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.

Urban Truths of the Emergency Room

If you thought the night at the hospital with Doogie Howser waving his miraculous Panadol at me was a joke, then brace yourself  for this post.

After Lance first begged me to take him to the hospital, we presented at Emergency EIGHT times over the next month. We were desperately waiting for an appointment with the podiatrist, and then our beloved endocrinologist - the man who diagnosed Lance back in 2002, and who had been seeing Lance every 3 months ever since.

Until then, we were on our own. Lance, Google, and Me.

At one of the eight A&E admissions, a doctor told me that Naproxen, a drug used for period pain, could be useful in settling down this "mysterious pain". She wrote him a script and told me to give it to him 3 times a day. It did nothing.

The second time, a doctor questioned me at length for forty minutes, asking me if my separation from his Dad could have been a trigger for this "mysterious pain". (We separated in 2003. At this point, it was late 2008/early 2009.) After he psycho-analyzed me, he too presented me with a bottle of children's Panadol.

The third time, a very junior intern asked me if we had considered acupuncture. I told her that at this stage, I was willing to try anything.

Big Mistake..

 The moment I mentioned that I would consider it, she had the name of an acupuncturist written on a piece of paper and then practically pushed us out of Emergency.

The forth time, we were seen by a doctor whose Mother language was not English. He was more confused about the pain than I was.

The fifth  time, I called the ambulance.I knew that the paramedics would get him "behind the scenes" and we wouldn't have to wait...wait...and wait some more.  Lance was so overwhelmed with pain that he couldn't speak. He was hyperventilating, desperately communicating to me with his eyes. Those beautiful baby blues expressed so much fear, so much pain, so much despair. My child was averaging four hours of broken sleep a night.

 All I could do was hold him tight.

The paramedics appeared - one male, one female, and one young female student who was doing the "rounds" with them. They appeared very confused as to why Lance was in such a state when his blood sugar levels were normal. I explained the story so far as consisely as I could to the male paramedic. He said, "It sounds like he has an all over body neuralgia related to his diabetes - that's what it seems like. One thing I know...

"He's certainly in distress, aren't ya mate?"

He gently patted Lance's head, and stroked his arm while he asked me some more questions.

The pressure to perform was on for the young student ambulance officer. The male paramedic asked her what she thought was suitable treatment for Lance.

She asked me if Lance had ever had the "green whistle", and suggested it would alleviate Lance's obvious distress and anxiety.

Lance hadn't ever had this kind of treatment. He was instructed  to inhale and exhale deeply whilst sucking on the end of the whistle. Within about two minutes, he seemed much more relaxed, and maybe even slightly dazed.

The female student paramedic asked him if he felt any better.

He didn't reply.

She gently shook his leg and said, "Lance? Do you feel any better?"

Lance gasped, as if he had just been woken from a nightmare. His face was etched with sheer terror - I will never forget how horrified I was when my gentle, sweet little boy proceeded to punch her repeatedly several times in the arm, with every bit of strength he could muster.

I held his little hand back - his knuckles were white, he was clenching his fists with such might.

The male paramedic asked the student if she was okay. She seemed shaken, but she said she was alright.

(The other female officer stood back, observing, and writing down notes.)

Student Paramedic then asked me if Lance had any behavioural issues that they should be aware of, or if he could be a danger to them or to himself.

I replied, "None, and NO.  How he reacted to you was obviously a reaction from the medication he just inhaled."

She shook her head repeatedly, and quickly informed me that she had never witnessed such a violent outburst, and that "people are usually relaxed and quite sedated" afterwards.

(I wanted to ask her exactly how many times she had administered the "Green Whistle" to be able to make such a claim. I chose to bite my tongue, though. These people, especially the male officer, were so kind, and sympathetic - I could tell they were genuinely concerned about Lance's state.)

It was decided that Lance would attend the hospital via ambulance. After the medication wore off, he grimaced and asked the student officer, "Did I really punch you or was that a bad dream?"

"It was for me!" she replied.

Mama Lion didn't appreciate that comment, and Student Paramedic obviously knew it, by the daggers I shot in her direction.

