December 16, 2008
Apparently vitamin d in milk either does or does not cause type 1 and you should feel guilty about giving or not giving it to your kids. Thanks that is helpful.
So it is with that background that I point out today's Vitamin D type 1 story: Three quarters of T1 kids have deficient levels of vitamin D according to researchers at Joslin.
December 5, 2008
December 4, 2008
I have been rebuilding stuff and I think have rescued my iTunes and Audible libraries. Most of what would be blogging time has been spent rummaging around my hard drive saving stuff.
I also finally finished some home improvements and close out my building permit. It only took a little more than year and a half but we have a cool kitchen dinning room living room entry and laundry. Finished is an overstatement but our work passed inspection.
Anyway I haven't been blogging or posting at CWD much.
I can say that rebuilding the house and PC have their upsides. It is nice to have the laundry out of the basement and the renovated computer is a lot faster.
I may be coming up for air here sometime.
December 1, 2008
November 28, 2008
The National Science Foundation has awarded a nearly half-million dollar grant to startup Newton Photonics Inc. to create a non-invasive optical sensor capable of
continuously monitoring a patient’s glucose levels.
The NSF made the $480,000 Phase 2 Small Business Innovation Research (SBIR) award on Nov. 3, explained the Newton-based company’s co-founder Shmuel Halevi. The firm specializes in making biophotonic sensors. The NSF cash will fund the company’s effort to create the glucose-monitoring instrument using proprietary Optical Coherence Tomography (OCT) technology.
Currently, no company has released to market a glucose monitor using OCT. Existing technologies from larger companies require the patient’s skin to be broken. “So far, there’s been a lot of talk, but there’s still no instrument like this in the market,” said Halevi. “The market is there waiting for it.”
However, Halevi noted that at least one other startup, GlucoLightCorp. of Bethlehem, Pa., is developing a similar product. He said Newton Photonics’ technology enables prolonged monitoring and eliminates the need for frequent calibration.
Don't get me wrong this could be cool, when it works and is for sale, but speaking as part of the market what we are waiting for is insurance coverage.
November 25, 2008
ScienceDaily (Nov. 25, 2008) — Researchers at the Joslin Diabetes Center
have shown that insulin-producing pancreatic beta cells can form after birth or
after injury from progenitor cells within the pancreas that were not beta cells,
a finding that contradicts a widely-cited earlier study that had concluded this
is not possible....
"This means that there is a population of pancreatic cells that can be stimulated, either within the body or outside the body, to become new beta cells, the cells that are lacking in diabetes," said Susan Bonner-Weir, Ph.D., the study's lead researcher and a Senior Investigator in the Section on Islet Transplantation and Cell Biology at Joslin and Associate Professor of Medicine at Harvard Medical School."
November 24, 2008
The interesting news for those of us who’s Diabetes May Vary falls into a couple of little bits. What I found interesting is:
- CGM is taking longer than they hoped.
- Production has significantly shifted to China
- Next Generation goal is 40% smaller 25% cheaper to produce in 2010.
Paul Choi – Merrill LynchCGM also came up in a reply about Podd’s share of the pump market at large centers. The reply was that when the Omni Pod looses a sale in those competitive markets a lot of times it a function of a close loop dream.
Just a pipeline question. Can you give us an update on where the CGM development is going right now and when we can expect perhaps a first milestone?
Sure. I think it's taken longer than we thought. Both companies have come back to us. They originally going to submit the PMA. They've asked us now to submit the PMA and we are in the process of evaluating the cost and the timeline if we have to do that. So it's going slower than we thought. Our hope is still that we're into the FDA next year, but it has gone slower than we had anticipated.
For Pod users the big news is a significant shift in production to China. Reportedly the quality of the product from China is slightly better than the US production. Here are a couple of quotes dredged up from the whole.
Mimi Pham – JMP Securities
And in terms of your top centers, do you get a sense of your market share versus the other pumps, are you getting 10%, 50% of sort of the new pumps sold or used at some of your top
If you take a look – if you just give me some sense, if you take a look at some of the numbers and you can take exception to a couple of these if you like, but from looking at the various reports out there, there is 30,000 to 35,000 new customers, new pumpers a year. You start taking a look at the kind of numbers that we're putting on there as an overall basis, we're getting a very, very large percentage of those new customers. So and in the top centers, look, at the end of the day, for the most part, if we lose out at the top center, it circles around the dream of continuous sensing in a whole closed loop system, because we're not positioned at the moment to take advantage of that. But ultimately we think we have a better solution than what's out there.
But apparently most is still in inventory:
In the second quarter, approximately 80% of our production came out of Bedford, with the remainder from China. In the most recent quarter, the inverse is the case, with approximately 85% of our production coming from China. This was a swift and impressive transition and I'm proud of our accomplishment.
So, it's a good question, Mike, but you have to take a look at it. The bottom line is we're carrying four months worth of inventory. So what we produced in the third quarter has not hit the P&L.
It is gonna get smaller. I think that is a good thing.
Mike Weinstein – JP MorganOther stuff you can find in there includes:
Okay. And then the last item and I'll let some one else jump in here. But could you just update us on the progress of the next generation Pod and when we should start thinking about that coming to market and the profitability profile of that product? Thanks.
Okay. It's very early on. Obviously there's all kinds of engineerings and regulatory hurdles to get through, but it really looks like a – our goal would be the back half of 2010. Our target is 40% smaller and 25% less cost is the target. We still have a ways to go, but we haven't seen anything to-date that would discourage us at the moment
- A lot of financial talk about cost, inventories P&L etc. Apparently the unit cost of a Pod was originally about 70 bucks and is expected to be less than $20 soon. The cost of the silver in the battery is significant.
- There is a trial under way for a sub set of T2’s who use U500.
- Analysts ask the same question numerous times. I don’t know if that is because they don’t pay attention to other peoples questions, have the attention spans of three year olds or they are fishing for details, probably a little of all three.
November 21, 2008
Animas Corporation Battery Caps Used with the OneTouch Ping System, Animas 2020 Insulin Pump, Animas IR1200 Insulin Pump, and Animas IR1250 Insulin Pump
Audience: Consumers, endocrinological healthcare professionals
[Posted 11/20/2008] Animas Corporation and FDA informed consumers and healthcare professionals of a nationwide recall of battery caps used with the OneTouch Ping System, Animas 2020 Insulin Pump, Animas IR1200 Insulin Pump, and Animas IR1250 Insulin Pump. The battery caps used with the above infusion pumps were manufactured from June 1, 2008 through July 31, 2008, and were distributed from June 16, 2008 through August 1, 2008.
There may be an intermittent loss of contact between the battery cap and the battery compartment in the pump which may result in the device resetting. This can cause the device to stop administering insulin, which could result in an excess level of glucose in the blood (hyperglycemia). Additionally, this failure may lead to user confusion in the amount of insulin administered, contributing to errors in future doses, which may result in lower than normal level of glucose in the blood (hypoglycemia). Healthcare professionals are advised to ensure that their patients replace the battery cap on their insulin pump.
