Archive for Diabetes me

Lance And The Big Blue Tablet.

5 January, 2009 · Filed under By Kate, Diabetes Complications, Diabetes me, Diafrustration, From Parent to Parent, Peripheral Neuropathy, WDTID News · Tagged doctors opinions on how to treat Peripheral Neuropathy, Endep, massage, neurologist, painful feet and legs, Peripheral Neuropathy, podiatrist, reports regarding tests, sleep deprivation, sleeplessness

Things ain’t looking good for Lance.

He has been going to bed everynight at 2am, because he is in SUCH agony and discomfort with his feet and legs.Massage, warmth, paracaetamol, ibufrofen…I may as well be giving him M&M’s and rolling clingwrap around his legs.

I am so sleep deprived- if a sentence doesn’t make sense, please forgive me.

I took Lance to the doctor today. The doctor saw him and sitting on the chair, and said, ‘Your legs still hurting, Lance? The way you are sitting..they look, they look very heavy.”

We both nodded with bleary eyes. Lance isn’t coping with the sleep deprivation either.

I got a letter from the podiatrist today spelling out the hard, cold , agonising truth.

Catergory 1 (at risk) – “Neuropathy, no deformity-Patient is 1.7 times more likely to develop an ulcer than person of equivalent age with no diabetes. 6 monthly podiatry reviews required…..”

Sensory Test-“Monofilaments showed neuropathy was present with loss of monofilament sensation up to the knees….”

“My differencial diagnosis consists of SYMMETRICAL POLYNEUROPATHY….”

“Some suggestions would be Capasaicin, Oral Thioctic Acid, Tricyclic antidepressants, anticonvulsants, transcutaneous electrical nerve stimulation (TENS), Acupuncture…..”

“Given Lance’s age, I feel that due to the potential side effects the antidepressants and the anticonvulsants be kept at a last resort.”

Dr Congo took one look at Lance, and picked up his telephone. He dialled a neurologist whose books are full for an entire four months. By the end of the consult with Dr Congo, we had an appointment for Saturday!!!

However, the not-that-great news, is that Lance has to start a course of Endep. As much as I battled to try and avoid any oral medications, I realised that we were both floundering about in quicksand. I need sleep to keep him well and pain free, and take care of his diabetes. He needs sleep, because, at eight years old, five hours sleep is no where NEAR enough.

Endep is an ancient tricyclic antidepressant, which is also effectively used for the relief of chronic pain. He had his first tablet, a shower, and his dinner. I asked him a question, and 40 minnutes later, I could see his tonsils vibrating. Finally, his little body lay still, his legs relaxed, his feet…his beautiful feet looked so clean and just like the did when he was a baby.

Amitriptyline-10mg. Otherwise known as Endep.

Amatriptyline..otherwise known as Endep.

I made the obligatory calls to his team and I spoke to our regular endocrinologist’s partner. He listened in disbelief as I told him about the mornings events.

“Kate, you must rip the script up, I think you should consider getting a new GP for Lance.”

Somewhat puzzled, I asked “why???”, and he said, “Well, he’s prescibed a low dose narcotic here to an eight year old, do you really want your son with a prescription drug dependency??”

(Turns out Doofus the Enodocrinologist was thinking of Endone, not Endep. (Endone is taken for severe pain, and is often referred to as “Hillbilly Heroin”, as you can get it for bupkus on a script, and apparently have a whale of a time if that’s what does it for you-it basically mimics heroin, but in the pharmaceutical tablet variety.)

I held that Endep script in my hand for so long, wondering if I should hold out until I saw the neurologist on Saturday. I took alook at Lance, who could have been a poster boy for “Antz in your Pantz”, and decided then and therefore it was up to me to provide him some relief, despite what the critics thought.With a heavy heart, and a few streams of tears, I took the packet from the the pharmacist. If this really is Peripheral Neuropathy without medication or treatment, I will never complain about Diabetes again. (I know, what a crock.)

Can I ask you all to keep him in your thoughts this week? He has been suffering in silence for ages now, simply because he thought it was “normal” to feel like this.

After his Nerve Conductive Test on Saturday, we will have a LOT more answers, and possibly a positive direction which way to go…

Again, I IMPLORE of you, just because you have a young child, or a teenager, or a twenty-something, does not MEAN a thing if you ain’t got that swing. Any symptoms such as painful legs, heavy limbs, pins and needles to the excress, no feeling in the extremities, unusually hot or cold feet, GET IT CHECKED OUT. Demand a test for PN, even if you get scoffed at by your family GP. A Podiatrist has all of the equipment to conduct the tests,and provide answers.

Having diabetes isn’t JUST all about AIC’ testing, eye checks, the annual urine sample…there are so many parts of the body that it affects. After being diagnosed for 5 years, go ahead and make the steps to organise the appointments yourself, EVEN if your GP tells you they are”‘not necessary.”

I just checked on my Lance. For the first time in months, he is sleeping peacefully, His legs are still. His face is relaxed, and not grimacing in agony.

Despite my hesitation regarding him starting the medication, I now know I did the right thing.

I’m going to follow him to bed, for the first time in years.

Goodnight!! (And it’s been a long time since I have said that, too!)

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New Beginnings (Again.)

1 January, 2009 · Filed under By Kate, Diabetes me, Diafrustration, From Parent to Parent, Peripheral Neuropathy · Tagged children, circulation, Endep, endocrinologist, frustration at Diabetes team, loneliness, long term complications, Peripheral Neuropathy, tight blood sugar control, type 1 diabetes, Vitamin B1

I used to devote so much time and energy into providing interesting news and updates for my blog.

I wanted it to be a place where people could come and feel like they had taken away some helpful and positive information.

However, since Lance’s diagnosis of Peripheral Neuropathy, I ackowledge that even though I knew that his symptoms spelt trouble, hearing the diagnosis..twice..sent me back to the days when I was a newbie parent of a child with type 1 diabetes. I could function, cook and clean, do homework, wash the clothes, ensure that Lance’s blood sugar levels were in check, but I was a pretty tragic person when after Lance went to sleep. Oh, yes I was.

I have had to FIGHT like a demon to get Lance’s specialists to ackowledge that this condition is real and present in my eight year old son. I have spoken to countless people about how there are similar conditions that mimic Peripheral Neuropathy. I know this, but I have ALSO taken him to two podiatrists, specialising in peripheral neuropathy, and the other, Diabetic conditions ralated to the feet. Basically, they both concurred with the diagnosis. They also expressed their disdain towards Lance’s Medical team for being so lax towards a child with a diabetic condition that needs specific attention so as not to deteriorate further!!

Our Diabetes Educators are on my hit list at the moment. The ones that I have dealt with look at me with such gross suspicion, as if I have created the symptoms to get more attention for Lance…(Did I just write that??) Other’s have said, “Get him involved in sport-that’ll get his pain levels down, that’s if he DOES have it, of course.(!) And the Kingpin…”Why do you know about Peripheral Neuropathy anyway? There is no point in stressing yourself out about a condition that a parent doesn’t need to know about.”

(OR…IN THIS CASE I DID!!!!!)

It never ceases to amaze me…you don’t know enough about type 1 diabetes and you get a grilling for not keeping yourself educated, yet you bother to investigate what COULD happen in the future, and you are considered a wack job.

So, it’s the beginning of 2009. No more feeling sorry for myself or Lance. I fight everyday to keep tight blood sugars, his little fingers are calloused and black from all of the finger pricks I make him endure. He follows a tight exercise program that endeavours to keep circulation flowing well, and he is also taking a B1 supplement. His paediatric endocrinologist wants him to commence taking Endep, an ancient tricylic antidepressant that is used to block nerve ending pain. Seems great in theory, but it has a nasty side effect. Even on low doses, fellow patients have told me that they were barely able to move, they felt so “dopey” or “cloudy” and planted to their bed or chair. When I think of my eight year old medicated, or running around the block and following a lot GI diet, of course I am going to keep him of meds. However, if things digress, and it is necessary for Lance to be on medication for increased pain and uncomfortable sensations, well of course I am not going to deprive him from pain relief.

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A lot of the wonderful treatments available in the United States simply aren’t heard of here.

