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?"
"Can you feel any pricks?"
"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."