benefit than another monitoring or insulin delivery device."

Right and this 70% - do they have any motivation to manage their care? Say Richy - does all the evidence-based studies based you this talk on show that patient motivation has any impact? Or are you shooting from the hip (and into your foot.)

Why monitor BG anyway, I mean other than that the definition of diabetes is based on the fasting BG.

"I concede that solutions that make the delivery of quality care more systematic are not as sexy as implantable closed loop islet factories, or new devices to make insulin delivery more convenient, but technology that improves systems of care are apt to save and improve more lives—and such technology will be amply rewarded in coming years."
I concede, I think you’re conceited. You use of the pejorative was very nicely done. Factories have a robber baron, eco disaster - last century vibe. Sounds a lot like; screw the type 1 people, it is a better investment to get the type 2 to take their pills - that he thinks any investment into type 1 technology is just flashy, beepy oh sorry "Sexy" video games for kids.

Well Richrd, I can tell you our kids, yes kids - two type 1 kids, have seen significantly better control with pumps as evidenced by lower and more stable A1Cs. I doubt it is possible for a T1 kid to maintain control in puberty without a pump.

But hey what do I know? I only live Type 1 diabetes care 24x7x365x2 and to be honest I didn’t even try to control T1 BG in puberty without the pump. Silly me! Pass the pills and get Halle on the line and oh - which kid should I give placebo insulin to?

At age nine the girl’s BG would shot all over the map, a stressful test in school could send her hypo in no time. A CGM that could predict a hypo based on rate of change would have helped in that classroom. But that just a kid in school - right Richard?

Even more it would track overnight rates and support basal rate fine tuning. Over night is crazy in puberty. Oh wait we don’t need to do that because we don’t need pumps. No pumps no need to track over night BG. We don’t track it and those spikes - well they just don’t happen if there is no evidence of them.

Here’s question for ya Richy; If BG spikes at night but there is no test strips or CGM to record it, in your world dose it impact A1C?

I guess not. In your world the ADA and a doctor will give us pills. Hell with T1 kids - lets get those adults taking their pills.

Maybe it is all a misunderstanding. Right, if so here a hint Rich, Don’t go in front of a group and say their work is misguided, don’t talk down the treatments that thousands of members of your organization use to keep their kids alive. It so makes you look stupid - I don’t know how much of an accomplishment that is. I don’t know Dick.

November 6, 2007

Diabetes Mine on ADA

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If there is anyone on earth who reads this and doesn't read Diabetes Mine go read this:

http://www.diabetesmine.com/2007/11/adas-richard-ka.html

"In the Long Term We are All...

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...Dead."

- John Maynard Keynes, economist.


Chipper guy that J. Maynard. Any wonder why economics is called the "Dismal Science?"

The long term is what our type 1 diabetes care about. It just doesn't seem that way as everything we do is in the very short term. Think about it - Lantus "long term" insulin last 24 hours.

We do a ton of short term stuff to insure there will be a long term. I found it an interesting exercise to read about some folks who have been doing the short term stuff for a long time.

Kenneth Clancy is 82. He was diagnosed at 18. Insulin was the new cutting edge wonder drug. It seems to have worked.

By Ken's standard, Helen Chongris is a poser. Helen only has 30 years experience as a type 1 diabetic. Newbie that she is she has still seen some life-altering cutting edge stuff of her own; meters that only take 60 seconds to check blood glucose! She on her 5th pumps in 21 years of pumping.

Next on the her gadget parade? CGM. until then it 12 sticks a day. Interestingly she says it take more than the evolving world of gadgets. She says she needs educated people to help - yes the proverbial village to manage diabetes.

I stumbled upon Helen's comments at DallasNews.com. I found that her paper seems to get it better than most media outlets I have read. I guess having her around they get the whole idea of educating the village. Another Helen there (or Helen by any other name) had comments just as sweet - a top ten list of diabetes to dos. I'll quote the first one just because to so cool:

1 Doctors have to call diabetes a disease. You don't. It's a physical condition – one you can control. No pity parties if you can read the three previous sentences. Even though there's no cure for it, this is a diagnosis you can do something about. If you can do for yourself, be proactive and positive.

Now there is some positive 'tude. Number 2 is just as good.

So take it from Ken, Helen and Helen diabetes has a long term and isn't dismal even if Maynard is.

November 4, 2007

Diabetes "coach" may help diabetic teenagers

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NEW YORK (Reuters Health) - A "personal trainer" can enhance an adolescence's motivation and capability of managing diabetes, according to a randomized trial sponsored by the National Institutes of Health...

The facilitators were called "personal trainers" to "emphasize the development of strengths rather than the amelioration of deficits," the researchers explain in a report in the medical journal Diabetes Care.


Why wouldn't we hold these truths to be self evident? Pay attention and they do better. Focus on developing strengths not beating them for variances. Diabetes Varies, focus on the positives - why stress the negative variances? It will just make - stress.

I don't think the coaching needs to be year round to get this effect. Our experience with Children With Diabetes' Friends for Life conference was that the coaching our teen took in at that conference made a measurable impact on his A1C. Now I am not saying that year round may not be better - what I am saying is sign up for FFL.
















Connor & Co flex there guns at FFL.

November 2, 2007

Nicely said Noncompliant

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I have been trying to wrap togeter some thoughts about Ms H. Berry. Rather than think too much myslef I will point out someone who did the thinking nicely.

http://noncompliant.blogspot.com/2007/10/open-letter-to-halle-berry.html