Wednesday, November 2, 2011

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


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?  

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