Another walk - doing my bit for JDRF!

Well, I was far too exhausted to write a post yesterday, so time to get onto it now.

Yesterday Issie and I went to the JDRF Walk at Parramatta Park in Western Sydney. This is the biggest Walk in NSW.

We weren't walking for Team 2 SWEET at this event, instead we were there to help promote the JDRF Peer Support Program.

A few weeks ago I was asked if I would like to be one of the "pin-up girls" for the Peer Support program, along with one of the Sydney office co-ordinators, Vivienne Todd. Of course I accepted! Vivienne and I were then photographed for the new Peer Support flyers:

Vivienne and I were both there at the Parramatta walk yesterday, talking to parents about the Peer Support Program, trying to drum up volunteers and also letting people know that we're there to help!

Issie started out helping with the kids table where we had kids write their hopes or what a cure would mean to them on a Walk Boot which was then pinned to the Wall of Hope:

Issie's main job, however, was to babysit Vivienne's 5 year old T1D daughter and her friend and keep them occupied while Vivienne and I worked the crowd! Her first babysitting gig - which she took VERY seriously, and did a great job of looking out for hypos and getting her little charge straight to her mother if she suspected she may be a little low. She had a lot of fun with the girls and is now begging me to let her babysit other kids - she has a couple of years before she can do that though.

During the course of the day we had a lot of parents asking JDRF staff whether there was an online support service they could access because something like that suited their lifestyle and would allow them to access support when they needed it.

I am absolutely THRILLED to announce that the JDRF have been recommending the Parents of Aussie Kids with Type 1 Diabetes Support Network, a network I founded shortly after Issie's diagnosis, to families and I was called over to chat to various parents throughout the day about that support network and the kind of support offered there. This is a HUGE accomplishment for the Support Network because the JDRF now recognises the PAKWT1DSN as a safe and secure environment that has proven to be an amazing source of support and encouragement for families right across Australia. 

So, despite the pouring rain at one point, and the stifling heat and burning sun at another, the JDRF Walk to Cure Diabetes at Parramatta Park was a HUGE success!

Can't wait for next year!

Halloween is almost here!

Halloween has well and truly infiltrated the typical Aussie neighbourhood! Yes, there are still those that complain about it and say, "I don't believe in it - it's an American thing!", but, in actual fact, Hallowe'en originated in Europe with the Celtic festival of (Samhain pronounced sow-en). Samhain was considered a magical holiday, and there are many stories about what the Celtics practiced and believed during this festival. Some say the spirits that were unleashed were those that had died in that year, and offerings of food and drink were left to aid the spirits, or to ward them away. Other versions say the Celts dressed up in outlandish costumes and roamed the neighborhoods making noise to scare the spirits away.

In the First century A.D., the Roman Empire had taken over most of the Celtic lands. The Romans had two festivals also celebrated at the same time of year as Samhain. One was Feralia, also in late October, was the Roman day honouring the dead. The second festival was for Pomona, the Roman goddess of trees and fruit. Pomona's symbol was the apple. These two festivals were combined with Samhain in the Celtic lands during the four hundred years the Roman Empire ruled over the Celts. (from halloween-history.org)


With that history lesson out of the way - check out these links for some great ideas for getting through Halloween with kids with T1D!

My son was diagnosed less than a week before Halloween last year and was still on injections - so I was just a tiny bit stressed out about him roaming the streets and then dealing with the joys of BGL's in the mid to high 20's for a few hours that night!

This year, they're both on pumps so we should manage just fine! It's just a shame that Halloween is so close to the end of our school year here in Australia - otherwise I'd be putting all those high sugar treats into a big jar and taking them to the school nurse's office to be used as Hypo Treatments!

Wherever you are, and whatever your beliefs, I hope you have a magical night!

Walk Day for Team 2 Sweet!

Yesterday was JDRF Walk to Cure Diabetes day for our family, and, by some miracle the rain held off once again!

The event we attended was the Sydney Harbour Twilight walk - and, as you can imagine, the spectacular scenery made for a very pleasant evening stroll and some lovely photos!

This year we were joined by family members and friends for the first time - everyone had a great time so we are hoping for Team 2 SWEET to be considerably larger next year!