[November 20, 2008 - Recall Notice - FDA]
November 11, 2008
Actually, the policy at JDRF's involvement in private companies was featured in The Wall Street Journal back in 2007 (see http://www.jdrf.org/files/Research/Industry/WSJ_1_26_07.indd.pdf for details), and was a function of former CEO Arnold Donald's policy to make investments to advance diabetes research. More detail is available on the JDRF website from an interview with him (see http://www.jdrf.org/files/About_JDRF/AD_Interview_DCU_1106.pdf). Details are also disclosed in the organization's annual report, though this won't be included until the 2008 report comes out next year.
Thanks Scott for providing background to the basic idea of a not for profit (JDRF) funding for-profit pharmaceuticals. Everyone go read the links - I'll wait ....
... Cool idea huh?
I think it is a great idea to try to bridge the academic work to real world of approved therapy. I look at it like this: Lots of mice get cured - maybe this will help move those cures to people.
One of the links Scott provided says:
Every donor or volunteer should feel that they are totally connected to JDRF. They should feel that they are proactively communicated with. That their connection to type I is understood by JDRF. They should be treated with integrity and caring and know that their opinions count. It doesn't mean we are always going to do exactly what a given volunteer's opinion is, but if they understand why we’ve done something, even if they would do it differently, it creates the basis of the possibility of alignment.I agree.
Earlier the articles says," My personal analogy again is the single mom barely making ends meet, and she's scraping every penny she can to give to JDRF so that her child can be cured, and we have to honor that penny like it’s the hardest earned penny on the face of the earth."
IDDP projects are valuable. As such they must pass the hardest earned penny of the face of the earth test. We all should have the opportunity to find out how each JDRF IDDP investment of hard earned pennies is honorably aliened with a potential cure. The way to do that is transparency.
I am sure JDRF has some real smart people working on the IDDP program. Heck I have even talked with some of them. So OK maybe they weren't so smart to get on phone call with me but anyway.... Smart people still need to explain what they are up to. The sign of a real smart person is their ability to explain complex stuff in simple terms.
To help make my point here is an analogy that will more than likely do little but prove I am not such a smart guy. One of the reason the financial industry crashed and burned this fall was credit risk swaps. These are instruments of spectacular complexity. Congress decided that since they are only available to big smart firms, like say AIG, that they, Congress, didn't need to regulate the market for swaps. The idea was that the super smart guys buying and selling the things would be a balance each other and the market would be self regulating.
That didn't work out real well.
In part because a free market assumes there is information. But nobody was reporting what their position in swaps was. Not knowing AIG was awash in swap risks the market couldn't accurately price AIG. In case you missed it We the People are on the hook for a few hundred billion in loans to the super smart guys at AIG.
The moral of the story is that information is critical.
I am all for IDDP projects. In the interest of respecting hardest earned penny of the face of the earth the single mom as well as the rest of us should have some idea of how many pennies are involved, what the the pennies are trying to achieve and if it is wildly successful how will JDRF get the pennies back.
In the specific case in point, I don't think it is asking too much to know if Osiris signing a potentially billion dollar deal for a product an IDDP investment was helping into trials counts at a milestone for repayment. If so, then JDRF can do another similar deal with someone else as another step on the path to a cure.
The stock is getting whacked, we hold these truths to be self evident since everything is getting whacked. Some press is about DexCom and not making earnings this quarter. That is par for financial press.
I find more interesting the news that they are entering into an agreement with Edwards Lifesciences Corporation, "to develop products for continuously monitoring blood glucose levels in patients hospitalized for a variety of conditions." The deal brings cash to DexCom and helps get the product into institutional markets. I would think that a wider market for DexCom products is a good thing. Of course your interpetation of how this all shakes out is up to you. I like the idea of a vote of confidence and capital in the CGM feild.
More interesting persoanlly, since we use Animas pumps, are the comments about DexCom and Animas. They are still expecting a product out in the summer of '09. See Seeking Alpha for the full call transcript
"A quick update on our insulin pump partnership with Animas Corporation. We continue to make substantial progress on the joint development of an integrated insulin pump CGM System with Animas Corporation. Our continued goal is to complete all development, clinical and regulatory efforts with Animas and be positioned to launch our first product during the summer of 2009. But, as you are well aware, the timing of regulatory process is uncertain."
There is other good stuff like talking about working with insurance for reimbursement, demand for the product, the JDRF study and lots of geeky finance talk. If that stuff floats you boat enjoy the call transcript.
Your Diabetes May Vary and so does the value of stocks I own including DexCom. Hopefully your A1C is more stable than portfolio. LOL.
November 7, 2008
SYDNEY, Australia & AUCKLAND, New Zealand & BOULDER, Colo., Nov 06, 2008 (BUSINESS WIRE) -- Living Cell Technologies Limited (ASX: LCT; OTCQX: LVCLY) today updated shareholders at their Annual General Meeting in Adelaide, Australia on the Phase I/IIa clinical trial of DiabeCell(R), LCT's lead product candidate for the treatment of insulin dependent (Type 1) diabetes.
A total of six patients have been implanted with DiabeCell(R) to date; five patients received the lowest dose of 5,000 islet equivalents (IEQ/kg), and one patient was dosed with 10,000 IEQ/kg. Of the initial five patients, four have had a second dose and two patients have been observed for more than 12 months. Of the two patients followed for more than a year, observations include:
Patient one has maintained HbA1c at the ideal level of 6.7 percent with less insulin. His daily insulin dose requirement varies and has been reduced by 25 percent to 46 percent compared to his pre-treatment insulin usage.
Patient two did not require insulin for five months after the first implant and now uses 36 percent less insulin daily than before the DiabeCell(R) implant.
To date there have been no remarkable adverse events.
Click here for more
November 6, 2008
Genzyme Corp. and Osiris Therapeutics announced today that they have entered a strategic alliance for the development and commercialization of Prochymal and Chondrogen, two novel, late-stage adult stem cell treatments that hold significant potential to treat a wide range of diseases. These stem-cell products are designed to provide therapeutic benefit by controlling inflammation, promoting tissue regeneration, and preventing scar formation.
The Wall Street Journal has more:
Genzyme Corp. and Osiris Therapeutics Inc. have reached a deal, valued at as much as $1.4 billion for Osiris, to jointly develop and sell Osiris stem-cell-based treatments that are aimed at several diseases.
Under the deal, Genzyme will pay Osiris $130 million upfront in two guaranteed payments, the second of which is due on July 1, while it helps develop and market Osiris's Prochymal and Chondrogen products. The deal then calls for as much as $1.25 billion in potential payments over several years as regulatory and sales milestones are hit.
Prochymal and Chondrogen are made from a type of stem cell that is taken from the bone marrow of adult donors. Prochymal is an injectable drug aimed at a number of diseases, including a rare immune-system problem that can hit marrow-transplant patients, while Chondrogen is being developed as a potential injectable treatment for severe knee arthritis.
So how does the JDRF thing factor in? I wish JDRF was transparent about this stuff. They aren't. Well off to see what I can find out.
October 27, 2008
October 25, 2008
At the risk of further damaging my good reputation (I know you’re thinking “What reputation?” As if I could say anything else to make myself out to be more of a total boob.) I want to talk about Halloween candy.
Candy didn’t cause our kids to be type 1.
Candy isn’t going away because they are.
