Tea time…

Dr. KiefferThere’s a guy, Dr. Kieffer,  at UBC who has headed up a number of research projects related to Type 1 Diabetes. This time around he is driving the bus on the culmination of a lot of pointy head work from around the world. He was part of the Edmonton protocol and I met him a few years back on a tour of his facility at UBC. At that time he was showing off mice who’d been living for a year without a pancreas or insulin injections. Yeah, I know, but wait, it gets better.

His current project involves the use of live insulin-producing cells contained in an implantable device dubbed a ‘tea bag’.  It is contained in a semi-permeable membrane (here’s where the pointy head stuff tea bag copycomes in) that allows circulating fluid to bring nutrients inside to the cells and take insulin produced by the cells back out into the blood stream.

The cells are from the patients own stem cells (magic) which is good on so many levels, like no need for nasty broad spectrum immune suppressant drugs. And the tea bag blocks the big autoimmune antibodies that killed the insulin producing beta cells in the pancreas in the first place. Serious magic-happens-here stuff.

AND (yes, there is more) in order to proceed to human testing it is necessary to prove this wee bio-device is safe should a rupture occur. So if these little cells find themselves on the outside of the membrane but still inside the body (hold on, more ‘magic happens here’ stuff) these cells either self-destruct or they have a marker for targeting by hunter cell (I don’t remember which Clarence 1 - Version 2because my brain froze up back at ‘tea bag’)…Either way seriously cool.

This is important on so many levels. Not only does it tick all the boxes in terms of Type 1 diabetes, the marked cell coding has huge treatment implications for cancer, tuberculosis, MS and the rest of the bio-medical bad news alphabet.

You are now free to get some fresh air and perform the happy dance.

fred and ginger

twist to forget...

Watch this space

I’ve neglected this blog for far too long.  It may give the impression that perhaps my daughter’s Type 1 has been cured or she is no longer a part of the family or it doesn’t affect us that much anymore.

HA HA HA

No, I just stopped for a number of other reasons that were completely unrelated to this particular topic but pretty much drained all ambition from my soul at the time. How badly drained, I hear you ask. Well, it’s taken me a few years to get back on the horse and have the energy to devote to this.

So, I don’t know how many posts or how often but our family still has diabetes, we’d still rather have a puppy and there have been a lot of things happening on the whole pancreatic front that deserve attention.

See you soon.

 

2 more sweet kids, the 2008 Youth Ambassadors: Megan and Tory

Megan Briere and Tory Bernays, the Vancouver Island 2008 JDRF Youth Ambassadors, are comfortable talking about their experiences of diabetes. Tory, diagnosed when he was 2, doesn’t remember a life without needles. “I always forget my memories”, he says, shrugging off those 6 out of his 8 years life spent waking up in the middle of the night for a finger poke and sometimes a snack.

Talking to the parents of these remarkable young people, it becomes obvious having a child who has Type 1 diabetes actually means being a family with Type 1 diabetes. Everyone from siblings to grandparents, aunts & uncles are educated about blood sugars, insulin, injections and finger pokes.

When 8 1/2 year old Megan has friends over, her mom, Sandra, makes sure they know the signs of low blood sugar.  They know if Megan goes pale, starts to shake, starts crying for no reason or become unresponsive to direct questions, it’s time to get mom because Megan needs sugar. Teachers, other school personnel and after school care givers are all drafted into the support network but even then, as Sandra says, “you can’t relax, you’re always thinking about it…”

Enlisting family and friends means more help fighting outdated ideas and myths about Type 1 diabetes. “Some people just don’t get it”, Sandra says. Tory’s dad, Dave, gets frustrated at being asked if Tory ate too much sugar – “like we were giving ‘Oh Henry’ bars to a 2 year old.”

What they can never convey is how the world turned over the moment they heard the diagnosis for their child: the flood of emotions, all the questions, the doubts, the mountain of information that had to be climbed and a cold certainty life will never be the same.

