Things ain’t looking good for Lance.
He has been going to bed everynight at 2am, because he is in SUCH agony and discomfort with his feet and legs.Massage, warmth, paracaetamol, ibufrofen…I may as well be giving him M&M’s and rolling clingwrap around his legs.
I am so sleep deprived- if a sentence doesn’t make sense, please forgive me.
I took Lance to the doctor today. The doctor saw him and sitting on the chair, and said, ‘Your legs still hurting, Lance? The way you are sitting..they look, they look very heavy.”
We both nodded with bleary eyes. Lance isn’t coping with the sleep deprivation either.
I got a letter from the podiatrist today spelling out the hard, cold , agonising truth.
Catergory 1 (at risk) – “Neuropathy, no deformity-Patient is 1.7 times more likely to develop an ulcer than person of equivalent age with no diabetes. 6 monthly podiatry reviews required…..”
Sensory Test-”Monofilaments showed neuropathy was present with loss of monofilament sensation up to the knees….”
“My differencial diagnosis consists of SYMMETRICAL POLYNEUROPATHY….”
“Some suggestions would be Capasaicin, Oral Thioctic Acid, Tricyclic antidepressants, anticonvulsants, transcutaneous electrical nerve stimulation (TENS), Acupuncture…..”
“Given Lance’s age, I feel that due to the potential side effects the antidepressants and the anticonvulsants be kept at a last resort.”
Dr Congo took one look at Lance, and picked up his telephone. He dialled a neurologist whose books are full for an entire four months. By the end of the consult with Dr Congo, we had an appointment for Saturday!!!
However, the not-that-great news, is that Lance has to start a course of Endep. As much as I battled to try and avoid any oral medications, I realised that we were both floundering about in quicksand. I need sleep to keep him well and pain free, and take care of his diabetes. He needs sleep, because, at eight years old, five hours sleep is no where NEAR enough.
Endep is an ancient tricyclic antidepressant, which is also effectively used for the relief of chronic pain. He had his first tablet, a shower, and his dinner. I asked him a question, and 40 minnutes later, I could see his tonsils vibrating. Finally, his little body lay still, his legs relaxed, his feet…his beautiful feet looked so clean and just like the did when he was a baby.
Amatriptyline..otherwise known as Endep.
I made the obligatory calls to his team and I spoke to our regular endocrinologist’s partner. He listened in disbelief as I told him about the mornings events.
“Kate, you must rip the script up, I think you should consider getting a new GP for Lance.”
Somewhat puzzled, I asked “why???”, and he said, ”Well, he’s prescibed a low dose narcotic here to an eight year old, do you really want your son with a prescription drug dependency??”
(Turns out Doofus the Enodocrinologist was thinking of Endone, not Endep. (Endone is taken for severe pain, and is often referred to as “Hillbilly Heroin”, as you can get it for bupkus on a script, and apparently have a whale of a time if that’s what does it for you-it basically mimics heroin, but in the pharmaceutical tablet variety.)
I held that Endep script in my hand for so long, wondering if I should hold out until I saw the neurologist on Saturday. I took alook at Lance, who could have been a poster boy for “Antz in your Pantz”, and decided then and therefore it was up to me to provide him some relief, despite what the critics thought.With a heavy heart, and a few streams of tears, I took the packet from the the pharmacist. If this really is Peripheral Neuropathy without medication or treatment, I will never complain about Diabetes again. (I know, what a crock.)
Can I ask you all to keep him in your thoughts this week? He has been suffering in silence for ages now, simply because he thought it was “normal” to feel like this.
After his Nerve Conductive Test on Saturday, we will have a LOT more answers, and possibly a positive direction which way to go…
Again, I IMPLORE of you, just because you have a young child, or a teenager, or a twenty-something, does not MEAN a thing if you ain’t got that swing. Any symptoms such as painful legs, heavy limbs, pins and needles to the excress, no feeling in the extremities, unusually hot or cold feet, GET IT CHECKED OUT. Demand a test for PN, even if you get scoffed at by your family GP. A Podiatrist has all of the equipment to conduct the tests,and provide answers.
Having diabetes isn’t JUST all about AIC’ testing, eye checks, the annual urine sample…there are so many parts of the body that it affects. After being diagnosed for 5 years, go ahead and make the steps to organise the appointments yourself, EVEN if your GP tells you they are”‘not necessary.”
I just checked on my Lance. For the first time in months, he is sleeping peacefully, His legs are still. His face is relaxed, and not grimacing in agony.
Despite my hesitation regarding him starting the medication, I now know I did the right thing.
I’m going to follow him to bed, for the first time in years.
Goodnight!! (And it’s been a long time since I have said that, too!)
