Archive for Diagnosis day

Numb November

After abandoning my blog for 19 days, I felt I had to address the emotional upheaval and grief that has tormented me this November.

Firstly, I must thank my brother, Janek, for taking hold of the reigns and stepping into the shoes of a writer who focuses on issues concerning type 1 diabetes. He is a truly wonderful person-if you would like to learn more about Janek and his adventures, his blog, The Engineer Also Muses is always an excellent read.

This has been our November.

1November 2008: Lance has shared his life with type 1 diabetes for six years. The first two “anniversaries” I was a sobbing mess. The following two, I made sure that we paid homage to the gift of insulin by having a small celebration. This year, the words, “When he’s been diagnosed for over five years, you’ll need to keep your eye out for complications” resonated through me each time I inhaled, and exhaled. We made a very bland vanilla cake. Balloons and celebrating the worst day of my life weren’t appropriate this year.

1-19 November, 2008: Lance’s symptoms of hot, burning feet at night have not improved or slowed down. Our GP wrote a referral to a Podiatrist specialising in Diabetes Complications. I was able to get Lance and appointment very quickly. We are in a ridiculous sleep pattern at the moment, with Lance unable to sleep until close to midnight, and struggling to wake up by 8.30am the next morning in time for breakfast and school. Not to mention my glassy eyes with unflattering bags big enough to accommodate an around-the-world trip. I have found myself falling asleep at my desk and even while waiting for the oven bell to sound. I don’t know how horses can bare to sleep standing..

We had an early appointment on a Monday morning. Despite my fatigue, I actually took half a valium tablet before we left, because despite EVERYONE telling me that there was no possible way that Lance could have Peripheral Neuropathy, my gut told me otherwise.

Gut was right.

Helen, the podiatrist, was actually two years my junior in primary school. Once we established that we knew each other as children, I told her about the past six years living with Diabetes, and the incredible year I got to spend with Lance before his diagnosis.

She began her examination. (As far as Lance knows, all kids have to have their feet checked to make sure they are growing properly. I don’t want to mention complications or anything negative until the most important day of the year is over.)

 November 23-Lance’s 8th birthday.

He climbed up on a modern black leather chair that was operated by remote control. He seemed suitably impressed. Helen asked him if he would mind wearing a blindfold, while she conducted the “prick test.” Lance, ever the perfect patient, nodded enthusiastically and held out his hand for the eye cover.

Helen examined Lance’s feet, and asked him to point to where the heat mainly came from.

“Do you get pins and needles often, Lance?”

“YEAH! Everyday.”

“When you’re playing on the floor or sitting with your legs crossed?”

“Sometimes when I’m on the floor playing Lego, other times when I’m at my desk doing homework. It just depends, really.”

“Okay then Lance. I want you to say “YES” or raise your hand when you feel a little sting. I’m just going to use something that looks like a nail file to see how sensitive your feet are.”

“Okay then.” He sat back in the chair, totally relaxed. I was on the end of mine, almost hyperventilating.

Helen began prodding the sharp corner of a file into the soles of his feet. She moved to the top of his foot, testing each toe, moving up to the ankle, and then slowly progressing up his calf. When she got to behind his knee, he was startled and let out a loud, “YOW!!!”

No feeling in his feet….

No feeling in his legs…

Helen couldn’t quite look me in the eye. She picked up a stainless steel tool that resembled a spiked vibrator. She went over all of the same spots that she did with the file. This time, he could feel the deep vibrations, and he had his hand up  the for almost the entire part of this examination.

Helen pressed a few buttons on the chair, so that Lance was sitting upright. She removed his blindfold.

She sat down on her chair, and clasped her hands together.

“What we’re looking at is Peripheral Neuropathy. I used a file on his feet and legs that I would use on an adult, so I was expecting him to be hollering. The good news is that he has feeling deep in his feet, as he responded very well to the vibration test. I’m going to conduct a doppler test, which basically means that I will be listening to blood flow in his feet to make sure it’s nice and strong.”

Peripheral Neuropathy. I was still in deep shock at watching my son completely unresponsive to having a sharp file dug into his flesh.

She smeared some blueish gel onto his ankles, and then endeavoured to find the pulse in his feet. A slight frown appeared on her forehead. My stomach was churning over and over, I had a pulse pounding away in my temples. Finally, she found a faint pulse close to his ankle.

“That’s a lot deeper than I would like it to be. It’s quite faint, and..well, we’ll do the other foot.”

What I had been secretly fearing was unfurling right before my eyes.

The pulse in the other foot was much easier to find, and it was strong, and the bloodflow was normal.

I asked what we could do about the symptoms. She said that she would write to Lance’s endo and ask whether he would prefer Lance to commence oral medication or to use topical preparations.

“I don’t want to scare you, but there has been damage done. The good news is that Lance spoke up early, and you pushed for a podiatry assessment, and now that we know that he has PN, we can work at halting any further damage, and he’s at such an advantage being on an insulin pump.”

“I need you to be totally honest with me, Helen, I want to know everything, so I can learn about the best way to help him.”

“I haven’t had a lot of experience in paediatric podiatry, with diabetic complications, I mean. I have some phone calls to make to your team, and some letters to write just confirming my findings.”

I gave her the phone numbers and addresses that she would need to pass the news onto Lance’s Diabetes Educator and endocrinologist. She clasped my hand.

“I am so sorry, Kate. It’s not the worst news, but it’s certainly not what you want to be dealing with at this age.”

Precisely.

We are now, more than ever, working hard to stay in the 4-8mmol/L range.

I have become even more of a Shoes-Outside-Always-Nazi, so much so that I loathe the sound of my own voice. I am constantly sweeping up small, sharp pieces of Lego. I loofah Lance’s feet in the shower every night to improve circulation. I massage with such force that my own hands feel bruised the next day. If I massage his feet the way I used to, he can’t feel it anymore.

Lance is taking a Vitamin B1 Supplement (Thiamin) which is supposed to allieviate the unpleasant sensations that accompany PN. I have to wait for his endocrinologist to return for holidays before I get his verdict about treatment.

I will write more about the reactions I have received about the diagnosis in my next post. I really just wanted to let people who have been kind enough to enquire about Lance know that despite my initial devastation, I’m trying to think of it as just an area of his diabetes care that I’m tightening up on.

The Staff at Lance’s school all wore blue on World Diabetes Day at his request. He wrote an email to his teacher, letting him know that it wasn’t a day for donations, but a day to create awareness.

My good friend, Amy Leverington, was chosen to climb Mount Kosciuszko (Australia’s highest mountain) on the morning on World Diabetes Day to watch the sun rise. Amy has achieved so much already, through putting together her funky anime blood sugar diaries, that have no smacks of Diabetes or bsl readings about them whatsoever. She is currently working on a unisex pump diary-stay tuned!

Our next big appointment is at the end of November-we have to pay a visit to an opthamologist.

My brother, Janek celebrated his 23rd birthday on the 16 November. I’ve already wished him a happy birthday, but I’ll do it again in writing..HAPPY BIRTHDAY, JANEK!! You can pop by The Engineer Also Muses and pay your regards if you care to do so!

One year ago, my dear friend Joel, who lived a life riddled with chronic pain and depression, passed away in his sleep at the age of 32. The pain of his absence is so strong, yet I experience a great sense of relief knowing that he never has to endure a painful, difficult day again.

Joel was buried on my the day that my own angel came into the world eight years earlier. 

Lance, my only child and best friend celebrates his 8th birthday on Sunday.

We’ll be sure to make the readers who have grown to admire Lance’s bravery and wisdom part of his special day, by having the birthday boy in person post about his special day.

