It's all so complicated! As though you have nothing better to do than
travel to and wait for a doctor, a doctor, a doctor.
The only way it will get better is for the patients to continue to educate
their doctors. We now have a PT with no cp background as their are no other
clients with this in the area. But when his knee started going out and
beofre I found the knee pads the parents took him to 2 orthopods who both
said it was contractures and he needed surgery and were ready to schedule
it. He had lost lots of function so it would have been easy to believe, "He
has contractures and he needs surgery." So I asked the PT and she said,
"He does not have contractures and stretching is working, he needs more of
it." I tell his mom and she says there are different levels of
contractures. It's difficult to figure out the best course based on what
they are all saying and so trusting yourself after getting all the opinions
is about all you can do. I asked mom if Casey was in the room while the
doctor was telling her he needed surgery and she said yes. So the doctor
is talking with mom about operating on Casey's legs in front of him. Later
that week on our bike ride he says you know it's kinda hard for a 7 year
old to face surgery. He's scared and that is a reasonable response.
Case has reflux and sometimes throws up and is usually fine afterwards.
I've been reading more about botox and that it can be a side effect but he
had it before botox. Anyone know if reflux is related to CP? It's worse
when he is under stress.
At 07:29 PM 11/23/2005, you wrote:
>since linda brought up being in charge of our medical
>decisions,i am going to name some problems in the
>medical community.
>
>my biggest problem with getting medical care over the
>years is that doctors are with few exceptions too lazy
>or too busy to do their jobs. we go in with something
>that we know is a problem that is not anything to do
>with our cp. we generally do know our bodies and know
>if we have a problem that is different. the doctors
>who want to find one thing wrong and not be bothered
>with going any further has no trouble finding one
>thing wrong (our cp) and does not want to think about
>what might be wrong further. i guess an examplemight
>be in order. i had halux rigitous (stiff toe). not an
>uncommon problem, dianosed with an x-ray of the foot.
>i go in an tell the doc, my foot is really hurting and
>it is different. well "its just the way you walk." i
>have to go to 3 doctors before i get the one who will
>think beyond the cp and do the x-ray. a little out
>patient surgery and it is fixed. why should it have
>taken visiting 3 doctors to get this handled? lazy
>doctors.
>
>another problem is some doctor that has just a few cp
>patients and thinks he can compare for consistancies
>between the patients. cp can have so many combination
>of symptons and severities depending on what part of
>the brain was damaged, that to try to treat one cp'er
>based on what has been seen in another cp'er is crazy.
>but you have those "treated one, treated them all"
>doctors out there.
>
>maybe it will have gotten better by the time chase
>gets older linda.
>
>--- Linda Walker <[log in to unmask]> wrote:
>
> > That is such an interesting symptom. I wonder what
> > causes this physical
> > reaction to toenail clipping. I feel nothing when I
> > clip mine. I've heard
> > of the clothing tags bothering the neck but not
> > this. Sounds miserable. The
> > only time I had water retention was when I was
> > pregnant and I slept with my
> > feet elevated and was put on a low salt diet and it
> > helped. Very bland and
> > tasteless food though.
> > Recently I got Case volley ball kneepads. He had
> > lost the ability to weight
> > change, always hard for him but even more so
> > recently because of knee
> > injuries due to falling. He loves to run and falls
> > on his knees a lot. The
> > pads work great and he loves them and now wants
> > wrist pads but I have not
> > found any good ones. Any suggestions are welcome. I
> > want him protected but
> > with the most freedom.
> > Anyhow, as a baby one of the first things we noticed
> > was that his toes were
> > tightly cramped in a tensed position and turned
> > under also. The braces
> > stopped the underturn and now his toes are flaccid
> > but in the correct
> > anatomical position. So now part of physical therapy
> > consists of exercises
> > to teach him to use those toe muscles again. He
> > tries to pull a towel
> > forward with his toes.