This being our 2nd year doing the Walk we knew lots of people including other families who are part of our online support network as well as our lovely friends at the JDRF in Sydney.

We were also joined by a journalism student from UTS who contacted me earlier in the week to ask if we would be interested in participating in a video assignment about the JDRF Walk to Cure Diabetes. 

The 2 Kids, along with other T1D kids, did their bit for the JDRF by providing some video footage to be used in JDRF marketing. Will be interesting to see if their contribution survives the cutting room - particularly given that BOTH kids had their faces painted with butterflies - yes, my 14 year old son included!

A special thanks to our lovely friend from Canada, Alex, who joined us for the Walk this year! Alex not only walked to support the 2 Kids, but also to support her mother who was diagnosed with Type 1 Diabetes more than 20 years ago.

All in all - a lovely evening!

1.11.11 is T1Day

This year JDRF International will launch the first T1Day - very aptly, on 1.11.11 (1 November 2011)!

T1Day is all about raising awareness about Type 1 Diabetes and will kick off the month of November, a significant month in the Diabetes world with International Diabetes Day on 14 November.

Click on the image above to learn more about T1Day and how you can get involved.

Adelaide University Research Breakthrough - video from Sunrise (Channel 7) 25 October 2011

One year ago today...

with the diagnosis of my then 13 year old son, we began life as a "Double D" family.

Every parent of a Type 1 child can tell you exactly the date of their child's diagnosis, it is as if it is seared into their hearts. Understandable really, it's the date your child's life, and the lives of the rest of your family, changed and you began to live a different kind of "normal".

Tim's diagnosis wasn't as dramatic as my daughters', seven months earlier.

Not long after Issie's diagnosis we received a letter asking if any of our immediate family members would be interested in participating in the INIT II Nasal Spray Clinical Trial. Given that Tim was 13 we left the decision entirely to him. His initial response was, "Well, I would rather know if I'm going to develop diabetes and do what I can to stop it." So, he agreed to have the first round of blood tests to determine whether or not he had the antibodies associated with Type 1 Diabetes.

We contacted the Diabetes Educator at the hospital and let her know that Tim would have the antibody test and arranged to have those first tests done on 28 July 2010.

Tim at the State Cross Country Championships a few days before the INIT II Antibody Test.

Tim doesn't handle blood tests very well. Issie and I were there with him and Issie found it very amusing that her big brother is so sensitive to blood and had to lay down on the bed. Issie doesn't have a problem with blood, but she has a severe needle phobia - yep, someone up there was playing a BIG joke when they decided that my two kids should have T1D!

So, the blood tests went fine, and after about six weeks had passed with no word about the results we all relaxed and assumed that Tim did not have the antibodies.

Tim was sick for most of the month of August and going into September with tonsillitis. He was on antibiotics for weeks and just didn't seem to be getting any better. On 26 August, while we were at the pharmacy picking up yet another prescription for antibiotics, Tim weighed himself on the computerised BMI scales at the pharmacy. His weight on that date was 67kg.

He's an active kid, at that point he was coming to the end of the soccer season, his team was set to win the championship for the second year in a row - which they did.

After the regular soccer season finished Tim and most of his team-mates started the Summer indoor soccer season. Even though Tim had been quite sick he still insisted on playing and seemed to be okay.

The kids were getting ready to start at a new school after the October school holidays. There was a lot to organise, meetings with staff and with the school nurses etc about how to look after Issie. I spent hours and hours putting together her Management Plan for school - trying to cover every aspect of her care and every situation that may arise at her new school. Thankfully, for the first time in a number of years, they would both be going to the same school again.

On Monday 11 October, the day before the start of the new school term I received a phone call from one of the Endocrinologists at the hospital. There had been some kind of administrative oversight and they had just come across the results of Tim's antibody tests. He had tested positive to high levels of the antibodies associated with Type 1 Diabetes and needed to come to the hospital as soon as possible to have further blood tests.

Tim had already missed a lot of school in the previous school term at his old school and I did not want him to be taking days off so soon after starting at a new school, quite aside from the fact that the end of year exams were due to take place in week 3 so I wanted to give him the best chance possible to settle in to his new school environment before sitting those exams.