November will always be rollercoaster of emotions. With my son’s birth, my life became fulfilled and watching him live was simply an extraordinary experience.

With my son’s diagnosis, he was robbed of his innocence and freedom. Again, my world had a huge shift, and it still leaves me rattled on the odd occasion.

And again, the new diagnosis of Peripheral Neuropathy in November. We arrested the condition early, but it has left me so exposed and aware as to the impact type 1 diabetes can have on the body. It’s a very hard concept to address, especially when you have others around you suggesting that it couldn’t possibly be Neuropathy. I would do anything to say “It’s all been a huge mistake! I was wrong!”  However, as a mother to Lance, and to his diabetes, I just knew. We went through enough wild fluctuations when he was three/four to know that his entire body had worked very hard to keep functioning for that very difficult stage.

Also, I am waiting for the return of my laptop. It is in Sydney, currently being repaired. I was lucky enough to borrow one overnight so that I could catch up on November.

I have all of my attention focused on The Birthday. I did good with getting what he wanted. I need to see the rapture in his smile to help me begin to heal.

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Neuropathic Night WatchChick.

I have had a hiatus from writing for a while.

Sigh.

Lance has some very disturbing symptoms, which I feel could be linked to peripheral neuropathy.

I know a seven  year old who has just experienced a hellish winter, due to numbness and terribly cold and  painful hands and feet.

For the past week, he has taken up to three hours at night to actually fall asleep, because his “feet are hot, they’re burning, from 1-10, it’s so horrible it’s a 10”. Massage, ibuprofen gives minimal relief. He finally falls asleep, but only out of sheer exhaustion.

His sixth year anniversary since diagnosis is ten days away.

I cringe as I think of all the wild fluctuations in his blood sugar levels when he was a baby/toddler.

I have an appointment for him tomorrow with his GP. I will be requesting further tests, as this is too real to be just a coincidence.

(I foolishly googled ‘type 1 diabetes hot feet night’ and landed on a site that made my heart sink.)

When I am massaging Lance’s feet, they are cool to touch. Tonight he had his feet up parallel to the fan, in an attempt to get some relief. His feet are spotless-he has no cuts or scratches. However, he frequently has pins and needles, at least once a day.

Some people knit or watch tv in their down time. I inspect every part of my son’s feet.

I am REALLY hoping for the best, but there’s a part of me that just “knows” that my boy is in trouble.

 

In the meantime, could you all keep him in your thoughts and prayers?

He’s 8 years old next month.

Eight..wow. It just hit me that he is still so young, yet he has been through SO much. He never complains, he remains upbeat and positive about having type 1 diabetes and he is so proud of his pump.

Anyway, I guess I just had to vent my fears.

I’ll provide updates as they unfold regarding his appointment tomorrow.

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When Sugar Was As Sweet As My Baby.

While speaking to my dear friend, Janek, a very old photo came into my field of vision. It suddenly hit me as to why I couldn’t stop staring at it. It’s one of “those” photos where relatives and friends shake their head in disbelief and exclaim, “But..but..he just looked so..healthy!!!”

Yeah, well..looks can be deceiving.

The day this photo was taken…Lance, his Dad and I were in New Farm, enjoying a day of exploring the plethora of incredibly original and funky stores that Upper Brunswick Street is infamous for. This photo was taken at a cafe by Scott, who couldn’t resist taking a snap of our gorgeous baby. We’d just had a fabulous lunch after a blissful morning of shopping in Sunny Brisbane.

( It dawned on me that I can barelyremember what it’s like to sit down and have lunch without worrying if Lance had consumed enough carbohydrates to match the insulin already injected into his body hours earlier. I can’t remember eating a meal without giving most or all of my food containing carbs to Lance, in a desperate attempt to lessen the chance of a massive hypo in the middle of a city.)

 Food, Insulin, Nutritional panels…my brain is an entanglement of numbers and percentages, with a twist of fear and uncertainty intertwining through more numbers, and more percentages.  

However, in this photo, Lance was only seven, almost eight months old. I treasure this image. It was when Scott, Lance and I were a tight-knit family. No Diabetes, no mysterious symptoms present, just joyous times each and everyday. I used to long for Lance to wake up, I loved his company so much.

I remember other diners’ catching a glimpse of Lance, (who had just woken from a nap) and they simply couldn’t look away. That had always been the way with my baby-you had no choice but to be fixated by his huge smile and natural charisma that was already evident, even at such a tender age.

 Not one person would ever have thought that given a few months from that day, this baby’s rosy cheeks would be sallow and chalk white, his sparkling baby blue eyes sunken back into his head, dull and lifeless, and his warm expressive face crumpled with agonising pain.

So, here’s the shot that breaks my heart, yet reminds me how blessed I was to have that one, amazing, perfect year.

(Those little fingers had never been hurt in anyway, only smothered with kisses.)

I still have my baby, but he has had to fight so hard to become the amazing kid he is today. I’m watching him sleep as I type, and I can still see that baby in his “big boy” face. My favourite sound in the world is my son breathing as he sleeps.

Out of all of Lance’s pre-diagnosis photos, this one comforts me the most. It doesn’t make me sad, or bitter, or crave for a life free of Diabetes. It only reminds me just how lucky I am to have my son.

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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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My Baby Has Type 1 Diabetes. Welcome Home!!!

Lately, I have had a glut of phone calls from people who know a family that are dealing with Type 1 Diabetes diagnosis, and for some reason, they end up with my details.

JDRF Australia estimate that there are 5 new cases of Type 1 Diabetes diagnosed everyday.

In the past weeks, I have spoken to mothers who have not slept more than an hour for two weeks straight, fathers’ who have had to pick up the pieces and continue running the household, and big sisters who are suffering in school because they are falling asleep in class from lack of sleep.

When Diabetes invades, it gives no warning, and it’s just like everything you have been doing for the past years with your family has to stop, and a new plan and system has to be installed to accommodate everybody.

I wanted to make a list for people who have just had a young child diagnosed, and who have been too overwhelmed with hospitals, doctors, drips and diets to fully grasp what they are going to come home to. I have tried to include some of the more challenging situations as well, as it’s always reassuring to learn that someone else has been through it before you!

Here it is..my very extended version of how to deal with some feelings and situations that often go unspoken.

 

*Obviously, your child will have been very ill before you were told to rush to the hospital. You may have washing to catch up on, general cleaning.. It is a fantastic idea (rather than flowers or gifts) if your family can join together to hire a cleaner, so that you at least can exist in a clean environment, without the everyday burden of housework.

*When your child is finally discharged from the hospital, it is a very overwhelming experience to walk into your home-pre diabetes. Diabetes Educators and nurses are encouraged to have the family involved as much and as soon as possible with finger pricking, giving injections, and taking care of your child, just as you would as if you were at home. The constant visits from your Diabetes Care Team and family often distract you enough that you haven’t even come to terms with the fact that your child has been diagnosed with a chronic illness. As soon as you can, make an appointment with your GP, as you will no doubt be in severe shock, and only just beginning the grieving process. Your GP can offer you lists of Support Groups in your area, Diabetes Educators, Counsellors. If you have more than one child, it really is imperative that the main care giver (at least) is able to vent and learn some coping mechanisms with this new full time responsibility.

*All hospitals in Australia ensure that a newly diagnosed patient visits or contacts Diabetes Australia in their state, and becomes a member of the National Diabetes Services Scheme. The NDSS will provide huge discounts of your everyday requirements, such as test strips, ketone strips, and syringes or needle ends for insulin pens. Often, major diabetes drug companies will give families a glucometer at no charge-obviously, you weren’t budgeting for all of this new equipment. (We are so lucky living in Australia, test strips are often no more that $1 for a pack of 100, and syringes and needle ends are free to those with a NDSS card. You will receive a card whilst at Diabetes Australia, or with your order.) When you arrive back at the hospital with bags full of new and foreign items, a diabetes educator will sit down with you and run through how to load an lancet device, or how to get a glucometer ready and waiting whilst you get a sample of blood to test. Ask as many questions as you need to- that’s what they are there for.

