Hello -
I work with a genetic counselor who specializes in md and here is her
response to the question Lanae asked about LGMD.

Thanks
Marie

-----Original Message-----
From: Gordon, Erynn
Sent: Wednesday, March 01, 2006 11:14 AM
To: Pichaske, Marie
Subject: RE: [MD-List] Genetic testing

Hi Marie,

There are now about 17 different forms of LGMD, some of which can be
diagnosed by clinically available genetic tests (blood test) many of
which can not.  Some of the LGMDs present differently (different areas
of weakness, different ages of onset).  I would suggest that this person
be evaluated at an MDA clinic (we can provide recommendations if she
provides a general area that she lives in) and worked up for the
diagnosis.  It may be that only blood testing will be needed but no one
can guarantee that (blood tests only available for 4 of the LGMDs).  It
would probably also be worthwhile to try to track down the doc who moved
to CA and figure out if he still has her biopsy or if it was left at the
institution he moved from.  Muscle biopsies are considered to be
valuable and precious resources by both patients and researchers and in
all likelihood, if he is still interested in MD he took the samples with
him.

Hope that helps.

Erynn

-----Original Message-----
From: Pichaske, Marie
Sent: Tuesday, February 28, 2006 12:32 PM
To: Gordon, Erynn
Subject: FW: [MD-List] Genetic testing

Hi Erynn,
this person is on my list serv looking for genetic information (see
below). Is there anything you can suggest that might help her?

thanks!
Marie

Marie Pichaske
Administrative Coordinator
Center for Genetic Medicine
Children's National Medical Center
111 Michigan Ave, NW
Washington, DC 20010
202.884.6029
202.884.6014 (FAX)



-----Original Message-----
From: MD-List@yahoogroups.com on behalf of Lanae Squires
Sent: Mon 2/27/2006 8:53 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Genetic testing

Hi, I am seeking info about specific MD testing.

I am 29 years old, diagnossed at age 5 with LGMD via muscle biopsy at
age 22 had another biopsy for specific type testing, unfortunantly at
that time the scientsist who my sample was sent to was in the process of
moving from PA to CA and I never got the results. I am wanting to get
this typeing done again but if Ican avoid a muscle byopsy I would prefer
that, I think I remember blood testing as an option? any suggestions
would be helpful.

Thank you, Lanae Squires




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

From: Lanae Squires

To: MD-List@yahoogroups.com

Sent: Monday, February 27, 2006 8:48 PM

Subject: [MD-List] Teacher/ Heather

Heather, just wanted to welcome you and give you kudos for really caring about these boys. They are in good hands and hopefully with your caring aditude you can help them early on with their self image/esteem. Try the QUEST Magazine, they have great articles - discussing every day living with an MD.

Kudos again, we need more educators like you :)

Lanae Squires

LGMD

Never underestimate the power of a kind word or smile

---

From: MD-List@yahoogroups.com
Reply-To: MD-List@yahoogroups.com
To: MD-List@yahoogroups.com
Subject: [MD-List] Digest Number 1963
Date: 27 Feb 2006 10:57:28 -0000
There are 5 messages in this issue.

Topics in this digest:

1. Bloating and Irregularity
From: "pondnote2" <pondnote2@...>
2. new here, short intro and questions..
From: heather c <heaven1975@...>
3. Re: Bloating
From: "Arlene " <breezytimber@...>
4. RE: new here, short intro and questions..
From: "Adele" <jasona65@...>
5. RE: Re: Bloating
From: "Pichaske, Marie" <mpichaske@...>


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Sun, 26 Feb 2006 23:00:31 -0000
From: "pondnote2" <pondnote2@...>
Subject: Bloating and Irregularity

In addition to a scoop of Metamucil each morning, I've found eating
three to five prunes each day keeps me regular. I've tried prune
juice, but it is'nt quite as effective. I take olive oil to
prevent bloating as well. It does help things slide more easily, but
the prunes make the stool softer which is what you really want. If I
have vitamin capsules to take, I'll take them with the olive
oil. I have trouble getting capsules stuck in my throat, and the oil
helps it go down. Unfortunately, olive oil by itself is not too
tasty. (Although I prefer the taste over the bloating.) I might try
peppermint oil and see if its just as effective.