I needed to learn this but it is a lesson I learned early. I didn’t know much about diabetes; OK I didn’t know jack squat about type 1 diabetes before Connor was diagnosed other than there were some parents who had to give there kids shots every day and I thanked god I wasn’t one of them.
I hated needles. I still do.
I know a lot more now than I did then. Mostly I know not to spell out my fears for Murphy’s Law by being thankful for not having needles in my life. It is a sure fire ticket to Needleville.
Before he was released from Children’s Hospital of Philadelphia I learned the lesson that candy didn’t cause Connor diabetes and his having it wouldn’t make candy go away. They were very clear - Kids with diabetes are kids and so are entitled to the joys of being a kid.
Candy on holidays is part of being a kid.
Candy based holidays are important and among the many things CHOP taught us were these two: He is trick or treating. He is eating his candy (as part of his scheduled carb intake.) They released him a day early on the morning of Halloween with solemn and serious instructions to trick or treat that night.
So I am here to say don't let your kid grow up and become some kind of a scared by Snickers bar Halloween freak like some vbloggers I know. Let them eat cake! Or in this case the candy! For Kerri I recommend the both in the form of a Crumbs' Snickers cupcake.
Be a kid with diabetes.
October 23, 2008
Glucose monitoring in diabetic pregnant women lowers risk of complications
Continuous glucose monitoring as part of antenatal care for women with diabetes improves maternal blood glucose control and lowers birth weight and risk of macrosomia (excessive birth weight in babies), according to a study published on bmj.com...
This trial provides evidence of the lasting benefits of continuous monitoring for the babies of mothers with diabetes and is a potentially important target for public health strategies that aim to reduce the burden of obesity in childhood, say the authors.
In an accompanying editorial, Professor Mario Festin says that continuous glucose monitoring increases the consistency and accuracy of glucose measurement which is vital for the nutritional and drug management of diabetes in pregnancy.
Continuous glucose monitoring is relatively cheap compared with a clinic based monitoring system and more widespread use may make it more affordable even in developing countries, he concludes.
October 22, 2008
Wednesday October 22, 8:32 am ET
Novel Insulin Formulation Provides for Glucose-regulated Insulin Delivery
BEVERLY, Mass. & NEW YORK--(BUSINESS WIRE)--SmartCells, Inc. and the Juvenile Diabetes Research Foundation (JDRF) today announced a partnership to advance SmartCells’ SmartInsulin™ for the treatment of type 1 diabetes. SmartInsulin will be a once-a-day, glucose-regulated subcutaneous insulin formulation for treating diabetes. SmartInsulin is injectable, like today’s currently available insulins, but designed to maintain continuous, tight control of blood glucose levels while reducing the risk of hypoglycemia – like the pancreas does automatically in the absence of diabetes. As part of the agreement, JDRF will provide $1 million in first-year funding to support preclinical safety and efficacy testing. The partnership is structured to support milestone-based funding through proof-of-concept human clinical trials.
October 20, 2008
Echo Therapeutics Announces Issuance of New Patent for Symphony(TM) Transdermal Continuous Glucose Monitoring System
FRANKLIN, Mass., Oct 16, 2008 /PRNewswire-FirstCall via COMTEX/ -- Echo Therapeutics announced the issuance of U.S. Patent 7,432,069 covering compositions and methods for the preparation of a polyethylene glycol (PEG)-based hydrogel as a key component of Echo's Symphony(TM) Transdermal Continuous Glucose Monitoring (tCGM) System. "Our proprietary PEG hydrogel, specifically designed to enable transdermal biosensing, is characterized by excellent stability, sensitivity, integrity and biocompatibility, making our Symphony tCGM System a desirable system for non-invasive continuous glucose monitoring," stated Patrick Mooney, M.D., Echo's Chairman and CEO. "This patent is critical to our intellectual property strategy for protecting our leading position in non-invasive, tCGM markets worldwide."
October 17, 2008
"Additionally, the Animas business achieved operational growth of over 30%
driven by continued market share gains in the pump business."
Well in context, diabetes was all of 4 sentences.
"...The diabetes franchise grew operationally by 10% in the third quarter of
2008. The US business grew by 9% while sales outside the US grew 12% on an
operational basis. The success of the One-Touch Ultra line has been the major
contributor to growth.
Additionally, the Animas business achieved operational growth of over
30% driven by continued market share gains in the pump business."
30% growth is impressive. If it was a stand alone it would be impressive. What is scary for those of us who depend on the products and services is that it is such a small piece of the J&J Family that smooth sailing is probably more important than innovative solutions. However I get the feeling that the strip business is more important to J&J than the pump. Just look at the screens.
October 15, 2008
Protein Made In Liver Restores Blood Glucose In Type 1 Diabetes (Mouse) Model
ScienceDaily (Oct. 15, 2008) — A protein made by the liver in response to inflammation and used to treat patients suffering from a genetic form of emphysema has been shown to restore blood glucose levels in a mouse model of Type 1 diabetes mellitus, according to a new study led by researchers at Beth Israel Deaconess Medical Center (BIDMC)....OK, unless the destructive T-cells are stopped nothing is going to work. (Hence all the interest in Faustman’s work.) That is the point of this little story in US News & World Report:
"To cure Type 1 diabetes, it will not be enough to halt the destructive T-cell-dependent autoimmune attack on beta cells," explains the study's lead author Maria Koulmanda, PhD, Director of Non-Human Primate Research in the Transplant Center at Beth Israel Deaconess Medical Center (BIDMC) and Associate Professor of Surgery at Harvard Medical School (HMS). "We think that it will also be necessary to restore proper insulin signaling, and the way to do that is by eliminating the curious inflammatory state that exists in muscle, fat and other insulin-sensitive tissues."
Beyond Insulin: Searching for a Cure to Type 1 Diabetes
Positive Results Seen in Juvenile Diabetes Vaccine Study
October 10, 2008
Of course blood doesn’t do anything of the sort. “Good” BG numbers don’t mean good parenting. In fact in my rational mind I understand that point to point there are good or bad numbers, Not that I don’t act emotionally all the time as if there are "good" numbers.
Parenting isn’t a short term deal. We need to be consistent, we need to be positive, we need to be encouraging and we need to get over our need for short term feed back. There is an amazing This American Life about how positive messages can be a big change in a child's future. So for us it is not about blood test to blood test numbers, it not about day to day numbers, it isn’t about quarter to quarter A1C. Look at Wall Street it lived quarter to quarter on good numbers with little concern for long term quality. There is a parenting analogy to be found in there.
Wall Street has some very fancy number crunchers. The have the best math wizards money can buy. They got great numbers quarter to quarter and are blowing up in one huge mess. We can become math wizards and micro manage BG and have great A1Cs.
That isn’t the goal. The goal is for the kids to grow up to be competent self managers so that we can worry about them less. Our goal is to raise them in such a way that we can have confidence in their ability to have productive happy lives while they self manage diabetes as part of that happy productive life.
Here is how we will know if we have done a good job. If when they are newly wed and anticipating their own families they look back and describe their childhood not as "childhood with diabetes" but instead just "childhood."
LY/MI Kerri. I hope I am working towards Delaney growing up with the same view of her childhood.