It comes down to a capsicum topical gel, Endep, exercise programs, tight control of blood sugar levels, or the dreaded word that strikes fear in the heart of every person with diabetes.. amputation.

Happy New Year everyone, I ask you to please keep an extra sharp eye on your child’s readings, so that you can continue having Happy New Years in the future, without extra specialists, medication, pain, discomfort….

I have loads of issues to post about, but I thought I should explain my absence first. I have many good days than bad now, and I spend a lot of time devoting myself to educating my family and local diabetes group that if Lance could get a complication at eight, then no one is immune. (In other words, it’s not just the “overweight, careless, long term type 2’s who don’t bother to take care of themselves.”)

My New Years Resolution is to continue educating and providing information about type 1 Diabetes, and assisting parents of newly diagnosed children. Let’s put it another way, the Health Minister will feel instant nausea when she sees my stationary in her mail pile. 🙂

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The Repercussions of The Australian Summer versus Type 1 Diabetes.

13 December, 2008 · Filed under By Kate, Diabetes Complications, Diabetes me, Diabolic, From Parent to Parent, Insulin Pumps, Peripheral Neuropathy · Tagged adverse effects of a glucagon injection, glucagon, headaches, how weather affects diabetes, humidity and hypos, Maxolon, Peripheral Neuropathy, regular fingerpricking, severe hypo resulting in seizure, voltaren gel, vomiting

I really don’t want to sound like Negative Nancy. After all, it’s the Christmas Holidays, we should be embracing our time together. School is over, Christmas Beetles chirp loudly at night, we can stay outside until at least 8pm-it’s such a relief to watch the sunset, and feel a cool breeze wash over us. Kids walk past our house and exclaim, “Merry Christmas, Lance’s Mum!!” It’s just a wonderful time of the year.

However, where Diabetes is concerned, Numb November always blends into Dreaded December.

At this time of year, we suffer from blistering humidity. It becomes so overwhelming that you feel like you could almost suffocate. We have had 90% humidity in the air for about 10 days now, along with the Queensland sun burning its little heart out. Lance’s Diabetes and summer have never been able to meet an agreement where they can give each other a break. We have had 3 out of six Christmases in the emergency ward..it’s SUCH a blessed relief when Summer turns into Autumn.

Last week, Lance woke up, visably hypo. He couldn’t sit up, and his words were slurring together as if he had been sipping vodka all night. I rushed for a handful of jellybabies, and began to speak loudly and in a sing-song-y voice to keep his attention. His eyelids were flickering, and each time I would call his name, he would jump a little, and smile at me. I managed to get him to have 4 jellybabies. He started drinking juice. I didn’t even bother with a blood test, because I knew I didn’t have time.

I lay beside Lance, and began rubbing his hair. He didn’t seem overly distressed, probably because he wasn’t really “with” me. Then the twitches came.

The leg jerks.

The tightening of his fingers and toes.

A metre long strand of drool oozed from his mouth.

(I have dealt with Lance and seizures before..but I really wasn’t prepared for this one…)

I felt like I was trapped in quicksand. I couldn’t move my feet to grab the phone or the glucagon. I actually had to talk myself through what to do out loud.

First and foremost, I put him in the recovery position, and checked that he didn’t have a jellybaby hiding in his mouth. All clear.

A multi-coloured stain began to bleed onto the sheets from his drool. As I assembled a glucagon kit, I told him how much I loved him, and that I would always make it okay. and that would be all over soon.

I guess, as a result of the whole peripheral neuropathy diagnosis, I am very vulnerable at the moment. My face was awash with tears as I planted a syringe full of mixed up glucagon into his thigh.

I then kissed his clammy head again, and began to sing softly to him.

I was barely able to dial Lance’s father, Scott. When he picked up, I croaked down the receiver,”I need you! I need you now! We have a seizure situation here! Please come as quickly as you can!!”

Scott arrived approximated seven minutes later. Lance was sitting up, and falling backwards on the bed. His tenancity to fight the hypo was so difficult to watch, this one had full control of him, and there was nothing he could do to beat it.

I managed to get another glass of sweet drink into Lance-his bsl was 3.6mmol/L!!! I shudder to think what it was prior to the seizure….

I called my doctor, and his receptionist said to bring him in immediately. As soon as Lance began to speak in sentences again, the first thing he was able to communicate to me was “Mum, I think I may vomit soon..”

I raced through the house for a bucket, and returned, to find Lance’s beautiful strawberries-and-cream complexion had turned into a whiter shade of pale, with a tinge of green.

He was very unsteady on his feet, and was determined that he would not be going to the doctor unless he was wearing only his underwear.

“Just a singlet and satin boxer shoers, honey…that’s all.”

“No, it’s too heavy on my skin. I will have to go like this or I won’t go at all.

I looked at Scott and sighed.

“Okay sweetie, whatever makes you happy, I just need Doctor Congo to have a look at you.”

“Why? I don’t feel sick!!” An I going to the doctor??

“Um, you had a very bad hypo about half an hour ago my darling. “

“Did I? Can you carry me mum, and turn the lights all off? My head is really hurting.”

Scott rushed out to the car, and I carried my son like a newborn baby and let him lay down on the back seat. I sat with him, and strapped him in as best I could. I told Scott to take the back roads and go as slow as legally possible.

We all made it to the doctor’s.Lance began to scream when the rays from the sun hit his face.

“MY HEAD!!! MY HEAD HURTS 111 out of 10!!!”

We were immediately ushered into a waiting room, so that inquisitive eyes couldn’t witness his post hypo stupor.

We waited for about five minutes, Lance begging me, pleading with me to go home. He just wanted to go home to bed.

I heard the doctor’s door swing open, and his loud, booming voice bidding a patient farewell. I told Lance that Dr Congo would be with us any moment. He stared straight ahead. I instantly knew what was about to happen.

I grabbed about 30 tissues.

I thought I had done very well, in catching Lance’s post-hypo vomit. That’s until a huge cylindrical explosion sprayed up my arms, in my hair, and up the walls and dripped down on the sofa.

Lance sat heaving, half crying, his eyes rolling back in his head. A nurse came rushing in and handed him a sick bag, (the type they give you on aeroplanes.) He clutched onto it for dear life, inhaling deeply and exhaling with all his might.

The doctor called us into his room. He didn’t even blink twice, considering that his private waiting room looked like a set from “The Exorcist.”

I began to tell him what had happened. I requested a Panadol suppository for the headache, and a Maxolon injection for the vomiting/nausea. I wasn’t going to allow Lance to suffer any longer than he had to.

By this stage, he was really going to town with the cries of “MY HEAD FEELS LIKE IT’S GOING TO EXPLODE!!! GET ME OUT OF HERE!!!!!!’

The doctor swiftly jabbed him with a shot of Maxolon, and before Lance had time to complain, he had a dose of Panadol in his mouth. Doctor was sure that the Maxolon would work well enough without traumatising him even more by giving him a suppository.

His BSL upon leaving was 6.1mmol/L. Dr Congo’s large fingers ran through Lance’s hair.

“I really don’t like seeing you like this, Lance! Do you promise you will go home and try and sleep for me? You will wake up feeling much, much better.”

Lance’s lip quivered, and he tearfully nodded.

I tearfully thanked Dr Congo profusely, and hurried Lance back into the car, wanting to get him home as soon as possible.

On the way home, a little voice from the back seat said:

“Mum..can we stop off at Woolworths and get some green grapes and watermelon?”

Without that shot of Maxolon, it would usually have been a good 12 hours before Lance actually requested food. I was happy that I suggested an IM injection, rather than try to get him to injest a tablet or syrup. The maxolon had no choice but to work if it was already in his bloodstream.

We arrived home, and I cleaned Lance up. He still had the most hideous headache. I put him into my bed, and lay down beside him. BSL:8.4mmol/L.

An hour later, I woke up, to discover the aftermath of the hypo. I tiptoed around and cleaned up, so that when he woke up, he wouldn’t be unpleasantly reminded of the goings on earlier that morning.

