December 30, 2007

Psychological Whipping Boy

Type 1 isn't easy.

It is juggling daily, activity, checking, eating, bolusing and activity. You want a day off, you want a holiday off. You don't get it. Our holidays started with a trip to the endo and our A1C were up. Not bad 7.5 but still both were up.


To a large extent we take life a little less intensely than a lot of other T1 families. We eat what the holidays offer and try to bolus around it. We don't use scales. We try to have normal lives. Still it is a lot of work and you get the feeling that more intensity may be needed.

We expected Delaney's to be up. She has been working though some basal rate changes. It is that growing thing. We still need to work out some Delaney's overnight numbers but we are making progress. Connor's number was a bit of a surprise but to be honest his attention was on being in a community theater play and trying out for the school play. He says he needs to test more at school and probably back stage too. What is really important is he is still managing his diabetes almost completely autonomously.

We need to bring both of their overnight numbers back into tighter control. CGM would be such a great tool for this. Even if it was only used overnight. Plug'm in, put'm to bed, think about it in the morning when your brain works.

I wish the insurance company got that. CGM will make trend spotting better. We will do it more if we don't have to get up every 2 hours for a few weeks to spot a trend make a change and check to see the change had the desired results fine tune, lather, rinse repeat.

OK I get that insurance companies are there to not pay for health care. They are about actuarial expectations and minimal payouts. We, the patients, are NOT their customer. Their customer is the company who pays for the insurance and that company and the insurance company are all about low costs. Care costs and neither the insurance company or their client have care as a priority.

What I still don't get is why the ADA, in the person of Richard Kahn, is anti CGM. But to be honest, we the people with T1 are not the ADA primary market either. ADA is a big self servicing special interest group. It is more about keeping itself healthy and cash flowing so that it can pay huge amounts to its executive leadership (AKA Kahn.) An executive leadership that are more interested in big deals with big companies (like soda makers) to move big money around to make the big compensation look small than caring about individual members.

I have been trying to get past my anger at Mr Kahn's anti diabetes technology comments of a few months ago. As you can see I have made little progress. Why little progress? - Well because I have to get up at night and do basal testing to properly manage insulin pumps. CGMs would do that while I sleep.

Mr. Kahn is on record as thinking that CGM, pumps, and even strips in most cases of diabetes (he doesn't often distinguish T1 from T2) strips are a waste of resources. He says more testing needs to be done, so presumably funds should flow from funding CGMs, pumps and meters for individual people with diabetes to ADA to do the test they are not doing now with the money they have now, inflate the ADA budget. His already generous compensation package* would naturally rise with the tide.

I have no doubt that Mr. Kahn is a capable caring man. That and he is dead wrong about technology and type 1. He is also a voice that the insurance companies will hear and cite as a reason to choose not to fund CGMs for clients. The only choice I have is to not renew my membership and make a case of others to do the same.

No technology is the panacea Mr Kahn seems to set as a bench mark, one that works without the operator paying attention. He is right BG checks without coaching on what to do about it is pointless. But the meter is only that, a meter. In the hands of someone striving for compliance it is a tool. It is equally pointless to hold back technology from those who will use it as part of a care program because the non compliant will not benefit from it without becoming compliant.

We would be left presumably with pee strips.

Stress tends to make me angry. A lack of sleep doesn't help either. We have two T1 kids and that is enough to generate more than a little stress. I would love not to have enemies in diabetes care. Not the school. Not the ADA. Not the food police. Not the Churches who will not admit the little diabetic children. Not the theme parks. Not the food places that don't have carb counts.

I understand part of this is that I am frustrated with the fact that type 1 is forever and since I can't strike out at it I can focus on the people who make type 1 harder.

Most of those groups like the ADA are self serving institutions no mater what the say about themselves. They take care of the institution first and serve a client base only after assuring the continuity of the institutional hierarchy. For the most part we are not in a position where service is a competitive advantage to the institution.

Yet part these are also whipping boys, a place to focus the frustration when type 1 becomes overwhelming. I am sure part of the deal and it is probably not a healthy thing.

*Mr Kahn's generous compensation package (see page 70 of this .pdf)

December 17, 2007

It used to be a Teddy Bear

Delaney had been running high. Growing. I know all parents feel this way but, can’t they just stay small? - just so the Basal rates last for more than 6 or 8 weeks.


It was time for the basal reprogramming process, start over night, work through the morning, into the afternoon and evening. Naturally it was the week Mrs. YDMV went on a cruise with her girls friends, leaving me to realize just how much I appreciate not being a single parent the rest of the time she is here.

I checked her at 11, midnight, 1, 2, 4 and 6. Delaney’s number used to get funky between midnight and 1. Not this time. The number started up a little at 2 and by 4 were skyrocketing. Dually noted. I corrected and settled in for a few more nights of checking to see if this was a trend - if so the basals would be adjusted accordingly. Oh joy! a few more nights of this.

I was just getting back to sleep when I heard such a clatter, I should have sprung from the bed to see what was the matter.

(Did I mention the 11, midnight 1 and 2 blood checks? At 4:15 I tried to pretend I didn’t hear it.)

Then more clatter and the older son was at the door to tell me Connor fell out of bed.

OK I get it, this was the spring from the bed kind of clatter.

I slouched out of bed to see what was the matter.
Away to the stairs I crawled like a snail,
Staggered to the steps and stepped on the dog's tail.
The green screen of meeter let off a soft glow
that gave a luster to the body below,
and what to my wondering eyes should appear?
No not miniature sleigh, and eight tiny reindeer.

Only Connor half under then bed checking his blood.


We keep juice in his room for just such an emergency, well with type 1 it is more of an eventuality. Connor has swim practice a few times a week. The coach swims him hard. It would be enough to drown me.