Eventually, with much juggling and negotiating, the Diabetes Educator and myself were able to agree on a date for Tim to come in and have the Oral Glucose Tolerance Test at the hospital. It would be a day off school on the Monday and then another on the Thursday for the next lot of tests.

The date of the Oral Glucose Tolerance Test was Monday 25 October 2010.

The weekend before the OGTT Tim had to "carb-load" from the Friday to the Sunday and then fast from dinnertime on Sunday evening until the Monday morning so that his "fasting BGL" could be taken when we arrived at the hospital.

That Friday evening Tim had an indoor soccer game. He was not himself during that day and had been feeling a bit "off". I checked his BGL before he started the game - just to make sure that nothing was going on in that department! As had been the case with all random BGL tests I had done since finding out that he had tested positive to the antibodies, Tim's BGL was within the normal range.

During that game Tim was very sluggish. He was missing shots that he would usually nail and just did not appear to have the energy to go after the ball. A parent of another team-mate, who is a nurse, said to me, "I know this may sound a bit strange coming from a parent, but where has Tim's bum gone?"

I had noticed that he had lost a little weight, but it wasn't until then that it hit me just how thin he had become. He was a very solid little kid, but from about age 6 upwards he's always been very slim and athletic - but now he was skinny! Not only that, but during the game other parents kept asking me if Tim was okay because his face was "grey" and he appeared to be a bit out-of-it.

Tim refused to come off the court and played the entire game.

When we got back to the car I tested his BGL - it was 6.1 - perfectly normal.

Over the course of the weekend he seemed to pick up again and was fine, eating normally and enjoying the fact that he HAD to eat lots of carbs.

We arrived at the hospital at about 8:45am on Monday 25 October and the Diabetes Educator got Tim set up for his fasting bloods - and of course had to do all the usual "obs" - including height and weight. Tim's weight had dropped to 57kg. He had lost 10kg between 26 August and 25 October!

Cannula in - ready for fasting bloods - 25 October 2010

While the DE was taking Tim's fasting bloods Tim said to her, "You have to promise me two things if or when I get diagnosed with Type 1, you have to promise to give me a Rufus Bear, and you have to order a pump for me."

The DE laughed, but made those promises.

I was in desperate need for a coffee by this time and told the DE that when she got back from checking Tim's fasting BGL from the bloods she had just taken I was going to run downstairs and grab a coffee. Her response was, "that's fine, I'll be back in 2 minutes."

The DE was gone for 20 minutes.

When she returned she was not alone. The Endocrinologist who had looked after Issie during her pump start was with her. In one hand the DE was holding a tray with 4 BGL testers, and in the other, behind her back, she was holding a JDRF KidSak.

Rufus

The DE said to us, "I'm sorry I have been gone so long, but I have been running around finding other BGL meters to make sure the result was correct. Tim's fasting BGL was 19.5. Based on this and on the fact that he has lost 10kg in a little over 6 weeks, I'm so sorry, but Tim is diabetic."

I felt like I had been kicked in the stomach.

After about 20 seconds of absolute silence Tim said to the DE, "So, where is my Rufus? And I want a purple pump."

True to her word, the DE handed Tim the JDRF KidSac with his Rufus Bear inside, and filled out the forms for a purple insulin pump.

We spent the next few hours at the hospital for further tests and for a "crash course" in T1D education. It was the easiest T1D education the DE had ever done, because, thankfully Tim had been present at almost all of his sister's education sessions, including her Pump Start.

One week later, on Monday 1 November, Tim started using his insulin pump. That week was also "exam week" at school. Tim was excused from his exams upon advice from his Endocrinologist who was concerned that the stress of the exams would mess around with his BGL's so soon after his diagnosis.

A few days after Tim's pump-start.

Now, one year on, T1D is just another part of our lives. Since it's just me and the two kids, who are both T1D, it makes things pretty easy when it comes to meals and the everyday T1D stuff.

Night time is a little more interesting and it's not uncommon for me to be up 4 or 5 times during the night - one child will be running high, the other will be running low. Nana-naps are a survival tool for T1D parents!

But, that's normal for us - just a different kind of normal.

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!