a few fridays ago, we made a quick day trip to seattle for sparky to be seen by his LLMD, DR D. (his primary care doctor continues to be DR H in CA - but these two brilliant doctors have often partnered together to provide and co-ordinate medical care for sparky) we are so grateful for the wisdom and expertise of both these doctors.
sparky is starting another new round of antibiotic treatment - this will target Lyme, Babesia, Bartonella and Strep - which are all infections he is continuing to test positive for. additionally, his WBC (white blood cell) and lymphocyte counts continue to be highly elevated, so he will be starting a new treatment called LDI Immunotherapy. this therapy has been used to treat autoimmune illnesses and allergies for quite some time but only recently has been used to treat Lyme)
(i will write a more detailed post about this therapy once i've had some time for my brain to digest and process all the details and information we learned about it from his doctors)
for now, just trying to give a bit of an update on where things stand with sparky.
life has been a complete roller coaster since he relapsed in mid-january...his symptoms and health are very unpredictable and he has many daily ups and downs. the primary symptoms and issues he continues to struggle with are intense, unremitting joint pain (meaning his pain levels fluctuate but he is never not in pain), cognition issues - mainly brain fog, maintaining focus, and difficulty retaining information, insomnia (non-responsive to sleep pills), fatigue, and nausea.
oh and he's been sneezing and wheezing and itching for the past 2 weeks as the poor kid's hayfever has ramped up... and he can't be on anti-histamines as these are contra-indicated with the LDI immunotherapy he will be starting in the next week or so.
he has had some minor improvements and mild reduction in his pain levels since re-starting aggressive abx treatment at the beginning of march. the really GOOD NEWS is that he is no longer deteriorating!
we are very, very thankful for this. before getting back on antibiotics, his symptoms were spinning wildly out of control and he was spiraling into some fairly severe levels of disability again. as i wrote about in my blog post, reality of relapse, watching this decent and coping with the accompanying losses was gutting and terribly frightening. once again, we had to watch our son miss out on the many things that most kids his age take for granted - from life experiences like shooting hoops, being in a classroom or just hanging out with friends to more complex tasks like reading or writing and functioning independently.
one major fun life experience that it looked like he would miss out on was a spring break youth trip to several theme parks in sunny cali. he had been planning to go on and greatly anticipating this trip for nearly a year. just before he fell ill in january, he had even convinced a new friend from school to come with him - he was so excited when his buddy registered for the trip.
and then he got sick.
as january bled into late february, and the date for this end of march event loomed on the horizon, he told us that there was no way possible he felt well enough to go.
he was devastated.
with the trip only a mere 4 weeks away, DR H started him on aggressive treatment.
there was much discussion with DR H about whether this trip, however remote the possibility of going on now appeared to be, should even be a consideration at all. even on the off chance that treatment helped alleviate his most debilitating symptoms, and he felt "well enough" to go on the trip, was it even a a wise choice to still be holding out hope for - especially given how ill he had been the last few months and how fragile his immune system is.
DR H simply said there was no way to know...but he felt that it would be incredibly detrimental to sparky's mental and emotional health for him to miss the trip . so what he could do was set him up on a treatment plan that would give him the best possible chance of physically building up his system enough to get him functional enough to go.
that, my friends, was a tall order stacked against very big odds.
for the next 4 weeks, we literally bathed the boy in prayer, antibiotics, and IV immune boosters.
this powerful combination worked and i am so delighted to say that our boy was able to go!
it was a huge answer to prayer and no small feat - but since dad was the one running the event and was also going on the trip, he was able to go. he was heavily medicated and in tremendous pain the entire time but he went and really had a blast.
it was a tremendous spirit lifter.
since his return from the spring break trip, he has been able to attend school about 2 - 3 times per week. some weeks he has managed full days and others have been half days.
his pain, lack of sleep and cognitive challenges make school and academics very challenging and both physically and mentally draining. however, these small steps are indication that he is responding to treatment as he had not been well enough to attend school at all since mid-january.
with the advent of starting this new LDI treatment (beginning the week of april 20), things could get rougher for him over the next couple weeks, (this treatment can cause temporary but intense flares of symptoms). we would appreciate your continued prayers. also, if you know sparky and could drop him a line of encouragement, that would be spectacular - he needs that!
