Monday, June 27, 2011

2011 JDRF Children's Congress - Washington DC, USA

Below are just a few of the videos from this year's JDRF Children's Congress in the US.

This first video contains a part of Kevin Kline's address to Congress:

The next video is of Crystal Bowersox and the Children's Congress delegates performing the song, "Promise to Remember Me."

These videos and other information about the 2011 JDRF Children's Congress can be viewed at the Children's Congress 2011 website.

Thursday, June 23, 2011

Kevin Kline Advocates for Type 1 Diabetes Research

One of my favourite actors, Kevin Kline, is one of us - a parent of a child with Type 1 Diabetes.

This video was posted on Blog on 22 June 2011 about Kline appearing before a Senate Hearing about T1D research!

Wednesday, June 22, 2011

changed blog address

Just a quick note to let you know that the URL for this Blog has changed to:

thanks x x x

Tuesday, June 21, 2011

the kids did good...

Today the 2 kids gave a presentation at their Combined School Assembly (year 5 to year 12) about Type 1 Diabetes ahead of the school's fundraiser for the JDRF scheduled for next week.

They are the only students at their school with Type 1 Diabetes.

They were very nervous - but they did GREAT!

They played the following video we created to educate the students and let them know how they can help. When the video finished they gave a few more details about the fundraiser and encouraged everyone to bring plenty of money to school.

Very very proud of them.

Type 1 Diabetes School Fundraising
YouTube Video © timrosbranson 2011

Monday, June 20, 2011

World Diabetes Day...

Until this morning I had a candle on the side of this Blog to raise awareness for World Diabetes Day on 14 November.

This morning I have removed it.

Upon visiting the World Diabetes Day website this morning I came across the new video "Act on Diabetes. Now." I have embedded the video here.

The statistics mentioned in this video relate to Type 2 Diabetes.

The video suggests ways that we can help to fight this disease - it mentions causes of "Diabetes" as being "urbanisation", "lack of exercise", "poor diet".

Advertising campaigns such as this cause more harm to the Type 1 Diabetes community than good.

I urge members of the Type 1 Diabetes community to contact the International Diabetes Federation and provide your comments about this advertising campaign.

You will find links for emailing and telephone contact at the bottom of the World Diabetes Day website together with links to contact this organisation via Facebook and Twitter.

Sunday, June 19, 2011

and now we wait . . .

Back in September 2010 a fellow T1D parent and I came together to create an online petition directed at the Australian Government as the start of a campaign to have current Carer Allowance (Child) legislation changed so that all carers of children with Type 1 Diabetes, up to the age of 16 (since that's as far as the legislation goes) will automatically receive the Carer Allowance not only to assist with the enormous financial burden placed upon these families but also to recognise the significant and ongoing level of care required by parents in order to keep their children alive, healthy and to reduce the chances of the many known serious longterm complications of this devastating disease.

As at the time I am typing this post that petition has gained almost 1,400 signatures.

As things currently stand carers of children with Type 1 Diabetes only receive the Carer Allowance automatically if their child is less than 10 years of age. Following their 10th birthday a Carer must qualify for the Carer Allowance under the Disability Care Load Assessment tool which came into effect on 1 July 2010.

If your child, beyond his/her 10th birthday, did not score enough points via the DCLA tool then the Carer Allowance for your child would be discontinued or, if your child was over 10 years of age at the time of your first Application for the Carer Allowance, your Application would be rejected.

The reasoning behind this age cut off is the Australian Government's belief that children with Type 1 Diabetes should be capable of the self-management of this condition once they have reached the age of 10 years, irrespective of their age of diagnosis and duration of living with this disease.

Many parents have appealed this decision and have failed. For most parents the loss of the Carer Allowance can have devastating consequences with some families who's T1D child has been on insulin pump therapy for years having to return to Multiple Daily Injections because they can no longer afford the additional cost of insulin pump consumables.

At the time that my friend and I started the petition I only had one child with T1D, my then 10 year old daughter. I did receive the Carer Allowance for my daughter however I later learned that my application had been approved because her Endocrinologist had indicated on the Medical Report that my daughter had serious behavioural issues with respect to the treatment setting (which is actually an understatement!) - and NOT because she has an incurable life threatening medical condition that requires careful supervision and care on my part 24 hours a day!

