In the news

It looks like a schmancy mobile phone or mp 3 player, right?   Well its actually an insulin pump.  In fact, the first-ever with a color touch screen, and is the smallest insulin pump system currently available.   Its gotten the 'aye' from the US Food and Drug Administration to head to market.   Its SLIM as its name suggests,  and was designed to make diabetes management easier to teach and easier to learn. Additional user-oriented features of this insulin pump include an eco-friendly rechargeable battery and USB connectivity to a web-based therapy management software.   Gives us hope right that theres activity going on to improve life for type 1's.

Another thing you may be interested in is the progress of the artificial pancreas trial in Israel,
to watch the video click HERE.   I have to warn you it choked me up - I literally needed tissues.   I think its the anticipation and the idea that there can be a management tool in my lifetime that can take alot of the stress out of Reubens management.

Did you see this over the internet this month?    The JDRF published this to push the FDA. 

Finally an update on Dr Faustman working towards a cure for type 1 diabetes - if you dont know much about her work read up!  -
HERE  they are currently raising funds for a phase II trial.

I almost forgot he had diabetes

Yesterday was fun.  Spring sunshine, happy kids.  Danger Dad was in his element, trotting off to the store for a new paddle pool, waterguns and slip n slide (the other one ripped from overuse- Danger Dad is the kinda person who ignores the warnings that things should only be used the way manufacturers intended!)  

Lets just say that spreading it out over the trampoline and down the slippery slide so the kids can be soapy human torpedos.. will rip your slip n slide.

I had to laugh watching my youngest line up with the big kids waiting for their turns on the slip n slide - getting soaped and wizzing down getting sprayed in his sweet chubby face. 

I chatted away happily but after awhile I noticed Reuben had drawn away from the other children.   He was sitting on a little concrete block in the shade of a gardenia bush, looking on quietly.  

Somethings not right.

The day was so fun I wished silently that he didnt have diabetes.   Not angrily, just sad that he felt himself dropping and had to draw away from the fun to deal with what he was feeling physically.   I ran upstairs for his gear and tested him.    He was low.   Softdrink and chocolate later, he was back in the action.

Yesterday I almost forgot he had diabetes.

Omnipod in Australia

I posted previously about the tubeless insulin pump, the omnipod and how it isnt available in Australia.  My position isnt to tell you that tubing/no tubing is the way to go my concern is that when new diabetes technologies enter the market they arent welcomed as options that may help with the management of type 1 - for somebody.   (Think affordable CGM's and artificial pancreas!)

Today a good friend emailed me an update -

Omnipod: petition update

 

The reality of getting Omnipod in Australia still remains in doubt according to CTL the supplier in Australia.

 

Apparently a new model of the Omnipod will be available early next year in Europe, this gives us time to energise our petition and increase our noise level to try and get the Federal Health Minister to help us get access to the Omnipod in Australia.

 

 

 

See link for details of the new Omnipod http://en.mylife-diabetescare.com/mylife-omnipod-overview.html

 

 

 

There are now 699 of us who have joined our online petition ( here )which is great but we need to make more noise to convince the Federal Health Minister, Nicola Roxon to change the unfair reimbursement policies that will enable us to get access to the Omnipod in Australia.

 

We have decided to turn our efforts into contacting the two key Diabetes Organsisations and ask them to lobby government to change the unfair policy that is stopping the Omnipod reaching Australia and going onto the chat rooms and spreading the message.    

 

Attached is a list of other contacts and addresses for diabetes organisations and other contacts you may wish to write to.

 

You may also contact Nick Xenophon who I understand has already been approached by several parents from South Australia.  Level 2/31 Ebenezer Place, Adelaide senator.xenophon@aph.gov.au Tel: 08 8232 1144 Fax: 08 8232 3744

 

I wish I had more positive news, let's start making some more noise .

 

Cheers Alex

** ** ** **

Wanna help?