It was on a holiday, Sandra remembers, that she suspected her 7 year old daughter had a bladder infection. She didn’t really think much of the lack of appetite until Megan began vomiting and suddenly dropped several pounds.  Sandra knew “something was just not right.”

The hospital at 100 Mile House put Megan on an emergency flight to Victoria where a helicopter completed the desperate run to Victoria General Hospital.

Liz Bernays knew there was something wrong with Tory when the active 2 year old became increasingly lethargic and not interested in eating. She took him to the hospital and was sent home with a popsicle. She returned a few hours later frantic because Tory was now unconsciousness and unresponsive.

The Brieres and the Bernays, would gladly stick the needles into their own arms instead of watching their child go through the pain several times a day. Insulin may be what keeps their child alive but it isn’t a cure. The problem is research for the cure costs money – a lot of money. Sandra talks about penny drives and jean days at work, Liz of seeking contributions from friends and family while both Rick and Dave do whatever they can at their work sites to generate funds for the Juvenile Diabetes Research Foundation. If it sounds like something from the homefront during WWII, that’s not far wrong; as far as these families are concerned it is the fight of their lives.

The bottom line is that diabetes won’t keep Megan and Tory from playing soccer or lacrosse, from finding their dreams of being an artist or playing for the Shamrocks but it certainly isn’t part of the future they’re planning.


Oatmeal?

Continuing in the Island Parent JDRF Youth Ambassador profiles, here’s 2009. I’ve added some images because, well, it’s my blog and I can…besides, it makes it easier to plow through all the text…

Tomas Kalyniuk, 8, wants to be the best goalie in the world; Jessica Schmidt, 8, plans on being a singer, dancer and, if she’s lucky, a clown; Jacob Thomas, 10, is torn between being a martial arts specialist or a massage therapist. At first glance, all they have in common is their shared role as Vancouver Island’s Telus 2009 JDRF Youth Ambassadors.

 The other thing they have in common is lack of surprise about people with Type 1 Diabetes climbing Mount Everest, playing in the NHL or winning Academy Awards. As Tomas says, “Well, yeah, of course they can do whatever stuff they want: they just have to take their insulin and test kits.”

 Carmen Welta, Tomas’s mother, laughs when she talks about how she tried promoting Bobby Clark to her son as a role model. Bobby was diagnosed when he was 13 but went on to fight attitudes of the day by playing in the NHL on the Philadelphia Flyers. Diabetes never stopped him from being the most famous of the broad street bullies and a Stanley Cup champion.

 Tomas knows all about Bobby Clark constantly sipping sugar laced cola on the bench and “peeing on a stick to figure out what his blood sugars were, like, maybe hours ago.” All it means to him, however, is technology has made life for anyone with Type 1 a lot easier.  Bobby did what he had to do and Tomas fully expects to do the same.

 Jessica learned about Type 1 Diabetes in kindergarten when a nurse educator talked to the class. The next year a well informed teacher picked up on her student’s sudden frequent trips to the bathroom and excessive thirst; she knew this wasn’t an attempt to disrupt classroom discipline but the warning signs of a chronic illness. She phoned Jenny suggesting a trip to the doctor for Jessica might be a good idea.

 “I didn’t know there was a difference between this and Type 2…I thought she could take pills for this. Jessica knew all about it:  ‘no mom,’ she told me, ‘I’ll need to take needles every day.’”

 Even today in this country children die because these early warning signs are ignored by the adults in a position to help: education and understanding go a long way in saving lives as well as improving the quality of life for Canadians with Type 1 diabetes.

 Susan Thomas became concerned when her son, Jacob,  spent play dates rummaging through friends’ refrigerators and suddenly having night time incontinence. When tests for another problem revealed high blood sugars one day but normal the next her own doctor said the boy was too fit, too healthy to be diabetic. Weeks later, giving in to Susan’s pressure the doctor did another blood test. The next day the locum called Susan saying she had to get Jacob to the hospital as soon as possible. “There’s a bed in the ICU waiting for him.’”