*Most endocrinologists who are looking after your child’s insulin requirements will offer their mobile number or a private number, so that you can administer insulin doses yourself, whilst still knowing that your child will most likely be safe under the endocrinologist’s orders. NEVER FEEL AFRAID OR LIKE YOU ARE GOING TO WAKE UP THE DOCTOR: the endos often take it in turns week by week to answer the phone-they are well versed and non plussed regarding a panicked query at 2am with a 2.3mmol/L reading. It is much better to call the doctor, than to rush back to the to the hospital and put your child (and you) through more trauma.

* Your endocrinologist will be able to fill out a form for you called a Treating Doctor’s Report. You will have to fill in one too, and upon returning them to Centrelink, you are entitled to the Carer’s Allowance, which assists people with high maintenance Chronic illnesses-like Type 1 Diabetes- with medications, healthier choices at the supermarket, and emergency after-hour doctor fees.

*Were you not told about about a product called GLUCAGON whilst in hospital? If the answer is no, make an appointment the very next day so that you can get a script from your doctor. Most children are in the Honeymoon Period when they are diagnosed, so the risk of a severe hypoglycaemic attack is quite rare. However, they do happen, and the Honeymoon Period will eventually pass-whether it be days or months after commencing Insulin Therapy. You need to ensure that you have the “orange plastic box” with a prefilled syringe of sterile water and a vial of powder inside. There are clear and concise instructions inside the lid of the box, and also paperwork with detailed information included in the box. You will need to have this product with you, wherever you go, or somewhere safe and accessible in the house. IT HAS SAVED MY SON’S LIFE ON MORE THAN ONE OCCASION.

*Store all of your insulin away in the fridge as soon as possible. The vials or pens that you will be using on a daily basis should live in a cool area, preferably inside a dark coloured, plastic snaplock box. Find a good place where every member of the family can reach the insulin,glucometer, test strips and lancets, and it’s really helpful to keep it all together in one larger clear box with a lid. Insulin not being stored in the fridge has an effective life of 30 days. Any longer, and it is very obvious that the insulin has lost its strength, as you will have high numbers bouncing all over the place.

*You will need to learn to travel everywhere with a hypokit, either in a backpack, or in the case of a Mum with a young baby, you will need a huge nappybag with lots of zips and pockets. A hypokit should contain: A Glucagon Kit, ample jellybabies or jellybeans, fruit juice in a box with a bendy straw, some plain biscuits and muesli bars to give your child after you have treated their hypo, a sachet of sugar, honey and jam, (in case you have to rub into the cheeks of a baby who is hypo and screaming,) an identification card with your child’s photo and name and your contact details, clearly stating that the child has TYPE 1 DIABETES. Your endo, GP, educator and spouses details are handy to have speed-dialled into your mobile phone in emergencies.

* You will have to have hypokits around the home, too. Even if it’s a jar of jellybabies on top of the pantry, or a shelf in the pantry devoted to treating low blood sugar, that everybody in the household knows is exclusively for hypoglycaemic emergencies.

* You will need to find a suitable bracelet or necklace and get your child’s name, contacts and condition engraved into it. There is a fantastic Australian organisation called diabetes-ezy who have really modern, funky designs,(especially for young boys!!) rather than the clunky, unflattering Medic Alert handcuffs of ten years ago.

* When your child is first diagnosed, and commences insulin therapy, it is a really, horrible and stressful time, as blood sugar levels can fluctuate from 2mmol/L to 30mmol/L within an hour-even when little food is consumed. It’s a lifesaver to buy a cheap exercise book, and make notes about what was happening when a hypo/hyper occurred, if there was any outside stress, illness, excess energy expenditure, too many carbohydrates or too much/not enough insulin given. Eventually, you can start to piece together the puzzle and work out the warning signs of a potential emergency, and learn about your child and their Diabetes. (It does seem impossible at first, but speaking from the hugest Doubting Thomas there is, eventually,a bright, shiny lightbulb will appear above your head.)

* It is particularly annoying having to write down every finger prick result. A lot of logbooks designed for recording blood sugar readings never have enough room, and end up in a huge, confusing mess.  Again, an exercise book with a pen attached is initially handy to record the number on, then, at the end of the day, you can record ALL of your child’s results into a program such as www.sugarstats.com . You can then print out the results every 3 months to give to your endo.

* There is no denying it..Diabetes causes strain or stress even in the strongest of relationships/marriages. Don’t let Diabetes take over the family..it is so easy to say this now of course, but back when Lance was diagnosed, all I did was watch him breathe, read every book from the library about Diabetes, collate numbers and averages for the week, sit in bewilderment asking myself over and over again why this could have happened….I can see myself cramming as much information as I could into my head, and my marriage slipping away everyday without me even noticing. Find time to talk to one another, even if you are so exhausted that you can barely think, even 15 minutes of strictly non-diabetes talk can do wonders. It’s still important for your partner to feel as though he/she means exactly the same to you before the diagnosis. If anything, they are more important now than ever before! It’s just so incredibly important to TALK.( And drop the D word for a few minutes each day.)

* It’s vital that if your child needs to see an emergency doctor/pharmacy/dentist that they are informed promptly about your child’s condition. It basically has to sound like this. “Hi, this is my son, he is 7 and he has had Type 1 Diabetes for 5-and-a-half-years. He has regular insulin injections.”

* I have always made people very aware of Lance’s condition. I feel that no matter what age of the child, that it is really important that people know that your child has diabetes. Your child will feed off your confidence, too. (It’s almost at the point where I think Lance is proud of his Diabetes, as he will often engage in conversation with complete strangers and tell them about his adventures living with the Beast.) In older children, who remember a world without Diabetes, it can be more difficult, but in all seriousness, you are protecting your child by educating them to be proud and say “I have Type 1 Diabetes.” It could even one day save their life.

* Many parents ask me, ” I am never going to have my life back again, am I? or “When will I start to accept that this isn’t going to go away?” The good news is that you will most certainly have your life back again. It is often helpful to look at Type 1 Diabetes as a new lifestyle, more than a potentially life-threatening chronic condition. You do what you always did before the diagnosis, and ensure that your child receives their snacks, meals, insulin, exercise-along with lots of love, hugs and Mum/Dad-time. Naturally, your garden may have a few more weeds, or you mightn’t have your floor mopped until it sparkles everyday, but you do what is important first, and ensure that your family realises that they have extra responsibilities now. The other question is a tricky one. Recently, after almost 6 years of living this regimented life, I got really angry, and I was furious that I wasn’t “allowed” to have a minute away from Diabetes. There is no holiday. There is no weekend off. Diabetes Burnout is totally normal and very common, and can re-occur at any stage of being a carer. You aren’t a bad parent for wanting you old life back. You aren’t a weak person for feeling guilty that your child has your genes. You aren’t a terrible person for wanting to scream everytime you get a horrorshow reading on the glucometer. However, after a while, when levels start to become more regular, and life begins to develop a familiar pattern again, the hypos will settle down, and the nasty surprises become a rarity, you can suddenly recognise that “WOW! I have some control back!” Unfortunately, it does take time, and it takes a lot of work. With support, and there is SO much available, you can get through the sticky patches and get back on track again.