October 1, 2008
The idea is a skin patch that talks to you cell phobe via RDIF
Developed by Gentag, Georgetown University and SAIC, the system uses a non-invasive skin patch to measure a patient's glucose level, and an RFID-enabled cell phone to receive that data.
Sept. 30, 2008—A team consisting of Georgetown University's Georgetown Advanced Electronics Laboratory (GAEL) researchers, Science Applications International Corp. (SAIC), and Gentag, has finished development on a glucose measuring system that, once commercially available, would allow diabetics to monitor their glucose levels electronically—using an RFID-enabled cell phone—without needing to prick their fingers.
September 29, 2008
The gist is they are just all over it and I shouldn’t be worried because they are just brilliant. Sure. Then why did you’re their own pharmacist decide to re-ship not once but twice? He did let the cat out of the bag and told me they were looking into considering the weather when they ship going forward. Ya Think?
I called Lilly. They wanted me to know I could refuse a shipment. Not that they have a vested interest or anything.
I asked at what temperature can I be confident that the stuff is OK? In short if I take my trusty instant read thermometer and check the stuff what is the safe range to store the stuff?
36 to 46 degrees.
Get a thermometer. Check your insulin. If your shipment is in that range you are cool, literally as well as figuratively. Simple no guessing.
No need to thank me, adding more numbers to check into the daily lives of families with type 1 is thanks enough.
September 23, 2008
See what I mean.
When kids are under stress one of the very few things they can control is what they do or do not eat. As parents of type 1 diabetic kids we need to be aware that the eating and emotional link does not disappear with the beta cells.
No. In fact all diabetes does is add to the complexity.
We parents take new eating rules kind of matter of fact - this is the diet plan. That is it. For us the stakes are too high to not follow the plan. We are talking about our kids lives, that's enough for us - we are following the plan.
The problem is that message doesn't really get through to the kids. They may hear it. Can probably recite it. But they just don't buy it like we do.
Guess what? (This may be hard to believe) The kids are stressed by diabetes. (I know it came as a big shock to me too...)
We need to be aware of food not only as carbs but as a possible indicator of distress. OK maybe we should just settle for not letting food make thing worse.
The New York times recently ran an article about the 6 Food Mistakes Parents Make. One for the six was about forbidden fruit. They say:
Keeping ‘good stuff’ out of reachWith the strict eating schedules of some insulin regimes (cough, NPH, cough, cough) some type 1 diets make almost everything forbidden fruit. As a result kids want - more of everything! This can lead to a cycle of escalating parental control and child rebelling with eating off schedule and covering with insulin or not. It really goes off the rails when folks talk about eating in negative terms like sneaking or cheating.
Parents worry that children will binge on treats, so they often put them out of sight or on a high shelf. But a large body of research shows that if a parent restricts a food, children just want it more.
In another Penn State study, researchers experimented to determine whether forbidden foods were more desirable. Children were seated at tables and given unlimited access to plates of apple or peach cookie bars — two foods the youngsters had rated as “just O.K.” in earlier taste tests. With another group, some bars were served on plates, while some were placed in a clear cookie jar in the middle of the table. The children were told that after 10 minutes, they could snack on cookies from the jar.
The researchers found that restricting the cookies had a profound effect: consumption more than tripled compared with when the cookies were served on plates.
Other studies show that children whose food is highly restricted at home are far more likely to binge when they have access to forbidden foods.
High from uncovered or off plan eating is tough enough. Not eating for insulin already in the kids is end tougher. Hear of hypos are why a lot of parents do not pre bolus kids for meals. It is just too hard to predict what they may eat. And if they don't what do we do about the lows.
If we parents becoming more controlling and more critical of what we see as a lack of the kid's efforts we are just asking for more trouble. Here is a nice little paragraph on that from our friends at Wikipedia:
Research from a family systems perspective indicates that eating disorders stem from both the adolescent's difficulty in separating from over-controlling parents, and disturbed patterns of communication. When parents are critical and unaffectionate, their children are more prone to becoming self-destructive and self-critical, and have difficulty developing the skills to engage in self-care giving behaviors. Such developmental failures in early relationships with others, particularly maternal empathy, impairs the development of an internal sense of self and leads to an over-dependence on the environment. When coping strategies have not been developed in the family system, food and drugs serve as a substitute.Let see... Diabetes care takes a lot of controlling (and IHMO it real easy to become over controlling) and that potentially feeds (get it feeds?) into eating disorders. Forbidden food becomes more desirable food... and diabetes forbids food all over the place. Catch 22 anyone?
I don't know what the solution is.
For us it is in part pumps that allow for a more flexible eating regime. Another big but very hard part is to see numbers as numbers without attaching value judgments to them. For me in particular not attaching positive feed back to 'good' numbers. I need to go to the next step and ask about the behaviors that result in numbers and provide positive feed back for good behaviors - what ever the number is. Stuff like; 'What did you do about it?' 'How did you get there?' 'Why do you think you got there?' Followed by. 'That was good thinking on your part.'
Come to think of it, at times the 'good stuff' we tend to keep out of reach isn't food. It is the non judgmental loving positive feed back. Only makes the kids want it more.
September 19, 2008
Scientists Turn Human Skin Cells Into Insulin-producing Cells
ScienceDaily (Sep. 18, 2008) — Researchers at the University of North Carolina at Chapel Hill School of Medicine have transformed cells from human skin into cells that produce insulin, the hormone used to treat
The breakthrough may one day lead to new treatments or even a cure for the millions of people affected by the disease, researchers say.
The approach involves reprogramming skin cells into pluripotent stem cells, or cells that can give rise to any other fetal or adult cell type, and then inducing them to differentiate, or transform, into cells that perform a particular function – in this case, secreting insulin.
University of North Carolina School of Medicine (2008, September 18). Scientists Turn Human Skin Cells Into Insulin-producing Cells. ScienceDaily. Retrieved September 19, 2008, from http://www.sciencedaily.com/releases/2008/09/080917175042.htm
September 17, 2008
We do not. But that is only our situation. I realize each child is different. At one point we used to make a joke. I told my son that if he was going to "sneak" food that he was to come to me and tell me he was sneaking food with a wink. Of course the agreement is that I can't say anything but ok and wink back and he would of course bolus himself! He did this once or twice and that was the end of it. He doesn't sneak any food. I also try not to limit food for d reasons. I will for health reasons but not for d. Like I said this just worked for us.
Here is what I find particularly helpful. First it is an ‘I’ statement as in I do this. Not you should do something but I do this. Next she is right up front with the idea that situations differ. Yeah YDMV! OK Y Parenting MV
Now comes the real brilliance - Joke about it. Wink and a nod support for breaking rules. Making it kind of fun to do what is the long term goal. Specifically know that it is OK and FUN to eat and bolus.
Kristin flips confrontation potential into a positive parenting practice pre positioning proper independent performance. That is 8 parenting P words that aren’t punish!
September 16, 2008
But what is to be gained? So some sports dude with a grudge against McDs wants to blame it on Jay Culter. I could point out that as an NFL quarterback I bet he gets his fair share of exercise every week, maybe extra on Sundays. That T1 is not T2 and yatta yatta yatta
But so what? I wish the world was more aware of diabetes and the distinction of the two types and all that. It isn’t. So Jay gets a bum rap from this clown and got away with a bum call on Sunday. So what?
