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Befuddled With The Pump.

Does anyone in the D Community who considers themselves “pump savvy” own or use a Medtronic (Minimed) Paradigm 733?

I always seem to call the hospital just when the Diabetes Educator is at lunch..or it’s her day off…

I have spent a good deal of today on the phone, trying to gather as much information as humanly possible.

Medtronic provided me with a fantastic information package, but until you are fully accustomed to the new terms, it feels a little like having 80% proficiency in French when you have just accepted a teaching position in France!!!!

 I have to admit, I am feeling a little overwhelmed.( I am now cursing myself for not recording the education session that was given at the hospital.)

Medtronic have been an absolute delight to do business with, and I’m so pleased with the choice we made. However, I really feel like I needed a more comprehensive education session at the hospital to grasp the full concept of learning about the pump, and learning about how it affects Lance’s individual requirements.

I’m devoting as much time as I can to reading and studying the instructions that were provided, but I feel like I really need to pick someone’s brain about the “litle things.”

If a kind and willing soul wants to help Lance’s Mum , I would be SO grateful. Eight hours of information rattled off isn’t how I learn to the best of my ability. I’m more your “recapping what was just covered”, followed by a practical demonstration kind of girl.

The only feeling that I can compare this feeling of uncertainty to is looking swish and gorgeous for work;strutting down the street, only to discover I have put walked three blocks through the city in thong instead of heels.

 

I know it’s only been just over a week since Duplo (Lance’s name for his pump) has been in our care, but I am desperate to kick that HBA1C in the butt, and have Lance continue to make remarks about how well he feels and how he’s bursting with energy.

I’ll look forward to hearing from you!

 

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Pump Up The Jam..And The Cake..And the Doughnuts…

To all of our family, (biological and extended,) friends, fellow D Bloggers who sent their best and even complete strangers who heard about Lance’s “story”, I’m very pleased to report that Lance is home, happy, and has his insulin pump fitted!

Being such a momentous reason to celebrate, Lance and I trekked into Brisbane City, where we chowed down on a fresh doughnut, with pink glaze icing. When we were served, Lance looked at me with panic stricken eyes. It was the most joyous feeling to reassure him that he could have doughnuts occasionally, and that the press of a few buttons would take care of the insulin required to keep his blood sugar levels in a healthy range.

 

A delicious reality...

A delicious reality...

So far, his readings have been super, and I haven’t felt “that” internal sensation of butterflies on amphetamines due to a deathly low or ridiculous high reading for almost a week now!  Lance has had only 2 hypos this week! Both were treatable, and I didn’t feel like I needed a session with Dr Phil after he had recovered!

 His endocrinologist would like him to eventually strive for readings between 4mmol/L and 8 mmol/L. I am elated to say that he isn’t far off these levels, and is achieving amazing readings without a great deal of effort! Fantastic basals, Doc. Thanks a bunch.

Lance chose a uber cool, steel grey Medtronic Paradigm pump which he has adjusted to wearing without any issues whatsoever. His initial fears of “What will it feel like to sleep with it?” are thoughts of the past. Despite the Pump Education being very swift, I have emerged feeling very confident with site changes, and bolusing for meals and snacks.

My “Bible,” Fats and Figures, by Karen Daly, is never far from sight; it has proven to be a fantastic reference book for counting carbs.

In the past hour I have spied used test strips in the bed, on the floor, in the car,and even in the washing machine! Never has there been so many fingerpricks performed! The house is untidy, but not dirty. For once, I don’t care in the least. My son is calmer, more stable, less vulnerable, and radiating pure happiness, without a mention of a headache or aching legs. No more guzzling water or lying listlessly on the sofa…

Finally, he’s just Lance.

Here’s to the life you were meant to have, sweetheart. This is how seven-and-a-half year old boys are supposed to behave and feel.

Our sincere thanks must go to Louise from Medtronic, Dr C and the Staff at the Mater Children’s Hospital.

 You all played intergral roles in getting Lance off the syringe diet, and pumping his way to carefree, less chaotic days.

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DAMMIT Diabetes…..

