January 22, 2010


so we had a visit from the big top dog infectious disease doctor this afternoon. i knew the minute dr big cheese walked in that things would go as we expected and not how we had hoped.

most reading this will know the drill so i'm not going to waste my time and energy on going into detail about what he all had to say (or not say) about lyme. the basic gist of it is that dr big cheese gave us the same song and dance about lyme that we've heard a million times before. he doesn't know what parker has but he asserted that parker can't possibly have lyme because his canadian elisa test for it was negative and the elisa is an extremely sensitive assay.
if i could have a nickel, no scratch that. i had a penny for every time i've heard that crap dispensed i'd probably be able to cover my out of country medical expenses.
so while we are not surprised
encountering this bigoted attitude toward lyme is like being sucker-punched in the gut.

as the door shut behind him marking his exit, i picked up parker's stuffed prayer bear and threw it at the door.
"don't let prayer bear bite you in the butt on your way out. harumph!" i snarkily muttered - i launched prayer bear head long into the door, part out of disgust and frustration and part for comic relief.

it worked both graham and parker burst out laughing



and the issue of mycoplasm?
dr big cheese said that parker's mycoplasma infection is old. this caught us totally off guard b/c docs yesterday told us it was an acute infection. big cheese said no. he said that he believes that the mycoplasma infection was probably responsible for parker's initial illness (the double lung infection that precipitated the start of all his symptoms way back in september)

even though parker was NEVER treated with the antibiotics specifically used to treat mycoplasma infection, dr big cheese will not treat him for it now. first, because it is no longer an acute infection and secondly because of the type of bacteria it is (cell wall deficient), he said that most antibiotics aren't that effective against it anyway (i'm still scratching my head on that one. after all, they've been drugging parker with meds that aren't that effective but that hasn't stopped them from prescribing them).

anyway, dr big cheese doesn't think the mycoplasma is causing his symptoms. although, he did suggest that it could be possible that the initial infection could have triggered some sort of autoimmune response. he said he would look through the medical literature to "see" if he could find anything about that. we're not holding our breath. neither graham or i believe that he will look.

so we're mad, frustrated, sad
not surprised.
thankfully, prayer bear has recovered from his launch through outerspace.

i'll go home tonight and have a good cry
and then i'll let it go
rise above
hope that maybe our story touched or tweaked the interest of even just one of the 15 to 20 doctors we saw today (yes, that many! 5 different specialities each with their accompanying fellow, resident and attending) plus a couple doctors that are here from china. serious. and not one could offer an explanation or diagnosis of his condition.

so while my gut is aching from that proverbial sucker punch, i'm trying to focus on what our motivation was when we brought parker into the ER on wednesday. our primary focus was and has been to get him some sort of relief for his pain.
for that, there has been a positive outcome. praise the Lord!

he was seen by 2 pain management doctors right before dr big cheese. the pain management doctors were great. one of them was a "DR O". he was super-compassionate and put together a good therapy plan. it consists of 4 components

1) meds
2) physiotherapy
3) psychology
4) complementary medicine - such as supplements and acupuncture

we feel really good about this. and double impressed that DR O not only asked about complementary medicine and what supplements we have parker on but actually suggested we consider and supported the use of acupuncture, naturopathic medicine and chiropractic care. could have knocked me over with a feather when we talked about that stuff- mainstream doctors generally 'poo-poo' alternative medicine. thumbs up for DR O! (incidentally, parker's teacher had given us DR O's name a couple of weeks ago, as she had heard through the grapevine that he is fantastic...we concur!)

parker needs the physiotherapy as he already has some mild atrophy in his calf muscles. when we explained this part of the treatment plan to parker, he wanted to know what a physiotherapist was and what they did. i explained that they were kind of like personal fitness trainers.

"so isn't that cool, buddy? you are going to kind of have your own fitness trainer to pump you up."
"oh," he said, " i'd rather we just got a Wii fitness console instead."
funny guy.

he's been extraordinarily amazing and brave through this all...the hospitalization, the endless questions from doctors, testing, pills, the installation of his "mini picc line" -

all endured while he lives with this never ending pain. that he can maintain his humor and upbeat attitude is pretty astounding. that's not to say that he doesn't have periods of intense sadness and frustration about being sick. over christmas, he told us that even in his dreams he is no longer healthy. and naturally, he wants to know why this is happening to him, when it will end and if he'll be better in time for basketball season in spring. we're glad that he can verbalize these feelings but they are really hard for us to hear and tougher yet because we have no answers to give him. we are certainly grateful that part of his pain management treatment will include a psychologist specifically trained in chronic pain issues.

so that's about it for today.
i think we've been seen by all the specialists. now were just waiting for them to co-ordinate his pain management treatment plan.
pretty much, just a waiting game at this point.

we've been told that they will probably be keeping parker over the weekend. yuck.but maybe we not. who knows. we're exhausted. he's homesick. we all want to go home.
all in all there was some good and some bad today.

we'll take the good
choose to leave the bad behind.

but should i ever run into dr big cheese again - he had better hope prayer bear is not with me.


Kristie said...

crying crying crying with you and your frustration

Lyme Aware BC said...

Keep that throwing arm limbered up!

ps. I did not like it that the security word I had to type to send this was "Worsi". Somehow that is not fair.