sparky is starting another new round of antibiotic treatment - this will target Lyme, Babesia, Bartonella and Strep - which are all infections he is continuing to test positive for. additionally, his WBC (white blood cell) and lymphocyte counts continue to be highly elevated, so he will be starting a new treatment called LDI Immunotherapy. this therapy has been used to treat autoimmune illnesses and allergies for quite some time but only recently has been used to treat Lyme)
(i will write a more detailed post about this therapy once i've had some time for my brain to digest and process all the details and information we learned about it from his doctors)
for now, just trying to give a bit of an update on where things stand with sparky.
life has been a complete roller coaster since he relapsed in mid-january...his symptoms and health are very unpredictable and he has many daily ups and downs. the primary symptoms and issues he continues to struggle with are intense, unremitting joint pain (meaning his pain levels fluctuate but he is never not in pain), cognition issues - mainly brain fog, maintaining focus, and difficulty retaining information, insomnia (non-responsive to sleep pills), fatigue, and nausea.
oh and he's been sneezing and wheezing and itching for the past 2 weeks as the poor kid's hayfever has ramped up... and he can't be on anti-histamines as these are contra-indicated with the LDI immunotherapy he will be starting in the next week or so.
he has had some minor improvements and mild reduction in his pain levels since re-starting aggressive abx treatment at the beginning of march. the really GOOD NEWS is that he is no longer deteriorating!
we are very, very thankful for this. before getting back on antibiotics, his symptoms were spinning wildly out of control and he was spiraling into some fairly severe levels of disability again. as i wrote about in my blog post, reality of relapse, watching this decent and coping with the accompanying losses was gutting and terribly frightening. once again, we had to watch our son miss out on the many things that most kids his age take for granted - from life experiences like shooting hoops, being in a classroom or just hanging out with friends to more complex tasks like reading or writing and functioning independently.
one major fun life experience that it looked like he would miss out on was a spring break youth trip to several theme parks in sunny cali. he had been planning to go on and greatly anticipating this trip for nearly a year. just before he fell ill in january, he had even convinced a new friend from school to come with him - he was so excited when his buddy registered for the trip.
and then he got sick.
as january bled into late february, and the date for this end of march event loomed on the horizon, he told us that there was no way possible he felt well enough to go.
he was devastated.
with the trip only a mere 4 weeks away, DR H started him on aggressive treatment.
there was much discussion with DR H about whether this trip, however remote the possibility of going on now appeared to be, should even be a consideration at all. even on the off chance that treatment helped alleviate his most debilitating symptoms, and he felt "well enough" to go on the trip, was it even a a wise choice to still be holding out hope for - especially given how ill he had been the last few months and how fragile his immune system is.
DR H simply said there was no way to know...but he felt that it would be incredibly detrimental to sparky's mental and emotional health for him to miss the trip . so what he could do was set him up on a treatment plan that would give him the best possible chance of physically building up his system enough to get him functional enough to go.
that, my friends, was a tall order stacked against very big odds.
for the next 4 weeks, we literally bathed the boy in prayer, antibiotics, and IV immune boosters.
this powerful combination worked and i am so delighted to say that our boy was able to go!
it was a huge answer to prayer and no small feat - but since dad was the one running the event and was also going on the trip, he was able to go. he was heavily medicated and in tremendous pain the entire time but he went and really had a blast.
 |
| that's our boy on the log ride at knott's berry farm |
it was a tremendous spirit lifter.
since his return from the spring break trip, he has been able to attend school about 2 - 3 times per week. some weeks he has managed full days and others have been half days.
his pain, lack of sleep and cognitive challenges make school and academics very challenging and both physically and mentally draining. however, these small steps are indication that he is responding to treatment as he had not been well enough to attend school at all since mid-january.
with the advent of starting this new LDI treatment (beginning the week of april 20), things could get rougher for him over the next couple weeks, (this treatment can cause temporary but intense flares of symptoms). we would appreciate your continued prayers. also, if you know sparky and could drop him a line of encouragement, that would be spectacular - he needs that!
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