We have at least one of these hypos EVERY YEAR, as a result of the vicious humidity that goes hand in hand with our summers. I have to ensure that Lance has a sports drink with him at all times, as his blood sugar dances around 4-5 mmol/L no matter how many snacks I give, how hydrated I keep him, or even under-bolus on the odd occasion.I thought that this year would be different, considering that we have the pump. I have gone through all of his basal results and set them according to his recent bsl results. More hard work and constant monitoring, but watching a sugar-starved brain related seizure is something that I would be quite happy to never witness again.

I have said this before-the only joy that came out of this morning of terror is that Lance remembers VERY little.

Without Air Conditioning, I would have to spend all day and night at the cimema with him to escape the savage Queensland heat.

Again, I was up until 1 am rubbing legs and feet last night..I got some Voltaren gel, which I know isn’t going to help the internal discomfort, but it’s more appropriate than panadol or Deep Heat.(!!!)

The whole episode was all over the next day-after a solid sleep, Lance woke without a headache, and a voracious appetite. He had lost a day-he had no recollection of the events the day before.

Santa, if I can have ONE wish…

Please let Lance get through the summer without another severe hypo/seizure.

That’s all I want for Christmas.

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Accepting And “Welcoming” A Diabetes Related Complication.

11 December, 2008 · Filed under By Kate, Diabetes Complications, Diabetes me, Diabolic, From Parent to Parent, Insulin Pumps, Peripheral Neuropathy, WDTID News · Tagged 5 yearly foot check, acupuncture, burning feet at night, endocrinologists, fear of complications, gut feelings, hot, massage to improve circulation, paediatric podiatry, Peripheral Neuropathy, pins and needles, podiatrist specialising in diabetes complications, second opinion

I haven’t been dealing very well with Lance’s diagnosis of peripheral neuropathy.

I have not been able to write, nor look at my blog since Lanc’e’s birthday on the 23 November. (He loved his Lego truck btw, I was the coolest Mum in the World that day.)

I am really numb.

I had to write tonight, because I am getting NO support from Lance’s medical team.

Once again, I find myself alone.

Lance mentioned some symptoms to me in late October that made m ears prick up. After a consult with his GP, I had a referral in my hand for a podiatrist, specialising in Diabetes complications.

She diagnosed Peripheral Neuropathy after the first examination she performed.

Even though I was almost positive that he may have it, I had been brainwashed over the years by specialists, diabetes educators and other people with diabetes that PN would NEVER happen to a child.

The podiatrist wrote to Lance’s endocrinologist, who was on leave. (again.) I received a phone call from his colleague, who wanted to discuss with me the findings of the examination.

“We just don’t see it. We don’t. Kids Lance’s age and PN just don’t go together.”

I mentioned the symptoms that Lance was experiencing.

“Oh listen, If I tested for peripheral neuropathy everytime a child mentioned leg pain, I’d be showered with gold by the Podiatry Association.”

Right.

Nevermind that EVERY NIGHT, I sit and scrub Lance’s feet with a loofah while he showers, in an attempt to stimulate circulation.

I take him for a walk down our street on the footpath, and back up again.

I massage his feet and legs with vigour for at least 15 minutes a night.

Why do I do this?

Not because I was told that Lance has PN.

Not because I am trying some revolutionary new concept to relieve the symptoms.

I HAVE to do it, because to watch my child in so much distress and racked with foreign sensations of burning,hot, aching feet leaves me paralysed with fear for his future.

At around midnight, or on a really bad night, Lance will eventually drop off to sleep at 1am, usually with his feet anywhere but where they should be.

I massage for up to 90 minutes. The second I stop, he begins to thrash about in the bedsheets. We pace together up the hallway. We scrunch our toes up together-we play foot wars-where we sit opposite each other and place our feet together and push..it’s just all about his feet.

One night, in desperation, I called the after-hours endo.

(I can barely force myself to write this sentence.)

“Hmm, a dose of Panadol should settle those feelings down. Give that a shot.”

I made another appointment for Lance with our GP. He was devastated by the diagnosis. He also received a letter from the podiatrist. He was shocked and saddened by her findings, but assured me that we would receive his full support to help find something to relieve Lance’s noctural misery.

I was somewhat comforted by his words, but I was a woman on a mission.

“Dr Congo, I want another opinion. I am getting no support from his team, and anyone that should be able to provide words of support ends up scoffing at the very thought that I could suggest PN is responsible for Lance’s “condition.”

He said, “Oh Kate, no, you don’t need…”

“Yes, yes we do. We need another opinion so that his endo and educators will take this diagnosis seriously, and offer some support and advice treatment more appropriate than PANADOL to treat this discomfort.”

He nodded his head, clicked a few buttons on his computer, and scrolled down a long list of names.

“There is a podiatrist that specialises in the treatment and diagnosis of PN. The only problem is that he’s about 90 minutes away.”

“Great. We’ll take it. Can you please write a referral for Lance?”

He knew not to talk me out of it. He turned and faced his computer and began to punch out the words with a finger from each hand.

I was able to get an appointment four days later.

This podiatrist is such a feet expert, I wouldn’t be surprised in the least if he doesn’t have a kinky foot fetish.

He conducted the prick test, and again, the same devastating results were apparent to him.

“Do you get weak or tired legs during the day, Lance?”

“Sometimes, but it’s mainly just the pins-and-needles and the heat that make me anxious.”

A tear rolled down my face as I heard my son describe this condition as making him feel “anxious.”

He is EIGHT years old. He shouldn’t even know what the word means.

I shifted to a chair beside the examination recliner where Lance sat. I slipped my hand into Lance’s, and felt that familiar, knowing squeeze. My own son knows that he’s in trouble, yet, because of the intensity of our relationship, he can recognise when I am distressed. I looked up and his eyes twinkled as he gave me a sympathetic smile.

Not a sympathetic smile aimed at the fact that he was having tests conducted by a concerned looking specialist, nor the fact that he was having another foot examination, but a sympathetic smile for me. He knows that I haven’t been dealing well with the diagnosis.

Anyway, the podiatrist sent Lance out to the receptionist and asked her to get out his son’s XBox for him to play whilst he delivered the verdict.

“Okay, Lance does have peripheral neuropathy. There’s no doubt about that. He has significant nerve damage in his left foot, more so than his right. I will be contacting his doctors’ and requesting that he commence oral medication, and that you begin using the topical capsicum cream immediately. I also want him to begin acupuncture on a regular basis. This is going to take a huge commitment from you to teach him how to take care of his feet. Everyday from now on is imperative to maintain tight blood sugar levels, and to get those clogged up areas in his feet replenished with healthy, nourishing blood”.

I nodded, unable to speak, even though I had heard it all before.

This made it REAL. The doctor’s would have no choice but to take notice now.

Lance was in ignorant bliss with the receptionist: he was in the middle of a Star Wars game. The podiatrist spoke about how he believed a Western medicine approach with a little natural therapy intergrated would provide Lance with significant relief.

Call Number 2 to the Endocrinologist. Still on leave.

I had to re-tell the entire story to the endocrine registrar.

“Hmm, right. Okay. We’ll we can start on that medication, yes.”

“Oh, how heavy is Lance?”

“He’s about 32 kilograms.”(67 pounds.)

“Umm..how much did you say? 32?”

“That’s correct.”

“How old is Lance?”

“He has just turned eight years old.”

“Oh.”

“I think the best thing to do, is to call in to your pharmacist on the way home, and grab a tube of DeepHeat. That will provide amazing relief.”

My face turned as red as Rudolph’s nose.

“Yeah. I have used Deep Heat on an old netball injury. It did JACK.”

I began to sob.

“JUST BECAUSE HE DOESN’T FIT THE MOULD OF THE TYPICAL DIABETIC WITH PERIPHERAL NEUROPATHY DOESN’T MEAN HE DOESN’T HAVE IT!!” I hissed.

“I just think..that we leave it for a little while, and rule out whether it may be growing pains.”

(Ever seen Terms Of Endearment? Where Shirley McLaine goes absolutely nutso at the duty nurse because she won’t give her dying daughter pain relief?? I transgressed into Shirley momentarily.)

