My 8 year old son, Lance, has had type 1 diabetes for the past 7 years. For the first six years, his blood sugar control was abyssmal. He was catergorised by his endocringolist as being a "brittle diabetic." When it got to the stage that he was on 8 injections a day, I bought an insulin pump for him. It took a lot of work out of our day, and provided us both with confidence and a better quality of life. His blood sugar readings are now almost perfect, and he occasionally will have a hypo that requires drastic attention. It was the best money I ever spent. However....
Nine months ago, I found Lance holding his feet up to his fan before bed. When I asked him what he was doing, he said that his feet felt like they were on fire. I thought he must have had a fever, however when I felt his feet and the rest of him, his skin was cool. I asked him if this was the first time he had experienced this sensation, and he said that it had been annoying him at bedtime for a few weeks.
I immediately let our doctor know. He wrote a referral to a podiatrist to investigate. She performed a filament test on Lance. He was unable to feel many of the jabs she gave him in his feet and legs. When she got to his knees, he responded with "OW!" She tested for deeper under the skin to see if he could feel a series of vibrations. He felt every one of them. She performed the filament test again, just to double check, and this time, she blindfolded Lance. She got the same result. She sent a report back to our doctor with her diagnosis-Symmetrical Polyneuropathy.
Our doctor refused to believe that an 8 year old could have this condition. He sent Lance to a Neurologist for a Nerve Conduction Test, which came back inconclusive.
Before Xmas last year, Lance's condition deteriorated very quickly. Every evening, he would begin to have pins-and-needles sensations in his feet and up his legs, as well as a throbbing pain, and a sharp, shooting pain. He also describes a sensation as "having a sharp stick scratching up and down" his feet. Paracetamol and ibuprofen proved to be unsuccessful in treating the pain. His appetite was poor, and his energy levels were terrible, partly because he was only having approx 5 hours sleep a night.
In January this year, i had to rush him to the E.R. His pain was through the roof, and he was actually moaning and grimacing. (After thousands of needles and fingerpricks, he's one tough cookie,so it was very odd to hear him responding audibly to pain.) His blood sugar level was 22mmol/L, despite the fact that he had gone to bed with a bsl of 7.2mmol/L. The registrar at the hospital was very concerned by the symptoms that were presented, and she wanted to start him on a morphine drip. However, she soon reconsidered and gave him a 50mg tramadol capsule. She also wrote a perscription for a anti-convulsant, (Tegretol) to help deaden the nerve endings.) He is on this medication to this day.
It wasn't long before I noticed a distinct pattern-whenever the pain begins in the evenings, his blood sugar levels soars to dangerous levels. (This is his body's natural response to pain/stress, caused by the release of adrenalin and cortisol.) His last A1C blood test was the highest it has ever been during his diabetic life.
We have been to so many different doctors and specialists. Many of them have little experience with insulin dependent diabetes, and therefore, do not understand what is going on. One paediatrican diagnosed "Pain Syndrome", and just 3 days ago, we travelled 150km to be told that Lance had "Growing Pains" by a paediatrician who has had some successes with diagnosing mysterious conditions.(I had Growing Pains as a girl, and remember the very difficult-to-explain dull ache in my legs.) The doctor suggested that he take paracetemol at 5pm in the afternoon, and this would block the pain that occurs in the night. (At this point, I sat in silence, and switched my brain off.)
Once Lance had taken Tegretol for about 4 weeks, there was a marked improvement in his condition. It gave us a 3 week grace period before the pain and discomfort reappeared. Our GP looked into increasing his dose, but a blood test showed that he couldn't take anymore, as it posed a high risk of liver damage/failure.
Lance's paediatric endocrinologist told us to not mention these symptoms to him for another nine months, as he was certain that they would go away. He too, refuses to believe that a child could show symptoms of neuropathy, or nerve pain related to diabetes.
Another doctor has suggested that Lance is feigning these symptoms for attention, and that he is stealing food at night to make his blood sugar levels soar. For one, my son doesn't know a life without diabetes. He has no desire to "cheat." I also spend every second of every day with him, and I am in control of his meals, snacks and hypo treatments. He insinuated that Lance had read about complications and was "acting out" the symptoms. Bring on an Academy Award for spending the time equivilent to a human pregnancy "searching for attention." We have not had the "complications" talk, and I am very particular about what he reads concerning type 1 diabetes. After all, he IS only 8 years old.( Despite having to endure some difficult trials in his short life, he is a bright, happy and loving little boy who is extremely charismatic and genuinely polite and respectful.) Lance has had to commence home-schooling, as he was missing huge amounts of school, and was falling asleep in class. Fortunately, he was able to skip Grade 3 and move straight onto Grade 4 at the beginning of this year. Before Lance was diagnosed with diabetes, I was a full-time teacher.We have organised Australian curriculum to be sent to our home, and I teach him.
We have the most absurd routines due to this condition. We are currently going to sleep at 3am,after hours of medicating, warm packs, TENS machine, meditation and making sure the bedclothes dont touch Lance's feet by using many pillows etc. (The sensation of blankets/sheets on his feet is very painful for him.) I wake up at 8am, and have to perform finger *****s on Lance every hour to ensure that his blood sugar isn't slipping while he sleeps. Lance will then wake at around 11am, eat "breakfast" and begins his schoolwork. Some days he is just so exhausted, and he is also beginning to experience pain during the day. We are both suffering from severe sleep deprivation, however this doesn't seem to be an issue to any of these doctors. It is impossible to plan activites in advance because we never know how each day is going to pan out.
I have spoken to a lady who has had type 1 diabetes for 23 years, and has the exact symptoms as Lance. She was diagnosed with diabetic neuropathy.I have also spoken to some diabetes specialists who have found that after 5 years since diagnosis, children are beginning to develop nerve damage in their feet, but the majority of them do not have any symptoms.
Don't get me wrong, I DON'T WANT him to have neuropathy!! That's the last thing that I would wish upon my son! However, we need help, and the team of doctors and specialists are not providing us with ANY support. I have suggested to our doctor that some blood tests ruling our Lyme Disease etc should be done. He laughed at me- mind you, his diagnosis was Restless Leg Syndrome. :eek:
I am desperate for any words of wisdom or advice. If you have heard of ANYTHING that sounds remotely familiar to what I have described, I would be so grateful for your input.
Out of sheer desperation, I have videotaped Lance in his tent of pillows, groaning and kicking all of the bedclothes off. I was also able to get footage of a fingerprick, his blood sugar level was 24.8mmol/L in the middle of a nightly episode. He also ripped his pyjama pants off out of frustration, because he said that they felt like they had been next to a heater. This, along with the nightly peaks in blood sugar are my only way to PROVE that this pain is real.
I look forward to your input. Sincerely, Kate.