> > From my observation of my grandsons cerebral palsy
> > progression and of the
> > many interventions offered and practiced I think
> > that the most important
> > thing for a good outcome is early intervention with
> > physical and
> > occupational therapy, before age one. He was not
> > diagnosed until 16 months
> > when I told his mother she needed to use the cp word
> > with the doctor and
> > see what he said as I was pretty certain he had
> > this. Now, I take 7 year
> > old Case to lomi lomi massage and any alternative
> > therapies that the
> > people suffering this brain injury think help ought
> > to be incorporated into
> > their daily lives. We are still searching for the
> > right interventions.
> > Because CP has a broad range of symptoms, it is
> > important that the cp
> > adults make their own health care decisions. I am
> > teaching Case that he
> > will have to make his decisions someday so he needs
> > to notice what works
> > and what doesn't.
> > Has anyone ever used those shoes with the springs on
> > the back of them? His
> > PT uses those shoes and they look like they would
> > help a toe walker.
> > Any how I am rambling and hope everyone has a very
> > Happy Thanksgiving.
> >
> > All the best,
> >
> > Linda
> >
> >
> >
> > At 08:36 AM 11/23/2005, you wrote:
> > >my feet spasm and cramp when i do my toenails.
> > hurts
> > >like the dickens.
> > >
> > >--- Magenta Raine <[log in to unmask]> wrote:
> > >
> > > > or get a long nail file or emory board and file
> > them
> > > > down! sandpaper on a
> > > > long stick might work too! ;->
> > > >
> > > >
> > > >
> > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
> > > > [log in to unmask]
> > > >
> > > > "What is real but compassion, as we move from
> > birth
> > > > to death?"
> > > > ~~Greg Brown~~
> > > >
> > > >
> > > > > [Original Message]
> > > > > From: Deri James <[log in to unmask]>
> > > > > To: <[log in to unmask]>
> > > > > Date: 11/22/2005 6:41:16 PM
> > > > > Subject: Re: My water-retention problem
> > > > >
> > > > > On Tuesday 22 Nov 2005 05:47, Rayna wrote:
> > > > >
> > > > > [snip]
> > > > >
> > > > > > It seems that I have weird little toes, they
> > > > both turn under my feet -
> > > > > > always have, and I thought that was normal,
> > > > apparently not - and in the
> > > > > > last few weeks that has meant that I've
> > > > essentially been walking on my
> > > > > > toenails. That explains the excruciating
> > pain
> > > > when I walk. May have to
> > > > > > go to a podiatrist - the thought makes me
> > > > physically ill. I cannot bear
> > > > > > people fiddling with my feet - or even
> > touching
> > > > them. I've spoken to a
> > > > > > few others with CP in the last couple of
> > years
> > > > who also have this
> > > > > > difficulty. Does anyone else have problems
> > with
> > > > this, or have any ideas
> > > > > > as to the cause - physical or psychological?
> > > > > >
> > > > > > Rayna
> > > > > >
> > > > >
> > > > > I hate cutting my toenails. There are two
> > > > strategies (equally awful):-
> > > > >
> > > > > Either cut them regularly, but the scars from
> > > > cutting bits of toe haven't
> > > > got
> > > > > time to heal, or
> > > > >
> > > > > Ignore them until you've got to use a pair of
> > > > scissors like bolt cutters
> > > > to
> > > > > get anywhere with them (always count them
> > > > afterwards - there should be
> > > > 10!!)
> > > > >
> > > > > 50 years of walking on the balls of my feet
> > means
> > > > that even my bunions
> > > > have
> > > > > got bunions now!!
> > > > >
> > > > > Cheers
> > > > >
> > > > > Deri
> > > >
> > >
> > >
> > >
> > >
> > >
> > >__________________________________
> > >Yahoo! Mail - PC Magazine Editors' Choice 2005
> > >http://mail.yahoo.com
> >
>
>
>
>
>
>__________________________________
>Yahoo! Mail - PC Magazine Editors' Choice 2005
>http://mail.yahoo.com
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