Just wanted to let you all know that I am still alive, but I am terribly sad.

Lance got some blood work back that was “concerning.”

We have more tests this week-it appears that his kidneys are excreting lots of what they shouldn’t be. I don’t know which kidney, or if it’s both..hence the reason for further urgent testing.

Nothing can ever prepare a parent for the day when your endo, whom you know so well you consider a friend, can’t look you in the eye whilst giving bad news. I had already caught a glimpse of the results, the numbers marked in red with ABNORMAL emblazoned across the page. My heart was racing double time. I studied his face, searching for an explanation, only to have him plant his eyes into the ground, whilst he spoke.

Anyway, I can’t write too much more. I just wanted to feel like I hadn’t lost touch with the world. Diabetes 24 hours a day is very consuming and toxic. I needed to know that you all are still soldiering on.

As soon as there is some news to give (Tuesday EST) I will certainly post to let Lance’s friends’ and family know his health status and what the future holds.

“But he looks so healthy!!!” a Diabetes Educator exclaimed as she read the endo’s scrawl. She was organising urgent tests/appointments for this coming week. I looked at her incredulously, and silently walked out of the room. His little hand pressed in mine.

The rest is a blur. Just trying to get through minute by minute at the moment.

Ironically, last night, Lance said to me ” Mum, if they could take Diabetes out of my body and put it in yours, I would forbid them to do it.”

“Why sweetie?” (I have always told him, if i could, that I would swap our situations in a heartbeat.)

“I can handle Diabetes, and somehow, I don’t think you would do too well.”

How can someone so young, get it so right?

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JDRF Australia Joins FACEBOOK.

There are many groups that are available to people with diabetes, parents with a child who lives with diabetes, or simply offering support to an organisation devoted to Diabetes on Facebook.

Up until now, I have recruited members to JDRF International and I am a proud member myself.

However, I am even more proud to announce that our pet charity, JDRF Australia has just set up their own group,that is devoted to providing and receiving support on Facebook!!

Juvenile Diabetes Research Foundation Australia

http://www.facebook.com/group.php?gid=9522514959

Why not show your support by becoming a member of JDRF Australia?

Lance is a passionate and devoted member of JDRF, and has raised almost $6000 in the past 3 years through selling Jelly Baby Merchandise each May, and providing donated prizes to the Annual Brisbane Gala Ball. He is also somewhat of a media star -he has passionately spoken to numerous journalists and radio announcers. His heartfelt and beautiful words have melted the hearts of our community. Many people of all ages have emptied the change from their wallets and contacted JDRF Brisbane, asking how the can make a contibution on Lance’s behalf!

 He is so proud of his title and role as a JDRF Youth Ambassador,  He wants to help find a cure not only himself, but for all people who have Type 1 Diabetes.

You can support Lance personally, or the other 140 000 Australians that suffer from Type 1 Diabetes. Simply click on this link below, and show your support to the organisation that provides the very best research and funding to scientists in Australia.

http://www.facebook.com/group.php?gid=9522514959

Considering it is also approaching the end of the financial year, you may like to make a donation to JDRF Australia. All donations over $2 are tax deductible. JDRF will happily provide you with a receipt to include with your tax paperwork!

Since Lance was diagnosed almost 6 years ago, there has been much progress made, and we are so much closer to finding THE CURE. This could not have been achieved without the kindness and generosity of people who want children like Lance to lead a life without injections, fingerpricks, following a restricted diet, long term complications and ultimately, never experiencing a real “childhood.”

You can also leave a message or an enquiry on the JDRF Australia Facebook Group, and a member or advocate will be delighted to provide advice and share their experiences.

If you know someone that could benefit from joining the JDRF Australia Facebook Group, please pass the link onto them. To our many international friends and readers, if you wish to say G’Day to the fantastic group of people who have given us hope and love, and instilled courage and confidence in Lance, it costs nothing to become a member of the group. It costs nothing to leave a comment. We would love to hear from you!!!

Any donations go directly to providing the best research in the country. You can even find out how to become an exclusive member of JDRF Australia via the Facebook page!

