Friday, March 15, 2013

Crying out for a cure

How is it that after 5 months of living with Miss Chief's diabetes I can still spontaneously burst into tears at the thought of what she has to go through every day?

Do D-parents ever get over this? I'd give anything to take this from her, for it to be me instead of her. The old phrase "this is going to hurt me more than it hurts you", I get that. I really, really hope it does hurt me more than it hurts her. Every so often she screams when she gets a needle. Sometimes she cries at the indignity of lying on her tummy so we can put a needle into her bottom. Sometimes she is perfectly willing, lying perfectly still but for some reason it hurts and she cries. And it tears me apart inside. Every time. It breaks my heart to think that she might feel a fraction of the pain I feel for her. Watching her brother tucking into his breakfast until he's full whilst we quiz her about how much she wants, weigh it, calculate carbs and insulin, give her a needle, all before she can eat.

It is such a cruel disease to affect children and therefore their entire families, rather than adults who are much better equipped to deal with it. Make no mistake, this is not an easy thing for anyone to live with at any age and diabetes crafts some strong, healthy, switched on and incredibly brave kids. But what a price to pay. Right now, at this particular moment in time, I have never wanted a cure more.  I read a post on Facebook, one of those sweet, poignant and utterly annoying wise-mother-to-naive-daughter type posts. It said,
"The physical wounds of child bearing will heal, but becoming a mother will leave her with an emotional wound so raw that she will forever be vulnerable."
"I want to assure her that eventually she will shed the pounds of pregnancy, but she will never feel the same about herself. That her life, now so important, will be of less value to her once she has a child. That she would give herself up in a moment to save her offspring, but will also begin to hope for more years, not to accomplish her own dreams, but to watch her child accomplish theirs."
At that moment the desire to cure my child was overwhelming, as was the utter anguish that this is just not currently possible, and my feeling of inadequacy at having done no fundraising and having no idea where or how to start.

But it's a moment and it will pass. I'll pick myself up and get on with the day, counting carbs for dinner, researching insulin pumps and preparing for Diabetes Camp. Because this is what I do now. And there will be more such moments. And I'll get over them too. And move on. And on. Because what else is there to do? This is what keeps my girl alive.

Wednesday, March 13, 2013

Helter Skelter: Sharing your passion with your kids

What do Enid Blyton's The Enchanted Wood and The Beatles' Helter Skelter have in common? Read on and ye shall see...

One of the greatest gifts you can give your children is sharing your passions. My parents gave me a love of books, music, travel and wine and I am now passing the first two on to my own children. I will move onto travel soon but shall save the wine until much later.

For Christmas the Chief was given two of my favourite childhood books: The Enchanted Wood and The Magic Faraway Tree. We've been reading them together. I am actually quite amazed that a 4 year old can sit and listen to a book that has chapters and very few pictures but she does. It took her a while to get that we read all of one before starting on the next though.

Did you ever read those books? I'd forgotten a lot of the details. I could only remember the pop cakes and toffee. I guess that's another thing my parents shared with me that I'm now sharing with my kids: a love of food. Tonight we read the chapter about the funny old saucepan man who causes so much clanging and banging with his saucepans that he doesn't always hear correctly. Reminded me very much of The Fawlty Towers episode, Communication Breakdown, which I'm sure I'll share with my kids in due course.

We got to a section in the book that read: "The saucepan man ran helter skelter to the hole..." when suddenly the Chief burst out with "Helter Skelter, helter skelter", her rendition of The Beatles' classic. And I looked at her proudly and thought, "that's my girl" as I'm sure my dad will think when he reads this.

I would just like to add that I don't talk about Happy One much but he is just adorable at the moment. He's a stubborn creature (can't think where he gets that from Grandad, or more likely Grandpa!) with a love of cake (once again, where did he get that from, chaps?) and cars (Grandad); he sleeps in the car and with a car. His language is maturing every day and he is starting to formulate two and three word sentences. How can you resist, "cuddo-mummy, wanna cuddow mummy"? Which, of course means "cuddle". So sweet. Tonight he told Map Man, "I wan nana-weet", meaning banana and weetbix (weetabix). He cries when he doesn't get his own way and if that doesn't work he screams, throws things, hits, pushes, lies on the floor and kicks his legs and slithers along on his back like a snake. If you have hold of him at the time he proceeds with a back arch a yogi would be envious of, doubling over and out of your arms. He never wants to eat dinner but he's always up for cake, cereal or egg. If we manage to give him something he likes he'll ask for "more" regardless of whether he actually wants to eat more. He gives the loveliest cuddles and kisses and follows the Chief around like a little puppy dog at times. And she is such the big sister with him, taking his hand and leading him around. He also has violent tendencies, which worry me, and loves to lounge in his rocking chair with his milk in his hand like an old man. He is impossible to take photos of as he always runs around the back of the camera to have a look just as I'm pressing the button. Here are some pics I took of them at Underwater World this afternoon.
And to wrap up I thought you'd be interested to know I just found my laptop mouse in the bathroom, courtesy of Happy.

Well do you, don't you want me to love you....

Hey! I just wrote a whole post without even mentioning diabetes.


Tuesday, March 12, 2013

Warning: Undiagnosed Diabetes Kills!