* Your child may be very anxious about resuming school, after being diagnosed with Type 1 Diabetes. Ask your paediatrician if he/she will come along to your child’s class,(most are very obliging,) and explain how sick your child was, and give an age-appropriate explanation of what Diabetes is. They will make sure that the teacher is thoroughly aware of looking out for symptoms of hyperglycaemia or hypoglycaemia-as will you! Parents often fret more than than the child about returning to school with Diabetes! In fact, many children are very interested to learn about Diabetes or witness a hypo or a fingerprick! A child with Diabetes almost receives hero status for being so brave to have to stick needles into themselves all day long. It is a responsible thing to do to write a letter to the parents of your child’s classmates, and really drive home the point that “Lance had no control over developing diabetes, in fact there was nothing anybody could do to stop it from occurring.” At 5 years of age, Lance was the unfortunate victim of being the only child in his preschool class to be un-invited to his best friends birthday party. When confronted, the parents admitted that they were too wary to ask me about what to do about cake, soft drinks etc, or if the party was ruined should an ambulance be called. Inform parents that you are going to be with your child at events such as birthdays,sports days, get-togethers,  and that you will be constantly monitoring their levels-insulin-activity ratio. A birthday is a reason to get down and funky with some serious birthday cake; there is NO reason for your child to miss out. Chances are that they have been so busy enjoying themselves that they actually needed some carbohydrates anyway, and even if they are at the higher end of “normal,” I can assure you they will not mind in the least at receiving a unit or two extra of insulin!

* It’s a positive move to use words and phrases like..”Lance had a hypo today, didn’t you sweetheart? We worked as a team to get you feeling well quickly though, and we had you safe again very quickly.” rather than “Oh God..Lance had a serious hypoglycaemic attack-it was a really bad episode.” Same deal applies for “Lance is a little high today, we’ll just have to keep a very close eye on him today, lots of water and maybe some jumps on the trampoline, buddy?” rather than “Get the ketone sticks, get him to pee on a stick everytime he goes to the toilet, his blood sugar is through the roof! This has been a really bad hyper-I wonder what he/we did wrong?” Kids actually do panic when they hear their parents speak even in hushed tones about serious issues. Stress is only going to accentuate the situation. Try to remain as calm as you can and re-inforce that your child is going to be fine. Let them know that you have everything needed to get their blood sugar level back to a safe range again, and that they just have to take it easy and relax. “Your level is bad/good” should be replaced with “Your level is high/normal/low.”

* The best thing that ever happened out of Lance’s diagnosis was discovering the amazing, inspirational team of people who devote their lives to working for the Juvenile Diabetes Research Foundation. (JDRF Australia.) Lance has had so many incredible experiences as a result of being a Youth Ambassador. He has met with politicians, and even travelled to Parliament House in Canberra. In fact, after this Jelly Baby Month, Lance and I have raised $6000-funds that go directly towards finding a cure. JDRF have a fantastic website, and bi monthly magazines that come out with the latest news regarding the hunt for a cure. Lance has featured in national and international publications, and he has become a well known face in our city. JDRF provide kids with Type 1 Diabetes with the tools to become powerful public speakers, they have enhanced confidence and strive for the best life they can live. Contacting this organisation is possibly the very best thing you can do for your child. It costs very little to become a member, and the benefits received are priceless.

* This is still an issue that I have great problems dealing with. For the first 5 years after diagnosis, I had huge anxiety attacks about leaving Lance with someone who doesn’t have “the trained eye.” By joining a local support group, you are going to meet other parents who know your situation only too well. Often, if it is a couple’s wedding anniversary or there is another important event that is not child friendly on the calendar, other parents will be only too happy to watch your child for a few hours. Of course you are going to be a nervous wreck, and be sneaking off to make check-up calls, but at least you made it out the door without a glucometer in your handbag! Often a family member who has gathered the major concepts of the too low-give sugar, too high-give water and “call me ASAP!” are great standbys also. The first time I left Lance with others, I had to end up coming home, because I was so distressed and distracted, but I have since learnt that he would be horrified to see me bursting through the door if he knew I was supposed to be out enjoying myself with friends!

Also, words like “amputation, kidney failure, heart disease, blindness or coma” should definitely not be used in front of your young child as examples to explain the serious nature Type 1 Diabetes can be to those who aren’t “in the know.” Kids with Type 1 Diabetes often lose a big part of their childhood from going to appointments, having blood taken from them regularly, dealing with sick days, missing out on camps, not having a sleepover without you on the sofa bed in another bedroom, sitting out a soccer game because they are low… They really don’t need to know about any of these terms until they stumble across it themselves. They have quite enough to deal with as it is.

* There are times when your child is sick, or very vulnerable, and you mind trails off, wondering if or when complications are going to set in. A nurse told me only 24 hours after knowing that my son had Type 1 Diabetes, that at least I could be assured that I would have a “good 15 years left with him.” I returned to his cot and cried and sobbed, envisioning losing my son at 15 years of age. When the head nurse hurriedly appeared after learning that there was a mother in great distress, I was so paranoid and confused that I actually made her show me written evidence to prove that a child with Type 1 Diabetes can have a long, happy and adventurous life. I can understand now, that even in the six years since Lance was diagnosed, that there has been SO much progress made- there was a time where maybe that nurse was told to give parents of newly diagnosed babies such a ghastly “timeframe”. Nevertheless, I was informed the next day by the Head Nurse that she had been given a crash course of Type 1 Diabetes for the 21st Century!!!

*Whilst in hospital, most Diabetes Educators or nurses will ensure that you speak with a Dietician. Sometime before you arrive home, you are going to have to get someone to go to the supermarket and buy essentials. You will learn why carbohydrates will become your child’s new best friend, and all about the Glycemic Index. It won’t take long before you know what works well for your child and what to avoid. Some kids have huge fluctuations if they drink cow’s milk. Lance can eat 5 mandarins and his blood sugar will not budge. A perfect example of how each child and each case of Diabetes is different.

*I am often asked what changes I have had to make to Lance’s diet since he was diagnosed. As an example, (and as as he has become a robust, ravenous 7-and-a-half year old, who is going through a MAJOR growth spurt,) I have listed what he has eaten today.

A nutritious example of a diet complete with calcium, 2 pieces of fruit, 5 servings of vegetables, and plenty of wholegrains for Lance would be:

Breakfast (after finger prick and insulin dose)

A serve of rolled oats (oatmeal for our American friends), a watered down glass of Apple Juice, and an apple cut into segments.(skin on.)

Morning Tea: 10 grapes, 2 plain biscuits and a tumbler of water

Lunch: 2 slices of grainy thick bread, with pizza vegetables and grated cheese and grilled with fresh herbs, a glass of milk.

Afternoon Tea: Slice of Gluten Free Apple and Walnut Tea Cake, glass of apple and pear juice.

Dinner: A serve of protein as big as the palm of my hand..(chicken breast, white fish, lean steak) accompanied by roasted starchy herbed vegetables eg potatoes, pumpkin, sweet potato, carrots, corn…and/or steamed green beans, broccoli. A Tub of yoghurt for dessert or home made Apple Crumble.

Supper: Water Crackers, cheese cubes, sultanas and 1 square of chocolate.

As you can see, there is a LOT of food consumed throughout the day! You will quickly learn that apple juice instead of orange juice will keep your child’s blood sugar from soaring to 12mmol/L and more likely keep it at 7/8 mmol/L and for a longer period of time. It’s really important for your child to go to bed with a blood sugar level of no lower than 7mmol/L. I am happy if Lance is 7.5mmol/L just before he closes his eyes. Night hypos or “Nypos” are frightening and horrible, not to mention dangerous and even life threatening. I have had people question giving Lance a square of chocolate before bed… Chocolate actually has a low to moderate count on the Glycemic Index, and it is great to be able to reward him for taking such good care of his body all day long! I can’t emphasise how important it is to give your child supper before bed, even if they did a great job with their evening meal.