The page was established only one day ago, and it would be a fantastic to see member numbers rise from Why Did The Insulin Die readers, and friends of Lance 🙂

He is one little boy who is determined to make a difference.

Your support and assistance is always appreciated.

Love and Jellybabies!!!

Kate (JDRF Australia Advocate) and Lance (JDRF Australia Youth Ambassador.)

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Sugar Overload.

Diabetes and I have been at loggerheads ALL week.

This is the first time I have had a chance to write anything for days. Lance has had one of his worst weeks in his diabetes history. I simply don’t know where to begin.

I actually meant that, I don’t know where to start.

Okay..well. He has 70 new holes in his fingers since I last wrote. He looks like he has had two small teething puppies chewing on his fingers for hours on end. For the first time ever, he is baulking at having tests. Because it hurts, and there is nowhere left on his fingers left to test. I have to move to the base of his thumb (the fleshy part on his palm) to test, which has gone down as well as a bunch of lead balloons.

 

Instead of being “Hypo-boy”, he has turned into a walking toffee apple.

All week long, Lance has been been living in the 20mmol/L vicinity.  That’s the roughneck part of Diabetes town. Really hard to escape unscathed. I have thrown insulin pens in the bin, and replaced them with brand new ones directly from the fridge. Nup..the insulin wasn’t losing its potency. The due date isn’t until September 09. It’s NOT the insulin.

So it must be Lance. Something has gone beserk inside his body. He is well, fit, and shows no signs of infection or sickness. Growth spurt I hear you say? Maybe, although the last one has only recently died down.

I made a long appointment with our GP to discuss what to do. I can usually titrate and tinker around with a little bit of Novorapid here and there, however this week, he has been having 8 units extra, on top of his daily dosage. He has 16 units of Novorapid in total everyday, and it usually works like Pacman, gobbling up any tiny globule of sugar in his blood. It’s so good, it’s dangerous. Usually. This week, I could swear that I’m on Candid Camera..hey, have you guys done the ol’ switcheroo on us? Put water into his insulin pens?

No. Sigh. DAMMIT. It couldn’t possibly be something so simple.

Then there’s the never ending threat of DKA sneaking up and tapping us on the shoulder. I mean, Lance has spent so much time in the toilet this week, his body desperately trying to flush away this overload of sugar that has left him so weak, achy, restless and responsible for his washed out, puffy appearance.

Ketone strips line the inside of the bathroom bin.

I decided that I would introduce an extra injection at lunchtime. By crikey, I cracked the code.

The whole of yesterday and today have been just perfect. 7mmol/L or thereabouts all day through.

Only this afternoon have the rosy apples returned to Lance’s cheeks, He doesn’t look like a clammy, sickly addict from the ghettos of Diabetestown anymore.

Lance’s new pump is going to kick all of this seesawing to the kerb.

It’s just a matter of patiently waiting..waiting..waiting…

In the meantime, I am struggling with the many thoughts of what a week of constant hyperglycaemia has done to his organs, his arteries…I try to push these thoughts away, despite the toment and fear they instill in me…

It’s not like it’s raining cats and endocrinoligists here, either.

It’s not like I can get an appointment for tomorrow and plant the evidence of the past week in front of an endo and get some reassurance and explanations. I’d even settle for an understanding nod-of-the-head at the moment.

Our next appointment is over 2 weeks away, and I can’t do a thing to change it.

Despite my fears and mournful revalations, I am so grateful that the hurri(sugar)cane has passed.

The voracious consumption of water has died down.

I don’t have to cringe when the toilet flushes…Lance can actually celebrate the return of carbohydrates tonight, as they were enemy this week.

So now, we are up to 6 set injections a day.

7 new holes a week.

I don’t think I could bring myself to complain about a lil ol’ hypo for a while after this…

However, as usual, my boy smiles broadly at me, he hardly seems aware of the nightmare that was the past week. Despite the fact that he suffered, and had headaches, and legaches, and cried in sheer frustration, he is now at peace within his body.

Exhale.

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“Are All Diabetic Parents Miserable?”

Genevieve, a reader, was speaking to an aquaintence whom she assumed was clueless about Diabetes.

