This is information I received from Krista Scurria!
Therapy:
I
limit
the
therapists
to
30
minutes
because
we
don't
want
to
over
fatigue.
Having
only
10%
of
the
normal
muscle
mass-we
don't
want
to
over
fatigue
because
they
don't
recover
as
easily.
Don't
do
therapies
back
to
back
and
give
at
least
24
hours
between
sessions.
Range of Motion (Stretching): This is important especially hips/knees/ankles/and spine-trunk lateral flexion is important-we need to stretch all of those facet joints for lungs and chest.
Joshua: He sits independently and he never crawled or walked. He rolls from back to belly but not all the way over so we do a lot of rolling exercises (assisting him in rolling all the way over) we also stretch, stand (in a Kaye vertical stander). We have urias splints that we use on his legs and elbows for weight bearing. We just ordered a TES unit for night use. Also we know Dr. Bach's protocol (respiratory stuff) very important. I don't know what your insurance situation is-private or Medicaid but wither way, with a script you should be able to get equipment you need. Also we are on a strict nondairy diet and supplement Joshua's diet with Amino Acids per Dr. Kelly and Johns Hopkins and several parents that have had great results with this. It's very detailed and if you're interested I'd love to share. Joshua drinks enriched rice milk. We also have a power wheelchair for Joshua. It's great to give them their independence. After all, if they were "Normal", they'd be walking. We've been doing this for over a year now.
Unfortunately: Most Drs. are not supportive of the diet because there's no "documented" research, however, clinically, the kiddos on the diet are doing much better than the ones who aren't. My doc is very supportive because she's seen how much it's done for Joshua.
Dr. Bach: He is awesome. His whole protocol is respiratory. By the way-no cpt by any means unless there are secretions-you could do more harm than good. We do use it when we have colds in conjunction with antibiotic-usually augmentin to prevent a microplasmic pneumonia, nebulizer rx with albuterol and mucomist, cpt, inexsufflator (one of Dr. Bach's things-awesome-we do this everyday as our deep breathing game) and bipap which we need to be sleeping on before winter. We also have a pulse ox meter to make sure his Stats don't drop and stay below 94% during an illness.