* At my first formal Diabetes “class”, we were all told about how people with Diabetes will take longer to heal regarding skin abrasions/illnesses. Lance actually sneezed during that session. Everybody looked at me like I was supposed to instantly whip out disposable paper face masks… Sure enough, later that evening, Lance’s BSL was HI and his temperature was through the roof. He was coughing and crying and I sat down beside his cot and imagined that it was going to take 6 months for him to heal from a cold. He had fully recovered in 4 days. If he falls and grazes his hand, some extra care with some antiseptic lotion and he has gorgeous new pink skin a few days later. Diabetes is often about making smart(er) choices, and taking extra care. Most issues can be dealt with just like a person without Type 1 Diabetes if you use common sense and stay aware and alert.

*My hugest fear as a parent and carer of a child who has Type 1 Diabetes….Gastro Viruses. Ohhhh… I am already out in a cold sweat just thinking about it. Here’s the deal. If you child is a toddler or very young, and suddenly sends a huge cylinder of vomit flying through the air, everything is going to change from that moment on. You are going to have to have your glucometer strapped to you, and wait for whatever the last insulin dose you gave to wear off. Expect a hypo-strong words, I know, but it’s reality. After being sick, little kids, and sometimes even older children are not going to want anything going near their mouthes. Panadol, ice, glucose tablets will all get thrown back at you. They are naturally afraid of such a repugnant reaction to happen again-so they will not eat, even if you cry, beg, plead. If you are on an insulin pump, the Gastro Bug isn’t as scary. However, if you are doing it old school via insulin pens or syringes, you are going to have to contact a member of your Diabetes support network to help you work out how much insulin to give. Even though your child is sick and not eating, INSULIN MUST STILL BE GIVEN. You just have to give less of it, more frequently. If you start getting high readings, and your child is hot and crying, press a ketone strip into their nappy, or if they are old enough, explain how to use them. If you see colour changes in the ketone line, you need to go to hospital immediately. Diabetic Ketone Acidosis (DKA) is a life threatening illness that occurs when the body starts to self-cannibalize itself, as a result of not enough insulin. Your baby will have to go on a drip, to ensure that they do not dehydrate, and most kids recover pretty quickly when a vomiting retardant such as Maxolon is given through the drip. However, be prepared for psychological issues for a few days. Some kids are scared to eat again in fear of repeated episodes of vomiting. Start with baby steps-ice chips are great. If they are happy with those, you can move up to Lucozade ice chips. Then sips of lemonade, or a piece of toast…eventually they will gain their confidence back. My family are all nurses, and love to tell me about how their is wards full of people in hospital with stomach viruses that are unshakable for 2 weeks….I tried to be a superhero once, and sit through a week of crying, fingerpricking, irrational behaviour, triple the amount of washing to do, checking temperatures, giving hourly insulin…it’s just a nightmare. I know now, that if it’s going to happen, and there isn’t any signs of recovery within 24 hours..off to hospital we go.

*On that note, it is really great to teach your child to learn to become a vigilant hand-washer. Without encouraging obsessive compulsive behaviour, it’s good to get your child to wash their hands before they eat, have their own individual portions of food, wash their hands if they have patted the cat or the dog, and an antibacterial wipe over your child’s hands after being at the supermarket/doctor’s surgery/pharmacy can never hurt, either.

*Almost six years on, I have learnt so much..and I’m actually proud to say that I worked most of it out by myself. There is nothing more heartbreaking than jabbing a baby with needles, and sending yourself around the twist as you watch them breathe as they sleep. I got there. I have a child who stands almost up to my shoulders to prove it. He’s as strong as an ox and as healthy as a horse. Don’t forget to enjoy your baby, even if you have to deal with Type 1 Diabetes. They are only so little for such a short time..they are still perfect little blessings that need to be saturated with love and care. You will get there too! I already have a little man who smothers me with love and hugs. I guess, even throughout the thousands of needles and fingerpricks, he figured out that I love him unconditionally.

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Dealing With A Disasterous Duo- Diabetes And Depression.

In November, 2006, I had the extreme honour of travelling to Canberra with Lance, other children and adolescents with Type 1 Diabetes, their parents and our incredible JDRF Australia staff. We were attending a function called “Kids in the House“, an event that drew national media attention and stained the pristine interior of Parliament House with a chronic illness that is so often misunderstood. By the time we had left, hundreds of fingerpricks had been performed, dozens of real life stories were told, and thousands of tears were shed.

Lance was only 5 years old at the time, and had a blood sugar reading of 23.8mmol/L during the procedings. He was slumped on my lap, his eyes were barely open, and I had to do everything in my power to prevent him from yelling out in frustration during the speeches. Thankfully, he drifted off for long enough so that I could take some photos, and actually clap eyes on the previous Prime Minister, John Howard.

However, my mind was consumed with some of the most powerful and emotive words that I had heard expressed from a young person with Type 1 Diabetes. A then-17 year old teen, with gorgeous dark curls spoke candidly and honestly about an issue that is rarely discussed in association with Type 1 Diabetes.

Gareth Eldershaw opened the eyes wide shut of the parents, politicians and many VIP attendees.

He stood alone, his eyes clearly carrying burdens that you would not expect to see in a 17 year old boy. He spoke about his struggles with a ten year stint living with Type 1 Diabetes. That alone, was heartbreaking, especially when my own son doesn’t know a life without it. However, no one expected him to reveal his devastating and perilous journey with severe Clinical Depression.

Gary’s face was burnt into my mind for the best part of the next week, and the words that he had shared had made me ache with despair for him and his family, AND for the 140 000 Australians who live with the cruel and misunderstood condition that is Type 1 Diabetes.

In recent times, www.whydidtheinsulindie.com has been inundated with parents, carers of teenagers with Type 1 Diabetes and other chronic illnesses and people who are hiding behind their computer screen who are desperately searching for a phrase, or a sentence that they may identify with, or match the symptoms that they are experiencing. I knew that I wanted to emphasize the trauma of depression as well as coping with Diabetes (in particular), because it is so overwhelming, infuriating and debilitating for the sufferer and the caregiver. Two silent, unpredictable conditions that bring out the worst in each other.

I also knew exactly who to ask for help. 🙂

Gary was more than happy to relive his many years living with Type 1 Diabetes, and he had summoned up much bravery and delved into private and difficult territory by talking about the impact that depression has had upon him, his family, his friends, his diabetes and his future. Gary’s mother, Annette, has also contributed to this interview by recalling some of the darkest times in Gary’s battle with the bottomless pit that is depression.

The information that Gary and Annette have shared is recounting a part of Gary’s life that hopefully never resurfaces. It is their hope that by reliving these memories, other young people and loved ones can feel assured that they aren’t alone, and know that there is hope for better days ahead.

Kate vs Gary-waxing lyrical on all things pancreatic, systematic, traumatic, psychiatric…

When we last saw each other I recall that you were 17-ish. How old are you now? 19 years old.

What is your Starsign? November 24, whatever that is. ( Lance’s birthday is November 23, which makes you a Sagittarius!)

Are you still studying? Nearly finished a TAFE Diploma in Performance Music. The Course wasn’t quite what I expected so I haven’t gone back. I’m having some time to get my head together for a few months & doing intensive drumkit practise, preparing for band gigs (One Way Down .. see me on myspace) & doing lots of composition for band & personal satisfaction. I’m really getting into transcriptions of other’s songs.

What special talent do you want to share with the world? (In other words, career hopes?) Famous Heavy Metal Rock Drummer!!!

