Hi, Anahita (what a beautiful name!)
You asked about HBO and oral functioning. I thought I would share our
overall experiences in case others are interested.
We have been very pleased with this treatment for Anthony. He is almost 3
years old. He is one of 2 surviving triplets born at 30 weeks gestation. At a
month of age a routine head ultrasound revealed a grade IV bleed (IVH)
resulting in extensive PVL. He has damage in all lobes of his brain. The
docs were not very optimistic about prognosis at that time and we were told
it was likely Anthony would be very severely handicapped: blind, deaf,
non-verbal, severe spastic quadripelegic CP, and global developmental
delays. Even before HBO we knew the prognosis would be better than
that. His hearing and vision are fine and cognitively he seems to be not
too far behind his NDA brother. We started PT, OT and Infant Stimulation
programmes at 5 months of age. Speech therapy was added at around his
first birthday. He made slow but steady progress. Since HBO his abilities
and the rate of his progress in the traditional therapies has increased
dramatically.
HBO has been great for Anthony. He has had 66 treatments in all since
Nov. /98. His progress since starting the treatments has been astounding -
his therapists are amazed. They didn't expect him to ever do what he is
doing now . He shows no sign of slowing down yet. His diagnosis is spastic
quad CP and in Fall '98 they wanted to have him seen in the seating clinic
for his first chair. Now his PT is working on him using a regular walker. He
uses a Pony gait trainer at pre-school and gets himself wherever he needs
to go. He will need a chair eventually (he expends a lot of energy getting
around and this will be a problem in school) but just to know he will likely
have some independant mobility is a miracle for us.
Before HBO Anthony couldn't sit for more than a few seconds and never
held his bottle independently. His favourite thing is still to stand (with our
support or in his Pony walker) and to "walk" as we support his arms. He
has always made lots of sounds but only a few "words" like "Wow".
Since HBO we have noticed some very significant changes, physical and
mental : many more sounds/words ("Mom-mee" or "Mum" and "Da-dee",
Nana (our caregiver, Fran), "Bob-bee" (his brother, Bobby), bubba (bottle),
hair, bear, "pane" (plane), "bower" (flower), again, "nan" (van), more, hi,
"nigh-nigh" (night-night), hel-lo, belly, orange, chair, etc... in all about a 60
word vocabulary - some words clearer than others; he is starting to sing; no
choking or gagging on food (wasn't a huge problem but is now eating all
age-appropriate foods) ; decreased spasticity in all limbs ; better trunk and
head control ; increased alertness and attention span. Most dramatic
results have been with his right arm/hand - by far his most affected limb.
His hand used to be fisted most of the time and he would draw it up to his
chest the minute he would try to concentrate on doing something. Now it is
open most of the time and he uses it purposefully when you remind him to
do so. He still favours his left of course but he had almost no use of the
right hand before the HBO. He held his own bottle for the first time after 4
treatments. This is still not always possible as he still gets tight when he's
trying too hard but he keeps trying. And he is able to feed himself with a
fork (if you can spear the food) and a spoon (if the food is sticky). Soup
may always be a challenge, lol. He now sits for up to 20 minutes unassisted
but his balance is still not great and he sometimes startles and then falls
over. He is starting to put his arm down to catch himself. He is starting to
support his weight with his arms. He pulled to standing using a bar last
week in physio!!! Also a lot of little changes: his constipation decreased ;
he sleeps more soundly; he seems physically more comfortable and
relaxed; seems more cognitively aware (though has always been bright).
After a couple of months we noticed a return of some of his spasticity
especially in his arms. He could still do things he had learned but had to
struggle a bit more. We also noticed his speech was not as clear or as
spontaneous and he started having a bit more trouble manipulating food in
his mouth and so would gag occasionally. We're not sure if this return of
spasticity is due to the effects of the treatments wearing off or if it is just
increased spasticity that can come with growth spurts. We have a clinic
locally so we take him for a few treatments every few months. We
immediately see improvement with these "maintenance" treatments - back
to where he was after the last set.
We noted no real side effects from the therapy. In fact, he seems to be
very relaxed and comfortable through most of the sessions. We plan to
keep taking him periodically until we see no further progress.
Of course this is only our experience. There needs to be formal research
done to prove the effectiveness to treat children with CP. As far as I
know the research currently going on is focussed on gross motor
functioning and not specifically looking at oral functioning but we definitely
notice changes. This also indicates the effectiveness of HBO for Anthony
because a case could be made that his progress in gross motor stuff could
be PT related or he would have done it anyway. It is hard to argue that
HBO doesn't have an effect when his speech changes and his gagging
disappears after only one or two sessions.
More than you wanted to know... :)
Yvonne
|