 

Heres the attached list of contacts -

 

Mrs Carol Bennett

Consumer Health Forum

POBox3099

Manuka ACT 2603

info@chf.org.au

Mrs Patricia McKenzie

President, Diabetes Australia

 GPO BOX 3156

CANBERRA ACT 2601

admin@diabetesaustralia.com

Mr Lewis Kaplan

CEO Diabetes Australia

 GPO BOX 3156

CANBERRA  ACT  2601

lkaplan@diabetesaustralia.com.au

Mrs Susan Alberti,

President, JDRF

Level4, 80-84ChandosSt

St Leonards NSW 2065

dansu@dansu.com.au

Mr Mike Wilson

CEO, JDRF

Level4, 80-84ChandosSt

St Leonards NSW 2065

mwilson@jdrf.org.au

John Douglas

Director, Closing The Loop Pty Ltd

PO Box 120

West Ryde NSW 1685

info@closingtheloop.com.au

Chair of the Parliamentary Diabetes Support GroupChair of the Parliamentary Diabetes Support GroupChair of the Parliamentary Diabetes Support Group

Parliamentary Diabetes Support Group

Chair, The Hon Judy Molan MP J.Moylan.MP@aph.gov.au

Dr Mal Washer MP mal.washer.mp@aph.gov.au

Steve Georganas MP Steve.Georganas.MP@aph.gov.au

For your local federal member of parliament go to;

http://www.aph.gov.au/house/members/

Chat rooms to visit and add comments

http://www.realitycheck.org.au/RCforum/

http://www.muntedpancreas.com/forum/

 

 

The orange box

Theres some things about diabetes that we dont talk about alot.   

But we freaking should.   My husband and I are 18 months into this journey as pseudo - pancreas (es?) .   Is pancreaii a word?

The long orange box is one of those things.   (The... ahem...one with the big needle inside).

Its almost as if talking about it may cause us to have to use, though we understand that to be just fear.   The panic.

But truly we should be educating everyone around us on this life saving orange box as well.

Everywhere we go, we take Reubens hypo kit.   Its been a complicated thing having to treat lows in a baby.  When Reuben was 8 months, 9 months old he didnt think much of juice and lemonade.   You could barely get him to take the things he needed to treat mild low blood sugars.   We had a few serious low episodes but we managed to squeeze some glucogel in his mouth and keep some of it there.     Its been a fearful time finding things he will accept to bring him up.   Now that hes 2 years old, weve been able to expand his 'odds on Reuben taking this hypofix despite the confusion and the fight' food list and include things like soft lollies and lollypops.  (Pop-pops to Reubs).

Thankfully now the hypo kit isnt jammed full of 'options', we just carry, juice, lollipops, glucojel, some soft lollies and the orange box.

Soooo - heres the piccy and a quick run down on glucagon -

GLUCAGON - What is it?

Think of it as LIFESAVING.   Put in simple terms, it functions as the opposite of insulin.  (Insulin is also life saving).   Insulin lowers blood sugar, glucagon raises it where there has been insulin reaction (seizures, unconsciousness).  Obviously unconscious persons cannot eat or drink the sugar they need to raise blood sugar, so the next step is glucagon.

Gulcagon is not sugar. It is a chemical that causes the liver to release its stores of glucose into the person's bloodstream. This "jolt" will last somewhere around 90 minutes after which they will still need emergency help as soon as possible.

The instructions inside the orange box are easy to follow - remove cap on vial, squeeze the liquid from the syringe into the vial, shake to dissolve the white powder, draw up the dose, and inject subcutaneously like you do insulin.   1/2 dose mark indicates for small kids, and full dose for bigger bodies....

 

We havent had to use it... yet.   But everytime theres a lower low.  Or.   Everytime we have vomitting or gastro.   We.brush.up.   Just to be sure.

 

Im grateful each morning when I see Reubens chubby little face and feel his soft baby skin and smell his baby sweetness as he kisses me good morning - and I havent had to administer glucagon.   Grateful I am.

 

Educating others about diabetes...

What can you do for  DIABETES AWARENESS?


Consider participating in the big blue test, see video above.

Wear blue clothing and accessories on Fridays in NOVEMBER   see the video below.