Do you still have your tonsils? Yes…

Ever tried sushi?? Not a fan…

What’s on your iPod at the mo? Every genre imaginable from renaissance choral music ( I went to Europe last December with my old school choir – sing lots of old music & some contemporary Australian compositions – great fun) also many tens of thousands of contemporary music/songs everything from meditation Enya stuff to Philip Glass to metal (lots of metal.)

I can still see you standing at the podium in the Great Hall at Parliament House. I was seated next to a VIP; she was a Secretary for a Member of Parliament. Whilst you spoke, she clutched hold of my arm, lost all control of her etiquette and sobbed openly, using my dress to mop up her tears! Not that I could see that well, (tears were spilling down my face..,) but there were 10 year old kids, blokey, rugged fathers, cold, pretentious politicians and the beautiful JDRF staff, all seated, transfixed by your every word, all with crumpled Kleenex embedded in their palms. Between the VIP and me, we were both openly weeping towards the end of your speech. For me, my tears weren’t a result of pity or empathy, but more because of your gentle, humble energy and your intense inner strength. Your courage to provide awareness and share painful memories to a roomful of people about depression – and that despite the fact that Lance was asleep, how fortunate he is to have a male role model to admire. Your gorgeous Mum sent me a copy of “the speech” which has again left my eyes hazy…

Kids in the House Speech- 1 November 2006..

My name is Gareth Eldershaw, I am 17 years old and I have had diabetes for over 10 years. Its been 3 years since the first Kids in the House and the message is still very simple. I need a cure for type 1 diabetes. All the kids in Australia who have type 1 want a cure and so do their parents and families and friends.

Diabetes hasn’t just wrecked my life, but everyone’s in my family as well. I have just had my 10 year anniversary of my diagnosis of type 1 diabetes. Maybe that’s not a long time in some people’s lives – but for me it means I just don’t remember back to a time without diabetes. Before I was diagnosed my family had planned a trip to Africa. In the end we still went, but my parents were terrified in case something went wrong. We tried to do cool things like other families but nothing is spontaneous with diabetes, everywhere you go you must take needles, insulin, glucometer, food.

The worst bit is the needles. Over and over day and night. They never stop. Now I am a teenager, diabetes is more of a pain than ever. It is with me all the time. I try to stay positive about a cure coming soon but I worry about long-term complications.

Like all teenagers I have struggled with the pressure of our time, but living with type 1 diabetes and all it involves makes it worse. I really went off the deep end last Christmas.. I developed severe depression and nearly 12 months later I’m still battling this condition, having medication and regular psycho-therapy. Did you know that almost one in four young Australians living with type 1 diabetes struggles with long-term depression? No one wants to talk about this but it’s yet another complication of diabetes.

I’m old enough to really understand and fear the other complications that might come later….

These include: retinopathy, kidney failure, amputation, heart disease, stroke…

Heart disease accounts for 50% of all deaths among people with diabetes

Diabetes is the leading cause of blindness in adults 20-74 years old

Diabetes is the leading cause of kidney failure, accounting for over 40% of cases each year.

Over 40% of people with type 1 diabetes develop severe kidney disease by the age of 50.

About 60-70% of people with diabetes have mild to severe forms of nervous system damage.

People with diabetes are 15 to 40 times more likely to require a lower-limb amputation compared to the general population.

Diabetes is the sixth highest cause of death due to disease in Australia.

Overall, the risk of death among people with diabetes is about 2 times that of people without diabetes. However, the increased risk is greater for younger people.

It is good to know that JDRF are working so hard to find ways to prevent and treat these complications and ultimately find a cure.

But I also have to deal with what happens now. I had a bad hypo awhile back and my brother thought I was dead. Now my parents are even more protective than ever, which is not cool!

What keeps me going is the news that researchers are making incredible advances towards a cure each year. All they need is a bit of funding to keep them going. I know I am standing in the middle of a political arena but this is an issue that goes way beyond party politics.

I don’t want your sympathy, just your support. Support for a cure.

This speech left such a lasting impression on me; I guess as a parent of a child who was a baby when diagnosed, the majority of the public look at him and see a picture of health standing befote them, and they struggle to see where the “health” problem lies considering his robust appearance.

However, I look at my son, and I see the blood samples that are collected from his arm every three months, the visits to the optometrist that leave me physically ill, waiting for the doctor to speak after thoroughly looking into Lance’s eyes in case he finds “a bleed.” I hold his hand, and feel his calloused, scarred little fingertips. I am constantly thankful for the lifesaving properties of a glucagon injection after a severe hypo. When his blood sugar is back to normal, we usually go through 24 hours of fierce headaches, light sensitivity and vomiting that almost always requires a drip, as he becomes terribly dehydrated. The morning I found him cold and blue in his bed at just under 3 years of age; he had slept through a severe hypo. Out trip to Canberra made me feel like we belong to a “Society” that knows all too well about complications, the stigma attached to having to prick your finger and how a drop of blood instills fear into ignorant folk, thinking that a blood borne disease could be contracted by sitting near a child who has Type 1 Diabetes. The stigma of depression is real and blatantly considered to be a “take a pill and it will go away” or ” You just need to remember that there are so many people worse off than you” brush off. Who wouldn’t be depressed at having to go through all of these procedures and knowing that you could be blind in your 20’s, have a heart attack in your 30’s..it’s a condition that constantly eats away at you. It’s difficult to hope for the best, because the best is so far away. The worst is already happening for Lance, and for you, regarding complications. It is fantastic to see surveys about being a carer circulating, and organisations such as Beyond Blue are recognising the difficulties associated with the upkeep of a chronic disease, and fighting off long term depression-finally a step in the right direction.

When were you first diagnosed with Type 1 Diabetes? May 15 1996

Are you on insulin injections or do you have an insulin pump? 3rd pump so far over 5-6 years . I had injections for first 6 years and HATED every one.

Is your endocrinologist a happy little camper at your 3 monthly visits? I have just started seeing a new guy (endo for last 12 years just retired). I have been very lucky compared to some peoples’ stories. My old endo was always encouraging, he never said I was “bad” –it was always “the best we can do at the moment” even when things were terrible or my HbA1C was 11.3 (just before I started on the pump). The new Endo was good at first visit and is also encouraging already.

How long have you been a JDRF Youth Ambassador? Since around 2001.

I know your fam are amazing fundraisers…do you get involved in any projects as well, such as Walk For A Cure? Every single one. Dad says it’s a sacred day for the family & everything else gets cancelled so we can go. Im supported by IBM (they have supported Youth Ambassadors for many years now) & Boral. I try to help as an ‘adult’ (!) now by handing out prizes, selling raffle tickets and the like. I’m usually involved in some media promotion too– radio or TV/film at the walk.

(Annette) When he was little, Gareth was always amazed that he couldn’t tell who had type 1 diabetes in the huge crowds. He thought it was funny to see so many glucometers at lunchtime though! We encouraged the event greatly as we felt Gareth needed to see that there were so many other quite “normal looking” other people that just happened to have type 1 Diabetes.

I speak at every JDRF Ball (been 4 so far) to get more support from well heeled corporate blokes – I love ’em all, even though they are so much older than I; they treat me like an equal-crazy!

At what age or time period did you find Type 1 Diabetes become a social hinderance? To tell the truth, I can’t really remember. Obviously having it at a quite young age it is hard to remember the exact details of the situation ,but it pretty much became obvious to me as I started to get older and learn more about the disease, the more things I had to actively think about and try to take care of as best as I could. Sure, I had Mum at home and at a lot of the places I went, as you do as a littley, but she wasn’t always around to give a hand at school during the middle of the day for example. Problems would often come up and every day was a new challenge for me.

