Chris - just to second what others have said - urgently - you possibly
feel like cr** just because CO2 levels may be getting high. Oxygen alone
DOES NOT fix this, in fact it decreases the respiratory drive and may make
it worse - that's why it is bad. Using a volume vent by mask or anything
that helps your weak breathing muscles move air is very important, and
their strength may even increase a little when they get a part-time rest
with some kind of support. There are a lot of good options - but trying to
treat underventilation with oxygen alone is most definitely not one of
them! If you start on some night time ventilatory support of any kind -
invasive or non-, you may find you don't need anything at all during the
day and you may be asking yourself why you did not start it sooner.

Seriously - get your doc or get someone to help you get your doc to work
on this with you right away. Don't even settle for a next available
appointment in December, you need your CO2 level checked and help for it
as soon as possible.

Vikki Stefans, M.D., pediatric physiatrist (rehab doc for kids) at UAMS
and Arkansas Children's Hospital.  Working Mom of Sarah T. and Michael C.,
and wife of Henry Stefans. Every mom is a working mom!- OK, dads too.

On Sat, 28 Oct 2006, Chris Coulson wrote:

>     I wanted to let you all know that my breathing has got worse to
> where I'm now needing the oxgen not just at night but in the afternoon
> also.  I don't know how much longer I can continue to fight this.
>
>     I'm really geting tired of fighting my MD as well as everythinbg
> else I've got to deal with.  I'm geting to the point of saying to hake
> with this and just give up which sounds alot easier than to keep fighting.

Hi:

Please read my blog. I make a case for anecdotal data which seems to
be ignored by the clinicians and funding agencies. I suggest it is
time to consider these data rather than ignoring them.

Arnold

Chris, from what I read people with DMD are not suppose to be on
oxygen to much.  It was something about DMD a disease that causes
the weakness breathing and oxygen is for people who have a
respiratory disease.  I don't know who you can ask about that.  I am
not sure who mentioned their son was put on oxygen and he shouldn't
have.  It is ok at certain times. But not permanent. Are you on a
vent, usually when you have problems breathing they can use the non
invasive vent.  My son uses a bipap at night that really helped.
Arlene

--- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@...>
wrote:
>
> DEAR CHRIS,
>
> I hate to think of you as so tired.  It must be really hard.
>
> You spoke of needing oxygen at night and now during the day.  Are
you on a respirator? Via trach or non-invasively?
>
> Please take care of yourself and know that I care.
>
> Marie
>
>
> -----Original Message-----
> From: MD-List@yahoogroups.com on behalf of Chris Coulson
> Sent: Sat 10/28/2006 4:15 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Updated
>
>      I wanted to let you all know that my breathing has got worse
to
> where I'm now needing the oxgen not just at night but in the
afternoon
> also.  I don't know how much longer I can continue to fight this.
>
>      I'm really geting tired of fighting my MD as well as
everythinbg
> else I've got to deal with.  I'm geting to the point of saying to
hake
> with this and just give up which sounds alot easier than to keep
fighting.
>

DEAR CHRIS,

I hate to think of you as so tired.  It must be really hard.

You spoke of needing oxygen at night and now during the day.  Are you on a
respirator? Via trach or non-invasively?

Please take care of yourself and know that I care.

Marie


-----Original Message-----
From: MD-List@yahoogroups.com on behalf of Chris Coulson
Sent: Sat 10/28/2006 4:15 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Updated

      I wanted to let you all know that my breathing has got worse to
where I'm now needing the oxgen not just at night but in the afternoon
also.  I don't know how much longer I can continue to fight this.

      I'm really geting tired of fighting my MD as well as everythinbg
else I've got to deal with.  I'm geting to the point of saying to hake
with this and just give up which sounds alot easier than to keep fighting.

I wanted to let you all know that my breathing has got worse to
where I'm now needing the oxgen not just at night but in the afternoon
also.  I don't know how much longer I can continue to fight this.

      I'm really geting tired of fighting my MD as well as everythinbg
else I've got to deal with.  I'm geting to the point of saying to hake
with this and just give up which sounds alot easier than to keep fighting.

