These are some of the phrases that Demarco has come up with to describe the many parastheses he experiences.

Lava and Machine Gun are pretty explanatory, rock solid is his definition for the feeling like his feet are made of cement, something I have found that many of you suffer from.

He also named "spear" pain, "crystal"-the sensation of scratching or scraping..

These descriptions were highly instrumental in finally getting a diagnosis.

He also talks about Pins and needles 1 and 2.

Pins and needles 1 means "the kind I used to have before my pain came, the kind that everyone gets."

Pins and needles 2 means "the kind that everyone has, except nothing you do can make it go away."

It must be so difficult to not be able to describe the way pain feels. That's where a lot of my heartbreak lies..that a child has to invent a way to communicate such unbearable sensations.

Anyway, I thought I'd share a little more about Demarco and his troublesome feet. The fact that he has grown up dealing with the trials of type 1 diabetes has been a "blessing," otherwise I don't know how a child of 9 would deal with this. Then again, he probably wouldn't have this problem without a life with type 1 diabetes. Go figure.

Kate

--at describing his abnormal sensations; in fact, more so than most patients much older.

I imagine part of the problem is getting doctors to take a 9-year-old seriously. Though many of us much older have had problems getting doctors to take us seriously.

I hope that insofar as is feasible, the neuros you can take him to can have some sort of specilization in neuropathy/neuropathic pain. Not all neurologists do, and many of us have stories of doctors who have shrugged their shoulders when confronted with our symptoms.

Or they have B.S.'ed their way through
to keep you on as a patient,
but did little to help.
(and prolonged the agony)

Oh yes they did BS- (growing pains..)
but they'll NEVER see Demarco again as a patient.
In fact, when I get some time, I am going to write a summary of the tests, medication and worsening symptoms since ea of the appointments to inform them that YES, this can happen to a child, and NEVER dismiss anything like this again without investigating first.

Thanks Bob for sharing your plethora of knowledge and kindness

Kate

This is a very interesting post. That is a very creative child you have there!

I have had so many different pains in my feet over the years!

Back when I was about 30 and beginning to develop hypothyroid issues, it was pins and needles 1 and spear pain (in the morning).
This progressed to a deep numbness over the years. When I finally found a doctor to correctly address my hypothyroid and give me replacement hormone, the numbness went to pins and needles 2. It took a year, and I was then in pretty good shape.

Then the insulin resistance really took hold after a few years, and burning started. Not quite lava, but close. On a bad day I'd have it running up my legs at night. I still have a small numbness in 2 toes on each foot, but it is not a big thing to me.
I found that eating potatoes was a big factor in the burning. Also MSG in foods. Aggessive use of Benfotiamine, r-lipoic acid,
chiro inositol, chromium, have really helped. (I take other things too, but not to target this specific problem.)
I am now doing l-citrulline and l-arginine and notice my feet are not so cold as they were. (hypothyroid people often have cold extremities and this is hard to control).

I had a root canal a week ago... a slowly dying tooth, that cracked off, and when that was finally done, I noticed that the
brief stabbing pains I was having all over may have been due to the infection from this tooth. I would have a few zings everyday, which moved around, but were not long lasting...maybe 3-5 seconds. I haven't had a "zing" attack since 3 days after the dental appointment. Inflammation is a strange thing...it does things to us and appears differently for many people depending on their individual genetics.