those words spoken by DR H at the end of our appointment on wednesday. this in reference to the very aggressive treatment plan he is implementing for parker.
once again, we're down in SF. it's hard to believe we're back again. we arrived monday and will be here until saturday. last time we were here was at the end of november. 3 months have come and gone in a blur. when we checked into our hotel (we stay at the same one each time) the manager greeted us with "hey, the celebrities are back."
yikes. that's right! last time we were here, we had the Nature of Things camera crew in tow. reminds me that i have yet to post about our whole filming experience. sheesh.
it is no surprise that the results of parker's exam were troublesome. the downward spiral he's been on since fall has taken it's toll. going in to this appointment, we knew he was doing poorly - even a quick glance gives that a way. he's puffy, black under the eyes, flushed, has had a return of tremors and twitching, involuntary movements in his upper body and neck area and when he does walk, it is with a pronounced limp. his joints are swollen, his spleen is swollen and he has multiple abnormalities upon neurological exam. it is all indicative that current treatment protocols are failing to keep his infections in check. so, as DR H said, "it is balls to the wall" time. 2 new drugs. 5 IVs per day. and an interesting and a nasty tasting concoction of homeopathic remedies. also, on the docket, a possible trip to connecticut. yes. connecticut.
as soon as parker heard that, he quipped infamous lines from a favorite family movie, madagascar:
"you want to go to connecticut? connecticut?!
what does connecticut have to offer that new york doesn't?"
what connecticut has to offer us is a neurologist that specializes in treating lyme (and PANS - Pediatric Acute-onset Neuropsychiatric Syndrome) with IVIG treatment.
the cost of this treatment is exorbitant. 10 to 15 grand PER month.
so connecticut also offers us bankruptcy. ha ha. not funny.
IVIG is short for Intravenous Immunoglobulin. here's a very brief, over- simplified explanation; the immune system is made up of certain types of antibodies that help keep our immune system strong, healthy and able to fight off bacterial and viral infections. 3 of the really important immunoglobulins are IgA, IgM, and IgG.
IVIG is a treatment that is a blood product that contains the immunoglobulin antibody G (IgG). IVIG is primarily used to treat certain autoimmune diseases and immune deficiencies. in the USA, it is also being used to help treat lyme and PANS/Pediatric Acute-onset Neuropsychiatric Syndrome patients. (Parker is on the PANS spectrum). Simply put, it helps to replenish/build up the IgG deficient part of the immune system which in turn helps the body fight the infection and makes the antibiotics more effective. IVIG also aids in recovery of peripheral neuropathies.
using IVIG in the fight against lyme and PANS is standard care in some parts of the USA, including stanford children's hospital, which is in the process of opening up a IVIG Clinic to treat PANS. unfortunately, canada has yet to catch up. to receive IVIG therapy in canada, one must have a diagnosed autoimmune disease or an immunodeficiency.
here's the rub...parker sits right on the borderline thresh hold for meeting the criteria for an immune deficiency in canada. he has almost no IgA, low IgM and an abnormal CD19+ count however his IgG is right on the cut off between normal and too low...we're talking literally just by hundredths of a point. because it is right on the cusp, he theoretically could still receive IVIG... IF he had a history of chronic infections. yes. that's right. a history of chronic infections. there in lies the absolute absurdity of it all. our medical system does not recognize lyme as a persistent, chronic infection. therefore, the immunologist that we have been seeing will not acknowledge his history.
we have fought hard to advocate for him to receive this treatment in canada. insurance would cover it then. his immunologist has been unmoved. his response to our request that he speak with DR H about parker's case was met with a, "i'm very busy. i don't have time to call him." that was a bitter pill to swallow. he eventually did put in one call to DR H. unfortunately, he just left a message and has not returned any of DR H's subsequent calls. DR H will keep trying. 3 separate lyme specialists have all determined that there is a strong likelihood that parker would have a positive response to IVIG therapy. it is upsetting that the immunologist is so reticent to even hear out these expert's opinions. in the meantime, parker is suffering and we can't indefinitely wait on the hope that things will change here in Canada in a timely matter. hence the possible trip to connecticut.
the last 3 months have just been exceptionally difficult and somewhere round the middle of December, i got sidelined with a significant bout of depression. in part, this is why my blog has suffered. of course, juggling the many hats i must wear - teacher, nurse, caregiver, wife, mom - is a challenge that seems to consume the entirety of every day. just tending to the parker's medical needs is a full time job in and of itself. i have no time to be a patient myself. the high level of stress and turmoil are not exactly conducive to healing either. neither is the barfing and food allergies. yes, my daily bouts of barfing have not stopped. on march 14th, i will have barfed my way thru an entire year. i was not surprised when my exam on monday, revealed that there has been a relapse of my lyme infection. i am only allowing it to be coined "a small one". however it does require a re-treatment of IV meds. (i have been off all IV meds since Aug 2011) for now, the treatment plan is for pulsed IV therapy - just 5 days per month. no big deal.
there is more to update. there has been a whole rash of events that have occurred over the past 3 months. more to come...eventually.
for today, it's balls to the wall time. parker's new treatment regime is off and running. we spent about 4 hours at the IV clinic at DR H's office. it went as well as can be expected...meaning parker feels horrendous but thankfully had no adverse reactions. once we are back home, we will continue this regime for the next 6 weeks under the care of a local lyme literate ND (LLND). it will be grueling for all of us. especially for parker.
thank you to those of you who continue to stand with us in prayer and other tangible ways. over the last little while, many of you have been much more vocal in your support. i cannot adequately express how much it means to us and how much it bolsters our spirit when we hear from friends. please never underestimate or think that a simple message of, "i'm praying" or "thoughts are with you" is inadequate. for they are not.
we are exponentially grateful to each of you.
i will end this post by sharing a little letter that avery wrote the other day.