________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Sun, 26 Feb 2006 18:19:07 -0500
From: heather c <heaven1975@...>
Subject: new here, short intro and questions..

hi everyone, my name is heather. i'm an early intervention teacher in a center-based setting. i've got the best class of 2 year olds anyone could ever dream of. =o)

in my class, i have a "set" of identical 2 year old twins. just before christmas, they were both diagnosed with merosin deficient CMD. the boys are doing great, they just got long leg (HKAFOs) braces and are standing (by locking the HKAFOs at both the knee and hip joint) with support for the first time. once able to stand, they've been able to explore more freely (using dynamic standers as well as physical assistance) their language is starting to really develop too (which is complicated by english as a second langauge). they're really doing great.

does anyone here have any insight about CMD with merosin deficiency? i know it differs person to person, and i've read the studies and such, but does anyone have any real life insight? these boys are lucky, their mom is so fabulous! but still, what lies ahead for them? should i try toilet training, or will it just frustrate them? are there any clear cut answers?

i'm also doing a research paper on this type of CMD for my master's level class, and i'm finding the research to be so difficult, especially since the bulk of the paper isn't so much clinical info about CMD, but how it effects the person and their family on all levels.

i appreciate any insight/advice you can give me. i'm sorry if i seem out of place posting this.

hugs to you all,

Heather

~~~~~~~~~~~~~~~~~~~~~~~~~
"There are two ways of spreading light: to be the candle or the mirror that reflects it." -- Edith Wharton


[This message contained attachments]



________________________________________________________________________
________________________________________________________________________

Message: 3
Date: Mon, 27 Feb 2006 00:36:55 -0000
From: "Arlene " <breezytimber@...>
Subject: Re: Bloating

He usually takes about a tablespoon light olive oil, and quickly
takes it then drinks water, he drinks cold, I would drink warm tea
or something. I would think a warm drink would wash it down better.
A teaspoon may help, and if not try another teaspoon. I wouldn't
give more than 1 tablespoon in a 6 hour peroid. For regular bowel
movements he also eats seedless prunes (you can get them in flavors
now) or prune juice. Probably drinks about 1/4 cup of prune juice
or 3 or 4 prunes, each morning. He goes each day. Which is very
good for someone in his condition. When we had horses and they
bloat the first thig the vet tells you to do is give them vegetable
oil. I have used it for goats that bloat. I used to donate goats
to the Baltimore Zoo, one injured her hip there, when I brought her
home with her sister to breed her sister, they gave me white powder
to give her on bread each morning, they said it helped her hip.
Years later when I got arthritis I called and asked what did they
give the goat they said glucosamine. But they sed it on animals many
years befor humans used it. I started using it myself and it really
helps.
Arlene

--- In MD-List@yahoogroups.com, AV <raybug10@...> wrote:
>
> How does Mike get down the olive oil? That sounds like good idea.
>
> Anneliese
>
> Arlene <breezytimber@...> wrote:
> A little vegetable oil helps break up gas. Let him take about a
> teaspoon full, Mike takes a little olive oil to keep his bowel
> movement regular.
> Arlene
>
> --- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@>
> wrote:
> >
> > Hello All,
> > A friend of mine's 25 year old son has a gas problem. His
stomach is
> > distended and he is uncomfortable. He takes miralax but still has
> > trouble moving his bowels.
> >
> > Does anyone have any suggestions for him that I can pass along?
> >
> > Thanks
> > Marie
> >
>
>
>
>
>
>
> SPONSORED LINKS
> Muscular dystrophy association
>
> ---------------------------------
> YAHOO! GROUPS LINKS
>
>
> Visit your group "MD-List" on the web.
>
> To unsubscribe from this group, send an email to:
> MD-List-unsubscribe@yahoogroups.com
>
> Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> ---------------------------------
>
>
>
>
>
> ---------------------------------
> Yahoo! Mail
> Bring photos to life! New PhotoMail makes sharing a breeze.
>






________________________________________________________________________
________________________________________________________________________

Message: 4
Date: Sun, 26 Feb 2006 20:00:20 -0500
From: "Adele" <jasona65@...>
Subject: RE: new here, short intro and questions..

Heather. It's good to see young people like yourself getting involved with
kids who have various forms of MD. I really can't help you out with this
particular type of MD. My son, Jason is 20 and has Duchenne Muscular
Dystrophy. Have you tried to contact the local MDA office that the boys are
part of? They might be able to point you in the right direction and maybe
even their clinic doctor(of course with the permission of the parents).



Adele



_____

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of
heather c
Sent: Sunday, February 26, 2006 6:19 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] new here, short intro and questions..



hi everyone, my name is heather. i'm an early intervention teacher in a
center-based setting. i've got the best class of 2 year olds anyone could
ever dream of. =o)



in my class, i have a "set" of identical 2 year old twins. just before
christmas, they were both diagnosed with merosin deficient CMD. the boys are
doing great, they just got long leg (HKAFOs) braces and are standing (by
locking the HKAFOs at both the knee and hip joint) with support for the
first time. once able to stand, they've been able to explore more freely
(using dynamic standers as well as physical assistance) their language is
starting to really develop too (which is complicated by english as a second
langauge). they're really doing great.



does anyone here have any insight about CMD with merosin deficiency? i know
it differs person to person, and i've read the studies and such, but does
anyone have any real life insight? these boys are lucky, their mom is so
fabulous! but still, what lies ahead for them? should i try toilet training,
or will it just frustrate them? are there any clear cut answers?



i'm also doing a research paper on this type of CMD for my master's level
class, and i'm finding the research to be so difficult, especially since the
bulk of the paper isn't so much clinical info about CMD, but how it effects
the person and their family on all levels.



i appreciate any insight/advice you can give me. i'm sorry if i seem out
of place posting this.



hugs to you all,



Heather