A few short weeks after the petition was set up I learned that my then 13 year old son had tested positive to high levels of T1D antibodies in a blood test to determine whether or not he could take part in the INIT II Clinical Trial. My son was then asked to undergo the second screening process for the Trial including fasting BGL's, and an Oral Glucose Tolerance Test. Two weeks after receiving news that he had tested positive to the antibodies we went to the hospital for the next round of blood tests. My son was diagnosed with Type 1 Diabetes before the Oral Glucose was administered and therefore could not take part in the Clinical Trial.

After the initial shock of his diagnosis had passed, and after he had received his Rufus Bear and told his team that he wanted to go on Insulin Pump Therapy as soon as possible (and ordered a purple pump) I was handed the Carer Allowance (Child) Application by the Diabetes Nurse Educator. I actually laughed.

I then had to explain my reaction and told the DNE what I knew about the Carer Allowance (Child) legislation with respect to children 10 years of age or over. It was at that time that the DNE told me that I was the second person she had heard from in the last two days about this issue and until that point the DNE's and the Endocrinologists at the hospital had assumed that all families with a T1D child automatically qualified for the Carer Allowance. She then asked if I would be prepared to contact the other parent she had spoken to the day before, who had been denied the Carer Allowance for her 13 year old newly diagnosed daughter and was appealing the decision through the Social Security Appeals Tribunal.

That Appeal was heard on 15 November 2010 and the decision of Centrelink was upheld. This parent has continued her battle through a further Appeal to the Administrative Appeals Tribunal of Australia, which hearing will take place in the near future and has the full support of the Juvenile Diabetes Research Foundation (JDRF), the Australian Diabetes Council (ADC) and the Australasian Paediatric Endocrine Group (APEG)

And so the fight began in earnest.

Needless to say all three of my applications for the Carer Allowance for my son were rejected. This had become personal.

Letters were sent to Members of Parliament, television, radio and print media, phone calls were made and truckloads of medical journals were read and summarised.

For some unknown reason nobody in the mainstream media was interested in our story - which made the fight very difficult, but not impossible.

Then, our Knight in Shining Armour appeared! Another member of the Diabetes Online Community managed to get the attention of a young journalist in suburban Melbourne! The first of her articles about the Carer Allowance fiasco was published in a suburban newspaper, The Cranbourne Leader, on 9 March 2011 and following the publication of that article the Save Our Children media campaign commenced in NewsLimited publications throughout suburban Victoria.

Through continued pressure via the Save Our Children newspaper campaign and from hundreds of parents of children with Type 1 Diabetes we had an enormous success when in late April 2011 the Minister responsible for this legislation, The Hon. Jenny Macklin, MP, Minister for Families, Housing, Community Services and Indigenous Affairs, quietly announced a Review of the Carer Allowance (Child) and Health Care Card legislation with respect to carers of children with Type 1 Diabetes. I say "quietly" because the Terms of Reference for that Review were not made public, nor were they provided to other Members of Parliament or Senate Representatives.

The Review was initially scheduled to be completed by 31 May 2011.

Again, through pressure from parents and the Save Our Children campaign, Ms Macklin agreed to a meeting with parents of children with Type 1 Diabetes as part of the Review process. That meeting was scheduled for 8:30am on the morning of Tuesday 17 May 2011 at Ms Macklin's office in the Commonwealth Parliamentary Offices in Melbourne. That meeting was attended by representatives of 6 families, including myself and my two T1D children, and the Government Relations Coordinator of the JDRF.

Children with Type 1 Diabetes meet with The Hon. Ms Jenny Macklin.

Children with Type 1 Diabetes, their Parents/Carers and a representative from the JDRF meet with The Hon. Jenny Macklin MP in Melbourne on 17 May 2011.

During that meeting each parent provided some background about the day to day care of their children, their fears and concerns, issues they deal with in the school environment, the lengths they go to in order to ensure the best possible future for their children. Ms Macklin was shocked by the level of care required and left us with the impression that she agreed that changes needed to be made.

