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.

Insinuations and Allegations

The day finally came when we got to meet Lance's new podiatrist.

Prior to this, all of his feet examinations had taken place in Diabetes Clinic.

I had realised a few weeks before the appointment that the podiatrist, who I shall call Nicole, was two years my junior, and that we had attended primary school together. She had been recommended by our GP - apparently she had a fantastic reputation for treating adults with feet problems who had type 1 or 2 diabetes.

FINALLY, we could get some answers from a young, well-educated specialist, who is familiar with type 1 diabetes, and the different ways that pain manifests as a result of it. I was so hopeful for a positive outcome...

I was also sure that Nicole would remember me. I had hoped that our years at primary school together would eliminate any awkwardness in the consultation room.

(Today, one of the first things I tell people who are on a diagnosis journey is to "expect the unexpected"  - and to expect the worst as well as hoping for the best, every time they attend an appointment. Expectations that don't eventuate for whatever reason in an appointment can leave you gutted for days...weeks...months...)

Lance was slightly nervous about meeting Nicole. Since the night his pain began, other things had changed as well. Besides the atrocious sleep disturbances, he often felt nauseous. He had lost a few kilograms and his desire for his favourite foods had waned.  His blood sugar levels were much higher than we were used to - interestingly, this was most frequently at night. Night was when the pain was the most intense..In all of our middle-of-the-night adventures in the  Emergency Room, not one medical professional indicated any concern about this. The fact that Lance's BGL's were so high (for him) at night made SO much sense to me.

 If there is one thing I know for sure and certain, any physiological changes or disturbances in the body can cause elevated blood sugar levels. Even losing a baby tooth can result in higher levels for few days.I had begun ferociously studying and learning all I could about chronic pain, pain receptors - I had to know why pain happened in order to understand what was happening to Lance. (Somebody had to, right?)

 Nicole acknowledged that she remembered me. She was polite, professional, pleasant, but clinical and cold..  I instantly detected that treating and relating to a paediatric patient would NOT be her forte- and sure enough, she later confirmed my theory -she said that she had never treated a child with type 1 diabetes before. Lance was her first.

Everybody has to start somewhere, right?

Things didn't start off well. They went from bad to worse to WORST, very quickly.

Firstly, the language Nicole used was not age-appropriate for Lance. One of the first questions she asked him was, "Lance, is the pain neuropathic or muscular in nature?" Don't get me wrong-Lance is as smart as a whip. At the age of eight, he had a reading age of eleven plus. However, the blank expression on his face indicated to me that terms such as "neuropathic" and "muscular" pain were completely foreign concepts to him.(As they should be - the average eight year old shouldn't know what neuropathic pain is to start with!!)

 I translated the question to, "Darling, is the pain sharp rather than achy?"

 "Definitely sharp, it's not achy pain at all." he replied immediately, without hesitation.

Nicole didn't like me interpreting her questions and translating them for Lance. She said that she wanted him to attempt to answer her questions before looking to me for explanation. From this point, Nicole refused to maintain eye contact with me. She kept her eyes glued to her laptop screen.

She finished taking notes and used  nerve-testing instruments on Lance's feet and legs.

In the filament test, she observed that Lance had little reaction to a sharp sensation in his feet and legs. She typed manically on her keyboard, her face emotionless.

"Keep your eyes closed, Lance." she instructed. "Tell me when you feel a blunt prick, or a sharp prick."

(I wanted to ask her if she could show him what "blunt" and "sharp" felt like on his hand, so that he knew what to expect. I already felt like our personalities were clashing, so I decided to leave it go.)

She pricked his feet. He didn't respond.

"Are you concentrating?"

"Yes.."

"Can you feel any pricks?"

"Some.."

"Why didn't you tell me that you felt them?"

"I didn't know I had to."

She audibly sighed, and asked him to repeat the test. Imagine my horror when she abandoned the test, because he clearly was having difficulties with keeping his eyes closed. (Knowing Lance like I do, I knew he was incredibly anxious because he didn't feel comfortable with the way the instructions were delivered.) As a result, she concluded that his responses were based on what he could see, not feel.

Why was she being so dismissive and doubtful?