~~~~~~~~~~~~~~~~~~~~~~~~~
"There are two ways of spreading light: to be the candle or the mirror that
reflects it." -- Edith Wharton



SPONSORED LINKS


Muscular
<http://groups.yahoo.com/gads?t=ms&k=Muscular+dystrophy+association&w1=Muscu
lar+dystrophy+association&c=1&s=36&.sig=TJDvjlSjuibnzIBL0s6ZOw> dystrophy
association



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[This message contained attachments]



________________________________________________________________________
________________________________________________________________________

Message: 5
Date: Sun, 26 Feb 2006 21:37:13 -0500
From: "Pichaske, Marie" <mpichaske@...>
Subject: RE: Re: Bloating

Thanks everyone for all your answers! - This guy is going to the docs and I had never heard about trying oil and taking pills with oil is a great idea. Prunes are a good idea too.

take care -
Marie

-----Original Message-----
From: MD-List@yahoogroups.com on behalf of Arlene
Sent: Sun 2/26/2006 7:36 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Re: Bloating

He usually takes about a tablespoon light olive oil, and quickly
takes it then drinks water, he drinks cold, I would drink warm tea
or something. I would think a warm drink would wash it down better.
A teaspoon may help, and if not try another teaspoon. I wouldn't
give more than 1 tablespoon in a 6 hour peroid. For regular bowel
movements he also eats seedless prunes (you can get them in flavors
now) or prune juice. Probably drinks about 1/4 cup of prune juice
or 3 or 4 prunes, each morning. He goes each day. Which is very
good for someone in his condition. When we had horses and they
bloat the first thig the vet tells you to do is give them vegetable
oil. I have used it for goats that bloat. I used to donate goats
to the Baltimore Zoo, one injured her hip there, when I brought her
home with her sister to breed her sister, they gave me white powder
to give her on bread each morning, they said it helped her hip.
Years later when I got arthritis I called and asked what did they
give the goat they said glucosamine. But they sed it on animals many
years befor humans used it. I started using it myself and it really
helps.
Arlene

