sparky has finally started his first cycle of IVIG treatment!
it's been a long journey to get here! in so many ways, IVIG has been an elusive elixir...first, just to secure this treatment was a year long battle - as i blogged about in the post called an unfolding miracle . then when we finally got it and had it in hand, his veins began collapsing making it impossible to administer!
we began to feel as if this was the elusive elixir that would never come to pass.
now, here we are. finally. miracle of miracles.
DR H feels he's stable enough to begin the IVIG... this first cycle was originally scheduled to begin roughly 5 weeks ago...
but, suddenly and unexpectedly, 2 weeks before his first cycle of IVIG was scheduled to begin, his veins started to collapse. we were unable to administer his full doses of IV abx. as a result, he began to de-stabilize and decline. there is a greater chance of a successful outcome with IVIG treatment in lyme patients, particularly children, when it is used as a combined therapy with IV abx. DR H had some concerns about moving forward as scheduled but after some discussion, we decided to move forward with a trial dose. we would use just a half dose and do one infusion and gauge his response to it.
unfortunately, by the end of the 4 hour infusion, his pain and symptoms began to intensify. by that evening, his pain was so bad, he spent most of the evening balled up on the couch screaming and moaning. for the next 3 days, his joint pain was so severe he had to crawl on his hands and knees to get around the house.
it was having the exact opposite effect of what we were hoping for.
we were incredibly discouraged.
however, DR H was certain that the flare of pain had more to do with the lack of consistent IV abx dosing than an adverse reaction to the IVIG. he reassured us by telling us that in his experience, and in that of many of his colleagues, lyme kids tend to 'tank' without combination therapy.
it was clear that something needed to be done about the vein issues that were impeding sparky's ability to get his IV abx. THUS the decision was made to move forward with the vascular procedures in the USA. this has given us a way to consistently access his veins and as a result, he's been back on full time IV ABX for 2 weeks now. he has gone thru several intense herxes (die-offs of the bacteria) - as a result he has had many days and nights where his pain levels have been unbearable but he has had some better moments here and there. this is a very a good sign. which now brings us up to this present week.
finally starting IVIG, the elusive elixir!
DR H has changed things up a bit from the original treatment plan because sparky flared with that trial dose of IVIG. he wants to proceed cautiously and slowly. therefore, the infusions will now take place over a 3 day period rather than 2 days. the length of the infusions will remain the same (4-6 hours each day). so this will make for long days.
his first infusion was wednesday. we spent a grand total of 6 hours in the doc's clinic...but everything went smoothly.
we arrived at the clinic at 9:15AM and got things rolling immediately.
first, the doc sugar bear crispified him...
in medical terms, this means he was pre-medicated with IV benadryl as there is a risk of allergic reactions with this type of medication
then, the infusions began.
1 drip every 10 seconds for the first 2 hours
the rate was moved to 1 drip every 5 seconds during the third hour.
his heart rate elevated with the increased rate. this is a common side effect but it meant that the infusion rate had to be slowed down to 1 drip every 7 seconds.
it was a long day.
i was very, very grateful when a friend dropped by with a coffee.
let me pause here...and jump up on my awareness platform and preach from the pulpit for a moment.
the friend that brought me coffee was there because her husband recently contracted lyme. a locally acquired case - either in 100 mile house, BC or langley, BC area. maybe even from his backyard. no one will ever know for sure because they never saw the tick (this is not unusual as they are so tiny that most people never see them).
|my friend's EM/bull's eye rash|
what is unusual is that he got the EM/bull's eye rash and knew what that meant. in short order, he was able to get on abx. today, they were in the clinic we are at because the doctor here is lyme literate. they are in good hands with this lyme doc and have been prescribed adequate and aggressive treatment. i am thankful that my friend's husband is doing well.
please, be aware, my friends, lyme is everywhere.
okay, stepping down now.
back to my sugar bear boy.
he slept a good portion of the first day which was good for him. boring for me. but i'm managing to get caught up on a bit of blogging which i enjoy and there is a steady stream of lyme patients coming thru the doors to see the doc here. i'm getting the chance to finally meet in person some of my sweet online lyme friends.
today, we were back at the clinic by 9:15AM again to start the entire process over. tomorrow (Friday) will be a repeat.
so, it has begun. the elusive elixir is finally flowing into my boy's blood stream. it is carried on a tidal wave of fervent prayers and hopes.
what is the hope?
the hope is that this will turn things around for him. that it will relieve his suffering. that it will put him in remission.
DR H has said we will not see benefit for 4-6 weeks and it could take two full cycles of IVIG before we see any improvements. the next cycle will begin in 4 weeks and is scheduled for July 31, Aug 1 & 2. visitors are welcome - (the clinic we are in is close to our home) please feel free to email me firstname.lastname@example.org for the address for the clinic. i expect that it will be the same dosing schedule as this time around but will know for sure after i speak with DR H. (we have an appointment with him on july 16th). the 3rd cycle will be repeated 4 weeks after that.
for now, the challenge is to push through this grueling schedule and keep believing. keep hoping. keep trusting...all the while not really knowing if this will work. it is an expensive gamble - each cycle of medication costs $3,000 - but we will keep moving forward in faith. we are so thankful for God's provision for this first cycle and are trusting He will provide for next months.