I have lost count of how many of these stories I have heard in the last five months since the Chief was diagnosed with Type 1 Diabetes. It is terrifying, infuriating and utterly confounding.

Just last week a young boy in the United States died in his bed from ketoacidosis after suffering from undiagnosed Type 1 diabetes. His parents thought he had a stomach virus. But within days he had slipped into a coma and died after his parents were unable to wake him one morning.
And now the classmate of a close friend's son is seriously ill in intensive care after his GP failed to diagnose diabetes. A naturally athletic and active boy his mum was understandably concerned when she noticed him going off his food and losing a significant amount of weight. The GP told her there was a stomach bug going around but that evening her son collapsed.

This does should not happen. We must ensure that both parents and GPs are more aware of the signs and symptoms of type 1 diabetes and how easy it is to diagnose.

The symptoms are often some combination of the following:
  1. Excessive thirst. Have you noticed your child drinking more than other children or more than they used to?
  2. Frequent urination. Has your child had any bed-wetting incidents after being toilet trained? Do they wake in the night to go to the toilet? When out do they ask to be taken to the toilet more than other children or do they go more than you do?
  3. Extreme hunger or loss of appetite. Miss Chief was exceptionally hungry leading up to diagnosis and in fact we thought it was a growth spurt. But some children may lose their appetite, especially as the disease progresses. In advanced stages vomiting may occur.
  4. Sudden and/or extreme weight loss. Most of us don't weigh our children but perhaps they seem a bit thinner. Maybe their clothes have become a bit baggier.
  5. Tiredness and lethargy. Is your child sleeping more or less active than usual?

If your child has any of these symptoms take them straight to your GP. Please, please insist that your GP does a blood glucose (sugar) test. It is a quick and simple procedure that consists of either testing a urine sample or pricking the finger tip to obtain a small sample of blood. Do not feel like a paranoid parent and do not accept the response of "it's just a virus" until you are certain that glucose levels are normal in your child. Normal levels in a non-diabetic are between 4.0 and 7.8 mmol/litre. Chief was 24mmol/litre when diagnosed but I have heard of children with levels in the 40s!

If your child does not present any of these symptoms then ask your GP whether they would be willing to do a blood glucose test in these circumstances. Tell them these stories and if they seem dismissive then I strongly encourage you to consider changing GPs if you are able. Both Chief's GP and a GP friend of mine routinely test every child that presents with an apparently severe stomach bug, especially when accompanied by any of the above symptoms. This is the way it should be for all GPs but sadly many of them just aren't aware.

Please share this with all the parents you know, and even non-parents and ask them to share it with all the parents they know. We must get the word out. We don't know why but this disease is on the increase and it is so important to catch it in the early days to prevent serious illness and death.

Thursday, March 7, 2013

Reminder to support Anna's JDRF Ironman effort on 24th March

Only 16 days left until the 2013 Melbourne Ironman on 24th March, when the amazing Anna Jepson will prove once and for all that she is indeed utterly perfect and talented by taking part in a ridiculous feat of athleticism in aid of Diabetes research.

Please please please support Anna, if you haven't already. Her extraordinarily generous employer, Macquarie Bank will match your donation. Please help Anna to reach her target of $3500 thus raising $7000 to help children like Miss Chief find better ways of living with this incredibly inconvenient (not to mention life-threatening) condition.

Anna's fund-raising page has a permanent link in the right hand column of my blog until such a time as Anna stops accepting donations but here it is again.

And here, again, is my original post on the craziness that is the Ironman.

Wednesday, March 6, 2013

Diabetes by Miss Chief

My incredibly talented singer-song writer daughter is now working on becoming a published author and is writing a book about diabetes. I have to admit it is rather good, and extremely informative. I overheard her working on the first draft whilst chauffeuring her to a swimming lesson the other day.
"If you have diabetes then you must be healthy. You must look after yourself all day and you must eat healthy food all day. You must do finger pricks every day and if you want to go on a pump then that's okay."
Brilliant! I can't wait for this book's release and I will be pre-ordering my copy. Watch this space if you're interested in buying a copy for yourself.

Tuesday, March 5, 2013

Bio-engineered organ to mimic pancreas

Today is a very exciting day in the Type 1 Diabetes world. The Diabetes Research Institute in the US, committed solely to finding a cure for Type 1 Diabetes, has announced BioHub, a project to perfect a mini-organ that will mimic the pancreas, housing protected beta cells that can't be destroyed by the crazy suicidal antibodies produced by the overly eager (and totally confused) immune system. The BioHub will respond to the bodies blood glucose level and produce insulin, just like a real pancreas.

The exciting thing about this is that the first step has already been completed. Donor cells have been transplanted into the liver of Type 1 Diabetics freeing them from the need to inject or pump insulin. The downsides of this are that the cells come from deceased donors and anti-rejection drugs must be taken. The next steps are to allow the body to once more produce its own insulin-producing beta cells by developing a container to house the cells and finding an appropriate site within the body to place it.

This video explains some of the exciting ideas the scientists are exploring and is well worth the five minutes it takes to watch.

Whilst it's still important to ensure that adequate funds are donated to organisations, such as JDRF, for the development of more liveable treatments, this is an equally worthwhile cause. I am extremely hopeful that a cure will be available in time for Miss Chief to benefit for a significant and lengthy portion of her life.

If you wish to donate to DRI's BioHub then please visit this page.