Robin...make sure the van is actually wheel chair accessible. I had
purchased a 2002 Ford Windstar and thought it would be and come to
find out it was not. It could not have a manual ramp or an electic
lift on the sides and if we used the back, he could not sit in the
chair. it will cost $17k to have the floor lowered which is more than
what the van is worth.  Vocational REhab is going to see if it can be
modified otherwise they will get Tim a new van that has a lift.
fortunatly the supervisor was my case worker and she knows my
condition as well as Tim's and she can help us accomplish this
somehow. She is also helping him with other things for college. In
order for Voc Rehab to start helping your child, I believe he needs
to be 16 yrs old or older. dee



--- In MD-List@yahoogroups.com, "Chris Coulson" <robinc1961@...>
wrote:

  Dear family,
       I've now got a van and am trying to work tings out to get a lift
  or ramp.  It sure works better than the car I had and even looks
beter
  to. Wish me good luck.
               Love Robinc

Kathy, My grandson has a Jazzy chair which has been good. His problem
was the cover on the joystick came off, causing his hand to come off
and the chair stooped instantly. He was going down a ramp, I am sure
at top speed, and didn't have his seat belt on. It threw him out and
broke both legs.
Kathy, gram to 10 year old DMD








--- In MD-List@yahoogroups.com, Kmmx2@... wrote:
>
> Hope he's not getting an Invacare. I will never own another invacare
power
> chair. Our 14 year old has one. It's only 1 1/2 years old and it's
unbelievable
> the things that have broken on it. Just this week  a part on the
tilt motor
> snapped and we have to replace the entire motor. for a miniscule
1000 dollars.
> What a racket. kathy
>

Dear family,
      I've now got a van and am trying to work tings out to get a lift
or ramp.  It sure works better than the car I had and even looks beter
to. Wish me good luck.
              Love Robinc

Dear MJ,
      Wsa glad to hear how you are doing.  I want to wosh you good luck
in your new classes and with the van.  I hope you are doing fine at
have a very good day.
           God bless Robinc

Hi every body,
      I'm still kicking but just barely.  Sorry I've not posted in a
while but haven't been feeling good.  Hope every one is ok and have a
good day.

Marie Pichaske
Administrative Coordinator
Center for Genetic Medicine
Children's National Medical Center
111 Michigan Avenue, N.W.
Washington, DC 20010
(202) 884-6029 (voice)
(202) 884-6014 (fax)
mpichaske@...

Steve, my son Jayson is 13 and has CMT. He is in a
wheelchair. He lost the ability to stand and walk
about 7 months ago. I have found my local MDA to be
very helpfull. They were able to tell me where the
closest support group meetings are and even send me
reminders in the mail. Although the closest one is 2
hours away from me. The MDA is calling it's clients in
my area trying to get one started closer to home.
These people are god sent!

--- ShawnaFeely@... wrote:

> I agree with the last comment that it is important
> to live your life and not give up on the things you
> want due to CMT.  It is often helpful to find out as
> much as you can and talk to other people who are
> going through similar problems.  The CMTA is also a
> good source of information re: Charcot Marie Tooth.
> They sponsor support groups all over the US, so they
> would probably know of some in your area.  There is
> also a CMT specialty clinic in Detroit, MI.  If you
> are willing to travel, they offer an evaluation of
> your symptoms and can help with different ideas for
> daily management of CMT.  You can find out more
> about them on the CMT Association website.
>
>
> -----Original Message-----
> From: jasona65@...
> To: MD-List@yahoogroups.com
> Sent: Sun, 15 Oct 2006 11:37 AM
> Subject: RE: [MD-List] chacot-marie-tooth, dealing
> with it?
>
>
> Steven,  There are no “tricks” to coping with a
> disability.  You first have to come to terms with it
> and not let it be the controlling factor in your
> life. Yes, you have difficulties in doing thing, so
> you have to do them differently. The CMT is what you
> have and not who you are.  Look for another partner,
> if that’s what you want.  Don’t dwell on what
> other might think of you.  I have done these things
> and I’m sure my son is a happier person because of
> them.
>
> Have you checked with your local MDA office to see
> if there are any groups they sponsor?  See if you
> can find something on line.  I know that these DMD
> groups have been very beneficial to me.
>
> My son Jason, now 21 has DMD.
>
>
>
>
> From: MD-List@yahoogroups.com
> [mailto:MD-List@yahoogroups.com] On Behalf Of steve
> Sent: Saturday, October 14, 2006 7:27 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] chacot-marie-tooth, dealing with
> it?
>
> Does anyone know of any effective ways of coping
> with it? My older
> brother is on a wheelchair because of it. I'm afraid
> to look for
> another wife [got divorced] My hands shake so bad I
> think people at
> work think I'm on drugs. Know of any support groups
> in central Indiana?
> I know I have it better than some, just a little
> concerned about the
> future
>
>
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Vitamin E and selenium works with sheep with muscular dystrophy but
not humans.  I did tell my son's doctor at Hopkins 31 years ago and
they said it does not work with humans.  However I have given my son
selenium and E since he was about 7 years old.  It may have helped
prolong his walking a little, but it is hard to tell for sure what
does help, he also takes Q 10 which is suppose  help the heart, plus
Multi, calcium, & glucosamine, sometime in the winter he would take
prescription Vit D twice a week, because you need sunlight to produce
D in you body and in the winter he didn't get as much sunshine. I hope
he has continued his vitamins. Way back then I read Adele Davis books
on nutrition and tried everything that was to improve muscle,
including rosemary tea, however I read the tea can work as a diuretic
which he didn't need. I also do not approve of the way they do
testing, first most people do not always tell the doctor the truth.
When asked if they took the meds or diet prescribed they will say yes
even if they have not followed orders.  I know people with high
chlosterol and they tell the doctor they are on a low fat diet and
they are not.  Have you ever noticced when answering the questioneers
doctors sometime give you to fill out about health you answer what
looks best for you.  My GYN gave me a survey and some of the questions
I fudged a on.  If I did something right 3 times one week and in the
other 3 weeks did it only 1 or 2 times, I would put 3 times a week. I
felt I intend to do it 3 times a week, but didn't get around to it,
but some time I do it 3 times a week. Did you see on the news where
high school kids were asked if they would cheat to pass, and a large
percent admitted yes.
Arlene


--- In MD-List@yahoogroups.com, "apelofsky" <apelofsky@...> wrote:
>
> Hi:
>
> I posted a paper on my blog that may explain why selenium and
vitamin
> E helps our kids especially if our kids take these nutrients as soon
> as they are diagnosed. I also suggest that it is likely that kids
> would not get this disease if their Mothers were taking these
> nutrients before they become pregnant. Please show this paper to
your
> docs. Just maybe the funding agencies will take heed and study how
the
> incidence of this disease could be significantly reduced if young
> women were to take these nutrients.
>
> Arnold
>

Hi  Tina

From what I have learned, Deflazacort is superior to Prednisone. It appears to have the favorable attributes of Pred. without the nasty negative side effects. (mood swings, etc.)  In fact, recent tests have indicated that it actually mineralizes bone. Only negative is our illustrious FDA has not yet approved it even though the rest of the world has been successfully using it for years as have many members of this post. I think you have a good idea there with the vibrating chair. I try to get Davey out of his chair every chance I get just to get him in a different position. I give Davey Vit D an K in emulsion as well cal-mag supplements. Another good bone builder is Strontium. You may want to consider getting your son a 25 Hydroxy Vit D . blood teat. Vitamin D is crucial to CA metabolism.

Greg 

Hi Greg -

 

I'm not sure which disease your son has; my six-year-old has Duchenne. He's been on prednisone since he was 2-1/2 yrs old. He had osteoporosis - demineralizing of the bones, including the spine,  from very early on. Some of that is inherent in the disease, but the steroids do tend to make it worse. I do worry about it, as vertebral fractures do happen - sometimes painlessly, sometimes not.