Next night he was meant to back off the basals. I didn't know if he did but since I was up confirming the other one's late night trend I stopped in and checked him too. 34. 34 is #$ if you hold down the shift key. It is also close approximation of what you say too.

So I started checking in to see if he did a temp basal after swimming.

The next night, fast asleep he had a juice with him, tucked in just like his Teddy Bear when he was little.

December 15, 2007

With Energy & Enthusiasm - Who Needs Accuracy

I read two columns on diabetes:

Someone you know - maybe you - has diabetes
Take control

I wan't too impressed so I sent this:

Kudos for getting the difference between Type 1 and Type 2 correct. You correctly write that Type 1 is an autoimmune disease mostly surfacing in children.

Unfortunately your examples are all cases of adult onset.

You further cloud the issue that type 1 is not preventable by recounting Mr. Gladsen saying "I would go to McDonalds and eat like a horse.” This reinforces the idea that type 1 is related to fast food abuse. That is not the case, as you said it is an autoimmune disease.

In your second article, mostly about type 2, you recount type1 complications. In neither article do you speak about type 1 from the perspective of a child or a family with children.

Instead of illuminating the distinctions in life challenges between type 1 and type 2 two you sadly compound the confusion between them. A child living with type 1 will take hundreds of insulin shots and do thousands of finger sticks to check their blood each year.

All these sharps are, at times, literally a pain in the butt. Reporting that stigmatizes them with the implication that their type 1 is somehow the result of diet, inactivity or eating like a horse at McDonalds adds insult to the thousands of little injuries that result from these blood checks and injections.

I suggest you contact Children’s Hospital of Philadelphia or the local West Chester base manufacturer of Insulin Pumps, Animas Corporation, and learn how Type 1 really impacts children and families. Or stay at your computer and read parents’ posts at Children With Diabetes (

I am sure you will find that the experience of Mr. Walton is way out of the norm. Type 1 families work hard every day to successfully manage this condition in spite of misinformation and prejudice. The suggestion we need to see the case you site as a wake up call to “get real about” managing our health is at best uninformed and at least condescending.

The author responded:

thank you for sharing your comments.

With Energy & Enthusiasm,


December 12, 2007

Out of the Fog

Connor took a date to see Stephen King's "The Mist." Me, I am not a scary flick kinda guy. The thought of the kid dating is scary enough.

I drop off. I pick up.

They saw Beowulf the week before. Connor didn't like it. He wouldn't say that to his date in case she did, but he told me later.

Connor and his sister are quite the movie critics. They get into all kinds of stuff from writing to lighting and acting and direction. If they are any indication the animation techniques of Beowulf are not the wave of the future. However, I think they may have more discerning tastes than the average teen.

So, I was looking forward to the Stephen Kind review. I was a tad concerned that the review may suffer from the classic strategy of choosing a scary flick for a date as a reason to sit comfortingly close. It may however be that Connor likes dates because they involve movies more than movies because they involve dates. I don't know.

Anyway I need not have worried. I got a heated review.

He hated the ending. Ranted about it as soon as he got into the car, her views not withstanding. So after we dropped her off and he escorted her to the door while I discreetly turned the car around I got the details, movie details, the date is their business.

Seeing how I'll never see the film, he explained the movie on the way home. You may see it, so I'll skip over the details. Suffice it to say it turned out that Connor was of the opinion that the father didn't defend his family up to Connor's standards. "I would fight for my kids!"

I got to thinking about how a 14 year old comes to that opinion of fatherhood. Maybe all the bad times, struggles and tears standing up for proper care of his diabetes in school left a mark. Thinking back through the fog of that time I remember thinking about that. Maybe this turned out not to be the scary movie I was worried about.

The idea of dates is still a bit unsettling and I still don't like Stephen King but the movie review was a nice Christmas present.

December 10, 2007

Fatherhood and Trenches

I want to write something profound and motivating about fathers and diabetes care. Here is the problem. I can't think of anything profound or motivating.

I know there are great dads out there who are engaged in their kids lives and as a result are involved with the care of their kids who have diabetes.

I also know there are a lot of dad's out there who aren't. I hear the frustration of their wife's in online forums. I wish I knew how to help get them involved as I suspect they are missing out on a lot of the fun in their kids lives.

Watch Pixar's The Incredibles. The story here is the dad is missing out on the adventure of his life and that is not the headline adventure of a super hero but of an engaged dad. Great flick. (At least two T1 dads involved in the production.) OK fun movies out of the way, maybe there are some other things to explore.

I know I didn't have a choice but to participate. I am as needle-phobic as they come. They spotted that at Children's Hospital. When our first D kid was in the hospital, they made me give him a shot. "Here it is dad's turn." I was probably more scared than he was but then maybe not I am sure kids can read fear in their parents better than dog smell it on an intruder. They made me get over the fear. Fear is real and I suspect that fear is one reason some Dad's don't do as much.

Fear of hurting the kid. Fear of not knowing what we should and not being able to show it, fear we will not do it as well as or the same as mom.

"No Fear" is a stupid slogan, of course you have fears - deal with'm.

Mom's way is another issue. Now ladies here is where you are making a choice. Dads most likely will not do things the same way you do and you have to be good with that or you are choosing to do it all. We are all different, not just husbands and wives all of us in all our families. To expect me to do things exactly the same as my wife is not going to work. YDMV. Ladies if you make it my way or the highway most guys are gonna hit the road or at least tune out. Say "It's Your Turn" and step away.

I can pour 3/4 of a cup of cereal by eye. Dead on. I have had to proved it a number of times to the kids and to mom. I am a good cook but I never measure anything. Making me use a measuring cup will piss me off. Measuring and scales work great for some folks - God bless'm, It ain't me. YDMV.