Were you pretty open about telling people that you had Type 1 Diabetes? Yes and No. I can talk to some of my close friends openly about it, but then again there are still some friends I feel awkward about talking to. I’m not exactly sure why, it could be that it’s something i don’t feel the need to talk about or whatever, but i really dont know. People around me should know, so they can have a vague understanding of what sort of situation I’m in, but it’s also up to me to be able to take care of myself and not have to have them worry about it/have to think about it everytime I’m with them. It’s not really their ‘job’ because in theory i should be all good, but sometimes things don’t turn out so great. I’m very grateful for my friends’ concerns and that they do understand. Not everything is so simple though….

When you had episodes or bouts of depression, would they flare up and then die back or were they there, big and black all the time? Full blown all the time, I couldn’t get away from it.

Did you have any obvious symptoms that indicated that you were a candidate for depression? Well, I guess I wasn’t the one who noticed it because it came on as a gradual thing, sort of like growing, it’s always the grandparents or someone like that who notices and not yourself . But i guess my family were a little concerned with it to start with, i don’t remember a lot of it because it was just such a dark time for me, but my friends noticed too. Some tried to talk to me about it, but being your typical arrogant teenager at the time, I told them I could deal with it or nothing was wrong, which is pretty much the total opposite of what was happening.

(Annette:) I could write a book about this now! He’s right – parents were about the last to admit (see) the symptoms – it’s pitiful now in retrospect – embarrassing to say you were the parent – we need so much more educating! I feel/felt such a failure.

When you were diagnosed with depression, were you initially shocked/angry/upset/? You could say I was upset, but then again i was upset the whole time I was going through it. Everything I looked at, I saw the negative side to it, even if it was something like the blue sky, i just couldn’t handle anything or even understand what was going on properly.

So, whilst dealing with this, was it tough looking after Type 1 Diabetes continually demanding attention from you all day long? It was a challenge in the fact I totally stopped caring, even if I got sick, felt terrible, made it hard for people around me, whatever. I was completely blind to everyone around me trying to help me, but also to the fact that I had so much support that went unnoticed by me because of such single mindedness, and not caring about anyone. It made more work for everyone around me too, having to do what I should have been doing myself but wasn’t, even the simplest of tasks.

Your family are an amazing support network to you. Did anyone click that there may be something wrong, or did you have to tell them how you were feeling? The former, i had no idea in the world what was going on til it was too late. I was taken to psychologists and psychiatrists and God knows who else..one after the other, to try and sort the problems out. Same with the medication, I started to hate it too, I didn’t think I needed it so I’d not take it for days on end and that would cause more havoc among the family.

Did you have a supportive medical network? I still do to this day.

Is there one particularly dark moment (more so than others) that you remember whilst suffering depression? There is no solid memory i can recall, but there’s enough fragments to last a lifetime…

You’ve tried both medication and counselling. Was it really difficult to have to wait up to 6 weeks for a tinge of improvement? It was hell, yes, I tried both the medication and the therapy/counselling but I didn’t feel it really helped (even though it obviously has..) The medication was ridiculously slow to actually have any noticeable effect on me so I didn’t think much of that. The counsellors trying to help- I thought they were just like little machines that had a response to every answer I could think of, or any question I had. None of them except one, had a good run with me I don’t think. They didn’t seem to help anyway.

When did things first start improving? About when I finished Grade 12. I got away from everyone and everything, I wasn’t really cut out for being in school because I hated the place to death, but I stayed for the sake of it. When the time did come around, I felt a huge weight lifted from my shoulders, but also the fact that I could almost ‘start over’ . A whole new world opened up for me so i guess im lucky in that sense.

You sound like you are strong in spirit at this moment. Is it true what they say about “you’ve just got to give it time…?” As much as I know anyone who is in the same position as I was doesn’t want to hear this and will probably just ignore me for saying it, time is life. There’s no quick and easy way to just ‘fix’ it, its not really like a car and if something’s broken you just mess with it for a while and it will be fixed, its something human and living, you can’t get around it.

Can you suggest what somebody experiencing any of what you have been through should do first? Talk to those around you, and tell somebody how you are feeling. It may help rather than an outsider’s assistance..

What about if you notice symptoms in a school friend?? It’s hard to notice at school because there is so much going on…,someone could be in a terrible state, but everyone may think they are stressed out from exams…or a detention later that day….or whatever the reason may be. If you CAN, talk to the person you are concerned about, if you can’t, find someone who can..it may be just enough to stop them falling apart…

If I could give you two tickets to any band/singer in the world, who would you go and see, and who would you take with you?? That’s a terribly hard question for me to answer! There are so many bands out there right now that I’d love to see..a LOT come to mind but if I could pick ANY band in the world and be able to give the tickets away, I’d give them to a few close friends of mine and let them enjoy the time, with the band of their choice. I find supporting friends/family is one of the greatest things a person can do for them.

If you are feeling any emotions or having moods that sound similar to what Gary went through, OR if you are concerned that your child may be depressed, there is help close by until you get a medical opinion.

By contacting any of these organisations, you will be taking your first step to helping yourself.

Beyond blue
www.BeyondBlue.org.au Complete our checklists to get an understanding of depression/anxiety

Kids Help Line – 1800 55 1800

Kids Help Line is a free and confidential, telephone counselling service for 5 to 25 year olds in Australia. www.kidshelpline.com.au/

Pfizer Australia Health Report – Depression and Chronic Illness
File Format: PDF/Adobe Acrobat – View as HTML
Living well with chronic illness. and depression. The SANE Helpline1800 18 SANE. (7263) is Australia’s only national. Freecall helpline providing
www.healthreport.com.au/Reports/32.pdf

Lifeline Australia – Lifeline Information Service

The Lifeline Information Service provides access to a variety of self-help tool kits with information about issues such as mental illness, depression,
www.lifeline.org.au/find_help/info_service

(Annette) “I’m not sure Gareth understands the power of his presentations yet; he just thinks it’s what he needs to do to help. At the time he was still “in” the depression & lots passed him by. For example: A few weeks after Kids in the House, he went with the Band from school to USA & Canada (I went too) – he doesn’t remember more than 10 minutes of the whole 3 weeks – such is the power of anti-depressant medication (especially when it’s not the right one). Hell continues …

I offer my heartfelt thanks to Gary and Annette Eldershaw, for sharing the living proof of how depression can appear from nowhere. 1 in 3 Australians will suffer from depression at some time in their lives, however, I tend to think that it affects every person-the real difference is the varying degrees of severity in each case and how it affects your overall wellbeing. If you are suffering from a Chronic Illness other than Type 1 Diabetes, you feel like your quality of life is suddenly impaired, and you feel entrapped and unable to embrace life as you once did, the above contacts are all excellent in regards to putting you on the right track. Once you know what you are dealing with, your medical support team and family will want to assist you in any way they can.

I am concluding this interview with an excerpt from a speech that Gary wrote and delivered at a fundraising event last year. His family are so devoted with helping him regain serenity once again. After all, he is a young man, who through no fault of his own, has missed out on having a happy, carefree childhood, and then to ice the cake, his teenage years have been laced with misery as well. Any chronic disease plus debilitating depression thrown in for good measure is a devastating combination. The excellent news is that you can recover from depression. It can be a rocky ride, however Gary Eldershaw is a perfect example of a young person who refused to give up on himself, and how the love and support of his family was paramount in pulling him out of the murky swamps he was embedded in. Today, he still lives with Type 1 Diabetes, but he has learnt to be Gary again. He is living a tranquil and relaxed life. The chaos is over, hopefully never to return.

An excerpt from Gary’s speech, delivered at the JDRF Gala Ball, 2007.