It just doesn’t matter. What matters is that I do something positive with what I know. So I am going to work on encouraging the diabetics here to focus on the life part of their lives. Today that means being enthusiastic about Delaney starting field hockey and Connor getting to playing Bob Cratchit. Then I should go walk on the treadmill so I don’t get type 2. That is real life.
Dude on the sports site should get one.
September 12, 2008
Caremark managed to get insulin to us. 3rd delivery wasn't cooked. yeah!
Even delivered it over night. Just like they said they would. They just didn't say over what night.
They gave us a tracking number. It didn't show up in UPS's system. That was because the number is assigned when they pack it. They packed it held it a day and then shipped it over night. They claim they have cold storage at shipping.
Forgive me if I am a wee bit concerned. They have not been real credible.
So when they gave me a tracking number, it didn't track because UPS hadn't scanned it in. Sure that just peachy with me. When the tracking number did work, it showed it wasn't on the truck for delivery. But it was.
That all works out in their minds. Somehow.
It came. While the ice was almost totally melted but this time it was still cold. And it was packed tight. I was impressed, well no I wasn't. I was sceptical and put my insta-read thermometer on it.
So the third batch came, a day late. $4,000 give or take worth of insulin cooked to get it here.
Apparently others have had the same problem. At least that is what they said when I talked with them, but this has only been like 5 people and only recently since they stopped shipping over night.
Lets see 5 people time 4k each is 20 grand. I was an executive complaint guy for a while. (Job sucked.) My experience was that only a small number of people really speak up. In fact we counted on it. Well less than 10% have the nerve work through the concentric rings of telephone protection to get to a supervisor let a lone the complaint department. Let say it is 10% then that $20 grand is really $200,000.00. Oh and it is a quarterly shipment... so they could easily be running at a burn rate of $800,000 of cooked insulin on an annual basis.
I wouldn't really care if it were a free market. Caremark could go out of business, I'm good. If my pharmacy screws up I can go to the one across the street.
BUT Caremark is not in the free market business. They are in the business of being a monopolist. I don't have the choice across the street or down the internet. I am locked into them as the provider under my insurance plan. A plan that I have no say in choosing. (Maybe they take the insurance guy golfing... in the Bahamas... for most of February.)
There is a very vocal voice that rail against 'limiting the free market' in our medical care system. Where is there a free market? Show it to me. We have 'Managed Care' a phrase that means a group of businesses that work together to limit the fundamental market forces of consumers selecting service providers based on service and value.
Caremark wanted me to know it is their cost to eat the 4k. Sure it is. Their cost go up, they pass the cost on to the insurance company and my share of the insurance costs go up.
The office of the Caremark President called. They said the presidents name was Tom Ryan. In July's earnings report Tom said, "We delivered solid improvement in sales and gross margins and continued to exercise disciplined expense control."
Sure thing there Tommy, Can you explain how pissing away 4 grand worth of insulin constitutes disciplined expense control? Yeah your shipping cost went down a few bucks. BUT You increased your return costs significantly and it not a isolated case. One middle level complaint person has seen a number of cases. Extrapolate that (Tip: use the same math you use to figure out your pay package.)
Have fun golfing in the Bahamas, we'll be here trying to manage our kids blood glucose. We don't mind that you wasted more than the cost of CGMs for our kids. Honest we don't. Pay no attention to the voodoo doll that looks like you we are using old syringes on. It mean nothing... Honest.
I am all for free markets. Health care in the US is not one.
I don't expect the service providers to work at their jobs as hard as families with Type 1 work at diabetes care. We are on 24 7 365.25. It is only a job for them, an honest 40 hours a week would be great. Real market forces would be good too.
September 10, 2008
I'll let the lovely Mrs YDMV tells us about it:
The story goes like this.
On Wednesday I order our 3 months of supplies
for both kids. On Friday18 vials of insulin arrive. It was delivered 2 day UPS
(did I mention it the 90 drgree plus days?) When opened the ice pack was warm and so was everything else including the insulin.
I called and spoke to the CS rep, then the Pharm tech and finally the pharmacist... They were going to overnight me another 18 vials of insulin.
By monday afternoon nothing had arrived so I called. Yes it was sent Sunday it should be there by Tuesday. WTH???? It was supposed to be overnighted.
Tuesday afternoon UPS arrives with the box labeled GROUND - I spoke to UPS in between and was told it had no special delivery time attached or slow boat to China except speed. We are 3 hrs from the Warehouse so it only took 2 days.
Opened today insulin and it is almost cold. Ice pack is melted and just cool, boxes are sort of cool (compared to a 90 drree day.) The insulin bottles against my cheek are coldish (but then so is any peice of glass.)
I decided to call Caremark. I finally get to the Pharmacist after the CS rep and Pharmacy tech. He decides that we do indeed need more insulin. That the last batch should have been overnighted and the frozen packs were frozen when they left the warehouse. So, we now have $4000 worth of insulin that will only be good for a month and the promise that another 18 vials will be overnighted.
I hope that the cost saving measure with regards to not shipping over night insulin any more is worth what they have lost on insulin to our house alone. But then overnght shipping doesn't run 4k per order does it?
My theory is they usually just sent one kid's bottles out so, one mid size freezer pack works just fine keeping the stuff refrigeration temp for 2 days. Unfortunately nobody is doing the calculations with how much extra cold they will need to provide to keep 18 vials of insulin cold for 2 (hot) days... So, they keep sending it two day with one frozen pack which warms up with all the bottles of insulin in the package.
So we are shipping back 'a little insulin' (a word that means 'just' the insulin in the photo above) so we don't get stuck paying for it. To keep anyone else for paying for the mistake we are going to take a sharpie to the boxes. That way the stuff doesn't end up in some other kid.
Oh and wouldn't that insurance money have been better, a word that hear means help keep BG in control, spent on a CGM?
September 9, 2008
Gotta go with the guy in the pool:
Yahoo is reporting Braylon Edwards bet Michael Phelps he would score twice as manty TDs as Phelps won golds. Good luck with that.
One more reason to love a good sacking:
AP is carrying the story of Jared Allen.
EDEN PRAIRIE, Minn. (AP) Minnesota Vikings defensive end Jared Allen is looking to sack more than quarterbacks this season.
Allen has teamed up with the Juvenile Diabetes Research Foundation to launch an initiative called "Sack Diabetes." Allen will donate $3,000 for every sack he records to the local JDRF chapter in the city he plays.
That means the Minnesota chapter will get $3,000 for every sack he records in a home game this season. Allen led the league in sacks last year with 15 1/2 despite missing two games because of a suspension.
So if he plays Denver who ya rooting for?
September 8, 2008
JDRF Study Results Show Continuous Glucose Monitoring Provides Significant
Benefits in Management of Type 1 DiabetesMonday September 8, 9:06 am ET
ROME--(BUSINESS WIRE)--New study data presented by the Juvenile
Diabetes Research Foundation (JDRF) today at the 44th annual meeting of the
European Association for the Study of Diabetes (EASD), showed the use of
Continuous Glucose Monitoring (CGM) to be effective in the management of Type 1
Highlights of the study results include:
- Patients 25 years of age or older who used CGM showed significant
improvement in glucose control as measured by HbA1c.
