November 12, 2012


parker continues to be ill. 

thankfully, we *think* the actual decent has been halted. we even *think* he may be on his way up. 

this means his pain and fatigue are no longer getting worse. he still sleeps late into the day and spends most of the day in bed and he is still in a boatload of pain. yet, the high intensity attacks (where he has to crawl to get around) are not happening as frequently nor are they getting worse. 

i type *think* because things here change in the blink of an eye. every time we *think* things are looking up, he has another flare and we find ourselves tumbling back down into another dark hole. 

last weekend is a perfect example.

on saturday he was a bit perkier. he was in bed nearly the entire day but his pain was less intense and more manageable. he begged us to arrange for his cousin (same age) to come for a visit. his current relapse and bed bound state started sept 20. that was the last time he spent any time out of the house or with kids his age. he has been far, far too ill to have even been able to tolerate company. i suppose the fact that he even felt "up" for a visit is an indication that there has been improvement. and that the visit actually happened should be viewed as monumental sign that, on some small scale, he is feeling a bit better.

the company and the copious amount of video gaming provided some much needed distraction. the visit helped with the loneliness factor too.  yet, interspersed between gaming, he'd quietly seek us out or curl up on the couch racked with pain. he'd rest, gather up strength, then will his body upright and put on a brave face. 
for what?  to shoot up the enemy on the screen or shoot the buzzer beater in an imaginary on-screen basketball game. 
to be with a friend. 
to do. 
to be. just for an hour or two.
imagine having to fight with all your might to just be a kid.
the desperation for that can drive the body for brief interludes.

yet, i know there is a point when the body cannot be willed to do - no matter how desperate - not even for the briefest of interludes. that has very much been parker's reality since sept 20. 

that visit occurred last weekend. 
we *thought* this was a sign that he might finally be turning a corner but in short order, everything intensely flared again. evenings tend to be the worst. they bring with them intensifying joint pain, shortness of breath, rages and faint-like episodes.

and so it goes. 

the last 72 hours have been better. 

we've managed to do a bit of school work. a very, very tiny bit. (i'm home schooling him again this year) since mid-october, school has been a futile endeavour. this has been incredibly disheartening. prior to this relapse, he had been plowing through an incredible amount of work each day. it took an enormous amount of energy and perseverance on his part but his ability to *think*, process and recall material day to day had improved by leaps and bounds since we wrapped up school late last spring. to "lose" all of that again has been very discouraging. 

he got out of the house twice this weekend. short trips. but he got out. aside from doctor's appointments, he'd only been out of the house once since sept 20. 

he's back to harassing and teasing his sister.
we *think* that is a good sign.

yet, even as i write this, i know that things could spiral downward again.
it's 12:30pm and he's still not awake.
i don't know what today will hold. i suppose none of us really do.
but i hope today will be better and tomorrow and the next and so on and so on.

i *think* he may truly be crawling his way out of this massive relapse because we are finally treating him for the cause.
and the cause?
multiple viral infections.

the diagnosis based on a multitude of lab tests
a thorough exam by DR D (seattle doc).
(we took him down to seattle to see her about 10 days ago.)

long drive to seattle

DR D prescribed anti-virals
he's been on those meds now just over a week.

we *think* that this is helping.
we hope.
always we hope.

unfortunately, his eyes (the nystagmus) has gotten worse.

the viral issues are just part of the puzzle. we *think* they are responsible for this landslide relapse. but as far as we know the nystagmus is a separate issue. several doctors have been consulted and they do not believe that viral issues cause nystagmus. google says differently. but google agrees that viral issues are 1 of 3 causes. none of the other causes are things one wants to *think* about. 

i *think* it'll be okay.
our doctors *think* an MRI is absolutely necessary but they *think* it'll be okay.
MRI has been scheduled for dec 11.

but it's getting worse.

he was seen by an optometrist on friday. 
the optometrist *thinks* there is definitely something wrong.
he referred us to a neuro-opthamologist.
that appointment is scheduled for dec 27.

here's what i *think*
i *think* that the wait for those appointments feels like an eternity. we're on cancellation lists and hope that we won't have to wait until then.

i, also, know that i *thought* he needed to have an MRI before the nystagmus occurred.

then, a few weeks later, the nystagmus presented
this sudden landslide relapse began

it's earned us an urgent referral for an MRI.
yes, dec 11 is considered an "urgent" date

i am thankful for that.

i'm sure you are *thinking*, "hold up, what? you mean you are saying you *thought* he needed an MRI prior to the relapse and nystagmus?"
why did i *think* that? 

just before the nystagmus started, our GP noted that parker had lymphocytosis (elevated b cells)
he didn't *think* this was particularly concerning
it is reasonable to assess that the counts are out because of lyme (and viral issues)
we saw an immunologist 
who *thought* this warranted further investigation
he ordered specialized labs
those came back abnormal

i spoke with the immunologist this past week
he does not know what they mean 
has had to consult a pediatric immunologist

waiting to hear back on that
he thought that an MRI was definitely needed

i *think* it will all be ok
quite frankly, i don't know what to *think* anymore

i don't know why i had that gut instinct about him needing an MRI in the first place. i don't know if that feeling was based on fear or an actual intuitive sense that something, in addition to lyme, is going on.

i *think* i can't *over think* this
i *think* it'll be ok
i *think* i have to *think* that to get thru today

1 comment:

Kathy said...

I *think* you deserve a break and that it's time for all of this craziness to be over with. I am so sorry Parker's been having such a rough time. I only had Nystagmus once...I believe from too rapid die off...and it was very scary. One of the things suggested to me during that time was B12 & Thiamine Deficiency (can happen with parasites). Just a thought.... LOVE YOU!