Posts tagged massage to improve circulation

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 , , , , , , , , , , , ,

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 , , , , , , , , , , , , , , , , ,

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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