Thanks Yvonne for the in-depth details of HBOT.
I will keep your letter for future reference.
Anahita

----- Original Message -----
From: Yvonne Craig <[log in to unmask]>
Date: Wednesday, January 19, 2000 2:23 am
Subject: Re: hyperbaric oxygen therapy -long

> 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
> Stimulationprogrammes at 5 months of age. Speech therapy was added
> at around his
> first birthday. He made slow but steady progress. Since HBO his
> abilitiesand 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
> spasticquad 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
> unassistedbut 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
> cliniclocally 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
> researchdone 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
> Anthonybecause 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
> thatHBO 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
>