"It's okay mate, these things happen. I've had worse." she added.

The fifth visit, Lance was fortunate enough to be examined by the Paediatric Registrar.She listened very carefully, and spend a long time reading over the notes her colleagues had made.

She was the very first person who found it odd that this sudden onset, severe, neuropathic pain commenced after the commencement of insulin pump therapy. To her knowledge, there was no connection though;she just voiced that it seemed strange. She "pulled some strings" and got Lance an emergency appointment with the hospital registrar for four days time. She also wanted Lance to start on a drug called Carbamazepine - an anti-convulsant and mood stabilizing drug. I was initially confused as to why he would need to use anti-seizure medication for pain, however, she explained that it was often used off-label for many severe pain disorders. I agreed, and he started that night. We were told that it would take at least two weeks before we knew if there would be any signs of any improvement.

TWO WEEKS??

Would we still be living this nightmare in TWO WEEKS?

The kindness shown to me by that Paed Registrar reduced me to tears. She was a mother herself, and she was concerned, even though yet again, her examinations of Lance found him to be neurologically intact. She promised me that she would write a letter of support to the Hospital Paediatrician.

The other times don't warrant mentioning. They were such a waste of time and energy. In the end, Lance begged me NOT to take him to the hospital anymore.

"If I have to have this pain, I just want to have it at home. No more hospital, okay Mum?"

"No more hospital, sweetheart."

Those words haunt me to this day. Mothers aren't supposed to make promises they can't keep.

Prelude

The hero in this story is my ten year old son, Lancelot.

From here on in, he shall be referred to as Lance.

My Lance is an everyday, Australian kid who has a passion for collecting coins, cards, rocks and books.

He loves words and has a pretty impressive vernacular.

He's a Gleek and an Adam Sandler fan.

He has the softest, most gentle nature. I call him my pink marshmallow.

Everyone who meets him falls in love with him.

He has a very old soul - people often comment that he's "been here before."

However, there's a side to Lance that not many people see.

It's not because we try to hide it - on the contrary. I guess, after living with it since the age of one, he's become accomplished at making it blend into his life.

My only child has type 1 diabetes.

Anyone who knows about this beast of a condition will know that it's NOT an easy ride. It's a diabolical
rollercoaster.Lance has had his fair share of challenges with his condition.

He's endured countless severe hypoglycaemic episodes..

He's lost chunks of time due to seizures -the final symptoms a person with type 1 diabetes experiences before lapsing into unconsciousness.

I've found him unconscious in his sleep on three occasions, and had to perform CPR on one.

In fact, up until July 29, 2008, our life was controlled by Type 1 Diabetes. Anyone who lives with a chronic illness isn't supposed to say that. That they are controlled by their condition.

But we honestly were. Lance was diagnosed as having brittle, difficult to manage type 1 diabetes right from the start.

However, in the beginning of 2008, I decided that enough was enough. Lance's quality of life was just terrible. He couldn't go anywhere without me following him. Even being in a different room in our house was a concern- there have been times where he hasn't responded to my questions or comments and  I have found him "asleep" and slowly slipping away.

His endocrinologist promised me that insulin pump therapy would change his life. It was a chance to buy him a quality of life that was fitting for a child of his tender years.

And on July 29, 2008, our life did change for the better. It was better than better. It was as close to "normal" as one could achieve without a fully functioning pancreas.. After four days of pumping, Lance exclaimed, "Mum, I have so much energy! I've never felt like this before!"

Gone were the days of punishing lows in the low 1's, that would then skyrocket to the the 20's after consuming a mere 15g carbohydrate. (this equates to a small popper, or better known to our international friends as "juice boxes.")

My Lance almost seemed "cured"..His blood sugar levels were consistently in normal range.

It was nothing short of a miracle. I wept tears of joy and sheer relief that my son finally had a chance at leaving his fragile life behind him.

However, our smooth transition into insulin pump therapy was short lived.

On the evening of the 14 September, 2008, a mere six weeks after having close to perfect blood sugar levels for the first time since his pancreas died all those years ago, everything came crashing down.

 Our lives, quite simply, would never be the same.