Guys - Step Up.

In point of fact there isn't anything magic here. You're on a team, you are a guy, you know that means ya gotta pull your weight. Fatherhood is about blocking and tackling not 85 yard glory pass plays. Get in there and do it. It isn't the glory of super hero work - there is an adventure in that the day to day work slogging it out in the trenches, be a part of it.

YDMV - I would love to hear from other dads.

December 2, 2007

How you see youself

One of my friends over at Children With Diabetes (CWD) has started blogging about diabetes. He is an adult onset T1 and has a young T1 child. Great guy. Great perspective. Check out his blog

Both he and his wife participate in the CWD forums. I hope they come to one of the CWD conventions I am sure I would enjoy meeting them and we can always use more people at the pool side parties.

It common at CWD for parents to create user names that include their T1 child's name. For example Bobbysmommy would be Bob's mom. My friends wife, following this practice, is Emmasmom. Now here is an interesting choice he is Brensdad after his non diabetic son - right form his signature "Brenden, age 8 non-D. (That's where "Brensdad" comes from.)"

We are the parents of all our kids - even when the D kids take more maintenance. It is a dangerous trap to let the diabetes disproportionately distribute our parental attention. (How was that for alliteration?)

So hats off to Brensdad for making that distinction in his user name.

OK in all fairness there is also a Emmasdad at CWD but Brensdad signed up before Emmasdad or Brendensmom. Some times the who is who is it confusing - but I digress.

Diabetes puts enough strain on a family. Don't let diabetes care be seen as favoritism. No matter who you are or how you define yourself, be sure you are mom and dad to all the kids.

November 29, 2007

Feel Felt Found

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.

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

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

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...

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

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

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


Richy you ever hear of Google? Here's a sample for Google Scholar
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

Benefits of continuous subcutaneous insulin infusion in children with type 1 diabetes

Insulin pump therapy in pediatrics: a therapeutic alternative to safely lower HbA1c levels across all age groups

Persistence of Benefits of Continuous Subcutaneous Insulin Infusion in Very Young Children With Type 1 Diabetes: A Follow-up Report

November 7, 2007

T1 Art 2,190 syringes

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...

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

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

"In the Long Term We are All...


- 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 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

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

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.

October 30, 2007

This was our walk letter photo two years ago. Connor was a lot shorter back then. I think the tag line was diabetes is a pain in the butt - literally.

Thanks for testing

I was reading an article in Cognitive Daily (CD to those of us in the cognitive know “A new cognitive psychology article every day” Wahoo!) and it got me thinking about an article on diabetes at CNN. (No doubt all this lofty reading has you thinking I have too much time on my hands – truth be told I have read exactly one article at Cognitive Daily and I skimmed a lot of it at that.) Anyway the CD article was about effectively praising a child and the CNN story was the rare fairly good one on type 1.

It seams that to be effective praise should be specific. According to CD, “When you are helping a child learn to read, saying "you are a smart girl" as opposed to "you did a good job reading" results in very different behavior when she has trouble reading in the future.”

Specific is good! I got it.

The CNN story quotes a young lady, "One of the hardest things about having diabetes as a younger child was being different. No one wants anything to make them stand out as a child, and having to take blood sugar readings and inject myself with insulin every day definitely qualifies." She also describes the feelings of guilt, "I thought I'd done something wrong to deserve diabetes. I was constantly searching and trying to understand why I was the only kid in my grade with diabetes."

The article goes on with the comments of a counselor of parents of diabetic children who says that diabetic adolescents "go through times where they want to forget about it. They pretend like they don't have it.” Sure enough the young lady quoted before goes on to say, “Whenever I had a bad blood sugar reading I would lie about it and say a different number, until eventually I was caught."

Now if you have stayed with me this long you may be wondering what, specifically, I have been smoking because there doesn’t seem to be much in common between the CD and CNN stories. You would be right, not about what I have been smoking, but about the wisp of a thread between them. Here it is, it strikes me that we need to be careful with how we praise the little diabetics so that we don’t feed into that pretending they don’t have it and lying about numbers.

The first step is to specifically praise testing (and correcting but that is the advanced class) not the number that comes from the test. The number isn’t good bad or indifferent, it is just a navigation check point telling us how close to the path we are. We are on course or left or right of it.

What important? That they checked to see where they are.

“Thanks for checking.”

“Whenever I had a bad blood sugar reading…” Remember the numbers are not good bad or indifferent. They are numbers. Period.

Were did she get the idea a sugar reading is bad? Our reactions maybe? Look in the mirror a few times when your kid tells tour the number.

“Thanks for checking.”

Not 102 GREAT! Not 309 WHAT did YOU *$@# eat!?

“Thanks for checking.”

Lord All Mighty this is a very hard thing to do!

It is harder than remembering washing sugar off the fingers before testing. (Thanks for washing your hands and testing.) It is harder than calculating new I:C ratios. It is even harder than getting used test strips into the trash. (OK that last one is scientifically impossible.)

But think about it, specifically, is there any behavior you want your diabetic child to adopt as a life long habit more than regularly checking?

“Thanks for testing.” Place your hand on your child’s shoulder. “I am proud of all the checking you do to manage your diabetes.”

What's the best way to praise a child? Be specific. - Cognitive Daily

Son's diagnosis 'knocked the life out of me' - CNN

October 26, 2007

They Change Fast

I read a comment by a parent who's son dropped from the 200 to the 60 very quickly. He had felt low but tested high, then normal then low. Hand washing was suspected as a possible source of a false high but he had washed.

The little dude kept saying he felt low so they kept checking.

Way to go!

