so my cousin's son (6) who I posted about
last week wondering if his pneumonia and restricted arm movement could be lyme, well here's an update:
quickly his pneumonia turned into a different situation altogether.
He's in the hospital now (a children's hospital, in the ICU, 4 days) intubated, feeding tubes and experiencing paralysis in three out of limbs, and cannot breath deeply.
It happened quickly, within about
three days, losing movement and getting worse.
long story short is the dr.s have run many, many tests (still testing some)
they have ruled out many things, but technically not lyme (b/c the test isn't back yet)
but they are thinking it's viral. Viral encephalomyelitis, which is swelling on his spinal cord and brain- causing the paralysis.
My cousin said they are thinking virus instead of bacterial b/c of the way his CBC looked. I guess it looked good (if I understood her correctly).
(The thing is, my son's bloodwork looked "remarkable", very good, according to his llmd, when he was diagnosed with lyme last winter. oh, btw, he's doing so good! thank the Lord! basically symptom free!
Anyway, here are some facts:
*the dr.s are confused with how the paralysis moved (not from the feet and legs up, but started in his arm) I've heard from a lady who's lyme symptoms started that way.
*also, the dr.s are confused with that the paralysis isn't "symmetrical" (also same as that lady)
*his blood work is showing normal results, like it did with my son's and others.
*we live in a lyme endemic area.
he had neck pain, but no meningitis
bottom line is I understand it may really be a virus. I acknowledge that. But, honestly, I suspect lyme. (again, even the dr.s haven't officially ruled it out 100%)
They've been doing IVIG for four days (no real improvements)
yesterday they decided to start 5 days of steroids (I read that can help viral encephala.)
but as we know, steroids + lyme = no help , not good.
today, my cousin's husband posted that the steroids as of day two now, do not seem to be showing improvements. They are now going to start some plasma treatment thing, I can't remember the name of.
I'm worried that, b/c they are not lyme literate they may be dismissing lyme too soon, and altogether, once the test comes back if negative.
I keep giving my cousin a little lyme info here and there, and I know she's receptive, but her husband posted in response to someone else mentioning a bacterial infection that the dr.s think it's viral, so thanks anyway. In other words, I fear they are trusting that their non lyme literate dr. knows everything he should.
guess, I don't have a question. I gave her the name of my son's lyme dr. If he doesn't improve perhaps they'll call her. Not sure.
I don't blame them for listening to their dr., and perhaps it really isn't lyme, but so many things have been ruled out. and the typical treatment (steroids) for the viral idea isn't working, in fact took a slight set back in movement.
I just hope they don't miss the boat.
any thoughts or ideas, I'd love them!!! praying so hard for this dear boy!
Post Edited (stacestar) : 8/27/2014 1:24:23 PM (GMT-6)