“YOU! YOU LIVE OUT OF A MEDICAL TEXTBOOK! GET MY SON THE MEDICATION HE HAS BEEN TOLD TO TAKE!!! THE PODIATRIST CAN’T WRITE A SCRIPT FOR IT, SO I HAVE TO SIT AND GROVEL TO YOU FOR ONE. I HAVE LIVED EVERY SECOND OF THE PAST SIX YEARS WITH LANCE, AND I HAVE SEEN HIS BLOOD SUGARS SWING FROM 1.9mmol/L to 32.9mmol/L AND BACK AGAIN TWICE IN A DAY. NOT ONCE OR TWICE, BUT HUNDREDS AND HUNDREDS OF TIMES. WHAT I HAVE BEEN FEARING HAS HAPPENED BEFORE MY EYES, AND I CAN’T BELIEVE THAT YOU ARE TELLING ME TO BUY DEEP HEAT?” The phone slipped through my fingers, and I kicked it so that it slammed into the wall. (I’m not proud of that behaviour. I guess having your diabetes team doubt the diagnosis of a complication plus night after night of early morning massage has the ability to send one slightly off the rails.)

Anyway, we are having regular acupuncture sessions, as well as using a topical cream which is helping more than it isn’t. We have embarked on an exercise program aimed at getting plenty of circulation to the feet, and lower leg area.

Besides having people compare Lance’s condition to feelings they may have had that turned out to be “absolutely nothing”, I have been working hard at trying to accept that I now have to deal with IDDM, Coeliac Disease and now PN.

After much research, I know that PN can be halted, and even reversed. It’s going to take a lot of extra work, but if I can save my son from going through any more trauma or pain in his life, then I’d turn myself inside out to do it.

I was always aware of peripheral neuropathy. I guess I feared it because I knew just how much Lance had hideous blood sugar control as a baby and a toddler. It wasn’t until we switched from Protophane to Levemir two years ago that I realised just how terrible his control had been.

So, I guess I am asking you to do the same.

If you are a parent of a child with diabetes, and they have been diagnosed for at least five years, HAVE their feet checked by a doppler test (like an ultrasound.) Never underestimate Diabetes. Never put all your hopes in what the doctor’s tell you. Follow your gut feeling; and, if you ARE worried, don’t take “Don’t Worry” for an answer. This isn’t meant to induce fear or more concern, but if I had listened to the “experts”, I would still be believing that Lance had a stupendously elongated case of growing pains. When your life is shared with type 1 Diabetes, a good mantra to live by is, “Be alert and stay aware.” (I was going to write “and stay on your toes”, but it didn’t seem appropriate for this post.)

You are responsible for your child, and if you request an investigation, you are doing what a good parent does-and follows through with something that could inevitably affect your child for the rest of their lives.

I have contacted JDRF Australia, to do a story about Lance’s diagnosis. I don’t want to scare people, but I think it’s high time that diabetes specialists stop with the “cure in 10 years” and “chance of complications are very rare at his age” chitchat and provide some preventative techniques and up-to-date education for parents.

No one likes hearing the truth about what effects Diabetes can have on the rest of the body. Strangely enough, when I sat Lance down after his birthday, and explained why he had hot and burning feet amd pins and needles regularly, he replied, “Hmm. I knew it had something to do with Diabetes. I guess I’m really lucky I have my pump then.”

Diabetes cannot and should not be sugarcoated any longer.

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Numb November

20 November, 2008 · Filed under By Kate, Diabetes Complications, Diabetes me, Diabetes superfriends, Diabolic, Diagnosis day, From Parent to Parent, Insulin Pumps, WDTID News · Tagged Amy Leverington, burning feet at night, chronic pain, Diabetes Complications, endocrinologist, hot, janek, Joel's death anniversary, Lance's 8th birthday, massage to improve circulation, opthamologist, Peripheral Neuropathy, pins and needles, podiatrist, prick test for peripheral neurophathy, tight blood sugar control, Vitamin B1, World Diabetes Day

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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It’s Getting Complicated.

28 October, 2008 · Filed under By Kate, Diabetes Complications, Diabetes me, From Parent to Parent · Tagged Add new tag, circulation, diabetes management team, endocrinologist, exercise, feet care, hot feet at night, long term complications, Peripheral Neuropathy, pins and needles, podiatrist, tight control, toe raises, type 1 diabetes

I recently wrote about Lance and the shocking discovery of symptoms with a sinister familiarity to Peripheral Neuropathy. Now that I have the ability to look at the words without feeling extreme nausea, I wanted to give everyone who commented and sent encouraging emails an update.

Firstly, I have been very cool and calm when it comes to Lance’s night time groans and discomfort. I don’t want him to latch onto the fact that I am stricken with fear. I put my Cate Blanchett hat on, and while remaining completely honest with him, I cannot show him that I’m fraught with concern.

We have been to our GP, who has an amazing rapport with Lance. I dislike speaking about Lance’s Diabetes in a negative light to anyone when Lance is present. Therefore, I asked him to tell Dr Congo about his symptoms of hot, burning feet at night.

“Well, it doesn’t matter if it’s the coldest night, it feels like there is a bushfire in my feet. Sometimes I have to look at my feet just to check that they really aren’t on fire.”

Dr Congo turned his head towards me, searching for my reaction. His reaction made me want to be sick.

“Lance, tell me, do you get pins and needles often?”

“Everyday.”

“Can you point to where you feel the bushfire the most?”

Lance grabbed his ankle, then rubbed over the top of his foot, tracing his finger over blueish veins.

He also added that he has mild tingling in his lower calf.

Dr Congo pressed his middle and index fingers together on Lance’s foot. He sat in silence, concentrating.

He then performed a reflex test on Lance’s kneecaps. Normal response noted.

Dr Congo swung around on his chair and raised his eyebrows at me.

“Well, I need you to bring Lance in to have a DIabetic Assessment with one of the registered nurses. Then, once they have gathered the information we need, I’m going to refer you to a podiatrist who specialises in Diabetes complications.”

Those last two words.

I read them, I write them. Occasionally, I’ve even said them.

But no one has ever said them with such pathos.

I have also contacted his Diabetes Educator.

“What was his last A1C?” she asked.

“7.1” I replied.

“I’d say it’s a growth spurt, Kate. Seriously, kids don’t have neuropathy problems.”

“Really?” I asked hopefully.

“Well, when was he diagnosed? 3, 4 years ago?”

“It will be 6 years on the 1st November.”

“Oh. Listen, Charles is on duty today, can you please give him a call?”

(Charles is one of four endocrinologists who work exclusively with children. Unfortunately, we have never met Charles, and he is unaware of Lance’s history.)

“Peripheral Neuropathy only occurs in older people with poor control and high AIC’s. Oh, and with type 2 diabetes.”

My jaw fell in astonishment.

AN ENDOCRINOLOGIST MAKING FOUR BLATANT GENERALISATIONS IN VIRTUALLY ONE SENTENCE.

“I’d just like to point out that before Lance started on insulin infusion, his control was shocking, he had massive fluctuations due to growth hormones. He was having up to 7 injections a day to keep him in single digits, and it was really hard work to achieve that.”

“Nup. Doesn’t make any difference. He’s type 1.”

As much as I was desperate to believe him, I was angry that he was brushing aside my concerns, and his slap-happy approach to pinning peripheral neuropathy onto lazy, irresponsible adults with type 2 diabetes left me postively livid.

Our endocrinologist is in Vietnam on a 4 week holiday. He left the day before I called him.

Lance’s Aunt Kel is a sports scientist, who is currently completing a two year trial with a group of men and women in their sixties,all who have type 2 diabetes. She is excited to present her thesis which will reveal that each of the particpants blood sugar levels have overall improved dramatically as a result of strengthening muscles through weight training.

I spoke to Kel last night, and mentioned Lance’s symptoms.

“Oh my God.” she whispered.

“I KNOW!” I exclaimed, relieved that someone understood my concerns.

She immediately launched into exercise specialist mode and set Lance 100 toe lifts (quick lift up onto toes, and slow drop on the way down) a day. She encouraged plenty of foot movement, toe wiggles, trampoline, circling his feet, all in an attempt to improve circulation. I immediately felt so much relief from hearing advice that was positive and beneficial from a professional.