That was until they stung the conversation with this little prick of a generalisation.

“ALL DIABETIC PARENTS ARE MISERABLE.”

Genevieve was insulted and furious that a person could utter such words.

However, she has put the question to me.

Are we all a pack of miserable sissy la la’s? Are we whining, self absorbed, pity party-ing heart attacks waiting to happen?

I’m going to leave this short and sweet. You can see my reply to my readers’ question in My Comments.

Other Parents are welcome to help enlighten Genevieve too. Or even if you aren’t a parent, take a stab at what you think.  Thank you for participating.

 

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Diabetes Productions Proudly Presents “Unhappy Feet.”

Lance’s Dad and I have a reoccuring nightmare.

It has nothing to do with his love of Sci Fi flicks, or from disecting dead redback spiders.

Our nightmare is far, far worse than anything you get to see in an art department or in a special effects trailer on location of a horror movie.

It’s real.

It could affect our son.

We see live human evidence of it almost everytime we visit the Diabetes Outpatients Ward.

Severe Diabetic Foot Ulceration (photo taken before amputation.)

(Sorry…I had to start with the worst image first to keep your interest.)

This is such an overlooked issue, yet possibly the most sinister long term side effect of Diabetes.

Peripheral Neuropathy and Amputation.

Lance’s Dad and I both have our own fears for our son as he grows into an adult living with Type 1 Diabetes.

However this is one nightmare that we both share.

You see, our Happy Little Vegemite HATES shoes. Even as a baby, we have a photo of him, on his bouncer with his foot in in mouth trying to tear off his sock. If he had his way, he would roam the streets barefoot and fancyfree.

Lance has a shoe closet that would rival a Beckham offspring. He has different styles and funky coloured Nikes, Pumas, Filas. Canvas laceups, uggs, crocs, Spiderman light-up-when-you-walk sandals, thongs….you name it..he has it.

Last year, I presented a speech at an awards presentation. There, in the front row, was Lance, struggling, red faced and on the verge of a panic attack, trying to remove his offending footwear. (“They were suffocating my feet!!”) At the very best, sandals, uggs, and thongs are still high tolerance shoes for him.

I understand where this fear of being constricted comes from.

On Diagnosis Day, whilst drifting in and out of consciousness and in the firm grip of deadly DKA, Lance had to have a drip inserted into his hand. Except they put it in on a crooked angle. So they had to do it again. (His tiny body may have been lacking in insulin, but he certainly proved that he could crank up his adrenalin!!) His little legs were pinned down to an examination table to stop him from thrashing. His arms were held down, two doctors on each side, so that they could get a blood sample from other arm. His head was even held back by two nurses, to prevent any further chaos due to his furious determination to be released. His azure blue eyes penetrated mine, his face awash with confusion. I will never recover from that look of abandon, that, despite his hysteria, was clear for all to see. His mother who had lovingly held him and protected him for his first year on Earth, had suddenly handed him over to total strangers to hurt him and take away his freedom. Little did he know that I had no choice-these people saved his life.

(These memories are so painful, I had to stop typing momentarily and snuggle up beside my son, my ear pressed to his back, random tears soaking up in his sweet smelling pyjamas. I can still put my hand in his, and he will entwine his fingers with mine, even in the midst of slumber. I will fight to set you free from this my love.)

As a result of this, Lance still has issues with being being held too tightly, seatbelts and wearing restrictive clothing. Shoes are number one on the list of “Let me OUUUUUUUUUUT!”

The point of this story is that I often find Lance outside, frolicking wildly with his dog, with his feet bare. He will agree to come inside and put some form of protective footwear on, but only when asked.

He will climb the fence, and later come hobbling inside, tearfully acknowledging the splinters that he has newly aquired from chatting to My Neigbour. Even whilst I squeeze, remove and apply alcohol wipes to the affected area, it’s STILL not enough for him to remember for next time.

Today, I was absolutely exasperated when I discovered Lance teetering on the edge of the fence again, chatting to his friends who ride by daily. Shoeless.

