It's Walk Time!

The JDRF Walk to Cure Diabetes events are now underway across Australia!

Many of my friends and fellow T1D families have taken part in events in their local areas - it has been great to hear about how much fun they have all had and the new people they have met in their local T1D communities.

This week the 2 kids and I will walk in the Sydney Twilight JDRF Walk to Cure Diabetes on Thursday 27 October.

We will also be volunteering in our roles as Peer Support Volunteer (me) and Youth Advocate (the kids) at the Parramatta walk on 30 October and possibly the Newcastle walk on 14 November.

We are all really looking forward to this year's Walk, and if you're there at the Sydney walk - look out for us! We'll be fairly visible in PURPLE t-shirts with our "2 SWEET" team logo!

Today I came across this video made by the JDRF. It features Nick Jonas who is the US National Chairman for the Walk to Cure Diabetes.

Please take a few minutes to watch this video and find out how YOU can help us to find a CURE for Type 1 Diabetes in your local area.



You can start with making a DONATION to either Isabella or Tim via their own Walk to Cure Diabetes donation pages.

And also, if you are attending a Walk to Cure Diabetes anywhere in Australia keep an eye out for members of the Parents of Aussie Kids with Type 1 Diabetes Support Network - who may be wearing this sticker:

Hope to see you there!

Teenagers + Type 1 = Trouble!

Yesterday was a day I would rather forget.

Before I go into what happened I will first provide a quote about observations made of people during episodes of hypoglycaemia not long after insulin was discovered. This quote is from:

Hypoglycaemia: Implications and Suggestions for Research. Christensen, L, Ph.D (1981), Orthomolecular Psychiatry. Vol. 10, No. 2 (1981), pp. 77-92. Published online by Orthomolecular.org.

"Kepler and Moersch (1937)* have described the symptoms of hypoglycemia as follows: "In attacks of any severity the attitude and general behavior of the patient are always disturbed. Any one of the following mental states, to mention only the more common ones, may dominate the clinical picture: apathy, irritability, restlessness, fatigue, anxiety, incorrigibility, negativism, automatic behavior, somnambulism, confusion, excitement, disorientation, 'drunken behavior', fugue states, unconscious attacks, delirium, mania, stupor, coma. The motor activity may be decreased or increased. Speech is distorted: there may be garrulity, dyparthria or even aphasia. Emotional instability ranges from all forms of anxiousness to querulousness and violence. The character of the thinking becomes confused and sluggish: the patient may be del- irious. The trend of thought may remain within reasonable bounds, but obsessions, compulsions and even hallucinations or delusions frequently may be present. The mental group becomes distorted, the patient may become disoriented as to time, place and persons. There is loss of memory for events and the patient does not remember the attack. The mental symptoms may be associated with neurologic disorders of varying type, as motor retardation or convulsive attacks of tonic or clonic type" (p. 96-97). As can be seen from this description, the symptoms of hypoglycemia are numerous, difficult to classify, and readily misdiagnosed as some emotional or neurological disorder."

* KEPLER, E.J. and MOERSCH, F.P.: The Psychiatric Manifestations of Hypoglycemia. Am. J. Psychiatry 64,89- 110,1937. 

Within a week of my then 13yo son's diagnosis with Type 1 Diabetes he had a severe violent outburst during a hypoglycaemic episode which was followed by a seizure. My daughter is a few years younger so I was yet to deal with the combination of fluctuating hormones and fluctuating blood glucose levels although I was aware that this could occur.

This episode was terrifying for all of us and of course was discussed in depth with our Diabetes team at the hospital.

My son went on an insulin pump very soon thereafter, which, thankfully, significantly reduced the occurrence and severity of hypoglycaemic episodes, but they did not disappear altogether. Over the course of this first year since his diagnosis he has had at least four additional violent outbursts that have been the direct result of hypoglycaemia and one episode which was the result of hyperglycaemia. For this reason my son attempts to maintain very tight control of his Blood Glucose Levels. Fortunately, I have been able to control these situations to a certain extent to ensure that no one suffers any physical harm.

Unfortunately, when BGL's are kept relatively low (between 4-5 mmol/L, 72-90 mg/dl) consistently there is the risk of becoming hypoglycaemia unaware.

This was what happened yesterday.

And this time, I wasn't able to put myself between my son and harm's way - because there was a glass panelled door between us! He punched through one of the glass panels resulting in some particularly nasty lacerations to his arm requiring hospital treatment.