- Most importantly, this improvement in control was observed without an
increase in hypoglycemia (low blood sugar), which is a common concern in
intensively managed patients trying to achieve improved glucose control.
- In all ages, patients who used CGM at least six days a week had
substantially improved HbA1c levels.
Kerri maybe this will help with the insurance company.
Biodel Announces Preliminary Results of Pivotal Phase III Clinical Trials for VIAject(TM)
DANBURY, Conn.--(BUSINESS WIRE)--At the 44th Annual Meeting of the European
Association for the Study of Diabetes (EASD) in Rome, Biodel Inc. (Nasdaq: BIOD - News) today reported results from
its two pivotal Phase III clinical trials designed to compare the efficacy and
safety of VIAject™ to Humulin® R, a regular human insulin (RHI), in the
treatment of patients with Type 1 and Type 2 diabetes. The primary objective of
the trials was to determine if VIAject™ is non- inferior to RHI in the
management of blood glucose levels, as measured by the mean change in patients’
glycosylated hemoglobin, or HbA1c, levels from baseline. HbA1c is a measure of
average blood glucose level and an indication of how well patients are
controlling their blood glucose. Based on the initial analyses, both clinical
trials met the primary endpoint of non-inferior mean change in HbA1c over six
months of treatment.
VIAject™ is Biodel’s proprietary injectable formulation of recombinant human insulin designed to be absorbed into the blood more rapidly than currently marketed rapid-acting insulin analogs. Two posters summarizing the preliminary Phase III clinical trials results are being presented at the EASD conference and are now available on the Biodel website, http://www.biodel.com/. The first poster is entitled “Insulin VIAject™ and Regular Human Insulin in Patients with Type 2 Diabetes; Efficacy and Safety in an Open Label Multicenter Clinical Trial.” The second poster is entitled “Insulin VIAject™ and Regular Human Insulin in Patients with Type 1 Diabetes; Efficacy and Safety in
So I guess the point of non inferior is it isn't any worse. Faster with less of an insulin on board tail sounds cool to me.
The usual full disclosure statement here. I have a few shares of Biodel.
September 3, 2008
September 2, 2008
President & CEO
6340 Sequence Drive
San Diego, CA 92121
I have a particular interest in DexCom, in a small ways as a both a little share holder on a pure CGM play and as a diabetes blogger and in a very large way as the parent of two type 1 kids who have a very real long term interest in continuously managing their glucose.
I had the pleasure of talking to some of your team at Children With Diabetes Friends for Life conference in Orlando last month. Thanks for sending them. Maybe next year you can arrange for some trials of your device like MiniMed did this year. That would be great! A two day trial of their device dramatically changed my 14 year old son’s disinterest in wearing a CGM into a tangible interest in using one.
Since then I have read over your comments on earnings calls reported on Seeking Alpha. I have some questions that you may or may not know answers to.
In the March 11 call you talked about how DexCom and the pump folks will deliver data to us, families with diabetes. You said:
“In each case, DexCom’s CGM data will be displayed on the partner’s pump. In addition to insulin dosing information, patients will have access to glucose trend information, as well as high and low alarms, all in a single display unit.”
That sounds like how MiniMed is doing things now. That is good except we don’t love their pump. It is an attractive approach to CGM Pump integration as it requires less belt space on my daughter’s Batgirl like utility belt of diabetes gadgets.
I have to wonder is that ‘on the pump’ approach really going to be the case? Insulet most obviously will bring the data to their PDA like controller. For their approach to pumping the PDA is the pump interface.
Animas seems to be going down a similar path with the Ping meter/remote. Given that, do you continue to see the CMG data showing up on the partner’s pump or on will it be on another device like the remote control meter? Unlike heads to solve a problem, where two is better than one, for diabetes junk for a kid to carry one device is better than two.
Further the flexibility to choose the meter that best suits the user’s lifestyle is a feature that would be limited but using a PDA Meter as an intermediary. I would hate to be required to use the Pod or Ping meter to calibrate the CGM. But then you know recognize this value by your recent effort to get approval to us any meter to ‘Open Code’ the Seven unit.
So will it be CGM data displayed on the pump, or a meter in between?
Terry emailed back:
August 30, 2008
I wrote him about HB 2002 Short Title: An Act amending the act of March 10, 1949 (P.L.30, No.14), known as the Public School Code of 1949, further providing for school health services. (I would hate to see a long title ya know what I mean?)
This is the PA Safe at School bill for students with diabetes I wrote about a few days ago. He called our house when I was at work yesterday and spoke with one of the older kids. He said he would add his sponsorship. I got this card in the mail from him today.
Wow that was fast. I even see he is now listed on line as a a co-sponsor of the bill!
Democracy in Action! Wohoo!
So my friends I suggest you join me in voting for the honorable Mr. Murt if you are in our district and if you are not, write your honorable dude or dudette.
August 29, 2008
Funny thing about Type 1 is how it makes life so quantifiable. Poke your kid with a shard of steel squeeze out some blood and in five seconds you get feedback on your parenting skills. Hit the goal and you are doing great. Oh, that parenting would be so easy - it's not.
And the goal isn’t a number.
Everyone who has listened to Cosby knows that as parents our goal is to get the kids out of the house. Yeah, it is a joke, but it is funny because it is true. The target is their own apartment supported by their own income. It’s not that we don’t love’m to the contrary we love them so much that we want what is best for them. Coincidentally what is best for them (to move out of our house) is good for us too.
It's just that nobody told Type 1 the plan. It will try to confuse you into not focusing on the goal. It wants you to see numbers and find reasons not to trust. Type 1 wants us to be clingy and over protective to withhold responsibility. It tells us this is for the kids own good, until they grow up.
Life doen't to happen instantaneously. Not that that wouldn’t be nice; all, sweet little kid then BAMB! Hit'm with some Emril essence and instant adult. No issues in between. But they have to grow into being an adult. We need them to grow into it so we know they can handle the responsibility. What the heck parents need kids to grow into their adult lives so we know WE can handle giving up the responsibility.
For our kids to step into their lives we need to step back.
Sadly part of our type 1 kids' adult lives will be diabetes management. Yeah a cure would be cool but my bet is our kids will grow up and move out before there is a cure. So we need to help them get ready and our part of that is growing into the idea of letting go. Giving responsibility and trust is as important for us as it is for them. We have to get past our 'need' to look over their shoulder and read the meter - literally then figuratively. They will never get out if we don't let go.
We all made type 1 mistakes. Making them was a big step in our growth as type 1 parents. Remember that first missed shot? It was a good thing. Didn't feel like it at the time but it was. It meant we were getting past the shock of diagnosis and getting back to some part of life. A little. We kicked ourselves for it too. We saw progress as failure. Don't do the same thing with letting go, don't make the mistake of seeing progress as failure.
Our teens need the same process of growing we did. We need to see their taking responsibility and forgetting as progress not failure. To do that we need to see far more successes than slip ups. We may need to create success situations as well as not yell at slip ups.
Create success situations like, "I want you to take care of you diabetes this evening when we are out, this weekend, this week, this month, until your next check up. How about you take these prescriptions to the pharmacy, call in you set order, down load your meter, set your basals and take out the trash." Hey when they are living by themselves the trash will still need to be taken out.