 

We give Bryan a calcium supplement, and encourage him to exercise as much as he feels like. Obviously, if your son isn't walking, that is tough to do. I push for sun exposure on a regular basis - we live in Maine, so it can be tough in the winter! I also encourage him to sit in the recliner chair with the heat/vibration pad on it - sounds silly, but there has been some research that hints that the vibration can help encourage bone growth. And he really likes the warmth when the weather is cold and damp! I theorize that most any non-damaging stress on the bones will encourage them to strengthen, but I could be wrong. Excessive sodium can leach the calcium from the bones as well, so I'm careful about salt intake.

 

Sometimes steroids are prescribed with a dosing pattern that includes days off, to prevent the adrenal gland from shutting down. It does seem to help with side effects, but it makes it less effective against the muscle deterioration. All steroids have heavy-duty side effects, and using them can be a tough decision to make. The doctors at our clinic seem a bit surprised by his quad and gleut (butt) strength....I have to assume the prednisone is helping him, but I do second-guess that decision a lot.

 

Best wishes - Tina

 

 

----- Original Message -----

From: Greg Evans

To: MD-List@yahoogroups.com

Sent: Saturday, October 14, 2006 9:21 AM

Subject: [MD-List] deflazacort versus adrenel

I am wondering if anyone else has their son on Calcort. I have had Davey on
it for several years and it seems to have slowed the progression of the
disease at the expense of it having postponed his entering puberty both
mentally and phyically. I am looking at this as a plus as when boys go into
puberty this disease seems to go into high ghear. Seems his adrenal gland
has shut down and does supply cortisol to him. Also, his back bone is
deminerizing? Has anyone had this expierence? I am told not to be concerned
about it, but......its kinda hard not to? Your thoughts?

Greg

Yahoo! Groups Links

Hi:

I posted a paper on my blog that may explain why selenium and vitamin
E helps our kids especially if our kids take these nutrients as soon
as they are diagnosed. I also suggest that it is likely that kids
would not get this disease if their Mothers were taking these
nutrients before they become pregnant. Please show this paper to your
docs. Just maybe the funding agencies will take heed and study how the
incidence of this disease could be significantly reduced if young
women were to take these nutrients.

Arnold

Sorry it has taken so long. I've got three dr's a heart,family and a
counslor that keeps check on me.  My heart is fair and o2 for the
breathing at night.  Thank you for the support and God bless you all
                                                        Chris

Does anyone know of any effective ways of coping with it? My older
brother is on a wheelchair because of it. I'm afraid to look for
another wife [got divorced] My hands shake so bad I think people at
work think I'm on drugs. Know of any support groups in central Indiana?
   I know I have it better than some, just a little concerned about the
future

----- Original Message -----

From: Greg Evans

To: MD-List@yahoogroups.com

Sent: Saturday, October 14, 2006 8:21 AM

Subject: [MD-List] deflazacort versus adrenel

I am wondering if anyone else has their son on Calcort. I have had Davey on
it for several years and it seems to have slowed the progression of the
disease at the expense of it having postponed his entering puberty both
mentally and phyically. I am looking at this as a plus as when boys go into
puberty this disease seems to go into high ghear. Seems his adrenal gland
has shut down and does supply cortisol to him. Also, his back bone is
deminerizing? Has anyone had this expierence? I am told not to be concerned
about it, but......its kinda hard not to? Your thoughts?

Greg

Yahoo! Groups Links

I am wondering if anyone else has their son on Calcort. I have had Davey on
it for several years and it seems to have slowed the progression of the
disease at the expense of it having postponed his entering puberty both
mentally and phyically. I am looking at this as a plus as when boys go into
puberty this disease seems to go into high ghear. Seems his adrenal gland
has shut down and does supply cortisol to him. Also, his back bone is
deminerizing? Has anyone had this expierence? I am told not to be concerned
about it, but......its kinda hard not to? Your thoughts?

Greg




Yahoo! Groups Links

----- Original Message -----

From: tyson@...

To: MD-List@yahoogroups.com

Sent: Tuesday, October 10, 2006 7:39 PM

Subject: [MD-List] Hi Donna here from New Zealand

Hi there

It has been ages since i posted and things have been going fairly well with Tyson. He is now 15 and doing okay.

They are wanting him to do another sleep study and look at trying bi-pap. He refuses and says that he does not want one. What am i to do?

.