Wednesday, March 9, 2011

Dead Ends and Roundabouts

I was gutted after the soul-destroying consultation with the podiatrist. Her words and insinuations had sickened me to my core.

 These days, Lance was often quiet and forlorn.  Every day that passed, he experienced new pains, and intensifying pain discomfort not only at night, but also in the day. It soon occurred to me  that the window of pain-free time was getting smaller each day.

Things were becoming so complex - I regularly felt myself struggling to breathe - I often experienced the "butterflies" sensation that would leave me feeling panicky and gasping for air.

We had seen Lance's endocrinologist only a week before the pain started. I had been keeping Kelly, Lance's Diabetes Educator, informed of Lance's situation, only to hear, "Well I hope he gets better soon" or "maybe it's just a growth spurt - some kids get growing pains worse than others". (To this day, the term, "Growing Pains" causes me to internally implode.)

My primary focus was on Lance's next visit with the Endo. This would be the one person who wouldn't fob us off. When the sleep deprivation and low moments all seemed too much to bare, I would find comfort knowing that Lance's Endo visit was looming. 

Finally, the day arrived. We arrived at the hospital at 2pm. I had to piggy-back my son up two lengthy hospital corridors and a flight of steps. (Things that we take for granted like walking, standing, and wearing shoes had become difficult challenges we had to face every time we left the house.. Not only did we have to worry about all the complexities of type 1 diabetes regarding food, correct insulin dosage, carbohydrate intake,( the list goes on..),we also had to find parking close to building entrances so that Lance didn't have to walk too far and carry thongs in my handbag for Lance to slip on when wearing shoes became too painful.


The Endo, who shall be hereon referred to as Dr C, was 90 minutes late for our appointment. Lance was irritable, as was I. Finally, we were called in to the Consultation Room.

"This will have to be quick - I have to be out of the office by 4pm. (It was 3.45pm...) HbA1c is great, weight and height have been recorded. Any other problems?" he asked, while flicking through Lance's blood sugar level record book.

"Well - where do I start? Have you spoken to Kelly at all?" (Kelly the Educator worked closely with Dr C.)

"Oh - I think I remember something about growing pains? Is that right?"

"Well, no."

I told him all about the sudden onset of the pain.

I showed him diaries and accounts of Lance's pain journey.

I explained how my little boy frequently begged me to take him to hospital, and, on a more distressing note, how he had begun pleading with me to cut off his feet.

I showed him the reports from the podiatrist that suggested that Lance had a lack of sensation in his feet, and probable polyneuropathy.

He ran his eyes over the report. For the first time in what seemed like hours, he spoke.

"Well, I certainly wouldn't be accepting a neuropathy diagnosis from a podiatrist. They are certainly not experts in this field."

"I tend to agree - which is why I want you to run tests. Any tests. There's something seriously wrong."

"Well, I don't think we need to act too hastily about this, I really don't. I treated an eleven year old girl last year with type 1 diabetes, who presented to me with frequent headaches. Her mother insisted that we run every test imaginable. We did, and we found nothing, and the headaches eventually went away on their own. I would imagine the same thing will happen for Lance. Just give Panadol when he has pain, and I'll review the situation in nine months time. I really have to go, Kate - best of luck with everything, okay? Apologies for running so behind time."

And that, was it.He picked up his briefcase, opened the door, and walked out.

NINE MONTHS? NINE MORE MONTHS OF THIS? MY SON HAS TO ENDURE NINE MONTHS OF PAIN BEFORE YOU'LL CONSIDER HELPING HIM? ARE YOU FOR REAL?!?

My chin began trembling, and hot tears began spilling down my face. I was SO angry and had never felt such despair in my life. I tried everything in my power to pull myself together - I couldn't let Lance see me fall apart.

Did that consultation REALLY happen?

 My head was spinning.

 For a few seconds, I experienced nausea that was so overwhelming I thought I might be sick

I had to remind myself to inhale and exhale, over and over again.

The man who diagnosed Lance, saved him from the perils of DKA, and who spent hours with me over the years cluing me up on the science behind type 1 diabetes, had  LET US DOWN TERRIBLY.

The anger, disappointment, loneliness, fear, helplessness, panic, and uncertainty I felt bubbling over within me was so overwhelming. At that moment, any fighting spirit I possessed had been flattened.

However,it didn't take long for it to reappear, when Lance fell to the ground.

I can't walk. It's too hard. Can you carry me, Mum?"


"Of course I can, sweetheart."

I picked him up and he rested his sweet head on my shoulder..Then and there,  I silently  promised him that I would carry him and push through every dead end, every roundabout, until this terror was well and truly history.







3 comments:

  1. Oh, Kate, what you and your son have had to go through. As if D isn't bad enough!! And to be fobbed off like that - it's terrible and uncaring. No wonder some Drs have a terrible reputation!! Wonderfully written though.

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  2. Oh this makes me angry. "Frustrating" is too small of a word for what you're going through. That is one very strong little boy. I hope and pray he gets the treatment and relief he deserves SOON.

    -Ginger

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  3. Oh my gosh Kate. I can't bear even hearing what you had to go through. It's disgusting. We're dealing with an unusual symptom also and the doctors just don't want to hear it. Because it isn't common, they just won't take the leap to believing a connection. Yet I am living with the child. I can tell you I see the connection.It's there if they would just listen and see it. It's frustrating and sad.

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