After his recent discovery of long term complications, I told him to follow me to the PC. I googled “foot ulcers diabetes” and clicked on images. We both remained silent as we observed the gaping, festering holes in feet, toes barely hanging on by a thread, bones visible through the erosion of skin. We looked at each other knowingly. His eyes were like saucers, his mouth was slightly agasp. He gulped, and said to me, “These are adults’ feet. Look at my feet, Mum! I don’t have any holes in them! I’m careful! I know how to be responsible!”

However after he left the room, ten minutes later, I witnessed a scene that allowed me to exhale a sigh of relief. He was sitting on the sofa, climbing into a pair of socks, and strapping on his sandals. He then proceded to go outside. I hated showing him those images…Definitely a case of being “cruel” to be kind….

“People with diabetes are at risk of developing ulcerations and infections within their feet, which have the potential to require an amputation of the foot or leg. In fact, the most common reason a person with diabetes will require hospitalisation is for a foot complication. Even trivial or minor injuries to the foot have the potential to become very serious and threaten a limb.”

Despite Lance’s disdain for shoes, he has learnt to become very aware of good feet health whilst inside the home. He will always report the tiniest graze, or removal of top layer skin so that I can treat it immediately with antiseptic and cover it. (I have learnt that it’s beneficial to make extra fuss over feet injuries, I have even resorted to bandaging an area to psychologically entice Lance into understanding that feet injuries are something to be taken seriously, and that his feet are a very important priority when it comes to his overall wellbeing.)

I have had several debates with parents of other children who have Type 1 Diabetes about introducing feet care to them at an early age. Some have agreed and considered it to be a good preventive measure, others have seen it as just another burden to take on, and that their child was “too young” to worry about a procedure such as amputation.

Two years ago, I made an appointment at a podiatrist that specialised in Diabetic complications. Soon after, Lance had his first consultation with him, as I was concerned about a toenail that had been cut by a well meaning relative. (It was a little too “close” to the edge for my liking…) He also had a thorough examination of both feet, and had his toenails cut correctly.( I asked if he could demonstrate correct nail cutting techniques step-by-step, so that I could continue doing it the same way at home.) He commended me for bringing Lance to be examined, noting that if Diabetes Educators drove home the point of commencing meticulous feet care immediately after diagnosis, that so many tragic amputations in young adults living with Diabetes could be avoided.

Our podiatrist is on our health care team list-we see him annually.

His general advice for parents with children who have Type 1 Diabetes:

Examine your childs feet daily; on top, on the sole, between the toes and on the heel. Look for any cuts, blisters, grazes, discolouring or fungal infections.

Teach your child to dry in between their toes after showering, and have appropriate protective footwear at public pools/showers to avoid adding tinea or other fungal infections to the list of diabetic complications.

It may sound pedantic, and over the top, but a general rule of “shoes outside and socks inside” is doing your child the biggest favour.

Never treat corns, callouses or severe cuts yourself-ALWAYS SEEK MEDICAL ADVICE.

Non smoker, diabetic for 25 yearDiab insuline dependent for 13 years.
Left foot partial amputn 3 m25 years, insuline dnjjjjjjjj

Diabetic ulcers are the most common foot injuries leading to lower extremity amputation. Family physicians have a pivotal role in the prevention or early diagnosis of diabetic foot complications. Management of the diabetic foot requires a thorough knowledge of the major risk factors for amputation, frequent routine evaluation and meticulous preventive maintenance.”

Visit Diabetes Australia or go to their website to investigate their advice on caring for your feet. They also have online stores in each state; Diabetes Australia Queensland (DAQ) have extensive orthotic merchandise as well as socks and feetcare products.

Looking after your child’s feet now can protect them from peripheral neuropathy in later life. Good feet care, good feetwear, and good control of glycaemic levels is helping your child to become aware that an important part of having Type 1 Diabetes means being responsible for looking after your feet.

If your child does have a serious foot injury, treat it as an Emergency. Tell the ambulance or the hospital staff immediately that your child has Type 1 Diabetes. Extra care will be taken to ensure that the best possible chance of complete healing will occur.

The current motto of the week in our house?

We love NEAT SWEET FEET. 🙂

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