In these situations the first priority is to remove the risk of any further danger. My son does not handle the sight of blood well at all and has a history of fainting during blood tests etc (yes, that's a lot of fun for a kid with T1D). He has no memory of putting his arm through the glass panel, consistent with Kepler and Moersch's description above; "There is loss of memory for events and the patient does not remember the attack.", so the shock of seeing the cuts on his arm was overwhelming for him. Once I had him in a safe position, had bandaged up his arm to stem the bleeding and his nausea had passed I then made him eat some fast acting sugar - upon the assumption that this incident was the result of hypoglycaemia - while I ran to his father's house (a few doors away) to get him to look after our daughter.

Sure enough, when I was finally able to test his BGL in the car on the way to the hospital it was still only 3.7 mmol/L (66 mg/dl) - which indicates that when this incident occurred he was probably in the range of 2-3 mmol/L (36-53 mg/dl). He had not felt it at all - it hit hard and fast.

So, we spent several hours in the Paediatric Emergency Room while his BGL's were monitored and they tended to his wounds.

Thankfully no serious damage was done and he should heal up well. However, for now, we have to try to get him to run his BGL's a little higher so that he can begin to recognise signs of hypoglycaemia before they get to the point of no return.

Just another aspect of this disease that the wider community has absolutely no idea about.

Although, thankfully, not an everyday occurrence!







NB:        The article quoted above, together with other articles about this subject, can be found on the Type 1 Diabetes Research Resources page of this Blog.

Everything is a Miracle...

I have just come home after a long power-walk with a good friend. Took Heidi the Wonder Dog with us this time, I think perhaps she might forgive me in about 3 days after she wakes up, poor thing is exhausted!

Today is one of those picture perfect days, clear sky, gentle breeze just enough to make the heat of the sun make you feel awake and alive.

We are lucky to live in a beautiful part of the world, and when we go for our walks we try to appreciate the beauty around us rather than just powering along without giving even a passing thought to our surroundings.

This is where we walked today.

While we were walking I lost count of how many people we passed, so absorbed by the "exercise" aspect of what they were doing, with iPod speakers plugged into their ears, and focussed only on what was directly in front of them, that they were not only blocking out the stunning landscape but also the sound of the ocean, the birds and life going on around them.

These people would have had NO idea whatsoever that there were whales frolicking just off the coast!

So, it got me thinking.

We spend so much time focussed on our immediate environment, on what's happening with our kids, with school, extra curricular activities, will we be late here, will we be able to afford this - so much STUFF - and throw in managing a chronic medical condition - and we forget to stop and smell the roses.

Perhaps this quote from Albert Einstein sums it up more eloquently:

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
- Albert Einstein

You know, he's absolutely right.

No matter what crap we have to deal with, every single morning that we wake up is a miracle.

I think all of us need to remind ourselves of that every once in a while.

A New Look!

I've been messing around with the Blog a bit today - just trying to make it easier to read and more user friendly!

I hope you like it!

So, October is a busy month in the Type 1 world.

Manly families across Australia, and across the world, are getting ready for, or have already participated in the Walk to Cure Diabetes!

The Kids and I are doing the Twilight Walk on the foreshore of Sydney Harbour on Thursday 27 October - and this year we have a team of family and friends who all share our wish for a CURE for Type 1 Diabetes.

Our team this year is called:

Among our team members are my sister, who was diagnosed with Type 1 Diabetes at 38 years of age, and my friend Alexandra who is visiting from Canada. Alex's mother Eileen also has Type 1 Diabetes and is a true inspiration to all Type 1's around the world! Eileen fought the Canadian Government to allow Type 1 Diabetics to fly aircraft - SOLO! As a result of Eileen's amazing victory, not only can Canadian Type 1's pilot aircraft on their own - Canada is the only country in which Type 1's can fly commercial aircraft!

While we know that money is tight for just about every single one of us please remember that the longer it takes to find a CURE for Type 1 Diabetes the more of our nation's financial resources are having to be diverted to the Health System to cover the costs associated with the long-term complications of this disease.

Please click on the links at the right of the Blog to MAKE A DONATION to either Isabella or Tim!

Every little bit counts!

Heidi the Wonder Dog!

Last night started out like any other school night.

The Kids and I had dinner as usual, both did their BGL's and bolused for the carbs as usual (although "usual" for my teenage son involves about 10 minutes of nagging and then the house being turned upside down while he looks for his meter and then gives me 16 different excuses for why he hasn't done a SINGLE BGL test since the one I did on him when I woke him at 7am to get ready for school!).

After dinner our 19 month old Spoodle, Heidi, was laying across my daughter's legs. Heidi was grumpy, she had been unwell during the day (eating the contents of the cat's litter box probably didn't help!) - and just wanted to be left alone.

Normally Heidi will sit with me in the evenings because she knows that I just let her be, it's her "chill-out" time before she goes to bed. But last night, she chose to lay across my daughter's legs.

