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!)
Penny said,
6 January, 2009 @ 1:15 am
I have added you and little Lance to my prayer list, Kate. I hope he gets some permanent relief soon and I hope both of you had a restfull night.
katerina said,
6 January, 2009 @ 5:29 am
kate i will be thinking of you all week. i think you did a brave and very kind thing for your son. i hope he feels and gets better i would also try alternative medicine accupuncture sounds good and also reflexology? lots of hugs katerina
Wendy said,
6 January, 2009 @ 9:13 am
I have a form of neuropathy not related to diabetes. I have tried all the meds you listed. I am hoping that the amitryptiline works for you. I will be thinking of you and lance. Also maybe ask if the lidoderm patches would help him. I am not sure.
Kezza said,
6 January, 2009 @ 11:44 am
YAY! I think the happiest thing I have read in ages is that both Lance and yourself are finally getting a more peaceful nights rest! Adding to any regime of medication is always difficult, weighing up side effects against benefits etc. but I do believe you’ve made the right choice Kate… Hell the evidence is right there. Be sure to keep us posted of any additional progress as it happens.
Jan said,
7 January, 2009 @ 5:51 am
Yes, you did the right thing. Ask for a pain prescription that is less addictive. You may have to investigate a bit. I hope you both got some much deserved rest. I truly don’t know how you both cope with all this, you are both very brave. I hear you about never complaining about diabetes again. Although it does not seem like it when first diagnosed things can get worse. Other health problems unrelated to diabetes can occur that are also worse. Seems so very unfair that a child should have to deal with diabetes and then has another health problem thrown on top of it! We are dealing with other health problems in addition to D as well (non-diabetes related). Keeping you both in my prayers and keep the faith. You have to see this through until there is an improvement for Lance. You have to keep investigating. Whether it is another specialist, an acupuncturist, physical therapy, better drugs…. You must find the help. I know you can do it! P.S. Your endo does not seem too sharp. Any chance of switching?
Bob said,
8 January, 2009 @ 4:20 pm
I have just been diagnosed with type 2 diabetes and come from a family of diabetics (my mother passed away as a result of diabetic side effects, my father is type 2, my dad’s father and brother were both type 1 diabetics and my brothers daughter was diagnosed as type 1 at a very young age). I had to write and tell you Kate how it heartens me to read of your struggles against adversity and your unerring determination for Lance to have as normal life as possible. My thoughts and prayers are with you both.
I think also you are doing the right thing, keep it up!
Joseph said,
20 March, 2009 @ 11:01 am
God Bless Lance and his Mom! My wife has a genetic form of neuropathy (nothing to do with diabetes). She is taking Lyrica and Darvaset for pain. It helped a lot as she couldn’t walk from the pain and now she shops (limited). We are still searching for a better answer, but are thankful for this amount of help…. We will remember you and Lance in our prayers.
Kathy said,
18 May, 2009 @ 2:34 pm
I just happened to find your blog. Blessings and hopes for the best for you and your son. You’re in my prayers. He’s lucky to have such a strong and determined mom who isn’t willing to just let things “happen”. Be strong. You’re cared about by more people than you may ever meet.