I could FEEL that she was annoyed.. Even slightly suspicious.

She then asked Lance if he could go and play in the waiting room. Lance and my eyes met immediately. This was something he had never been asked to do in a medical examination.Lance and I have always been a team.  I told Nicole that if she had anything to say that she could say it in front of Lance. She insisted that she and I speak alone.

Reluctantly, I told Lance to go and read a book while I spoke with Nicole. I armed him with his tester and his jellybabies. Nicole interjected and said, "Oh Kate, he's only going to be JUST outside. I don't think that you need to prepare him for a hypo."

Our eyes met. My inner Mama Lion was growling. I could almost imagine my upper lip curling upwards.

"Nicole, Lance does not go ANYWHERE without his testing equipment and lollies. We just don't take chances." She accepted this explanation but again, my "Hysterical Mother" alarm bells were ringing.

I told Lance I'd be as quick as possible. Nicole smiled at him. The second the door closed, her smile disappeared from her face. From this moment, ,I knew that she definitely disliked something about Lance's case, and I certainly knew that I disliked her approach.

"You and Lance are obviously very, very close. I'm wondering how close?" she asked.

"How about you just ask me what you really want to say?" I shot back at her.

"Is there a possibility that with all of Lance's JDRF advocacy work, he could have learned about diabetic complications?" she asked.

NO. Please don't go there.

"No. JDRF are very respectful -they do NOT speak directly about complications in front of the kids."

"I mean, could he have read about diabetic complications, in particular, diabetic neuropathy?"

SHE WENT THERE.

"NO.. I don't have reading material about complications lying about the house. Any newsletters or magazines I receive are of no interest to Lance. We try to find a way to make everything about his diabetes positive, or achievable."

"You have to admit that he's more switched on than your average eight year old though." she questioned.

"That's what living with a chronic illness all of your life will do to you...I've met and interacted with many other children who have grown up with type 1 diabetes - they are often advanced in speech, confidence, and often relate better to adults than children."

I couldn't believe that I was having to answer to these allegations! 
"I'm just wondering if he's replicating symptoms as a way of obtaining your respect? He obviously knows that you are very passionate about type 1 diabetes awareness."

"Yes, he knows that and,  no, he is my only child. He has my full attention. He has everything he needs. Can I digress and remind you WHY we are here? Did you discover anything abnormal in the testing?" I was seething at this point.

These were serious insinuations. This wasn't just me being overly-sensitive and reading into things too deeply.

She said that she would forward a comprehensive report to our GP in regards to her findings.

She then went on to say that if she googled type 1 diabetes and nerve pain that it would be very easy for a child of Lance's "switched on-ness" to feign symptoms for attention.

I was utterly flabbergasted and disgusted.

I told her that I was calling Lance back into the room. This subject was closed for discussion.

You can imagine my heartbreak when I opened the door, and discovered that Lance had been standing on the other side. He had his tester and lollies in his hands.. He had most probably heard EVERYTHING.

I paid the bill. I had a million emotions flooding my mind. I gave monosyllabic responses to Nicole's receptionist, who was painfully chirpy. (Nicole didn't even say goodbye to us. She told us that she would photocopy a form for me and meet us at the front desk. Instead,she paged her receptionist, telling her that the form was ready, and then asked her to get it to pass on to me. Nicole then returned to her consultation room.)My head was spinning. This was the last thing I expected from an appointment with a former primary school chum.

I'm so ashamed to say, that for maybe a total of sixty seconds, I considered her theories.

Was my son capable of symptom-searching? Is he really as well-adjusted as I give him credit for?

These questions were immediately erased, never to enter my mind again, with four little words.

An eight year old boy who had been describing lava flowing, hammers bashing, crystals scraping, electricity zapping, needles digging in his feet, then legs, then all over his body, for the past two months,  hung his head and uttered,

"No-one believes me." 





"

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.

Simple Analgesics and Simple Doctors

Lance experienced nocturnal bouts of feet burning and pain for two weeks straight. I was simply exhausted. He wasn't sleeping until 2 or 3am every night. He was also starting to get pain in his ankles, knees, shoulders, elbows and ribs - simple pain relief like Ibuprofen didn't alleviate any of them.

