Tag Archives: Type 1 diabetes

Switching Back to the Tslim From the OmniPod and Back Again

After my daughter’s OmniPod insulin pump pod emitted a high pitched continuous alarm during a midterm, she decided to switch back to the Tslim insulin pump. The alarm interrupted everyone taking the exam, and she had to get up and leave the room while the pod still alarmed. She went to the nurse’s office and changed her pod (all by herself!) and had to make up the rest of her midterm exam on another day after school.

Having no tubing was a real perk to the Omnipod, but it is a relief to not have to carry the PDM device everywhere to administer the insulin (or to have to find it when you need to give insulin). It is also a relief to not have to worry about what you will be doing in three days’ time when it’s time to change the infusion set. (Will the time-to-change-the-pod reminder alarm go off during class? During band practice? During the night while sleeping?) Recently we went away for three days and she had to change the pod while traveling on day 2. It would have been nice to have had the option to wait until we got home. We definitely won’t miss the forced pod changes exactly every three days.

The other irksome thing about the OmniPod is that after you change the pod, two hours later the pod alarms to tell you to check your blood sugar. This alarm is incredible patronizing and can occur during the night or at any other inconvenient time. Since my daughter is using the Dexcom G5 CGMS, the alarm seems obsolete as well, since she can just look at the Dexcom anytime, and it will alarm for highs and lows. Of course, it’s just another way diabetes disrupts your life, and in this case it’s a manmade interference. Even with her pump settings on vibrate, the alarm is still disruptive. It makes you think there’s a problem, such as a low insulin cartridge or a low battery, filling you with dread for no good reason. Also the PDM as a glucometer worked more slowly than her previous meter (which was the Verio), so it was another way diabetes steals moments of your life.

The Tslim pump has simplified her day at school as well. On the OmniPod, she would have to remember to take her PDM device out of her book bag and put it in her lunch bag. And if she forgot it, she would have to go back to her locker to get it. Then she would have to take it out of her lunch bag to bolus the insulin to cover for her lunch. Now with the Tslim, she can use the quick bolus without taking the insulin pump out of her belt.

On the other hand, when I check her blood sugar during the night, now I need to find the pump under the covers to correct her blood sugar if it’s high, since the Tslim doesn’t have a remote device. I also risk waking her up while I do this which wasn’t an issue with the OmniPod. And if she needs a small correction bolus, I have to decide whether it’s worth the risk of waking her up during the night.

Now that it is summertime, my daughter has switched back to the OmniPod! Now she doesn’t have to be disconnected from her insulin pump for long periods of time during swim team practices and swim meets, since the Tslim is not waterproof. It is now nice to be able to adjust basal rates from the remote device and to do temp basal rates from the PDM which is also useful for swim practices and meets. At least during the summer, she doesn’t have to worry about the alarms going off during class or exams, and I anticipate she will switch back to the Tslim before school starts.

It just goes to show you that not only do different insulin pumps meet different people’s needs (my other daughter remains on the Animas pump, for example), but also that different pumps can meet one person’s needs at different times. It also reflects that there still isn’t one pump that addresses all the needs.

And having a backup pump in case of pump failure is also a bonus.

 

Disclosure: I have no financial interest in any diabetes company and have received no money or gifts to write this blog post. Please keep in mind that these are just my juicy experiences and opinions, which will vary from someone else’s.

Error message

Error Messages When Testing Blood Sugar Levels

Error messageNothing frustrates me more than getting an error message after applying blood to the test strip in the glucometer. These error messages seem way too frequent. Sometimes the blood stops half way. Sometimes there isn’t enough blood. Sometimes the meter has timed out, or the meter is still on the code screen. Sometimes my younger daughter doesn’t have the dexterity to line up the test strip to the blood drop on her finger. This was a particularly difficult issue when she was a toddler in the “I do it” stage. She would insist on doing it herself, but without the physical ability, a lot of test strips went to waste. The other day she got several error messages in a row and then refused to test again. I don’t blame her. I’ve gotten so many error messages over time, easily in the thousands when you think of all the blood sugar testing we’ve done over the years, and many times we’ve gotten several in a row. Grrr!

