Archive for December, 2008

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.

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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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All quiet on the Western Front

Hi all!

It’s hard to believe we’re in December, counting down the days until Christmas. We’ve all been running around madly, and I thought I’d just reassure everyone that this blog is quiet, but not forgotten!

Lance has had his 8th Birthday, and he’s been inundated with gifts and love. We expect he will emerge from his own Lego-land sometime in 2012. He wants to thank everyone who has been keeping him in their thoughts and prayers, especially since the diagnosis of peripheral neuropathy. Doctors and health-care specialists are looking into a range of ways of helping him, and Kate is doing everything in her power.

Talking of Kate, she’s just embarked on a new endeavour, and it’s keeping her mighty busy. Which is why I’m writing. Between her job and Lance, she hardly has 5 minutes to herself.

Not a great deal has been happening in the diabetes world, but great news for those in Africa, announced yesterday: Novo Nordisk is providing FREE insulin to 10,000 diabetes-affected children (Danish firm to give African children free insulin – Reuters).

I know you are all keeping both Lance and Kate in your thoughts, and they both appreciate it. Feel free to contact either of them on the email addresses hidden somewhere off on the side-bar there –>

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