First and foremost trust a child that says they don't feel right, there are long term implications of that trust as significant as the short term implications of a low. Kids need to know that we respect what they feel. Hopefully they see that and since we respect them they should respect them selfs too.

Meters are lagging indicators I don't know how or why blood drops rapidly but there are plenty of folks who've see it. Maybe it is because blood takes time to move around, I don't know. We have seen rapid changes, and I will not discount that it happens. This is one of the issues that makes people worry about CGM as the fluid they test is even more of a lag than blood.

Some insulins are less predictable than others. NPH can be great one day and hit like a ton of bricks the next. So who knows maybe this was one of NPH's little tricks.

But that why lags happen or how meters work isn't really what it is all about. The big issue is trust and respect. If the kids says they feel low, check. If the meter says something other than what the kids feels keep trusting the child.

Washing fingers and retesting is good sound practice, so is respecting what the child if feeling and saying well maybe you are feeling what happening before the meter shows it and we should keep an eye on it.

Things change. Sometimes they change fast. You want to be sitting back, with grey hair, saying they change, meaning grow up, so fast, what shouldn't change is valuing what kids feel.

I think it was some genius like Plato, Aristotle or Einstein who said YDMV - LOL -

Sometimes what varies is how fast it varies.

Care, respect, love aren't diabetes, they don't vary.

Oh and keep the tabs and glucagon handy. 

What the ...


Bernard is a riot.

October 25, 2007

5 Easy Pieces

More for JDRF IDDP Fans*

(*I may be the only civilian in the lower 48 states who is aware of, let alone could be ranked as an IDDP fan.)


SmithKlineGlaxo announced an agreement with JDRF IDDP partner Tolerx, to develop and commercialize a different anti-CD3 compound from the Lilly / MacroGenics. So the fact that the deep pockets are stepping up seems to indicate that there is reason to believe there is good news in these anti-CD3s.

SKG / Lilly press release

I am happy to see JDRF issue a press release about the SFG and Lilly deals with their IDDP partners:

IMHO This is press release a step on the way to transparency that can give those of us who support JDRF comfort in how the funds raised for JDRF are used.

Housey Pharmaceutical Research Laboratories

JDRF has entered a IDDP agreement with Housey Pharmaceutical Research Laboratories (HPRL) for research “aimed at identifying small molecule compounds to promote beta cell growth and survival.”

The press release at one point says the idea is to,”support the company's studies to identify compounds to promote the regeneration of functional pancreatic beta cells.”

Wohoo! That’s what I’m talking about!

Now when I Googled Housey I was somewhat concerned that their web page talked exclusively about T2. So I emailed JDRF. They explained that JDRF is interested in seeing technology developed for other things (like T2), that has promise for T1, look to the T1 uses as well as the large population of T2.

“That HPRL’s prior experience has not necessarily been with type 1 represents some success in another strategic aim of our Research group, that is, to persuade more top scientists to focus on research that benefits the type 1 community, even if it had not been on their radar screen previously. One of the issues we’ve had to deal with over the years is a relatively narrow range of researchers and research institutions that are involved with type 1 diabetes.”

Apparently it is no longer permissible to get top scientists to focus on research that benefits the type 1 by hittin’m up side the head with a 2x4 with a nail sticking out of it. So since the stick is out apparently a carrot is the next best thing. An IDDP agreement is a nice carrot.

EpiVax, Inc

“EpiVax, Inc, a leader in the field of computational immunology, announced today that it has received funding from the Juvenile Diabetes Research Foundation (JDRF), the world's largest charitable funder of Type 1 diabetes research, to develop "Epi-13," a novel therapeutic for the prevention and treatment of type I diabetes, a devastating and chronic autoimmune disease that affects up to three million Americans today.”

Osiris Therapeutics

JDRF Partners with Osiris to evaluate an immunomodulatory cell therapy product for type 1 diabetes. JDRF will fund Osiris’ proof-of-concept trial of Prochymal™, a formulation of immunomodulatory adult bone marrow-derived mesenchymal stem cells, in type 1 diabetes.. Prochymal™ is currently being evaluated by Osiris in Phase III trials for Graft-vs-Host Disease (GVHD) and Crohn’s Disease.

"immunomodulatory" is the even a real word? I guess I'll have to look that one up.

I think there is a lesson to be learned here. That is I should keep my big yap shut and not be asking JDRF questions. or they come out with a ton of press releases and I can't up date the blog fast enough to keep up. This post started out with a reference to three...

More on Lilly/MarcoGenics & JDRF

This just in from my buddy at JDRF, (Who was building a strong case for not being called a geek “I am not a geek.” See I said it was a strong case - until he wrote, in very good humor: “If you have any additional questions, please submit them, in writing, in triplicate.” - It was the triplicate the crossed the line into geekdome.)

Any way he wrote:
The Lilly-MacroGenics deal did not trigger any events for JDRF at this point. They’re essentially tied to development and commercialization.

I am good with that. I like others (aka Lilly) are stepping up with big money to invest in the better technology. Particularly in an environment where Pfizer is writing of a few billion on the diabetes market.

October 24, 2007

Stupid Meter Tricks I

We do stupid meter tricks. Mostly for the fun of it but there is also some madness in the method, I’ll cover that madness later.

Shortly after our second case of T1 was diagnosed, on vacation at Disney, we found ourselves sitting at a restaurant table with a 7 year old who was in between thinking it was cool to be in the D club with her older brother and realizing much of the stuff she had to do, now that she was in that club, hurts.

So waiting for the waitress we amused ourselves testing everything we could get to wick into the strip and some stuff that wouldn’t. We tested Coke, Sprite, Milk, and tried for Ketchup and Gravy some where in there we tested a little blood.

So here is the madness, testing hurts. Period.