Once when we were at the endocrinologist’s office getting prescriptions at our visit, the nurse (or perhaps she was an aide) who had T1D herself asked why we tested so often after I said we tested blood sugar levels 8-10 times a day. I explained we test in the morning, before snack, before lunch, before the bus ride home from school, before sports, sometimes during sports, after sports, before dinner, before bed, if feeling low or high, and during the night. We don’t even test as much as is recommended such as at times after treating a low blood sugar: in that situation, we usually don’t test again 15 minutes later after it’s been treated (unless it’s a severe low blood sugar). Plus we need extra test strips for the nurse’s office, and for all those error messages, of course!

Disclosure: I have no financial interest in any diabetes company and have received no money or gifts to write this blog post. Please keep in mind that these are just my juicy experiences and opinions, and my experiences will vary from someone else’s.

 

The Special Diabetes Program is Renewed for One Year

Good news! The House and Senate approved a 1-year renewal of the Special Diabetes Program at the current level of 300 million dollars: 150 million dollars goes towards Type 1 diabetes medical research through the National Institutes of Health (NIH), and 150 million dollars goes towards Type 2 diabetes prevention and treatment programs for American Indian and Alaska Native populations. The Special Diabetes Program (SDP) was set to expire in September, 2014.

The SDP fully funded the study, PERL: Trial of Allopurinol To Preserve Kidney Function in People with Type 1 Diabetes. This study would not have happened otherwise, with no profit motivation to study an inexpensive drug like allopurinol, as explained at the SDP Progress Report presentation during JDRF government days.

Other SDP breakthroughs include identifying 50 genes associated with Type 1 diabetes (versus 3 known genes associated with Type 1 in 1998), identifying immune therapies that have halted Type 1 diabetes disease progression for over 1 year, artificial pancreas trials now taking place on an outpatient trial basis, and the finding that diabetic retinopathy can be reversed!

Another SDP funded study, the DCCT/EDIC is a 30-year study with 95% of the research subjects still participating. The study has shown that 6.5 years of blood sugar control can decrease kidney disease by 50%. This decrease in kidney disease translates into a projected savings of over 14 billion dollars in 10 years to Medicare from the reduction of end-stage renal disease (ESRD) and a savings of over 126 billion dollars to Medicare in 25 years.

You can read more about the Special Diabetes Program in my previous post: JDRF Government Days.

Note the sequestration caused the Special Diabetes Program to be cut by 5.1%, which resulted in an almost 20 million loss to the program over 2013 and 2014.

This important renewal allows SDP-funded medical research to continue, and ideally a 5-year renewal will be obtained in the future, so that numerous clinical trials will have the chance to deliver on results that will lead to better treatments for Type 1, prevention of Type 1, and ultimately a cure for Type 1 diabetes.

Now you can quickly and easily email your thanks to your senators here and your congress members here.

 

JDRF Government Days

On March 11th, 2014, 190 JDRF advocates from across the country traveled to Capitol Hill in Washington, DC to meet with their legislators to request a 5-year renewal of the Special Diabetes Program (SDP).

The SDP funds medical research to find better treatments and ultimately a cure for Type 1 diabetes. The SDP is set to expire in September 2013, and if it is not renewed 150 million dollars per year towards research to end Type 1 will be lost.

The JDRF Government Days included an inspiring speech by Jeffrey Brewer, President and CEO of JDRF, called “JDRF: Turning Type One into Type None” in which he detailed plans for a pathway to the cure, including discovery research, clinical development, regulatory, reimbursement, and delivery to patients, collectively known as the pipeline.

JDRF has over $530 million currently invested in Type 1 research projects around the world (in 17 countries, and this includes more than 50 human clinical trials). The research focuses on six key areas: the artificial pancreas, treating and reducing complications, beta cell encapsulation, prevention, restoration of beta cell function, and smart insulin.

Richard Insel, MD, JDRF’s Chief Scientific Officer, Judith Fradkin, MD, Director, Division of Diabetes at the National Institutes of Health, and David Wheadon, MD, JDRF’s Executive Vice President of Research and Advocacy also spoke on the progress of the Special Diabetes Program’s research, citing a new treatment to restore vision loss from diabetic macular edema via VEGF inhibition.

While JDRF contributed 106 million dollars to research in 2013 (over 1.8 billion dollars since its founding in 1970), if the SDP is not renewed, JDRF cannot make up the gap. Studies like the TEDDY study (100% SDP supported), TrialNet (67% SDP supported), the Clinical Islet Transplantation Consortium (98% SDP supported), the Beta Cell Biology Consortium (75% SDP supported), the Diabetes Research in Children Network (67% SDP supported), the Diabetic Complications Consortium (59% SDP supported), and the Diabetic Retinopathy Clinical Research Network (26% SDP supported) will lose their funding.