I was having a midnight shower one evening - Lance had gone to sleep, (only out of pure exhaustion) and I desperately needed some time to myself. I took the opportunity to wash my hair and shave my legs in peace.

Suddenly, I had a feeling that I was being watched. I glanced over my shoulder and gasped when I saw Lance sitting on the floor, with his back up against the wall.

"Mum, I need to go to hospital. Please take me. Please. I can't stand it anymore."
What child begs to be taken to hospital at midnight??

I quickly dried myself off and sat down on the floor with him. He told me that it felt like someone was bashing his feet with a hammer. He also said that it felt like there was a "heartbeat" in his feet, and every time it throbbed, he felt a burst of pain. After two weeks of paracetamol (panadol) and ibuprofen that did absolutely nothing, I realised it was pointless giving him simple analgesia.

We were greeted by a cheery staff member at the Accident and Emergency Department of our local hospital.

"What are you doing here at this hour, Lance?" she asked. (Lance is the kind of kid you'd never forget once you meet him. He had also many stints in A&E over the years due to severe hypoglycaemic episodes.)

"I have pain; it won't go away", Lance replied softly.

After the routine observations were performed (blood pressure, weight, blood glucose test, temperature,) we were taken to a room for paediatric patients. The curtain was closed, and we were told we would be seen by a doctor within the next 30 minutes.

One hour passed. Lance was pacing around and around the bed. It was the only way he could displace the pain. So much for hospitals being clean - the soles of his feet were BLACK.)

Finally, we were seen by a VERY junior registrar. I could feel my right eyebrow arch involuntarily. My past experience in hospital emergency rooms told me that there very little chance that this guy would be of much assistance to Lance.

He performed a host of tests on Lance's feet as well as checking all of his joints.  He prodded his feet with the ball of his pen, and asked Lance if he could feel it. He said he could.

"His feet are sensitive. There's nothing wrong there!" he said, with too much finality in his voice for my liking.

"Can't you see that he's in pain though? I understand that he's neurologically intact - he has had all of these tests performed before - we came here because my son begged me to take him! Now, please help him!" I pleaded.

"In all honesty, it sounds like you are asking for something. Are you asking for pain relief for your son?" the intern asked.

"YES, I am, but more importantly, I NEED you to help him. This has been going on for two weeks. His GP says it's growing pains, but as you can see, it isn't growing pains at all. No child with growing pains suffers this much!" I nodded towards Lance, who was almost in a trance-like state, shuffling around and around the bed.

"Okay, well I'll need to speak to one of the senior doctors about how to help him get some relief, and what their suggestions are. I'll be back."

Fifty long minutes later, he was back. He was back with a dose of children's paracetamol.

"With the utmost respect to you and your senior colleague, ARE YOU SERIOUS?" I exclaimed. "I could have given him paracetemol at home!"

"Well, lets just try it, and see if it helps. I'll be back in 30 minutes to see if he's had any relief."

I was frantic. It was almost 3am, and my son couldn't sit still. He couldn't lie down. He couldn't get comfortable. He didn't cry, or complain, but he was clearly stuck in the middle of a pain bubble. And they want to give him PANADOL? (It would occur to me many months later, that if Lance was the complaining type, and if he DID scream, shout and go completely ballistic, we would have had a much different outcome.)

When Doogie Howser returned to Lance's bedside, there was obviously no improvement. 

"I think, that you need to keep giving paracetamol every 4 hours. So, in four hours time, give him another dose. Then four hours after that."

"Well, I've basically been doing that!" I could hear my voice starting to tremble, out of a mix of fear and infuriation.

"You're more than welcome to bring him back if the pain persists. In the meantime, there's not really a lot we can do for him this morning. Just keep up that Panadol, though, okay Mum?"

I carried my listless son in my arms, and followed a line back to the emergency desk. The same cheery nurse who had greeted us when we arrived was just finishing her shift.

"Aww. He's all tuckered out. Are his blood sugars playing up?" she asked.

"No - it's apparently nothing. Nothing that panadol won't fix anyway," I spat back at her. Lance had finally given in to sleep at 4.20am. There were birds chirping and the it was no longer black outside. We were leaving worse off than when we arrived.