When thanking Ms Macklin for her time the children presented her with a scrapbook of stories and images from children living with Type 1 Diabetes around the country, together with a DVD containing the following video, both with the message, "Remember Me":

Remember Me - YouTube Video
© timrosbranson 2011

At the conclusion of that meeting it was agreed to extend the completion date of the Review for two additional weeks so as to allow as many families as possible to provide their input and also to enable organisations such as the JDRF, ADC and the APEG, as well as other experts in T1D in children and adolescents formulate and present their evidence.

The completion date of the Review was then changed, with the agreement of families and the JDRF, to 17 June 2011.

As part of the consultation process with respect to the Review parents and other interested parties were asked to contact Ms Jenny Pearson of Jenny Pearson & Associates, who had been appointed by Ms Macklin's department to undertake the evidence gathering aspect of the Review.

Jenny Pearson and Associates Pty Ltd
Jenny Pearson
Managing Director
PO Box 246
Tel: 08 8449 7790
Fax: 08 8449 7789
Mob: 0417 883

Jenny Pearson is Managing Director of Jenny Pearson & Associates Pty Ltd - a company specialising in consulting for the human services sector. Services offered include evaluation, organisational review, stakeholder consultation, planning, policy development and research.

Jenny has qualifications in nursing and disability and holds a Masters Degree in Business Administration. She has undertaken a wide range of projects at state and national levels in areas such as disability, health, aged care, child care, social security, drug and alcohol treatment and correctional services.

Ms Pearson received such an overwhelming response from parents and others associated with Type 1 Diabetes that she and Ms Macklin eventually had to set up a dedicated email address so that parents in particular could share their stories.

On 2 June 2011 the Carer Allowance (Child) Review was raised during discussions in the Senate.

Following the circulation of the transcript of these discussions many parents in the T1D community raised questions as to the level of knowledge of Senators involved in this discussion.

I then contacted Senator Concetta Fierravanti-Wells directly, provided her with background information regarding our campaign and offered my assistance with respect to any questions the Senate may have that would help them to understand the issues.

The children and I were then invited by Senator Fierravanti-Wells to attend a meeting with herself and Senator Mitch Fifield at Parliament House, Canberra on the afternoon of Thursday 16 June 2011.

The 2kids meet with Senator Mitch Fifield and Senator Connie Fierravanti-Wells 
at Parliament House, Canberra on Thursday 16 June 2011.

Although our meeting was scheduled the day before the conclusion of the Review the purpose of the meeting was so that the Senators could gain further insight into the position of families living with Type 1 Diabetes given that any changes to legislation which involved additional Federal expenditure would have to be approved by the Parliament. The Senators wanted to be armed with as much information as possible to enable these changes to be approved by the Parliament as quickly as possible.

The JDRF and the ADC had until close of business on Friday 17 June 2011 to provide their Joint Statement to Ms Macklin's office. That Joint Statement was provided to Ms Macklin's office, Ms Pearson, Ms Judi Moylan MP, Senator Fierravanti-Wells and Senator Mitch Fifield on the afternoon of 17 June.

The conclusion of the Joint Statement of the JDRF and ADC is as follows:



The Juvenile Diabetes Research Foundation and Australian Diabetes Council are firmly committed to improving the lives of the type 1 diabetes community. Type 1 diabetes is one of the most common chronic diseases in children. It occurs more frequently than cancer, cystic fibrosis, multiple sclerosis and muscular dystrophy. If not properly managed, it can result in considerably reduced quality of life, many health complications, and death.

Carers of type 1 children have to be constantly on alert, day and night, to help manage their child’s condition. We know that many schools are not prepared or able to assist type 1 students during school hours, requiring carers to be available and present during school hours to help manage their child’s diabetes. We know that many carers are prevented from working as they must prioritize their child’s condition above employment obligations to their employer.

We know that on many occasions the assessment process by Centrelink staff has been well below acceptable standards of knowledge and understanding necessary to make fair and equitable assessment of a carer’s qualification. We also know that the current assessment process and forms do not adequately allow for the needs of type 1 patients as the primary carers objective is to maintain a child’s functionality to prevent complications and the possible fatality of their child.

Access to the Carer Allowance and Health Care Card through the lifting of the age threshold to 16 years, combined with an easier, clearer and more type 1-relevant questionnaire will make a positive difference to their daily management, support and care for all families of children and adolescents with type 1 diabetes.

So, now we wait . . .

Tuesday, June 14, 2011

and a cat...