 If someone asks tell them about diabetes and the impact its had on your loved one and your lives.  On November 14th, World Diabetes Day, Bantings birthday (discovery of insulin was made by Banting, Best and associates.)   The day has been recognised since 1991, and was instituted by the International Diabetes Federation.   The theme until 2013 apprently is Prevention and Education am I wrong in saying here that yet again, the focus seems to be on Type 2?    The blue circle symbolises unity of the global diabetes community in response to the diabetes pandemic.




Change your profile pictures to blue in November and particularly on 14th of November.

On another note, familiarise yourself with the symptoms of type 1 diabetes - the onset can be rapid and fatal if not correctly diagnosed.

Being excessively thirsty

Passing more urine

Feeling tired and lethargic

Always feeling hungry

Having cuts that heal slowly

Itching, skin infections

Blurred vision

Unexplained weight loss

Mood swings

Headaches

Feeling dizzy

Leg cramps

(per diabetes australia).

If you dont beleive me on the vague symptoms, read our diagnosis story -  HERE

November November.. a busy month.

Big things going on in November.   On a personal note,  a couple of Birthdays -  My daughter turns 4.   My husband gets older...(ahem).   I have a parent night for my daughters transition to big girl kindergarten (yay!),  and some vaccinations, dental appointments (eek), the usual rounds of music, dancing, swimming and tennis... and to wrap it all up at the end of the month, an endocrinologist appointment and the dreaded hba1c...

Anyhoo -

November is big because it is Diabetes Awareness Month.

November the 1st was Type 1 Day

and

November the 14th is WORLD DIABETES DAY

If I could educate others about diabetes - what would I say?



I would say my son has a chronic illness. 

 His pancreas doesnt work.  I beleive it began to shut down when he was a tiny little baby and by 8 months his body was so sick he was admitted to emergency and we almost lost him due to lack of knowledge and routine sugar testing in our GP's office.

His childhood, whilst I fight for it to be as normal as possible, it isnt.   He cannot be with any adult who isnt aware how to care for him and his diabetes.  He cannot be anywhere without his medical supplies and appropriate carbs.
 
He no longer makes insulin and we need to inject insulin into his body.   For everything he eats.   At the moment its 2 needles at morning, and 2 at night.   Some regimes we've been on mean around 6 needles everyday.  Carbohydrates without insulin are poisonous to his body, and high sugar levels result in dangerous toxic by products called ketones.  Insulin without carbohydrates result in scary low blood sugar episodes.  

I cannot say with any certainty whether my son is okay or not.   You cannot 'guess' a blood sugar by looking at him. You have to take his finger or toe, and lance some blood and check his levels.   Heartbreakingly, we have to peirce his skin repeatedly, on average 8-10 times a day and through the night.  

We try to predict by looking for patterns, but I cannot say with any assurance that he will be in range from the decisions we make, or that he will be high/low or that he will wake up tomorrow at all.

I do know he wont 'get better' he wont 'grow out of it' he continues to require insulin until there is a cure.   Sadly diabetes is an invisible illness, so people think we have it 'under control'.... but parents (type 3's) and pwd,  have to so intensively manage the disease it often leads to depression and burn out.

I cannot say that diabetes is as 'manageable' in a baby and toddler as the brave faces at the hospital let on... 

I do know there is very little education about diabetes - plenty of ignorance, and mistaking it for type 2 or what little people know about it.  
Type 2 is essentially a different disease, but gets all the media spotlight/funding.   I do know they are now discovering genetic causes of diabetes that until recently were always just treated like type 1.

I know there isnt enough education for doctors in general practice.

Not enough info and awareness for parents who find themselves with a child with a mystery illness... desperately trying to get help.   Type 1 children can die before being correctly diagnosed, or not being diagnosed quickly enough.   They can also die from high sugars and untreated low sugars.   This is serious stuff.

Despite the fact that one in around 800 school children in Australia will have type 1, there is a lack of support - in the community, kindergartens, in schools, at the hospital.

Our kids dont seem to have a voice.

Is it because they are children?