October 30, 2007
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
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.
October 25, 2007
(*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, 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.”
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...
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
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
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
OK before we go any further don't do anything stupid, start in range and try to stay in range.
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.
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 many BG points per carb?
How much did you come down?
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
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
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
"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
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.
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.
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.”
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. 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
October 2, 2007
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.
Dad to Curtis (7) - dx'd at 3, pumping since 7/06
Dad to Owen (9)
Husband to the best woman in the world.
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 Type1parents.org. 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
...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 www.DisneyWithDiabetes.com. (Yes it was a Disney restaurant,
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
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
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.