To support JDRF’s efforts to get the SPD renewed, click here to learn more and sign up to be an advocate.

To act now to email your members of congress to urge them to support a renewal of the SPD, click here.

To learn more about the Special Diabetes Program, click here.

To read about the SDP supported research studies and the burden of diabetes on society, read this JDRF brochure for more information.

Now that’s juicy!

 

 

 

Disney Coronado Resort

The 2013 Children With Diabetes Friends For Life Conference in Orlando, Florida

Disney Coronado Resort

The combination of Florida sunshine and palm trees, Mickey Mouse ice cream bars and princesses, and so many smiles and hugs from friends for life makes diabetes feel a lot less bumpy and grumpy.

Because of attending the 2013 Children With Diabetes Friends For Life Conference in Orlando, Florida, plans are underway for us for a new type of insulin pump, a new glucometer to use, and a different infusion set to wear. None of these particular items have ever been suggested or mentioned by our healthcare team, but it takes a village and that village is FFL (pronounced ‘phifel’). We also learned about new products on the horizon to make our life with diabetes easier and to improve diabetes management in the future.

We saw stars we love like Crystal Bowersox, Kendall Simmons, and Jackson the Dog. My older daughter now knows what the ideal blood sugar range is for a dog with diabetes. And she learned that she should wear sunglasses to avoid cataracts. You learn all kinds of things at a CWD conference!

In my last post called the Diabetes Disconnect, I mentioned my wish for inclusion for my children, and seeing my daughter at CWD swim with her two new BFFLs, her not wanting to leave the pool, wishing only to stay by her friends’ side to play and be free, is my lasting memory from CWD. Many thanks to all the amazing people (and animals) who make FFL what it is!

Upcoming CWD conferences can be viewed here.

 

Disney Coronado Resort

 

 

 

 

 

steps

Taking the Steps to a Cure for Type 1: The Special Diabetes Program

The Capitol

The Special Diabetes Program (SDP) legislates 150 million dollars for Type 1 Diabetes research annually. The SPD was renewed in 2012 for one year (previously renewed for 3 years), so it will be up for renewal again this year. Multi-year funding is needed to plan for and continue large-scale trials.

Research studies that the SDP has supported include: Type 1 Diabetes TrialNet, the TEDDY Study, Clinical Islet Transplantation Consortium, the Beta Cell Biology Consortium, the Diabetes Research in Children Network, the Diabetic Complications Consortium, and the Diabetic Retinopathy Clinical Research Network.

To support the renewal of the SDP, you can become a JDRF advocate.

Becoming a JDRF advocate is simple and costs nothing. You can sign up online at JDRF Advocacy. Then you will receive emails with legislative updates and requests to email or call your representatives when needed.

steps

The Five Year Diaversary

This week my 5-year-old daughter will be celebrating her 5th-year diaversary (the day will also mark 9 child-years of Type 1 diabetes in our family).

“Unlimited possibility” is her future, according to Sebastien Sasseville. In his presentation at the Children With Diabetes Focus on Technology conference in Crystal City, Virginia on February 3, 2013, he said people set the bar for themselves and “people need to challenge their perceptions” of what they are able to do.

Seb, who also has a younger brother with Type 1 diabetes, has climbed Mount Everest (carrying his insulin in a thermos), has raced through the Sahara Desert ‘for fun’ to complete the Sahara Race (155 miles in 7 days at 120 degrees) with his test strips and other supplies on his back, and has run 5 ironman triathlons.

I can only imagine how Seb celebrates his diaversary. I don’t think he celebrates with cake. I think he climbs Mt. Kilimanjaro backwards or something. I am open to creative ways to celebrate five years of hard work (nine child-years). Any suggestions will be appreciated.

Seb tweets at @sebinspires, and he is a machine for inspiration, too. Here are some of his mantras:

Persistence is required: it’s not the size of our actions but the frequency and quality of our actions.

Educate, prepare, set goals, experiment.

What is the lesson that diabetes is supposed to teach you?

Our individual weaknesses transform to collective strength.