Diabetes care is a pain in the butt, sometimes literally if that is where you wear your set. In time, the fingers get calloused and so do the emotions but at first both are Very Raw

Joking around with the meter helps to de-mystify it. It isn’t some sacred relic is an every day tool. It can be part of play. It can be ordinary.

It needs to be ordinary, it needs to be theirs and it can be played with, all this because it needs to be used.

More Stupid Meter Tricks

Stupid Meter Tricks II

The Science Project

One of the days when my kids were kicked out of school, because the school was having hissy fit over D care a few years ago, I had them do some experiments on test strip coding.

We dug up strips with as far apart codes as we could find. (We use one touch ultra smart meters.)

Using control solution we tested strips at their code values.

We calculated the variance between strips.

We tool a little time to talk about this: with the same fake blood the number bounced around a little, so a few points here or there isn’t a big deal.

Next we tested with transposed values for example 7 for 20 and 20 for 7.

We calculated average results and compared to the correct code results.

We found that the average difference when miss coded was about 1 point on the meter for every code number off. So a 7 vs a 20 is about a 13 point difference.

131 vs 144 - No big.

Now a 2 vs a 40 with a result of 68 - is that 68 or 30 or 106. That is an issue.

This is a great little science experiment that you may want your kids to do when they are the right age to discover for themselves why coding matters. If they discover it, they may take it to more to heart and practice.

Part of the point was to learn something on a day when they weren’t in school. The lesson was similar to the one in Stupid Meter Tricks I. Part of the point was in part to de-mystify the meter. Part was a little more, in this case it was to get real about miss coding. It happens from time to time. Knowing how the meter works and what the expectations are for a variance in BG due to a coding error helps. There is a margin of error in everything we do, knowing when that is a significant issues and when it isn’t is an important lesson.

More Stupid Meter Tricks

Stupid Meter Tricks III

So here is a little game to play on a weekend morning. I call it how much do you go up.

OK before we go any further don't do anything stupid, start in range and try to stay in range.

Got it?


Get up and test first thing in the morning.

Eat a very know amount of carbs preferably not a lot - say 10 to 20 maybe even a few tabs.

Don’t bolus.

Test every 15 minutes for a few hours.

Plot the numbers on a graph

After a few hours or if your blood goes real high correct. Write down how much insulin you took.

Test every 15 minuets for a few hours. (By the way having a move or some cartoons on TiVo is a good plan to kill the time.)

Plot the numbers on a graph

How much did you go up?

How fast?

How many BG points per carb?

How much did you come down?

How fast?

How many BG points per unit of insulin?

How was the movie or cartoons?

All these things are part of our lives. Insulin sensitivity, correction factors, cartoons & movies. What important? All this stuff varies. Sometimes the cartoons are great sometimes sometime they aren’t. If the cartoons are no good you can change the channel. If you BG is no good you can change it too.

More Stupid Meter Tricks

October 19, 2007

The new phone book's here!

OK call me a jerk but I feel like Navin R. Johnson.

Amy at Diabetes Mine linked DisneyWithDiabetes!

Nothing you say?
Nothing? Are you kidding? Page 73 - Johnson, Navin R.! I'm somebody now! Millions of people look at this book everyday! This is the kind of spontaneous publicity - your name in print - that makes people. I'm in print! Things are going to start happening to me now. - The Jerk

Apparently Somebody Does Know How This Works

I spoke with Bill, VP of Communications at JDRF, about my MacroGenics question. Bill is OK. He took my questions in stride with both humor and good answers. Y’all know I differentiate between serious and solemn. He dished out a joke as well as he took one without forgetting what it was all about. Bill and I had a very nice little conversation about a number of related and unrelated issues like market acceptance, bongs (Exubera), Amy’s open letter to Steve Jobs aka usability, closed loop systems, and so on.

He said they felt that the Lilly / MacroGenics agreement was, and I quote here, “Spectacular!”

JDRF has, over the last half decade or so, come to feel that there is a (and again I quote him) “Massive” distance between academic discovery and useful new products in the market. There are lot of steps to take between the university lab and the local pharmacy.

JDRF wants cures for families, so they are moving to help close some of that distance, oh sorry Bill that “Massive” distance. Bill sees the Lilly / MacroGenics deal as sign that that they have helped bridge that gap in this particular case.

In general the IDDP agreements do this by helping to fund pre trial and phase I, II, III trials where the JDRF science geeks leads them to think there is a viable treatment that needs a shot at moving from the lab to the market.

The fact that Lilly is willing to step in and do a deal with MacroGenics is seen as something that “probably” wouldn’t have happened without some JDRF IDDP funding for early steps. I got the feeling the emotion approximated picking the right horse at the track for him but with a bit more science involved in the picking. I should point out that I am not necessarily calling Bill nigh a Science Guy Geek, but I would have it I had thought of it at the time.

As a member of a family of JDRF walkers (Pssst! Hey buddy! Can I interest you in a Love Ya Mean It Pin?) I for one would like to know a little more about how these IDDP deals are structured. I will walk for JDRF, Lilly on the other hand…. It isn’t that I have anything against Lilly. They are a fine company. It is just that with two kids using Humalog, I feel I pay them enough.

I want to know little more about how this deal work. I hope there is a return of the funding dollars coming back to JDRF to support the next improvement in type 1 care or possible cure. I know that in some IDDP deals, disclosed in SEC documents, there is. There is also a point of comfort for me that when JDRF gets into an IDDP relationship they retain a right to bring the technology to market if the for profit chooses not to. So if something is a great idea, but somehow doesn’t see the light of day, JDRF can find someone who will bring it out. Conceivable, I guess generically it could be Lilly if Novo takes a pass.