Fluffy joined our family yesterday! Hmmmmm - wonder if we can train her to recognise hypos?

Nothing much else to say about Fluffy - just an introduction really!

So, it's been a little while!

We survived my son's school camp! YAY! And educated another person about the joys (NOT) of T1D in the process!

When I met with the people running the camp the week before the start of camp although I was happy that they were taking things seriously I gained the distinct impression that they thought that I was making a big thing out of something that was relatively easy to manage.

After discussing what to do about camp with the Diabetes team at the hospital I reduced my son's basal rates on his pump, mainly because I knew that he was going to be quite active and the weather was going to be very cold - so the aim was to reduce the chances of hypos.

I made the changes to his pump about 5 days before camp to see how he'd manage on the lower insulin doses - and during those 5 days he stayed well within range! No highs at all, despite having very very small doses of insulin running in the background! Of course that did not allay my fears about hypos at all!

However, the whole time he was at camp he was running high! The woman running the camp thought that this was okay because, "at least he wasn't having a hypo - that's the most important thing!" Until... on the 3rd day she had someone helping her out with my son because they were doing abseiling and caving - a friend of hers has a son with T1D and is on a pump - so this friend was there for the day. When this friend saw my son's BGL's over the last few days she had a long talk to the woman from the camp about the dangers of running high!

By the end of the camp the hostess was exhausted and actually apologised to me for making any assumptions about the care of a child with Type 1 Diabetes! She told me that she spent the entire time worrying, and drove my son nuts by asking him to test his BGL's all the time. 

I told her that I was pleased that my son's camp was first because having him there has given her a "trial run" for when my daughter goes to camp later in the year. She asked what I meant about that, given that managing my son's condition for the week was so difficult - I then told her that my son is "easy" compared to my daughter when it comes to T1D management.

I'm pretty sure she's hoping I'm going to take up her offer to have me accompany my daughter on her camp!

Of course I hardly slept at all the whole time he was at camp. Yes, I had to get up to test my daughter anyway - but every night the hostess sent through text messages or made phone calls to tell me what was happening with my son - which was fine. 

But as any parent of a T1D kid knows, sleep does not come easily when they are not in your care.

Monday, June 6, 2011

Gotta love the media... NOT!

One thing they don't warn you about when you finally leave the hospital with your newly diagnosed T1 child is the fact that the rest of the planet has absolutely NO idea what Type 1 Diabetes is!

You will automatically develop a "diabetes radar" - you will hear the word "diabetes" from a mile off, and you will know that, chances are, whoever has used that word is talking about Type 2! And your blood will begin to boil!

You will be able to name every single movie that has a character with T1D. One that I can remember is "Panic Room" with Jodie Foster as the parent of a T1 child. I think there's another with Harrison Ford - can't remember what that one's called but I think I'll have to watch it again just to make sure they didn't give insulin to the kid while he was having a hypo!

Oh - don't even get me started on that Aussie soapie with the T1 teenager!

More recently the Australian Government has started an advertising campaign about obesity - the "Swap It" campaign. The first one of the series of TV ads uses the word "Diabetes" when listing diseases or medical conditions that can result from obesity. Gee, thanks - how hard is it to put the words, "Type 2" in front of "Diabetes"!

Last week an American comedian walked out of an American Diabetes Association Event for kids because they were serving meat! This guy is a vegan and is apparently publicising a book he has written about his new vegan wonder-diet. After he walked out he was filmed talking to a representative from the local Children's Hospital about how terrible it was that they were serving meat at an ADA event and said, "that's like serving alcohol at an AA meeting!" On this guy's Facebook page he claimed that "Diabetes" was caused by eating too much meat. Again the T1D community banded together and made sure this guy knew the difference between Type 1 and Type 2 Diabetes - and particularly that Type 1 was NOT caused by eating too much meat!

Just this weekend a well respected Australian parenting website published an article written by a Homeopath about "Juvenile Diabetes" which lead to widespread outrage in the T1 community. The article said that "Juvenile Diabetes" was preventable and easily treatable - and essentially laid the blame for the development of Juvenile Diabetes in children squarely at the feet of lazy parents who didn't have the time to provide better food choices to their children. Wonderful!