I went to give her a pet, just to let her know that I knew she wasn't feeling great. If the kids try to pet her when she's in "chill-out" mode she will growl at them, but she knows the difference between my hand and the kids - and never does it with me.

Last night she not only growled at me, she also snapped!

Hmmmmm - something not right here.

So, think back over the last 15 minutes or so - she has stuck to my daughter like glue.

Decide to tell my daughter to check her BGL - lots of arguing, "but I just checked half an hour ago! We just had dinner, and I had a snack afterwards, I tested, and bolused and I'm not going to test again! MY FINGERS ARE SORE!"

Heidi gets more grumpy and now has started barking.

Tell my daughter she has to test - eventually, reluctantly, she gives in.

2.9 mmol/L (52.2 mg/dl)!

Heidi the Wonder Dog KNEW that she was low, even though my daughter didn't - and hadn't even felt it!

Not only was she low, but she had 3.5 units of active insulin that had only gone through the pump 30 minutes ago - so she was likely to drop even further!

Good catch Heidi!

These photos were taken about a year ago - Heidi won't leave my daughter's side until 

she recovers from a particularly nasty hypo!

Heidi has not been trained to detect hypo's.

She came to live with us the day after my daughter was discharged from hospital after her diagnosis. I had made arrangements to adopt her several weeks beforehand. She was coming from a breeder that lived some 7 hours drive away from us, so my sister had agreed to pick her up (at that time she lived only 2 hours away from the breeder) and bring her down to us as a surprise for the kids.

Heidi was only 6 weeks old when she joined our family - and right from the start she would hang around my daughter whenever she was low and would not leave her side until her BGL's came back up again. I guess it's the Cocker-Spaniel in her - since they have an exceptional sense of smell.

This was the first time, however, that Heidi has been aggressive and so "vocal" about either of the kids being low - I put that down to her being a bit off colour herself for most of the day and just not having the patience or the energy for us mere humans to pick up her more subtle signs that something is not right.

Heidi, I don't know what we'd do without you!

Help us to try to get Dulux to support Type 1 Diabetes Research!

Today a member of one of the Diabetes Online Support Networks posted a picture of her T1D daughter with a huge tin of Jelly Beans she had received when buying some Dulux paint for her home this weekend. Naturally for a T1D family those Jelly Beans would be put to good use!

After checking out that photo I decided to head to the Dulux Australia Facebook page to let them know how their Jelly Beans are used in Type 1 families. There were a number of posts on that page from people saying that the Jelly Beans are a treat for their kids - or even that they "give them an energy boost" so they can get their painting done, so I figured they should know that for kids with T1D they can be a life-saver!

Here's a screen-shot of the Dulux page which shows my post - together with a number of "Likes".

Since the text is a little hard to read in the above image below is my comment on the Dulux FB page:

"Did you know that Jelly Beans are one of the most effective and convenient treatments for episodes of life-threatening hypoglycaemia in kids with Type 1 Diabetes (formerly know as Juvenile Diabetes)? Type 1 Diabetes, which is an autoimmune disease and is NOT related to obesity, poor diet or poor lifestyle choices, accounts for about 10% of all cases of "diabetes" in the world. Wondering whether Dulux has given any thought to supporting the Juvenile Diabetes Research Foundation - since for many families with kids with T1D the Dulux Jelly Bean promotion doesn't just mean a bit of fun for the kids - it can mean a 6 month supply of hypoglycaemia treatment!"

If we can get enough "Likes" on this comment maybe Dulux will come to the party and support the JDRF or Type 1 Diabetes research generally!

Now wouldn't that be great!

Early morning thoughts...

Well, it's a little before 5am and I'm just killing time waiting to check on one of the kids. His BGL dropped a little low, so reduced basal rates on his pump and woke him up to make him have a drink of chocolate milk.

Waking a teenage boy in the wee hours of the morning and forcing him to eat or drink is no fun at all! Teenage boys like their sleep.

So, since I was up I went and checked on the other one - she'd had another fairly nasty hypo just before bedtime and has been running a little lower than I'd like overnight - but of course now she's having a rebound high - so I'll have to check on her again too in a little while to make sure she's on her way down.

Just another night.

Yesterday I met the mum of a recently diagnosed older teenager. Diagnosis with this disease is always difficult, no matter the age, however, meeting with this Mum yesterday really proved to me that for a parent this diagnosis is not any easier to handle just because your child is pretty much all grown up!

Diagnosis as an older teenager brings its own problems. These are kids who probably already have their driver's license, who are about to head out into the world on their own, who probably want to travel and experience all that life has to offer. It hit me that diagnosis at this age is nothing short of cruel - for the teenager and for their parents.

Speaking of teenagers and parents - this parent has to go and make sure that her teenager's BGL has returned to a safe level so we can get back to sleep.