So, Lance has commenced his toe lifts, we have an appointment with Dr Congo tomorrow who will write Lance’s assessment and then contact the podiatrist for an appointment.

I have incorperated a 10 minute massage after Lance’s shower. I rub until I can feel warmth exuding from his feet , and it is providing him with a little relief.

There really is nothing more that I can do, except to try to remain positive.

I will give another update after the assessment and the appointment. Looking at this has made me remind myself that Diabetes is not just about insulin therapy. As a parent who is responsible for educating my son about how to take care of his condition, I acknowledge that’s its so important to remain quietly vigilant everyday. Just little things could make a mammoth difference to a complication-free adolescence. Now that we’ve passed the five year mark, we need to add some new specialists into our diabetes management program.

As much as I do worry, I am constantly amazed at Lance’s ability to accept what accomanpanies diabetes. Right now, his biggest worry is whether he’s getting a Lego truck for his birthday.

The Birthday Present. (Well, one of them. I'm hopeless.)

(It’s sitting up in the top of my cupboard wrapped between pillows and blankets. He looks at a Lego catalogue everyday, and studies intently the detail and pieces of this truck. I’ll have an 8 year old in 26 days, and he’s simply amazing. :))

“

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Suffer The Little Children…

11 October, 2008 · Filed under By Kate, Diabetes Complications, Diabetes hope, Diabetes me, Diabetes superfriends, Diabetes vs Depression/Diabulimia, From Parent to Parent, Fundraising, Hope For A Cure, Insulin Pumps, Interview · Tagged "average"insulin pump costs $6000, 22 million dollar insulin pump grant fund, 5.5 million over 3 years for insulin pumps, Arch Bevis, Australian Labor Party, endocrinologist, Fundraising, Gareth Eldershaw, Insulin Pump Grant Scheme, JDRF Australia, Jelly Baby merchandise, Jelly Baby Month, jellybaby shop, John Howard, Kevin Rudd, letter writing to parliamenatarians, means test will tell how much you are entitled to for i, medtronic minimed 722, Nicola Roxon, Nov 2008 pump subsidies available

I’m a little annoyed.

Maybe it’s all the shenanigans regarding governments and elections of recent times…It’s just made me recall all of the promises and deals that were made relating to an Insulin Pump Scheme that would be applicable for children with IDDM up to 18 years of age before the 2007 election.

I was first contacted by JDRF Head Office last year, before our Federal Election. A small group of parents and I were asked to contact Mr Howard. Others were pleading with our Members of Parliament to take into consideration how many children with diabetes don’t have insulin pumps, and how desperately they needed them.

On International Diabetes Day,2007, Mr Howard historically announced that, if re-elected, he would provide $22 million to JDRF, to ensure that many children, and especially the ones who truly needed a pump, got one.

Despite our inital frenzy, at this stage, Mr Howard was lagging in the polls, so Kevin Rudd and team were our next target.

We rang Labor party hotlines, we wrote to Kevin personally, we even joined his Facebook Page. JDRF Youth Ambassadors followed him around and spoke of their need for an insulin pump program to combat their ailing health.

He knew that this was something that advocates and JDRF expected him to at least match, or maybe supercede the amount promised by Mister Howard.

So, Kevin Rudd became our new Prime Minister, and we said goodbye to our 22 million dollar promise.

Nothing was mentioned about Health, nor Childhood Diabetes in his victory speeches. I was silently worried.

He made grandiose promises to amend the public hospital debacles, and even establish doctor’s surgeries replaced by state-of-the-art medical centres, where you could see your doctor, as well as have all of your blood work, x rays, physio and dentistry taken care of in the same complex.

Australia nodded and agreed wholeheartedly. This was a man who cared for the little Aussie battlers.

However, in that election promise, there was no mention of a insulin pump grant.

In the meantime, Lance’s health took a turn for the worse. His endocrinologist spoke to me about the possiblity of getting an insulin pump. When I bought up the possibility of obtaining one through the Insulin Pump Grant, he raised his eyebrows, stopped writing frantically, and shook his head. Hot, angry tears spilt down my face.

I began looking around and finally settled on a Medtronic pump.

The rep, Louise, and I gained a fantastic rapport.

. totally I really loved the way she communicated with me and understood how desperately a pump would be beneficial for Lance. I mentioned the insulin pump grant to her. She grimaced, and said something along the lines of, “If it does happen, it won’t be for years, and it wouldn’t be anywhere near the amount promised by Howard.” I sighed, disheartened, and continued listening.

I put DAYS into writing letters to different influential people-some responded, but it all depended on the upcoming election. As soon as we knew that the Labor party were victorious, I began furiously writing to various Health Ministers, Members of Parliament, and King Pin himself, without one reply.

Suffer the little children...

Just before our annual budget was released in May, our very good friend, Gareth Eldershaw, (Gareth completed an interview for www.whydidtheinsulindie.com earlier this year), wrote to Arch Bevis,Federal Member for the Seat of Brisbane.

This is what Arch wrote in his comments regarding the budget results.

Firstly, he made reference to the letter that Gareth had written to him, complete with Jelly Baby Lapel Pin. (Budget night happens to coincide with Jelly Baby Month, so we make it a point that each MP is sent a pin and request that they wear it on their lapel on the night that has the Nation at a standstill.)

“May is a special month for JDRF as we try to make the community more aware of Type 1. As you know the jelly baby is a sort of motto that represents a vital aid to help us recover from a “hypo” when our glucose levels are too low. There’s a little blue guy in the envelope that I’d like to give you and ask you to wear in May and especially on Budget night.”

I can tell Gareth that I am wearing his little blue guy on my lapel, as I did last night during the budget. Gareth went on..

” We talked about the grant to fund the reimbursement of insulin pumps for kids under the age of 18. 3000 pumps for all these kids (over a 5-year period) would cost $35m. It’s a lot of money I know, but you know how much it will save the government in the future? Of course it will make life a bit more bearable (and safe too) if kids can use insulin pumps.”

I was very pleased to have been able to ring Gareth up today and say that in last night’s budget we made a step in that direction. I do not pretend that we have gone as far as we need to. I want to see the opportunity to benefit from an insulin pump—and not everybody with diabetes is suited to an insulin pump—be made available to all. But I do applaud the Minister for Health and Ageing, Nicola Roxon, for her efforts in recent times in ensuring that the budget includes a provision that will see about 700 young Australians gain access to an insulin pump. I look forward to continuing to work inside government now rather than from the opposition benches to try to have that program extended.

The grand result?? JDRF were given $5.5 million, to be dispensed over three years, to provide insulin pumps for 700 children.

After much planning and deliberating, JDRF will begin accepting applications for contributions towards the purchase of an insulin pump. It will be based on a financial means test, and the most that can be received per child is $2500. Families without health insurance can begin applying for insulin pumps for their children in November.

So, with the average insulin pump costing $6000, (notice, I say average ), and with approximately 1.7 million dollars provided each year, it won’t take long before all of the money is dispensed. If you are a suitable candidate for the $2500, what happens then? How do you get the rest of the money? Fundraising is about the only real option,and we all know how difficult that is.

I’m really not trying to look a gift horse in the mouth.

I’m so grateful that we were acknowledged at all, the heart and soul of some 50 parents went into sharing their children’s private stories regarding life without an insulin pump. I’m sure PLENTY of other charities tried their hardest to get a financial boost without succeeding, so I really don’t want to appear like I’m complaining or ungrateful.

I guess it just smarts a little that we could have had 22 million dollars.

It hurts to think that some families will qualify for the $2500, but will be totally stuck when it comes to raising the rest. Not to mention those who receive $750-I mean, what happens there?

Knowing JDRF Australia, they may have some amazing fund raising venture up their sleeve, but in all truthfulness, does it leave families any better off than before this money was offered? Personally, if I hadn’t have paid for Lance’s pump outright, and I knew that there was NO way I could afford to pay for the outstanding amount, I think (and only if Lance’s health was in excellent shape), that I would forfeit the opportunity. JDRF staff are going to have to make some really difficult decisions without being biased to families they know well and adore.

Vote for whomever will give you a better Health Care System, America!

Crazy Days And Mondays Always Get Me Down.