Bill poked around for a little more information and emailed me this, "Each of the partnerships we have with IDDP companies does have some degree of return for JDRF if those projects pass pre-determined scientific milestones – not just the actual investments, but the grant-like partnerships, as well."

Thanks Bill. Now does this deal mean MacroGenics hit a milestone? (I’ll let y’all know what he said.)

I am fan and supporter of JDRF. I agree that there is a roll JDRF can play in bridging the “Massive” gap between academic discovery and our kids.

Yet I realize that what JDRF is doing is acting as a risk intermediary. They are taking positions on promising technology that the market place, for risk return reasons, is not willing to bet on. Now this may be the very point for me, as I have a degree in finance. To a finance geek like me (hey Bill who do you think is more of a propeller head me or you?) it is all about a return coming for taking risk.

For me supporting JDRF isn’t about monetary return but it isn’t about taking risks off of for profits that charge huge rates to pay for development risk for their products either.

We, as JDRF supporters, willing give without the expectation of financial return. The return we seek is far more prized, life without needles but that doesn’t mean I want to give Lilly’s share holders a return that is outside the risks of bringing the products to market.

That JDRF shoulders some risk, with good science and great care, which helps to bring new treatments and hopefully a cure to market, GREAT! If Lilly finds a billion dollar market for treatments – I am a capitalist I am good with that too. JDRF should get back something on the bet on the horse nobody else put something down on when it comes in. See I am a good capitalist.

Unfortunately I also read other stories in the business papers. I worry about the Enron, Tyco, college loans kick backs, sub prime mortgages and other funny money deals out there. Unless you are my favorite defense against the dark arts teacher, Mad-Eye Moony, transparency is a beautiful thing. But then even old Mad-Eye said, “Vigligance Constant Vigilance!”

Better is Better

I posted this ofer at a while ago:

Better is Better

"An Unabashedly biased, ridiculously one-sided passionate argument in favor of the Insulin Pump." This site is highly entertaining and informative (I appreciate both and in that order) on the subject of insulin pumps. Check it out. Better is Better

October 18, 2007

A Few Halloweens Ago

and at least a foot or more shorter - Connor's Dx.

Connor was just starting to learn the saxophone. His first public performance was in a school talent show. I think he played Peter Gun. We went out to dinner, something Connor typically enjoys.

He had a soda or two, used the rest room and felt crummy. He didn't eat. We figured it was stage fright. The next day he moped around drinking OJ and complaining he didn't feel very well. So Mrs BadShoe took him to the doctor. They called for some blood work so the next day I took him to Quest for a blood letting first thing.

They tried and tried to get blood and it took both arm to get what they needed. It was early on a school day but Connor didn't feel up to school. So we put on the Star Wars trilogy (the real originals with Harrison Ford not the stupid prequel movies.) Connor was semi conscious, drinking juice and going to the rest room.

I figured that if the doc sent us to quest it was no big deal and we could wait for the results. Mrs. BadShoe and the doctor's office started feeling otherwise. Finally that afternoon she decided to take Connor to the local hospital ER. His blood sugar was off the chart. He was borderline conscious in DKA. He was being shipped out to Children's Hospital of Philadelphia as soon as they could get transport.

So not a whole lot of hours after his first ever saxophone performance Connor was diagnosed diabetic. So it turns out it wasn't nerves about performing that had him feeling funny before hand.

Connor (and Mom & Dad) needed some help learning what to do. Melissa was our nurse / trainer when Connor was at CHOP. She was very cool teaching us how to get started with Connor's treatment. She was more than happy to turn over the needle to Kim & I so we could stick it to Connor. She also was very good about helping him learn about what was going on.

As you can see above, Melissa is the type who enjoys her work.
Particularly when it is sticking needles into loud children like Connor.

It was a rough time at first. Connor was hooked up to this machine as they put fluids and insulin into him. As you can see he later came to mock it, and if you look, you'll see he stuck the pumpkin.

Melissa was very good about helping us not only the mechanics of what we needed to do but also how to go about it with a smile. As Connor picked up his louder than life sense of humor returned and found a happy audience in her. She was serious but not solemn and that was a big help.

Connor awarded her a BadShoe Pin and she went straight to looking at her shoes. Lots of laughs Melissa that is another part of the site and your shoes seemed like you could walk on them all day - you pass.

Thanks Melissa

Melissa is part of the Children's Hospital of Philadelphia Empire. The scope of this operation would put Darth Vader and Emperor Zurg both to same. It is everywhere it is everywhere. I also seems that every where it is it is an outstanding operation.

Thanks CHOP

By By Bong

dLife is reporting that Pfizer is dropping Exubera.

Since its market release in early 2006, Exubera has faced an uphill battle winning widespread physician and consumer adaption. Now, manufacturer Pfizer has decided to pull the product from its portfolio. From Pfizer's third quarter earnings release yesterday:

"[W]e made an important decision regarding Exubera, a product for which we initially had high expectations,” said Jeff Kindler, Chairman and Chief Executive Officer. “Despite our best efforts, Exubera has failed to gain the acceptance of patients and physicians. We have therefore concluded that further investment in this product is unwarranted.”

We will work with physicians to transition Exubera patients to other treatment options in the next three months. We remain committed to investing significant resources in the development of new and innovative medicines to manage diabetes, including monitoring inhalation technologies and other innovative delivery systems for insulin and other medicines.”

Anyone know how this works?

JDRF is in an Industry Discovery and Development Partnerships with MarcoGenics for the development of Type 1 autoimmunity treatments.

Now it looks like Lilly is buying out the rights to the treatment.