Of course, the T1 community pulled together quickly on this one - and within a very short time the article was withdrawn. Many T1D parents contacted the author and the website, as well as the organisation the author works for and under whose name she purported to write her article!

I'm pleased to report that as of a short time prior to writing this post the Parenting Website issued a written apology to one of the parents who was instrumental in having the article removed, informed her that the author had been contacted, and promised to publish an article about Type 1 Diabetes after seeking information about this wretched disease from T1D educators and/or experts!

YAY! A WIN for the T1D community!

And I have to say that right at the moment I'm loving Grey's Anatomy - with their continued storyline about a clinical trial for islet cell transplants. I know that here in Australia we're a bit behind on Grey's episodes - but hearing main characters on a major US drama refer to T1D as a "beast of a disease" is music to the ears of a parent of a child with T1D! And - I have to say, kind of makes me wonder whether someone who works on that show has a recently diagnosed child - because as I've said before, unless you're living with this disease you just don't GET IT! The writers for Grey's appear to "GET IT!"

Just like almost every parent, before my first child was diagnosed I knew very little about T1D. I knew bits and pieces but definitely not enough to be able to look after a child with T1D. Even when my daughter was diagnosed I don't think it really hit me just how serious this was until we were being transferred to a hospital closer to home. There were no ambulances available so the hospital arranged to transfer us via cab. As we were getting ready to leave I was given a list of instructions for treating a Hypo, a bag full of biscuits and cans of lemonade (since that was all they had) and an emergency contact number in case there were any problems on the way to the other hospital in the cab! I've never been so terrified in my life! I think I checked my daughter's BGL about 10 times on that 45 minute trip!

At that time I remember thinking to myself, "Oh my goodness! If we have to be this careful just for a 45 minute car trip how on earth am I going to be able to take her anywhere or do anything? How can I drive a car at all if I have to be checking to make sure she's okay? How can I ever let her out of my sight?"

I'm a little more relaxed now, a little.

However, I am a LOT more educated - and now, when I see or hear misinformation about Type 1 Diabetes or some reference to "Diabetes" that does not differentiate between Type 1 and Type 2 I don't get quite so mad, I see it as an opportunity to educate one more person.

And you can be sure that I'll continue to educate people about Type 1 Diabetes until I draw my last breath.

Wednesday, June 1, 2011

School Camp - YIKES!

Next week my son goes off to his first school camp since diagnosis.

He's 14, you'd think I'd be looking forward to the peace and quiet - and most parents would be.

But not a parent of a kid with Type 1 Diabetes.

Every parent of a child with Type 1 Diabetes dreads school camps and the amount of stress they cause is enough to drive anyone to drink!

The camp my son is going on is for 5 days and is 2.5 hours drive from our home. That's a LONG way away if something goes wrong.

Today I have to meet with the school to discuss my son's care needs while he is away. I have been trying to organise this since the start of the school year however, as is usually the case, the school does not seem to have any idea of the complexity of managing this disease so they have put it off time and time again. I am sure they think that I'm some crazed overprotective parent who just needs to be placated.

The school sent home the usual consent form with the Medical Form attached. Typically, there was half a page for Asthma and another half page for Anaphylaxis; a great big section for consenting to giving your child Panadol or putting on a Band-Aid.

Where was the section for Type 1 Diabetes?

It doesn't exist.

Crammed in amongst the other general information is ONE LINE to "list" any other medical conditions, any medications and the dosage and time required.

Over the last two days I've been putting together a document detailing the care required for my son while he is at camp. So far that document is 9 pages long and I am nowhere near finished.

When our kids go to Diabetes Camp we have a form to fill out that requires us to list pretty much everything relating to their care - if on pumps, basal rates, sensitivity, insulin to carb ratios etc, if on injections, what type of insulin, how much and when - soooo much information - and the more you can give them they happier they are. And for Diabetes Camp the people in charge either HAVE Type 1 Diabetes themselves or are trained Diabetes nurses!

Oh dear, even writing this post is making me feel ill again.

Well - I have to get my "instructions" finished, pack up all of my son's diabetes supplies then take a shower and head to the school for the big "meeting". My son will be there and we have to do an infusion site change right there in the headmaster's office. I'm wondering just how confident they will be that they will be able to look after him once I'm done.

Oh - did I mention that my daughter will be going to the same camp at the end of the year?