Monday, February 14, 2011

Bittersweet Sympathy

Lance was stretched out in my bed, a half-read book open on his chest. A slight frown had etched itself into his forehead.

He had both feet pressed up against a pedestal fan.

This was the very first indication that something was terribly wrong with my child.

 (If I didn't realise it at the time, I most certainly realise it now.)

I instantly expressed concern for the safety of his feet, and asked him to remove them from the fan.

"My feet feel like there is lava flowing through them..."

(That sentence pained me to write. It actually made my stomach knot. )

Lance asked me to feel how hot his feet were. I sat on the bed and placed both of his feet on my lap. They were both cool. No heat coming from them at all. No discolouration. Nothing at all. It was a beautiful, temperate Spring day - it wasn't like the weather was a factor.

He held his feet back up to the fan. "It's so uncomfortable, Mum. I can't even go to sleep. It's so annoying."

Finally, at 12.30am, he drifted off to sleep.

I was worried. I had read about people with diabetes having neuropathic pain and nerve damage as soon as 15 years after diagnosis. I was familiar with the words, "Peripheral Neuropathy." As soon as Lance finally drifted into a sound slumber, I sat at my computer and googled the keywords, "Type 1 Diabetes burning feet".

My heart sank and broke at the same time when the results flashed before me on the screen.

Every article or story on the first page had horror stories or grim outcomes about nerve damage as a result of unstable blood sugar control, and I saw the word "neuropathy" over and over again. I silently berated myself  for trying to obtain a diagnosis from Google and went to bed. If the burning sensation had not stopped by morning, I would be definitely taking him to our family doctor.

The next morning I was so relieved when he said that the "lava" sensation was gone.

However, later that evening, he was wide awake, pacing backwards and forwards up and down the hallway, and soaking his feet in a bucket of cold water. Again, he went to sleep to sleep well after midnight.

The next morning, I wrote down the words, "Peripheral Neuropathy" on a piece of paper. I rang my doctor's surgery and secured an appointment for later that day.

Our family doctor has been treating Lance since he was 4 years old. He has seen Lance at both extremes; the worst hypo Lance ever experienced occurred outside the doctors surgery. Our surgery is notorious for running behind schedule, and on this particular occasion, by the time we had completed our appointment, two hours had passed. I had not even been out of the premises for one minute, and I had to return with my baby, a dead weight in my arms, totally limp with a pallor that was almost translucent, complete with a blood sugar level of 0.6mmol/L (10.8mg/dL). TWO glucagon injections were required to stabilise him and steer him our of the danger zone. (It took 48 hours for him to recover from that hypo. He was paralyzed with a blinding headache, and his ribs ached from his the constant vomiting and heaving - these were obviously symptoms from the overdose of glucagon. The most alarming after-effect of that hypo was confusion,jumbled sentences and thought processes. He was so frustrated with the words that would come out of his mouth, because they weren't the ones he wanted to say. He was clearly displaying signs of some loose circuitry over those two days. No one, (excluding me) seemed particularly concerned though.)

Our doctor, (who I will refer to as Dr P) has also seen Lance dry reaching as a result of DKA - he had large ketones but in-range blood sugar levels as a result of a gastro bug. So, you get the picture. Our doctor knew to expect the unexpected when it came to Lance's diabetes.

At the appointment, I broached "the subject" immediately. 

I pressed the piece of paper with "those words" in front of my doctor.

"What's the chance Dr P? There have been symptoms two nights in a row."

I told him about the nocturnal feet burning, and how it was so uncomfortable that it prevented Lance from being able to sleep. He shook his head and cut me off mid-sentence.

"No chance. There is NO chance of this happening. Not in a child. It just doesn't happen."
I breathed a huge sigh of relief. Dr P said that it was most likely a case of growing pains, and to administer liquid paracetemol two hours before bedtime, in an attempt to alleviate another potential episode.

Dr P laughed heartily after examining Lance's feet.

"You have been worried for two days over this? You've got nothing to worry about." I felt a lump form in my throat and my hot tears spilled down my face. I felt like a fool. Still, Dr P hadn't seen the level of discomfort that Lance had encountered. 

That night, I gave Lance a dose of paracetemol as instructed. Sure enough, the burning sensations appeared again. By the end of the week, we were both delirious from sleep deprivation. I made another appointment with our doctor. "I'm not satisfied that this is growing pains. Can we get a referral to a foot specialist who specializes in type 1 diabetes?" I asked.

I could see a pained, "you're panicking over nothing" glimmer in my doctor's eyes. However, he knew I wasn't going to let up, so he reluctantly began to thump out a referral with two fingers on his keyboard.. The three of us sat in silence while he typed. The vibe in the room was overwhelmingly obvious-I knew he thought I was overreacting to an unhealthy extreme. He finished the letter with a sigh, printed it out and handed it to me.

These feelings of doubt, dismissal, and the implied accusations of being a hysterical mother did not sit well with me at all.

Little did I know, that over the coming months, these unspoken assumptions would soon become loud and clear, and I would have to fight like a demon to prove my sanity, and even worse,that my son's worsening symptoms were real.

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