 

 

The Focus On Technology Children With Diabetes Conference

The Focus On Technology Children With Diabetes Conference was held on February 25-26th, 2012, in West Conshohocken, PA and was the 53rd Children With Diabetes Conference.

The Saturday morning keynote address, CGMS and New Technology, was given by Dr. Henry Anhalt, Chief Medical Officer and Medical Director of the Artificial Pancreas Program for Animas.

Other lectures included Advanced Pumping Concepts by Rick Philbin, Managing Technology in School by Crystal Jackson, Making Sense of Sensor Data by Gary Scheiner, Managing Diabetes Stress and Burnout by Korey Hood, Infusion Sets and Sensors by Natalie Bellini and other topics.

The closing speech was by Tom Karlya, Vice President of the Diabetes Research Foundation, known as the Diabetes Dad, whose mantra is ‘Don’t do nothing!’.

The children had their own faculty that led them through arts and crafts, swimming in the hotel pool, scavenger hunts, exercise, carb counting in the real world and other discussions.

Exhibitors and sponsors included the JDRF, MyCareConnect, TrialNet, Animas, Sanofi-Avenits, Novo Nordisk, OneTouch and Accu-Chek.

Below are some tips and tricks of the trade from the conference:

Did you know that 2 inches of tubing holds about 1 unit of insulin? That you can put a 13 mm angled set in half way for kids and it will still work? That a 9 mm infusion set will stay in better than a 6 mm one? Or that after 48 hours with one infusion set your total daily insulin dose increases and blood glucose levels will increase? Or to aim for a blood sugar level of 150 before exercise? Or that chocolate milk can prevent lows after exercise?

Did you know that Mickey Mouse has a friend named Coco with Type 1 diabetes?

Or that the highest incidence of Type I diabetes is now among children age 5 or younger?

More information on Children With Diabetes can be obtained on their website.

The 54th Children With Diabetes conference will be the Friends for Life Conference in Orlando, Florida, July 3 – 8, 2012 at the Marriott World Center.

As the Diabetes Dad proclaimed at the conference…

“Someday we will go to the Children Without Diabetes conference!”

“It will be at Disney!” chimed in CWD Founder and President Jeff Hitchcock.

 

 

Vials of insulin

New Exhibit on the Discovery of Insulin

Breakthrough – The Dramatic Story of the Discovery of Insulin and the Era of New Hope is an exhibit at the New York Historical Society on display from October 5, 2010 to January 31, 2011.

NewYorkHistoricalSocietyentrance

The exhibit coincides with the publication of a book on the discovery of insulin, Breakthrough, Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle, by Thea Cooper and Arthur Ainsberg.

Breakthrough book cover

Arthur Ainsberg, Phil Southerland, cyclist and co-founder of Team Type 1, and Jonathan Engel will be speaking in conjunction with the exhibit on November 2nd, 2010 at the New York Society for Ethical Culture in a public program.

On display are photos of children before and after receiving insulin treatment.

Three-year-old J.L. weighed 15 lbs. on December 15, 1922.

Two months later, he weighed 29 lbs.

Before and after photos of J.L.

Before Rufus the Bear with diabetes, there was Abby Cady the rag doll. She was named after her maker and sent by the president of Eli Lilly to Dr. Joslin’s patients. The girls called her Lilly, and the doll came with her own syringe case.


Drs. Federick Banting and John Macleod were awarded the Nobel prize on October 25, 1923 for the discovery of insulin.


Nobel Prize Certificate

Frederick Banting’s birthday on November 14th is World Diabetes Day.

The N.Y. Times reported on the exhibit: Rediscovering the First Miracle Drug.

The New York Historical Society gift shop sells a plush pancreas, pancreas pins, and syringe pens.Plush pancreasThe year 2021 will mark the 100th year anniversary of the discovery of insulin.

Of course, insulin is not a cure for diabetes.

In 2021, about 10 years from now, will there be a cure for diabetes?

The Minnesota Partnership for Biotechnology and Medical Genomics has announced a ten year plan to cure Type 1 diabetes.

The Mayo Clinic – University of Minnesota initiative is called:

Decade of Discovery: A Minnesota Partnership to Defeat Diabetes

and is described in the article Diabetes Cure in the Pipeline.


Vials of insulin

I can’t wait to donate our insulin vials to the diabetes historical exhibit in 2022!