Lilly and MacroGenics Announce Licensing and Collaboration Agreement
October 18, 2007

Lilly to Acquire Phase III Molecule Teplizumab for the Treatment of Type 1 Diabetes Companies to Collaborate on the Development of Autoimmune Disease Treatments
ROCKVILLE, Md., and INDIANAPOLIS, Oct 18, 2007 /PRNewswire-FirstCall via COMTEX News Network/ -- Eli Lilly and Company (NYSE: LLY) and MacroGenics, Inc. today announced that the two companies have entered into a global strategic alliance to develop and commercialize teplizumab, a humanized anti-CD3 monoclonal antibody, as well as other potential next generation anti-CD3 molecules for use in the treatment of autoimmune diseases. As part of the deal, Lilly will acquire the exclusive rights to the molecule. Teplizumab is currently being studied in the PROTEGE trial, a global pivotal Phase II/III clinical trial for individuals with recent-onset type 1 diabetes. MacroGenics will continue to oversee the PROTEGE trial.

So where does that leave the JDRF partnership?

(I wrote what I could find out about the JDRF IDDP here )

October 10, 2007

Bad things happen to good people.

I wrote this for another T1 dad who has had some issues with a church preschool. OK y’all may not recognize me as the author here but what the heck here goes:

Bad things happen to good people. It isn’t God’s will that they happen but part of God’s providence. There is a distinction there that is small but significant.

If bad things only happened to bad people we could easily know who’s evil from there rest. It would be like God showing up in a cloud and tossing about lightening bolts. There would be no question of who was in charge and we would be compelled to believe in that all powerful God.

Now think of God as a parent. Parents want their kids to do OK and to love them back. We all kind of get around to the idea that, the kids have to choose to be OK and love us back for themselves.

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. (Every one sing the Sting song, “If you love someone, set them free…” OK enough of my sillieness.)

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. We didn’t do anything bad, were not being punished, it is just our at bat, our lot, our thing. It is real hard to keep that in mind particularly, when those piling on the crap are wearing religious garb and projecting that they are all wise and speaking for god. Nope they are just human.

Second, we only get what we 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. It is saying we have an even shot. No more, no less, we are in freedom.

Third somehow there is a way to be better for all of it, we have to find the up side of the equation that is keeping us in freedom to come out OK. 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 there is a community here that may be more than it seems. We are here to help each other with the diabetes thing but the fact is the real issue is how the diabetes thing gets into our heads and hearts. That is more than helping with blousing tips.

It may be that we are here to really reach out and say, “That is wrong. I will stand by you to help you not over react but to act in accordance with what is right.” We can’t change the way Fishville or some church board act and think. We can support each other and in doing so help ourselves on a better path.

So let me say that I empathize with every emotion you are feeling, 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 into them.

Stand up for your child, her mom, her grandfather and her brother. You were put on this path because you can come out of it a better stronger man, father, husband and son. I probably can too. It may well be that you sharing your experience is a way to help me see that it is the same for me.

Thanks for the hand.

Stand tall stand and proud stand up for the children you are God’s chosen advocate for. Do so in away that makes us, them and God proud of you. You have done so so far. I have faith you can continue to do so.

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

Other YDMV Posts on Spirituality

October 9, 2007

What Color

If you haven't seen Amy's blog on the lifescan color PSA go read it and the comments. Oh and don't watch the video if you have weak stomach.

October 2, 2007

Maybe I have invented some form of insanity.

Originally Posted by Jeff

And, its my pet peeve #1 misconception about D. That somehow "once you get BG's stabilized" is a reality. Even some endos think somehow it's a reality.

Its not. Just like in another thread "so he could get regulated quicker".. What? What is that? We get to a point where we're done? Cool. When's that happen?

T1 D, particularly in children, will ALWAYS be a rollercoaster. We've gone from 130(7ish) to HI with no carb intake. He had a bad dream - and bg went off the scales. 3u of I for a bad dream. How do you control that? You don't.

We also have to have realistic expectations. If there is the thought that the kid is going to be 70-120 (4-7ish) all the time, that's just setting yourself up to failure. It'll NEVER happen. Trying to get there will result in horrific OCD, and how does that help the kid.

I actually think parents of CWD often exhibit a kind of Munchhausen's disorder: something like BG over-focus disorder. (Maybe Bennet has a better word for this...)

My families activities and life don't revolve around D. I don't spend every moment thinking about D. My kid goes off riding his bike, he eats stuff, he plays. We treat the D as best we can, but we're careful to not obsess on it.

Jeff F.
Dad to Curtis (7) - dx'd at 3, pumping since 7/06
Dad to Owen (9)
Husband to the best woman in the world.
Dude I should have you writing YDMV articles. It is like I could have written it. That is good stuff. Wait I already said I could have written it, saying it is good too is redundant.

LOL Just kidding with y'all

I did have to look up Munchhausen's.

I do think you are on to something with BG Over focus hocus pocus. If you read the medical community that is one reason some there think we parents shouldn't have CGMs. They say we would forever be over treating and stacking insulin.

I don't know maybe they are right. Maybe they see a lot of obsessive BG checking over correcting in their practices.

I don't see too much of it but I only know a hand full of type 1 families mostly at CWD and at OK there is a little OCD going on but for the most part we relatively sane.

By relative I mean to each other.

Compared to a normal non D family we are nuts. I mean who sticks their kid with 5,000 odd sharpened shards if steel a year? That nuts. Maybe we are nuts because we are relatively not nuts and take the kids biking and playing and going to Disney and eating stuff and doing home work and sending them off to be in plays at the community theater....

Who would do that and pretend the 5,000 finger jabs and needle holes don't matter? You would have to be nuts but we are relatively not nuts...

I think I am going insane trying to be normal. Is that like catch 22? Wait 22 is low where is the juice?

October 1, 2007

Is that a bong

...or are you just happy to see me?