It is about life. It isn't easy. It takes a lot longer than a blood check. It is not about a number. Unless that number is their apartment unit.
August 27, 2008
August 26, 2008
Read all about it here: Selective Killing of Autoimmune Cells Suggests Therapy for Type 1 Diabetes
BOSTON, Aug. 25 -- Laboratory studies of type 1 diabetes and other autoimmune
diseases show that boosting levels of tumor necrosis factor (TNF) or its
receptor activity selectively destroys autoreactive T cells, suggesting a
possible cure for the diseases, investigators here reported.
Oh and you can listen too. There is an audio clip.
Oh and More Mice are getting cured:
August 25, 2008
Tonight the Democrat’s National Convention starts.
I am going out on a limb and guessing the Olympic Games will prove more entertaining than the Political Games.
Once again health care is a ‘Big Issue.’ The national parties are going to fight about stuff that they are more interested in as fighting points than practical day to day living with a chronic condition matters.
Can you tell that I don’t have big expectations that much will change? Tip O’Neill once said, “All Politics is Local.” Old Tip knew his stuff. Take his advice.
Maybe the most local issues are schools. You don’t have to look too hard to find parental angst on the issue of type 1 care and school. In fact I dare say this is a more emotional issue with type 1 families than the mess that we lovingly call health care / insurance.
All the boogie men of type 1 come into play with a bad school and type 1 family relationship; the food police, testing, activity, power, ignorance, responsibility and all the rest.
There is a T1 community but for the most part it is a virtual community that exists with on line connections. Politically we are not locals so in a lot of ways we don’t exist as a block with political clout.
So while you are skipping the coverage of both parties national convention, drop a note to your state representatives about the need for safe diabetes care in school. If anyone knows a list by state of pending legislation, I would live a link. ADA has this list of states with laws and this about states that don’t but neither is quite a list of states with legislation pending to call and write our legislatures about. (Pa folks here is the info for us.)
Do your civic duty. Watch the national conventions if you must but during breaks write you state reps and help bring some rational order the school rules for type 1.
August 22, 2008
A Croc cell phone case.
You know what else is a croc? Thinking serious an solemn are the same thing.
Thanks Cosmo Ladies.
August 21, 2008
We steer a ton of business the J&J family’s way. For example test strips.
It seems that they, like a lot of families, have some less functional members. By this I mean the One Touch branch of the family. Don’t get me wrong I still feel good about being a customer of someone who is bringing all the swimming races into our living room and a bunch of good people to FFL but maybe they could take a lesson from the events they beam into said living room.
Timing is everything - see Michael Phelps’s touch out in the fly. One one hundredth of a second did the deal. I think we can all be impressed with the time keeping ability needed to correctly identify the winner.
Time matters. Unless you are one touch.
One touch isn’t exactly in the same class as the Olympic Games when it comes to timing. Our meters seem to stray off time about as fast the US Swimmer set worlds records. In other words - all the time. I have flat out given up trying to keep them in line and on time.
Time isn’t the only place this member of the clan seems to be off on its own. The $200 Ping meter is another case in point. (Any bets on if a $200 meter keeps time better than a free one? No. Wonder why not.) Animas went out of their way to make the 2020 bright readable color. One touch made the Ping meter dull unreadable monochrome.
There were clear undercurrents of Us vs Them when we asked about this at the combined One Touch / Ping booth at Friends for Life. As in go ask ‘THEM’ head jerking toward the One Touch side of the display booth why the meter has that screen. Clearly the issue had come up and the Animas and One Touch branches of the family had different views on viewable screens.
One Touch also demonstrated it is a bit of out of touch when it came to Mini’s too. For one thing they are not really particularly small. Hey One Touch - how about a meter in a strip can cap like a SideKick? That would rock.
We have two kids with Type 1. Telling the meters apart comes in handy for tracking who numbers are what. Even if you can’t trust the clock in the meter for when tests were done, knowing which meter is who’s helps. Color is a handy little feature in this regard. Yes Minis come in colors. (Grown up meters like Ultras Smarts and Pings only come in boring grown up gray because being a grown up apparently means being boring.)
Colored cases would be cool too. At FFL One Touch made it clear they have them. Yeah! Well they didn’t exactly have them at FFL. One Touch said they drop shipped the cases to selected Endo offices. They suggested we could call our Endo and see if they were one of the lucky offices that got them.
Ok I’ll get on that, after the Olympics.
August 19, 2008
I’m here to confess.
My name is Bennet and I am a cheater.
I snuck food and didn’t bolus when I was on the pump.
Well more like I just flat out forgot - about half the time.
It is so easy to get frustrated when the kids don’t bolus. The online forums are full of parental angst when kids don’t. We are SURE we would bolus every time if it was us.
I got news for ya: The only thing easier than being frustrated when your kid doesn’t bolus, is forgetting to bolus.
I dare anyone to put on a saline pump, put yourself in a moderately intellectually stimulating environment and see if you remember to bolus all the time. Oh and have your favorite snacks around and out when you wear it.
I flat out sucked at remembering. I would be walking out of a session all fired up about the topic talking with someone, grab a snack and keep talking. OK, ok, everyone who knows me, knows I keep talking all the time anyway, but there is a point here and that is... I forget...
... Doh! I’m wearing a pump.
What's more, if you’re not used to wearing a set everyday they’re not all that comfortable. It isn’t that they hurt. It is that they are just there, bugging you any chance they get.
The things are bastards that way.
The cord tries to pull the pump into the bowl every time you use the toilet. It thinks that is funny. I am telling you right now, you too can do in-stall gymnastics like a prepubescent Chinese kid looking for gold, when you know a 6 grand pump is heading for commode. If it isn’t diving for the bowl the pump is forever getting tangled up with the cell phone on your belt.
In short the pump made me well aware it was there, I just forgot to bolus.
Eating is as often a reflex more than a conscious act. There is food, it is comfort, you eat, you pay attention to what your mind is on and you forget the pump despite its gold metal efforts to remind you.
If you are like every other parent you and your fellow parents have designed our collective kids’ lives to keep them intellectually stimulated. We build building for that very reason. We call them school and pay taxes every month to support them. We want our kids to do well at this school thing. I mean we not only want straight ‘A’ but the class presidency, editor of the school news paper, lead in the play and league MVP would be nice too.
Kids have stuff on their minds. We go to great lengths to insure it.
- They are used to wearing sets.
- They know how to use a toilet and not do the stall Olympics.
- They can wear a pump and a cell phone without entangling the phone in the pump line to the point of an occlusion alarm going off and text without looking at the buttons. (The starting degree of difficulty value there is HUGE!)
All that and they bolus way better than the 50% I did. More like 80% or 90%, maybe even 99% of the time.
I have a new found respect for that.
(That and I’m considering entering the 2012 Olympics in the pump/stall gymnastics event, unless I have to wear a tight leotard, that is just unthinkable.)
I’ll tell you what is breaking the rules. Stigmatizing the very real and human slip of having a life and forgetting a bolus by using terms like sneaking, lying and cheating. Yes, it is easy to get frustrated but it is cheating to let that frustration morph into to humiliating and guilt tripping our kids. It is not about numbers it is about living with diabetes, long term, independent living.
