The Nerve Man.

Wake up to cat marching on my back.

Gently give Lance a shake and a kiss.

Breakfast.

Put referral and medications in bag.

Give ibuprofen to Lance.

Get dressed, take a deep breath.

Lance dressed.

Curls up like a centipede on the rug.

Drive to hospital.

Go inside, ask for directions.

Walk up a long corridor that feels like it will never come to an end.

Walked past the Oncology Ward.

I keep my head purposely facing forward.

Lance slows down. He can’t make it to the end of a corridor.

I pick him up, and put him on my hip, the hip where he has spent so much of his life in silent pain or audible agony.

Turn right into room.

Young male receptionist. (Even in distress, I was still aware of his good looks.)

“Lance?”

“Yes. Sorry we are a little late. Long corridor.”

Doctor emerges.

Thin lips break into slight smile.

Takes referral.

Squinted eyes scan over it.

Forehead ruffles.

We are told to get Lance comfortable on one of  so many examination tables.

Lance lies down, shoes off, hospital-starched- pillow snaps as his head lowers into it.

Holds my hand.

“Okay Fella, Im just going to look at some of the nerves in your legs.”

Lance nods.

Turns on a machine, straps a black band around Lance’s shin.

Lance winces as the first shock is administered.

Doc uses tape measure, makes a small marking on Lance’s leg with blue pen.

Ferociously writes down measurements.

Next shock.

Nothing.

Knob gets turned clockwise.

Lance grimaces.

“Felt that, hey Fella?”

“Yep. It felt like an electric shock.”

“Well that’s what it is really! You got it in one!”

More measurements, more scrawling numbers.

One last one.

Lance takes big breath.

Lance’s leg jolts.

“Forgot to turn the power down, there! Sorry Fella.”

Repeats. Lance stares at the ceiling.

“You okay Fella? You’ve been really good, reaallly good.”

“I’m used to obeying doctors.”

“Mum, I’m not commenting on anything until I do some precise calculations, but from what I can see here, there is a slight…..”

Tsk tsk tsks like one would take to a rabbit or a guinea pig.

“There’s something askew.”

Askew.

“I’ll get all of this written up and send it to Dr Congo. I should have results to him by Tuesday?”

“What do you think about the medications Lance is taking?

“I’m the Nerve Man. I wouldn’t know, Mum.”

Mum smacks her lips together silently in annoyance.

“Okay Fella, up ya get! Need a hand? Alrighty then.”

Lance puts on shoes.

We are ushered to young male receptionist.

The Nerve Man mumbles a series of letters and a number.

YMR nods and begins writing a receipt.

The Nerve Man shakes my hand.

“Mum, he’s only eight. Dr Congo is just watching his back, I think.”

“I asked for the appointment , actually.”

“Right….” he says, his voice trails off, as if he was going to say something else, but doesn’t.

YMR smiles very sweetly at me.

“That will be $450 thank you.”

I swallow in shock.

I try to keep my facial muscles as still as a botoxed starlet.

I hand over plastic money.

Small talk.

Bla bla.

Docket prints out.

My “autograph” is requested.

Receipt and docket stapled together.

Walk out of the office.

Reeks of Cauliflower puree.

We approach the corridor.

“Can we go home, now Mum? I just want to go home.”

“Yeah, me too babe. “

Get home.

Lance takes his position on the sofa.

Sighs with contentment as his shoes are removed.

I stare out the window.

Numb.

$450=Askew.

What a nerve.

 

 

 

 

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Comments (4) »

Hoping For The Best.

Lance and I just caught an early evening session of “Marley and Me.”

He had to lie on a blanket on the carpet halfway through as his pain levels were soaring, sitting in the same position.

We have our neurologist appointment tomorrow. I have my reference, the podiatrist’s findings and I am going to take all of Lance’s current medications. (Endep, Vitamin B1, Nurofen.) I am so impatient for a verdict, yet almost ready to pass out at the thought of a horrid diagnosis, like Juvenile Arthritis.

I am a nut case. I shouldn’t let my mind wander like this.

It’s a damn Saturday appointment, too, so I can’t go to the GP afterwards for translation or an opinion. 

Keep your fingers crossed for him, everyone. 

To everyone who has written such heartwarming and inspirational comments-thank you so much, for a few minutes, I don’t feel such overwhelming loneliness and fear. For all who are praying for a positive verdict, I thank you also. 

I will be sure to write tomorrow when I have a moment to digest the outcome of the appointment. Hopefully, I’ll have nothing sinister to report, and all of this terror I have felt this week will simply be a thought that turned into me expecting the worst instead of hoping for the best.

 

Comments (3) »

Lance And The Big Blue Tablet.

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!)

Comments (9) »

Incredibly Generous Poison!

Lance and I both developed a  soft spot for a totally-kid friendly American game show,  “Don’t Forget The Lyrics.”

I have a thing for the host…he’s an African American thirty-something hunk named Wayne Brady, who can sing, and is so passionate and eager for the guest to climb the money ladder-Lance is intrigued by the rather eccentric guests that attempt to win a million dollars by replacing the words or phrases of obscure or well-known songs.

 

I have  a photographic memory when it comes to song lyrics, and Lance has caught on to the fact that if I auditioned for the US show, that I may have a chance of winning the jackpot.

Tonight, we sat gobsmacked, as the host Wayne Brady announced who the Celebrity Guest would be.

Bret Michaels, lead singer of metal band, Poison, announced how he was a fan of the show, and that any money he won would not be going in his own pocket, but a place very close to his and all of our hearts.

The Juvenile Diabetes Research Foundation. (JDRF.)

Bret Michaels has had Type 1 Diabetes for 22 years, diagnosed at 7 years of age.

Lance’s mouth was still wide open as he heard the singer speak about his life on injections. It was probably the first time he had heard a famous male speak so honestly about living with their shared condition.

Bret Michaels won $200 000 for …..52441

The Juvenile Diabetes Research Foundation. (JDRF.)

Congratulations, Bret, for sharing your life story with young children, and more importantly, raising US$200 000!!

I have to admit that I am hardly a Poison fan…lol…but I will never forget the night that I watched some hope  for a cure with my son , delivered in the shape of the Bret Michaels. 🙂

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      

 

Comments (3) »

New Beginnings (Again.)

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. 🙂

 

 

Comments (2) »

The Repercussions of The Australian Summer versus Type 1 Diabetes.

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.

Comments (6) »

Accepting And “Welcoming” A Diabetes Related Complication.

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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