“We all had our lives and our families shattered by those 3 little words …”you’ve got diabetes”.…….. From that moment on our lives have been consumed by the relentless barrage of insulin injections ….just to keep us alive (remember that insulin is NOT a cure)…… Relatives and friends are constantly watching over us to make sure we eat food at the right time,….. don’t have a hypo,…….. and have our injections ……..and lots more.

At the last JDRF Ball, I told every one of my very personal hardships and recent complications of type 1 diabetes, of which one has been a struggle with severe depression…. Since then I’ve attended a symposium where people with diabetes were able to anonymously give details of their complications and fears……. Guess what….. I’m not alone…….. But few have been prepared to speak out or even have the opportunity to speak out.

Despite medication and psycho-therapy I have suffered several more depressive episodes since then…… I have the physical scars on my body of my attempts at self-harm……. I will have them for a long time … as a constant reminder of this dreadful disease….. As if all the needles were not enough of a reminder!”

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The Big Gun Of Endos.

I haven’t been able to write lately as I have been fraught with concern and fear.

Lance had his 5 year checkup with the best paediatric endocrinologist in Queensland a week ago, and who actually treated him in hospital when he was diagnosed and with post diagnosis.  Just over 5 years ago, he tolerated me calling him at 2am in the morning asking “Diabetes for Dummies” questions and showed no sign of angst when I would call him at 8:15am on the freeway t0 get Lance’s insulin doses for the day. He’s the connsumate professional, parent friendly, has a fantastic relationship with children, especially those with an endocrinological condition. However, I sat in front of him, quietly petrifed as to what he might find in those just-warm-off-the-printer blood results.

He flashed a smile at me, and gave Lance a good inspection a few times over.

“Is this that same little baby whom I nursed and took that nasty drip out of your arm? My goodness! You have grown into a fine young man!”

Lance managed a polite grin, but I could tell he was anxious, too.

So Big Gun decided to stand with his pen in his mouth, whilst bouncing rhythmically off the wall.

(I could see Lance’s mind ticking over….”That’s dangerous, Doctor, the pen could go down your throat and you could get injured..maybe you should stop..” I pleaded with my eyes at him to just ignore it and thankfully it worked! If he had said something, however, I think that Big Gun would have had a hearty chortle. Seriously, Lance really is 7 going on 40 most of the time…)

Lance couldn’t keep his feet still, but I tried to turn his attention my way. In my peripheral vision, I could notice Doc making notes and circling results.

I hoped there was a ladies’ room close by.

“Okay, young man, all this blood that they drained out of you tells me a few things, but in general, you have been helping Mum look after yourself, haven’t you?” he asked.

Lance warmed up a little then. “Well, I do make a habit of eating two pieces of fruit and 5 vegetables a day. I don’t know if that helps?”

“My word it helps young man! (Our gorgeous Big Gun has an equally gorgeous English accent.) Who taught you that piece of information?”

“Mum did.” He proudly looked over at me.

Then Big Gun decided to sit down.

Okay. I have to ask you a favour, Lance. I need you to be really brave and get one more blood test, and tomorrow morning when you wake up, can you do a wee in a bottle for me, and two times after that? You wouldn’t mind doing that for me, now would you?”

This guy is  fantastic with children. His sing-songy voice is almost hypnotic.

Lance shook his head, and sighed, almost with a wobbly bottom lip, but replied, “What’s one more blood test?”

“Good Lad. Gosh Mum, the kids I care for aren’t half as cooperative as this! I have heard that you have had a lot of adventures over the past five years. You have made a lot of money for Type 1 Research, haven’t you?” His eyes twinkled and the corners of his mouth curled upwards.

Lance looked at me, wide eyed, wondering how on earth he could possibly know!

“And you’ve been to Canberra? How was that?”he asked.

“Oh,it was bad. My friend got DKA and vomited all over the stairs at Parliament House. She had to stay in Canberra for a day or two to get some insulin into her. She had to give a speech in front of the then Prime Minister, so her blood sugars went crazy.” he lamented.

Oh dear, that was a big job to do, so I can understand why things got out of control there. At least you wouldn’t have been worried for her, because she would have been in the very best of hands.” the Big Gun queried.

“Well, I still worried regardless, We were like soulmates.” Lance informed Big Gun.

Okay Mister, do you want to go and play in the kids’ area whilst I have a quick chat to Mum about your next appointment. I’ll  leave the door open so you can see her red hair, okay?”

Lance bounced of the floor, and forced the most sincere hug on The Big Gun.

“Thanks so much for saving my life when I was a baby. I never got to tell you because I couldn’t talk very well then!” said Lance. It was something that had instantaneously popped into his head to do, because it certainly wasn’t rehearsed. Nevertheless, it left me quietly weeping, that five-and-a-quarter years have passed and Lance knows enough about Type 1 Diabetes, and HIS Type 1 Diabetes to know that this man pulled him out of the wild currents he was dangerously being swept away into.

“Kate! Great to see you. Amazing boy, he’s a champ, isn’t he? One of a kind. You’ve done so well with him.” I couldn’t help but feel chuffed that I was receiving praise by a man who fights so hard to prevent complications in children, instills education in parents, and is definitely a patron for the Type 1 Diabetic community.

“Yeah, it’s been a bit of a shaky year, with the coeliac diagnosis finally coming through, and 4 teeth extracted. I am a bit of a nervous wreck to tell you the honest truth,” I confided for the first time to anyone.

“4 teeth extracted?? Oh poor chap. At leas he was asleep whilst they did it.”
“Oh but he he wasn’t. The dentist decided to use nitrous oxide and do it in the chair.” I stated.

The only thing coming from his shocked, open mouth was a tunnel of exhaled air, for quite a few seconds.

Cure Type 1Diabetes

“Well!! This explains what I wanted to talk to you about. And it makes so much sense, considering he went through that trauma, and you would have had a cat-and-mouse game with insulin and trying to get food into him. Oh my goodness. At least in hospital, he would have receive a dextrose drip with his insulin included, and you wouldn’t have had to worry about a thing! People like to do the things the long way around, don’t they? Oh boy.” He made copious notes about that week, and looked at my notes and  readings and he instantly could see why his A1C had jumped from 6.2% to 8.5%.

Now it was my turn to inhale a tunnel of air….

“Now with that extra blood test I have ordered, I want to check that Lance isn’t lactose intolerant, and I’m looking for a gastrointestinal condition that pops up in Type 1 Diabetics. It’s called Gastro Oseophogeal Reflux Disorder. I JUST want to make sure that he has nothing else causing his stomach problems. This isn’t rare in Type 1 Kids, it’s a bit unusual to see in one so young. But then, we have to remember that Lance is an old-timer. So we are going to grab some more blood, see what comes back from that, and then possibly get him back in for a gastroscopy. Oh, and by the way, cholesterol-perfect, Liver function tests-perfect, thyroid test-perfect-immunoglobulins-perfect-that’s why I know you are looking after him so well!”

“He was actually hypo when he went in for the blood work; he was 3.5mmol/L, so there wasn’t a high level of sugar in his urine, so that’s why I want to do the conclusive morning one, to look out for protein etc. Overall, well done. Don’t be phased by the HBA1C test- it all makes sense now. So good to see you. We’ll talk again after you get those bloods.”

And that was it. Tests for 2 new conditions, suspicion of 1 very likely gastro disorder with the acronym of GERD. “My son has Type 1 Diabetes, Coeliac Disease and GERD.” At least it might stop people in their tracks and concentrate on that rather than the”Will he grow out of it?”old favourite. 😉

If you have a Big Gun in your State/Territory/City-GO AND SEE THEM! The beat the pants of the info a paeditrician can give you and will put your mind at rest. Parents who have a child with Type 1 need that comfort and support more than anything.

 

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