 It’s always a shotgun start for this new life as a family with Type 1. Carmen spent the first weekend in hospital with Tomas, waiting to talk to the dietician, wondering the whole time if her son could have a cheeseburger ever again. Tomas snickers at how his mother was convinced he’d spend the rest of his life on a diet of oatmeal and milk.

 Jacob and Tomas wear insulin pumps and Jessica is happy with the control from new long acting types of insulin. They know they are living a better life than was possible even 10 years ago and that Canada is the world leader in research and technology for Type 1 Diabetes.

 “We want a cure”, Carmen points out, “but in the meantime technology is making life better.”

 Research is their one hope for a future without the certainty of neuropathy, amputations, kidney failure, heart disease, blindness. Imagine being a 10 year old child who knows not only what these words mean but they are a certainty in your future.

Now imagine you can make a difference.

Not your imagination, they are getting younger…

This is the 2011 June Island Parent magazine profile of the JDRF youth Ambassadors I wrote.  Over the next few weeks I’ll put up profiles from previous years.

The first years of introducing an infant to the world have special challenges. In those precious first few months a new mother finds herself second guessing every cough or sniffle: is it diaper rash or an allergic reaction?

There are the obvious moments, when the baby spikes a fever or projectile vomits across the room. There is no special knowledge needed at that point to reach for the car keys and head to the hospital. But what if the baby is breast feeding more frequently, always hungry and soaking through more diapers than maybe she did the week before. Is this just another growth spurt or is it just the sleep deprivation talking, dear. You’ll feel better after you have a nap.

A week before Christmas, 2010, 11 month old Tula Stanley, who never napped, suddenly wanted to lie down in the middle of the day.  When she woke 3 hours later she didn’t want to eat and began to vomit. Wondering if it might just be a bug Samantha waited till the next morning. Tula was still sick the next morning, listless and not responding in her usual active way. They went immediately to their doctor.

On hearing Samantha’s brother Travis was diagnosed as a Type 1 diabetic at 6 years of age, the doctor immediately sent them on to the hospital. It took 3 hours for the medical team to find a way to place an intravenous line in the 11 month old baby: shaving her head and finally going in surgically to reach a vein in her upper thigh.

For the first 4 days it was necessary to weigh Tula before and after breast feeding in order to calculate the amount of insulin she would require. From that the staff worked out the carbohydrates Tula was averaging.

Nearly 6 months later, Tula is thriving: active and awake every two hours through the night to nurse. During the day, well, she has returned to her no-nap schedule and is charging headlong, halfway to her 2nd birthday. The other day Samantha saw her daughter standing in front of a mirror, trying to look at her insulin pump and where the needle goes under the skin of her little rump.

A year and a half ago Kristina’s 17 month old son was getting ready for all the changes a 2 year old faces. Then he began drinking large amounts of water and nursing almost constantly; Kristina felt herself being completely drained.

Initially the doctor assured her it was just a behavioral phase. After another 10 days of nursing and repeatedly changing Amos’s diaper through the night, Kristina insisted on Amos being tested.

By the time Kristina got home there were two messages from the doctor and one from the lab insisting Amos go directly to the hospital.

These tiny patients mean doses of insulin too minute to measure with a syringe.  Amos was 17 months old when he started on an insulin pump.  He still complains about finger pokes and needle changes but at 3 he is an old hand to it all.

There is hope for these young ones, however. They are living at a time of tremendous leaps in Type 1 Diabetes research: what causes it, what can be done to ‘turn off the switch’ and how to reverse the damage it causes.

Samantha sees a huge need for education so people can understand her baby did not bring this upon herself with a diet of candy and video games.

Kristina wants to tell families just starting to live with Type 1 that it does get better.

Samantha and Tula
Amos

A family with Diabetes – we'd rather have a puppy