7 October, 2008 · Filed under By Kate, Diabetes me, Diafrustration, Diahysteria, Insulin Pumps · Tagged endocrinologist, fatigue, frustration as a carer, glucometer, glucose drinks, how hot weather effects blood sugar levels, humidity, hyperglycaemia, hypoglycaemia related to hot weather, ibuprofen, insulin pump, ketones, leg pain associated with hyperglycaemia, post hypo headache, pump troubleshooting, site change, type 1 diabetes, water flushing

This is the first time today I have been able to stop and do anything else, other than deal with hyperglycaemia symptoms.

Sigh.

You see, every September, when the air starts to get a little bit sticky, and the sun begins to bite your skin, I KNOW we are going to have three months of pandemonium.

Lance is like me, he has skin of milk, that gets a light blush even from the smallest amount of direct sunlight. Unlike my mum, who wouldn’t have been aware 30 years ago of just how dangerous the Australian sun is, I have always been pedantic with sunblock application, floppy hats, and avoiding the sun during 11am and 3pm. I have suffered from some terrible sunburn as a schoolgirl, and as a result, I have horrible freckles on my forearms. (One of my fave actresses, Julianne Moore, a fellow redhead has them too, which has made me feel less self-conscious of the fact that I have deformed skin pigmentation times two thousand.)

Julianne Moore Made Freckles Look HOT!

I have managed to maintain a good skincare regime since I was 14-ish, and unlike many Aussie redheads, I have escaped the nightmare of a freckled-dotted face.( I happen to think freckles are gorgeous-just not on me.)

Anyway, back to the weather. We have been waking up at 6am lately, our linen dishevelled, and a slimy layer of perspiration covering our bodies. Yep, it’s that time. The time when glucose drinks and jellybabies live beside the bed, and it’s simply too hot to stay asleep.

Which brings us to this morning.

I drifted off into a light trance-like sleep around 4am. I did one final test on Lance; he was 4.2mmol/L. I slammed my head into my hand, out of sheer rage. I gave Lance a few gentle shakes, and brushed a straw against his lips that would filter a pure glucose mixture into his mouth. Naturally, he was resistant to drink it, he thrashed about the bed for a minute or two, whimpering. I don’t think he was feeling hypo, I think it was the fact that he woke to find it almost impossible to breathe, and that his bedclothes were glued to his skin.

Finally, he drank, and I felt content that he had consumed enough to get him through ’til morning.

I turned up the fan, pointed it in his direction, and he rolled over and went back to sleep.

I woke to my alarm bleeping, and the early morning sun blaring through a space between the window and the wooden slat blinds. I was sticky, annoyed and after listening to Lance’s breathing pattern for about twenty seconds, I was so furious that I knew I would find him hypo.

I rolled over to find him fast asleep, his hair matted to his forehead, and his skin a ghostly white.

I fumbled with the glucometer, waited for the countdown, and felt immediate nausea when I saw a 1.9mmol/L greeting me. I jumped up, grabbed his glucose gel, sat him up, and squeezed myself behind him. His head dangled forward like a sad puppet, and I felt a few seconds of “Help Me”, directed at no one in particular, I just didn’t want to be alone in this situation.

Lance began to groan, which was a good sign, because it meant that I just might be able to get some glucose gel past his lips, and not sprayed back into my face. Fortunately, he was quite compliant, and sucked the sticky, thick paste straight from the tube. He actually had the entire dose, which was quite an achievement.

We haven’t had too many “one-ers” since Lance has been on his pump, and when he is really low, his hypo symptoms have become far less severe. The pump is such a blessing-Lance’s hypos were something that used to really worry me-I used to shudder imagining me holding him down as a 16 year old, copping a fat lip and a black eye-his strength is a force to be reckoned with now, let alone as a strapping young teen!

I would have looked like a victim of Battered Mother’s Syndrome.

His blood sugar had climbed up to 8.6mmol/L. He was crying, unable to get out of bed, due to the blinding headache that always follows an incident such as this. I administered a dose of ibuprofen (much better than panadol for post-hypo pain). He was just nailed to the bed, despite the glucose now surging through his blood, he was flattened, an insidious combination of the humidity and the hypo.

I lay beside him and he put his hand in mine, I could see the beautiful pink roses returning to his cheeks, however, he was beginning to sport some sinister black circles under his eyes. So poetic, really. Everything related to Diabetes seems to have a compromise involved. You can eat this, as long as you have this…You can go here, as long as you test at x o’clock. You can play outside, as long as you have your shoes on. Nothing’s ever simple…easy…okay or without the cause and effect phenomenon.

When Lance finally woke, he looked much better, but he was very flat, the chatter that usually fills my house was absent. He smiled and nodded when asked a question, but he wasn’t himself at all.

BSL: 5.1mmol/L.

I gave him a glass of juice, which he was happy to drink. I then suggested that he would feel better after a cool shower. He said he didn’t feel like he could stand up, so I took in a plastic chair for his to sit on while the water refreshed him.

I had just managed to get the water temperature at a perfect level, when I saw it.

Lance had taken his shirt off, and was just about to continue undressing when I discovered that his site had come unstuck from his tummy. All of that squirming around and moisture in the air had obviously attributed to this-something that I have yet to encounter since Lance began pump therapy.

I calmly ( innardly, I was madly panicking) put Lance into the shower. I only changed his site yesterday. “Oh well,”I thought,”at least we can start the day fresh, with a new site, and move on.”

Lance was rejuvenated after his shower. He felt much better, and even requested some breakfast.

BSL: 5.8mmol/L.

He had two slices of wholemeal toast, a mango and a bowl of yogurt, all washed down with two tumblers of water.

Site change was successful, I put some antibiotic cream on the old site, just-in-case.

Two hours later, Lance commented that he was hungry and needed a rest.

BSL: 18.5mmol/L.

Ha! So, we are going to have a “Nothing Makes Any Sense” Day, are we?

That’s okay, I’m ready for it. Bring it on.

I gave a correction on his pump, made a low carb snack and presented Lance’s filled water bottle to him. He asked if he could do some reading whilst lying down. Naturally, I agreed.

Should I ring the Diabetes Clinic? I should. Better to nip this in the bud, even if they tell me what I already know.

I bought the phone into Lance’s room, and rubbed his aching legs whilst making the phonecall.

Hmm. No answer. I gave it another shot.

I was a nanosecond away from saying, “Hel..” when I realised I was listening to a recorded message. I left my details, a brief description of the problem and hung up.

I smiled at Lance. “You’ll be feeling great soon, honey. The wizard in your pump has given you the perfect amount of insulin to come back down to the healthy range.”

“I hope you’re right, Mum.” he replied.

I wheeled the air cooler in Lance’s room. After hanging out a small amount of washing, I had a wet face cloth wrapped around my own neck. The heat was just frightful.

BSL: 7.7mmol/L.

“You were right, Mum!” Lance called from his room.

“Hey! That’s fantastic news! How do you feel inside of your body?”

“Ergh. My legs really hurt and I have some tummy pains, too.”

“Maybe you are hungry and you could do with some food?”

“Actually, I AM really hungry!” he laughed. He requested some fruit salad and ice cream.

He had two bowls of FS and IC, and then asked if we could make pikelets.

It was the last thing I felt like doing, but I was happy for him to want to eat.

We whipped up a batch in no time, and Lamce demolished four pikelets. He appeared with our trusty carbohydrate book, and asked how much he should bolus for them. The recipe I used already has the carb values worked out per serve, so after completing some quick maths in my head, I gave him the number, doubled checked as he pressed it into his pump, and he pressed ACT.

“Do you feel full now?”

“No, not really.”

“Well. we’ll do a test in an hour, and we’ll see what your bsl is. Maybe I can make some noodles with vegetables or something like that?”

He eagerly nodded his head.

Half an hour later, Lance appeared in front of me.

“Mum, I wasn’t feeling well, and so I did a test.”

24.4mmol/L.

I quickly handed him his water bottle, and got out a blood ketone strip.

Oh fantastic!!! Ketones had decided to join the madness!

The blood test showed 0.3% of ketones were present. Lance, ever the perfect diabetic, also did a urine test, “just for backup.” It showed 3+++ and 4++++ of glucose in his urine.

