Archive for Peripheral Neuropathy

A Time For Reflection

Devoted readers,

I apologise forthwith for the lack of updating of this page, but my life, as Kate and Lance’s, has been filled to brimming with events and occurrences. My dearest nephew has been in horrible pain, and Kate is trying to cope on little sleep and a life almost devoted to D and PN.

Please, send your wishes on to them, and pray that relief will soon be at hand.

I want to reflect back on what has been a trying time for Kate and Lance. Their tireless work throughout this year to prove to doctors that PN can exist in a young child has resulting in help from many of you, for which I thank you all. I will shortly write a more detailed post, when I am not knee-deep in Carbon Nanotubes and trying to sort out plagiarising students.

We hope for a cure to come swiftly to aid all of us, and hope for the best for Kate and Lance.

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Turkish Research

A short post from me this morning… I was doing a little research yesterday, and stumbled across reference to this article:

Peripheral neuropathy in children with insulin dependent
diabetes mellitus

Fiçicioğlu C, Aydin A, Haktan M, Kiziltan M.
Istanbul University Cerrahpa şa Faculty of Medicine.
Turk J Pediatr. 1994 Apr-Jun;36(2):97-104. (Link)

Peripheral somatic nerve function was studied in 38 unselected diabetic children and 31 age and sexmatched
healthy controls. Thirteen of the 38 diabetics had abnormal peripheral somatic nerve function tests (more than 3 SD below the mean for normals). Five of the 13 diabetic children had only abnormal peripheral nerve function (early asymptomatic neuropathy); seven of these 13 were abnormal both in neurologic examination and peripheral nerve function (asymptomatic neuropathy). Only one of the 13 patients showed neuropathic symptoms as well as an abnormal neurologic examination and impaired peripheral nerve function tests (symptomatic neuropathy). Both motor and sensory peripheral somatic nerve abnormalities were related to poor glycemic control (HbA1c) and duration of diabetes. Individual peripheral nerve tests correlated with HbA1c (fibular motor, p < 0.001; sural sensory, p < 0.05) or duration of diabetes (fibular motor, p < 0.01; median motor, p < 0.01). These results emphasize the importance of metabolic control and duration of diabetes in the pathogenesis of diabetic neuropathy. The findings suggest that peripheral neuropathy is common in young, insulin dependent diabetics. Being easy to conduct and sensitive, regular followup of nervous function test results may help to achieve good metabolic control and prevent diabetic complications.

In other words, of 38 randomly selected Type-1 diabetic children, ONE THIRD had some degree of Neuropathy. If your doctor doesn’t believe you that children can have it, print out this blog post and take it with you.

If anyone has access to the Turkish Journal of Paediatrics, I would be very greatful for a full version of this article, my University only has back to 2002.

With love and jelly-babies,

Janek xx

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A rant on modern medicine

I’m sorry I’ve been a little slack in keeping everyone up to date here on Kate and Lance’s blog, but I’ve been a little caught up in a few other things and have just found some time to sit down.

Things have not been going well for my sister-in-law in the north. She and Lance have been racing around trying to find an answer… any answer for Lance’s pain, which no doctor seems willing to believe is Peripheral Neuropathy. It’s at times like this we wish that modern medicine would stop thinking that every person fits into the categories written about in their textbooks.

Life is not identical for each of us. We are not exposed to exactly the same conditions as any other person every day, and even then our bodies respond to things differently. Allergies and intolerances are a prime example of this, and the varying degrees people may be afflicted with such debilitating illnesses as Diabetes, Chronic Fatigue Syndrome, and Fibromyalgia, as well as even things such as stress, anxiety, and depression, means that no doctor can just look in a book, point to a word and say “You have this!”.

It is imperative that Western Medicine remembers to think laterally and logically, combine all factors, and think about the exact conditions that the person is presenting with. If a child is crying every night and requiring 24 hour care to try to ease his pain; if a child can’t feel a pin being forced into his foot; if a child has continual burning sensations in his legs, then that child is probably not making it up and attention seeking.

As you can tell, I am seething from the news Kate has been telling me. It is disgraceful and disgusting some of the medical advice she has been given, including “just ignore it”, “it’s growing pains”, and “it can’t be neuropathy, he’s too young”.

It is good advice for all persons to remember, don’t just take your doctor’s word each time. Ask for a second opinion if you don’t believe what they’ve said is the case. Go to another doctor in your town, or, if you have to, travel. Find out who is the best person for your symptoms who might be able to help, and demand to see them. Do not just accept defeat and that you’ll just have to put up with anything.

Be bold, be strong, and be well.

Janek xx

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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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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.

 

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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!)

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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. 🙂

 

 

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