So I am flipping through the ADA magazine, I think I missed the Back to School Special about challenges with type 1 and school, but I digress. I flip along and I see a full page Exubera ad. I have seen this stuff used exactly once in my life.

It was Type 1 night at a restaurant. Well it seemed that way. We were there and the table next to us had T1 people when we got there and a second one when they table turned over. The first table recognized us from (Yes it was a Disney restaurant, Whispering Canyon) Then next family had a mom who is an Exubera user.

I have seen bongs that don’t look as much like a bong as this thing. I think I would get tossed in jail if I was toting this thing around talking with my kids about if they are high or not in the Magic Kingdom.

Mind you I have walked into this very same Disney restaurant with a hypodermic needle on my ear laughing about not being able to say Jimmy Hendrix and they were relatively OK with that. But this thing defiantly looks like it would put ya in the cooler. Take it to high school and even ADA's best attorney will not be able to get you out of trouble.

Sorry I digress.

Where was I? Oh yes. Diabetes Forecast. So I am flipping through Diabetes Forecast, ADA is a little on the type 2 side of things for my taste but they do great work with helping kids who face discrimination in schools due to diabetes. I think we all need to spread our support around to all the advocacy groups that help us out so if you haven’t joined ADA sign up.

Anyway I digress again, Sorry.

There in the classified section in the back is an ad for a product that looks a lot like Exubera. It is called Impoaid. It is for E.D. and it is the back of a magazine.

Now if I were to carry that bad boy around Disney World, I would going to the dungeon under the Castle and never coming out.

It takes a _____ to raise a (diabetic) child

I don’t know about a village but it sure takes some support to raise a diabetic child, preferably support with cell phones and text messaging.

It helps to be in touch. I am not talking about the constant checking in with the kids. They need to be trusted and we need to learn to trust them. I am talking about getting a second opinion when you need one an/ or getting a message from the school nurse.
The fact is the family is the primary care giver for a type 1 child. Not the endo., not the CDE, the family.

We are the ones, to quote Clint Eastwood, who must, “Improvise. Adapt. Overcome.” (Heartbreak Ridge 1986) It is great to be able to get a quick second opinion with a text message. “Something like 290 @ 10:00 breakfast bolus didn’t seem to work PE in 20 min what do you think”

Odds are you know what to do but checking in helps with the confidence. Some times it just emotional support, “Just got some comment from a twitmeister who doesn’t know the first thing about T1 care but has a better idea. UGGGGH!” It is amazing how much money you save in justifiable homicide defenses with that second text message.

It may well be that the venting outlet is more important than the what do we do with this curve ball BG message.

My heart goes out to the families where only one partner is engaged in the diabetes care and the single parent families dealing with Type 1. I know the Charming Mrs. YDMV is my line to sanity.
Finding someone for support (venting with) is key, even if they are not a text message away. There lots of shoulders to cry on one the web and are two of my favorites but there are others, YDMV, find one that fits your needs.

It may not take a village but a good web board is a big help.

Or today’s 52, given two glucotab at end of school, followed by 45 juice and gogert 20 minutes later a cool nurse is a big help too.

September 29, 2007

From the Way Back Machine

DisneyWithDiabetes started life as a blog. When we had the chance to move it to Deb's we were happy to do it. We figured more T1 parents would see it there and the more people who see it the more it can help.

When it moved it left some of it more edgy lobby Disney for some change posts behind, so as to comply with the friendly world of AllEarsNet. Like I said we were happy to move.

Well these little gems are some of what was left behind:

I don't know if Mark is still the guy but what the heck feel free to write anyway:

Update I
I went to a Disney Vacation Club annual meeting and stood up and asked why they couldn't provide carb counts. Two very nice senior suits swore they would get back to me. Still waiting to hear back years and a few letters later. I stopped holding my breath.

Update II
July 2007

We attended the Children With Diabetes Friends For Life Conference at Disney's Coronado Springs Resort In July '07. Every food, beverage, meal, snack and even condiment served at the convention by Disney catering had a little placard by it listing the nutrition information and serving size.

The US Surgeon General took the time in his talk on health literacy to comment on how useful and valuable this information is not only to diabetics but as part of the very health literacy every American should seek out.

Kudos to Disney Catering. They impressed the US Top Doc on the nutrition info they provided. Yeah Catering! (Maybe you can help out the CMs in the regular food service departments!)

By the way I wonder how Mr. Surgeon General did in the parks. I saw him walking around Magic Kingdom. He is type 1 too, so he carb counts like the rest of us.

Update III
Also July 2007, Just after the conference.

Nutrition Information Books at Counter Service
We heard a lot about these and with high expectations based on typical Disney execution were anxious to see how they help address the dietary need for type 1 diabetics to count carbohydrates.

They don't.

You typical McDonald's does a better job of making dietary information available than Disney does with any of the nutrition notebooks we saw. In fact McD's put it on the back of the place mat on your tray.

I asked for these books at a lot of different counter service places. About half the people I asked had no idea what I was talking about. The other half? - There was typically one book per counter service eatery. Finding it was a battle.

When found they were poorly organized (if organized at all) bad photo copies of vendor wrappers and packaging that have no constant layout, data content or presentation bundled into a black looseleaf notebook. Some have section tabs and a few of those actually have the contents collected into the sections the tabs identify.

Your 5th grader would get a F for this in health class.

Clearly the goal was to collect information on ingredients for allergy not nutrition information and then shove it in a book that they hope to god nobody will look at because the books are embarrassing. There are the odd food nutrition labels here or there where they could find something to copy but nowhere near all food items on the menu have full nutrition information.
I would have been impressed if a hot dog cart on a city street had this kind of information but this is the Walt Disney Corporation. In the words of the Pixar villain Syndrome, Lame! Lame! Lame! Lame!