I picked up the phone and rang the doctor’s surgery.

No appointments. Okay.

I asked if I could speak to my doctor. This is an arrangement that he has given all of his staff permission to follow. If I call in an emergency situation, I am to be transferred through to his phone line. I’ve done it dozens of times.

“Look, I’m sorry Kate, Dr Dutch has gone overseas for two weeks. Therefore, Dr Congo is taking over all his patients. He’s really much too busy to speak to you at the moment. He has a difficult patient with him right now.”

“Well, Carol, I have a difficult problem that I need to speak to Dr about. What do you suggest I do?”

“At this stage, I could only suggest you present him to Emergency at the hospital.”

“That won’t be happening, could you please ask Dr Congo to contact me in between patients? I know he won’t mind.”

“Well, it’s Monday, and he hasn’t had a break, no lunch-nothing. So I beg to differ, he WILL mind.”

Haughty, miserable cow.

Lance corrected himself again. I investigated every part of his tubing, looking for air bubbles, making sure that the site looked as if it had “taken”…that was the only thing that I could think of. Or he had a virus of some description. My inner D voice told me that it was just “one of those horrorshow days” that come to haunt us every now and again, just to keep us on our toes.

5pm passed…Diabetes clinic didn’t call back. GRRRRRR.

At 6pm, BSL was 28.8mmol/L. I suspended the pump, and gave an injection of Novorapid. Lance was making frequent visits to the bathroom and guzzling back water. His legs ached terribly, he placed a pillow between them and rocked backwards and forwards to allieviate the pain. I changed the site. I could smell insulin the moment it was removed from his tummy. The cannula looked perfect-no kinks, no bends…

So, here I had my son, insulin dependent, receiving continuous insulin infusion, but blood sugar skyrocketing. Temperature:normal. Ketones present. Limited medical help available.

BSL: HI.

I rang his endocrinologist’s mobile number, but another endo answered. We had met before, so he did know a little about Lance and his Hypos.

“Well, Kate, it sounds like you have it all under control. You are doing all the right things-I can’t fault what actions you are taking.”

Thanks a lot, Doc, I appreciate the compliment, but, !!!!!!!!!!!!

“Keep up the Novorapid. Call back if you are worried.”

Did that REALLY just happen??

I hung up the phone and calmly strolled into my bedroom. I buried my head deep into a pillow and screamed to release the fury and frustration I felt.

I packed up a bag of emergency items, and accepted that we were off to the Emergency Ward.

I asked Lance for one more blood test.

“Mum, I’m 13.6!!!!”

I couldn’t help but laugh-we were both so hot,we had been tormented all day by crazy blood sugar numbers, had ridiculous encounters with our trusted medical team, and now-his blood sugar had dropped over 20mmol/L in 40 minutes..it really was quite comical, in a manic, crazed way.

So, now, it is 10.37pm.

Lance is 8.2mmol/L.

No ketones in sight.

Ravenous appetite present.

Leg pain is no longer present.

I have all of this documented, and I have an appointment with Dr Congo tomorrow. I want to show him just how crazy things can get. As much as I adore him, he has bothered to learn more about Type 1, and has treated Lance very deftly and appropriately in emergencies-I NEED him to see the rollercoaster numbers and just how quickly situations can turn around.

For now, though, Lance is ready to rest his body. Afterall, his entire body went through quite a workout today, yet he barely moved a muscle.

This day has shaken me considerably, but pump or no pump, this is how Lance’s Diabetes responds to the change in season.

We are fortunate enough that we can spend the majority of the summer in air conditioned luxury this year.

(Thanks, Pat. You’re still looking out for us.)

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The Broccoli Guy. (Yes, He’s Married.)

24 September, 2008 · Filed under A Laugh Between BSL's., By Kate, Diabetes me, Diabetes superfriends · Tagged babysitters for children with Type 1 Diabetes, broccoli, friends, maintaining friendships, severe hypo, single parent with a type 1 baby

It truly warms my heart when a friend or even more so, an acquaintance, goes out of their way to let you know about a news article they have seen or read regarding something concerning Diabetes.

Tonight, I was surprised to find an email from an old friend whom I simply lost contact with. In fact, the last time he saw me, I was fraught with panic as Lance had crashed in the middle of a department store. I was crouched over the top of him, very indelicately, might I add, desperately trying to get Lance to ‘drink the juice’…

As soon as his blood sugar stabilized, my friend, Bryce, approached me with some trepidation.

“Hey, Kate! It’s been..what..three years since I saw you last?”

“Umm..yeah, probably. How are you?”

“Oh, fantastic!” (Holds up ring finger, and gives me the opportunity to study his wedding band.)

” Congratulations.” (Lance is moaning in my arms and defiantly indicating that he wants to go home. I soothe him, and tell him that I’m just saying goodbye.)

“So, what happened back there? This is your son, obviously?”

“Oh, yeah. Sorry. Bryce, this is my son, Lance. Lance, this is a friend of mine, Bryce. He just got married.”

(Lance gives his infamous half-smile as a way of acknowledgement.)

Bryce smiled back nervously, and said, “Yeah, so what was that all about? Or is that rude to ask? Oh, that was really out of line, wasn’t it?”

“There’s nothing rude about type 1 Diabetes, Bryce. Lance was diagnosed after his first birthday.”

“Oh My God. Geez Kate, I’m so sorry. Look, if you ever want to chat, here’s my number. I just can’t believe that you aren’t a total mess after dealing with that.”

“Ha. Well, I guess you were a good distraction in that case, huh?”

“Here’s my business card, do you have an email address?”

Pleasantaries exchanged.

“Well. good luck with everything. Sorry to hear about the diabetes. Poor little guy.”

“Ah, ok thanks, all the best for the future, congratulations again.’

I shuddered. What an awkward encounter.

It was so horrid that it seems that I blocked it from my mind completely.

So, you can imagine my surprise when, almost two years later, Bryce’s name appeared in my inbox!

The subject was left blank, which left me all the more intrigued.

The contents of the email read-

Kate,

How are you? I am at my office and I have just come across some news that I thought may be comforting to know.

How is your little boy? I have never forgotten how scary that all looked that day. I have been a real jerk, and I wanted to apologise. Not one person came to see if you needed help. Including me. I was too busy gawking and I’m so ashamed of that. I should have rushed over to help you immediately. Anyone could see that you needed help, and here was I, with my mobile phone in my pocket, standing there like a idiot. I don’t blame you for not contacting me.

Anyway, after you told me about how your little man has type 1 Diabetes, I got some books out from the library to find out what it is. I’m a Dad now, too, and it scares me beyond belief that kids can get sicknesses like this. You’re a really brave girl, Kate. Even that day, you weren’t scared (I WAS!!!) and you didn’t panic.

Anyway, I hope this link can be of some use to you. Maybe it’s just silly, I don’t know.

Cheers,

Bryce.

Or maybe that simple gesture was perhaps the sweetest and thoughtful offering of human kindness that I have experienced in such a long time.

(He got books from the library!!!!!)

i don’t expect huge benefits to be held in Lance’s honour by my friends, or anything outlandish, simply because he has type 1 diabetes.

However, Bryce’s email has made me consider a question.

“When your life suddenly gets complicated, how do you define a true friend?”

I questioned myself. What have I done recently that could be considered a gesture of good will?

I sat and gave my neighbour performance tips the day before her violin exam.

I heartily congratulated Lance’s friend, Lachlan when his goal won his team’s soccer match and organised our local paper to get a shot of him and his Beckham skills.

I put up my hand to babysit my friend’s twins,(one of them eats dirt and gravel every chance she can get), when she felt that some alone time with her partner would be beneficial.

A simple gesture can make someone’s day, and not take a great deal of effort or energy out of yours.

It’s been a long, long time since I received an out-of-the-blue phone call from a friend.

I realise, that yes, especially when Lance was younger, phone calls with me were difficult. However, I learnt how to speak, on speaker phone and set up a glucometer, and gave my baby a finger prick without another soul knowing-I try to give my full attention to people who have found reason to call me.