It was no accident that the same coach at Friends for Life who said there needs to be consequences for behavior was also the same guy who said he never met a kid who was the problem. His experience is that it is always the parents who have the behavior problem.
It is not about numbers it is about how we lead.
What would you respond better to, being put down as a no good lying cheating skunk (sound like fighting words in an old western don’t it?) for the 20, 10 or 1% of the time you make a mistake or praised for the 80, 90 or 99% of the time you get it right? So how are kids any different? If you are not providing positive feedback 80, 90 or 99% of the time then being overbearing 20, 10 or 1% is cheating.
My name is Bennet. I am a diabetes cheater.
Knowing that is the key to not being one again.
Camp requires a form be filled out with her the basal rates. So the night, after the picnic, I wrote them all down. I did the best I could but some of her's are odd, starting on the half hour at times, they didn’t fit the camp's form cleanly. Her basal are all over the place a mixture resulting from trial and error. A product of evolution, they worked.
She was due for some serious adjustments. Her A1C, at her check up, hours before leaving for FFL was on the higher than we would like side. But We didn’t want to mess too much with basal rates at the convention and subsequent week of walking around Disney. At Disney she was running on the low side probably as a result of all the walking and the hotter than the surface of the sun paths we were walking on.
Anyway checking in to camp, they didn’t want to look at the form. They started reading off basals from the pump. OK, why the form but ok.
Until they flat out got it wrong. So wrong it just jumped out - 6:00 am to midnight x. Wait my brain said, (OK me and 'brain' may be mutually exclusive, M&M size clump of nerve endings may be better.) But even the M&M size clump of nerve endings knew there are all those strange afternoon gyrations and the ramp up for the growth hormones that hit right after she goes to sleep. There was a lot of error in the trial and error that got to these numbers and I did a lot of it, error making that is. You have seen my spelling. You gotta know I make a lot of errors.
So I said, "No, that's wrong. Her basals don’t go flat from 6:00 am to midnight and why do you have us fill in this form if your just going to blow it off?"
Well they said they assume that the form is wrong - filled out a few weeks ago - so they don’t use it.
OK so why send it out then? And you are still not reading her pump right.
Oh well they know they were reading it wrong but they “were waiting for the mother” to come bask to ask her about the pump.
That went over really well.
Well maybe not.
So when we picked her up a week later the Endo fellow had a few fine points for me.
The form was wrong.
Did the doctor set up these basals, because a doctor should?
They are very complex.
She is running high and the basals need changing.
Delaney doesn’t know how to adjust her basals and she should.
And her I:C ratio needed a tweak.
Thanks. Love Ya / Mean It.
The form - nice of you to actually look at it. What was off what I wrote or what you wrote? No answer. Speaks for itself.
No the doctor never looks at her basals, occasionally the nurse talks them over with us but I can't recall once in three years when the Endo said boo about them and I have never missed and endo appointment. I set up the basals. We are the primary care givers and that is not only fine with her care team it is their stated goal.
Complex, No kidding? You should shave seen them when we needed hourly changes to average half the incremental change rate of the pump was capable of. Looked like a roller coaster.
Doh! I know they need changing. I told you that when she checked in but seeing how she was running daytime lows at Disney on a 10% reduced basal I didn’t really feel like changing them in the 36 hours between then and camp. Oh I told you that too.
Not for nothing y’all didn’t impress me when we checked in and with an unknown physical activity schedule I voted for running basals on the low side rather than risk a lot of lows on the BG side.
Oh and she is a total queen at making temp changes when asked to, can do most of her self care. She is ahead of where her brother was in both age and time from diagnosis on every type 1 skill. She is fairly good about combo blousing when she needs, asking us if she should.
Her reading needs work. Her penmanship could show a little more care. Her room is a rat’s nest. She needs to help out with the dishes and is due to better learn how the laundry works. She could be a little better at carb counting and I think in the grand scheme of things those take precedence over basal tuning.
But what do I know?
I’m am not the mother.
Delaney loved camp.
August 18, 2008
Safe at School legislation has been introduced into the quagmire we lovingly call Harrisburg. We need this and there is nothing like letting your elected officials know you (an actual registered voter) are paying attention.
It as easy as 123.
1) Identify your elected dude or dudette
2) Send them a letter
3) Send it again in a few months.
1) Go here and enter your zip code. It will give you your state representative and senator.
2) Here is a little draft letter only minor modifications are required (edit out the wise cracks in the brackets) or grow your own.
3) If you hear back send a thank you note. If you don’t send the letter again a little closer to the first Tuesday following the first Monday in November. In fact send another one in mid October any way.
Dear (Insert the name your dude or dudette here, see 1 above.)
Please ad your sponsorship to (Pick one, preferably the house bill for the rep and the senate bill for the senator, House Bill 2002 P.N. 2820 /Senate Bill 509 P.N. 552) Safe at School legislation for Children with diabetes. This legislation is desperately needed to help students with diabetes succeed.
We are the parents of (Your actual number of T1 Kids! I used two, if you have less than two actual type 1 kids please change the plural children to singular child as appropriate in the following sentences. Oh and congratulations on only having one.) children with type 1 diabetes. Type 1 is often reported in the media as the ‘more serious’ form of diabetes due to the higher levels of testing and insulin use it requires.
Type 1 is an autoimmune disease and is in no way the result of diet or exercise. All type 1 children and adults require insulin throughout the day and will continue to need it until a cure is found. Both our children use insulin pumps, manufactured in the Commonwealth, to deliver that insulin instead of 4 to 6 insulin shots a day. (LOOK It is good for the state economy! - Sucks big time for us but hey every silver lining has a cloud....)
(Ad A PERSONAL PARAGRAPH! follow with 'more work is still needed' like sample below)
While significant progress has been made our school still refuses many of the safe at school practices that this bill would insure. For example our children have only been permitted to participate in school trips if a parent accompanies them and despite doctor’s specific recommendations they are not permitted to carry and use their glucose monitoring equipment at all times.
This legislation is desperately needed. It is a safe and appropriate response to a chronic medical condition. I look forward to hearing you have added you sponsorship to the bill and your efforts to getting it passed. I hope to be able to share with the tens of thousands of other Delaware Valley (Or your local walk) type 1 families who support the October (Just before elections.... not that we are watching or anything... but maybe we'll follow up then) Juvenile Diabetes Research Foundation Walk for the Cure that you are working to improve the lives of type 1 kids by keeping them Safe at School. (OH YEAH DID I MENTION - THERE ARE TENS OF THOUSANDS OF REGISTERED VOTERS INVOLVED? right before Election Day? Oh I did mention that? Sorry.... Not!)
It isn’t that we forgot about diabetes. We are in the midst of some over due basal rate corrections for the soon to be 5th grader. It is that the Olympics are just way more fun.
Delaney is into the games and even more into the coverage. Well more precisely the sponsorship of the coverage. She is so tuned into the commercials that we started a game of announcing what the ad is as soon as one starts. She is very good at it. So good it gives one a bit of concern about the effectiveness of advertising on pre-teens. However she isn’t exactly in the market for a Audi, GM, Toyota or Nissan.
Next to commercials, swimming was way the favorite in our house. I’ll try to be a little more attentive to writing this week.