However, as I said, in the early days, I would have to simply hang up mid sentence, as a smiling but vacant-eyed Lance would be ready to bungee-jump off 1.7mmol/L any tick of the clock.

I was always the one who let the “team” down, because Lance had just happened to have three consecutive horror days in a row, and he was naturally very clingy to me after these episodes. The sighs of frustration and impatience used to sting my extroverted soul, everytime I’d have to make the phone call..

“I’m sorry, I just can’t leave him. He’s only 2-and-a-half, and my parent’s won’t know if he’s crying because he’s sick or low or fretting, and I will be the most atrocious company.”

GROUP SIGH FOR KATE, SHE’S NOT UP TO COMING…AGAIN.

My point is, Bryce’s link about the natural wonder-properties of broccoli was just an incredibly thoughtful and kindhearted gesture. I don’t care that it won’t cure Lance’s diabetes, or that he won’t magically regrow islet cells as a result of broccoli a la puree consumed three times daily-it was just an incredibly kind thing to do.

Broccoli-Super Food and Natural Smile Inducer.

Someone cared enough to think of my little boy, and me, and pass on some information THEY thought may help us.

With the miracle of the internet, how easy would it be to email a friend, who you know could do with a:

“Hi, just wanted you to know that I was thinking of you…”

Thank you so much, Bryce, for thinking of us. Your link about broccoli means more to me than ten links of pure gold.

1 AND 2 Do Not Go Together.

23 September, 2008 · Filed under By Kate, Diabetes me, Diafrustration, Fundraising, Hope For A Cure, Insulin Pumps, WDTID News · Tagged advertising Diabetes in the media, anger as as parent, confusion between type 1 and 2 diabetes, Diabetes Australia, Kyle Sandilands, Marcia Hines, obesity crisis in Australia, postive feedback from insulin pump therapy, Type 2 Diabetes, What's the buzz Day

Thanks a bunch to whomever is responsible..

Every September, Australia celebrates ‘What’s The Buzz” Day. We also have an annual Diabetes Awareness Week. That last sentence makes me want to force 1000 fingerpricks until the end of the lancet is rounded upon the person/people responsible for lumping type 1 and type 2 diabetes together.

Once AGAIN, the nation is utterly confused, and has no idea about where or what type of diabetes plays a role in childhood obesity.

You See, Diabetes Has Basically Become A Polite Way Of Saying:- “Lazy Tub Of Lard Who Injests Sugar and White-Flour Laden Foods Every Moment Of The Day…

There are newspaper articles with the latest count of people with “Diabetes.” (Notice, no distinct segregation of type 1 and 2 diabetes listed by the journalist or the source.)

There are fears for the judge everyone loves to hate on Australian Idol. Due to his punishing work load, (starting the day at 3am to do his radio show, and then working through the day with his Idol commitments), Kyle Sandilands quaffs up to 30 lattes and numerous litres of Coke, along with a packet of cigarettes everyday. He unashamedly admits that his diet is less than desirable, and he has recently been branded as an appalling example to the young listeners of his successful radio program, and the young fan base that religiously follows Australian Idol. Last year, he was diagnosed with elevated blood pressure that has him branded as a walking heart-attack. Like him, or loathe him, he is overweight,but he doesn’t deserve to have the media behaving like vultures, waiting to see him on a stretcher.

However, then, we have his fellow Australian Idol judge, Marcia Hines, who has lived with type 1 diabetes for many years now.

Despite being diagnosed in her mid-thirties, Marcia now spends every second of every day loving life. She has a successful career, a wonderful husband and a world-wide fan base.

Marcia-Our Type 1 idol.

So, you could imagine, to my dismay, Marcia Hines appeared on an advertisement during the verdict show of Australian Idol, warning fellow Aussies to get checked out by their doctor and to watch their weight. She then goes on to say, “Diabetes is a serious condition, hey, I’ve got Diabetes!”

However, there was no mention of the insulin pump that continuously infuses insulin into her body, so that she can focus on her job and not have to worry so much about what her levels are doing. Under her signature, bright attire, that compliments her cocoa skin so beautifully, lives a Medtronic insulin pump-currently only used for people with type 1 diabetes in Australia.

So, who on earth is reponsible for having the likes of Marcia Hines, speak about her condition so casually?

Is the Federal Government in a lather over the alarming surge of type 1 AND type 2 diagnoses?

Surely, Diabetes Australia aren’t using a valuable person with fame and recognition behind her, to plug diabetes as what happens when you “supersize”…

Someone with Marcia’s celebrity calibre is too valuable to be fobbed off as a “Diabetic.” Why wasn’t she encouraged to speak about her work with kids who have type 1 diabetes, and the fact that she had to hide lollies in her chair when she could feel an impending hypo on live television??

So, we have one man, who is technically, “obese”, and has not even uttered any fear of contracting type 2 diabetes, and then, a disciplined, highly respected woman, who has lived with Type 1 Diabetes for almost 20 years, almost “forced” to disclose the fact that she has an auto-immune condition, for the pure purpose of shock advertising..

“Wow, if Marcia Hines has Diabetes, I could get it too! I mean, she’s in her late fifties and she looks amazing!”

If this is the case, I am utterly sickened.

Marcia responded to a letter that Lance and I wrote her at the beginning of last year-she commended us for our fundraising efforts. She also took the time to write some inspirational words to Lance, encouraging him to never look back, and to allow type 1 diabetes to make him stronger.

(Lance was so starstruck, and impressed that he had received a response from the female judge of Idol!!)

I just want to get one thing clear.

I hold no resentment towards anyone who suffers from type 2 diabetes, no matter if it was bought on by lifestyle choice, heriditary factors, the end result of suffering from Gestational Diabetes, or even if certain medications caused beta cell damage.

It’s ALL tragic, and concerning for anyone, no matter what age, sex, race…IF YOU ARE SERIOUS ABOUT LOOKING AFTER TYPE 2 DIABETES, AND LESSENING YOUR CHANCES OF COMPLICATIONS, IT IS REALLY HARD WORK!!

However, when people see my son, and associate him, or me, as his mother and carer, with images like this:

Images Such As This Are Hammered Into Our Heads Through Advertising. People with Type 1 Diabetes Are Thrown Into The Same Category. SHAME!!!

I cannot begin to describe the anger and hurt. It’s easy enough to say, “Ah, take it with a grain of salt..”, “people are ignorant..’ This is MY son that people (who think they ARE right!!) are casting judgement upon.. MY son, who did not ask, or deserve this condition, and yet is asked almost everyday a variation on the same theme.

‘Did Mum give you a lot of sugar as a baby?”

“Does Mum have diabetes, too?”

“You shouldn’t be drinking soda if you have diabetes!!”

“At least you don’t have cancer.”

I am the first to admit that I tend to harp on this issue regularly in my posts. I only have one child, and I gave my ALL to make sure that he had everything and was given the very best of care. Yet, when people give ME a look of “Well, you learnt the hard way, didn’t you?” I could almost scream and stamp and have a tanty like the best of them.

I’m tired for Lance, having to defend himself.

I’m tired, full stop.

Whoever is responsible for this disgraceful and heartbreaking advertising, you are messing with some really passionate and like-minded parents!

However, on a brighter note, my brother, (who last saw Lance just before he got his pump in late July,) caught up with him on the weekend. He was astounded by “how at peace, and how calm” Lance seemed, and how much healthier he appeared. (My brother is a man of very few words, so coming from him, these observations meant so much to me.)

I do apologise for the venomous rant, and I never want to hurt anyone by doing so who has Type 2 Diabetes.

It’s just this “obesity crisis”…it’s the topic on everyone’s lips. It’s heartbreaking to see a morbidly obese child who IS Lance’s age, licking the last morsels of Cheesel salt from their fingers… I am simply blown away that a parent could become so ‘relaxed’ with their child’s wellbeing. It takes so much work to undo years of bad habits associated with food. Maybe these kids feel like I do, angry that they have suddenly become persecuted and in the limelight for all the wrong reasons.

I appreciate that the government are not taking this grave issue lightly, but the spotlight is being falsely aimed at a demographic who have never had an issue of any kind with obesity!!

And of course, you know the first disease that comes to mind as a result of “indulging in one of the deadly sins”.

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