--- In MD-List@yahoogroups.com, AV <raybug10@...> wrote:
>
> How does Mike get down the olive oil? That sounds like good idea.
>
> Anneliese
>
> Arlene <breezytimber@...> wrote:
> A little vegetable oil helps break up gas. Let him take about a
> teaspoon full, Mike takes a little olive oil to keep his bowel
> movement regular.
> Arlene
>
> --- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@>
> wrote:
> >
> > Hello All,
> > A friend of mine's 25 year old son has a gas problem. His
stomach is
> > distended and he is uncomfortable. He takes miralax but still has
> > trouble moving his bowels.
> >
> > Does anyone have any suggestions for him that I can pass along?
> >
> > Thanks
> > Marie
> >
>
>
>
>
>
>
> SPONSORED LINKS
> Muscular dystrophy association
>
> ---------------------------------
> YAHOO! GROUPS LINKS
>
>
> Visit your group "MD-List" on the web.
>
> To unsubscribe from this group, send an email to:
> MD-List-unsubscribe@yahoogroups.com
>
> Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> ---------------------------------
>
>
>
>
>
> ---------------------------------
> Yahoo! Mail
> Bring photos to life! New PhotoMail makes sharing a breeze.
>







SPONSORED LINKS
Muscular dystrophy association <http://groups.yahoo.com/gads?t=ms&k=Muscular+dystrophy+association&w1=Muscular+dystrophy+association&c=1&s=36&.sig=TJDvjlSjuibnzIBL0s6ZOw>

________________________________

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[This message contained attachments]



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Find just what you're after with the new, more precise MSN Search - try it now!

Thanks everyone for all your answers!  - This guy is going to the docs and I had
never heard about trying oil and taking pills with oil is a great idea. Prunes
are a good idea too.

take care -
Marie

-----Original Message-----
From: MD-List@yahoogroups.com on behalf of Arlene
Sent: Sun 2/26/2006 7:36 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Re: Bloating

He usually takes about a tablespoon light olive oil, and  quickly
takes it then drinks water, he drinks cold, I would drink warm tea
or something.  I would think a warm drink would wash it down better.
A teaspoon may help, and if not try another teaspoon. I wouldn't
give more than 1 tablespoon in a 6 hour peroid. For regular bowel
movements he also eats seedless prunes (you can get them in flavors
now) or prune juice.  Probably drinks about 1/4 cup of prune juice
or 3 or 4 prunes, each morning. He goes each day.  Which is very
good for someone in his condition.  When we had horses and they
bloat the first thig the vet tells you to do is give them vegetable
oil.  I have used it for goats that bloat.  I used to donate goats
to the Baltimore Zoo, one injured her hip there, when I brought her
home with her sister to breed her sister, they gave me white powder
to give her on bread each morning, they said it helped her hip.
Years later when I got arthritis I called and asked what did they
give the goat they said glucosamine. But they sed it on animals many
years befor humans used it. I started using it myself and it really
helps.
Arlene

--- In MD-List@yahoogroups.com, AV <raybug10@...> wrote:
>
> How does Mike get down the olive oil?  That sounds like good idea.
>
>   Anneliese
>
> Arlene <breezytimber@...> wrote:
>   A little vegetable oil helps break up gas.  Let him take about a
> teaspoon full, Mike takes a little olive oil to keep his bowel
> movement regular.
> Arlene
>
> --- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@>
> wrote:
> >
> > Hello All,
> > A friend of mine's 25 year old son has a gas problem. His
stomach is
> > distended and he is uncomfortable. He takes miralax but still has
> > trouble moving his bowels.
> >
> > Does anyone have any suggestions for him that I can pass along?
> >
> > Thanks
> > Marie
> >
>
>
>
>
>
>
>   SPONSORED LINKS
>         Muscular dystrophy association
>
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>
>     Visit your group "MD-List" on the web.
>
>     To unsubscribe from this group, send an email to:
>  MD-List-unsubscribe@yahoogroups.com
>
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> ---------------------------------
>
>
>
>
>
> ---------------------------------
> Yahoo! Mail
> Bring photos to life! New PhotoMail  makes sharing a breeze.
>







SPONSORED LINKS
Muscular dystrophy association
<http://groups.yahoo.com/gads?t=ms&k=Muscular+dystrophy+association&w1=Muscular+\
dystrophy+association&c=1&s=36&.sig=TJDvjlSjuibnzIBL0s6ZOw>

________________________________

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	 *  Visit your group "MD-List <http://groups.yahoo.com/group/MD-List> " on the
web.

*  To unsubscribe from this group, send an email to:
	  MD-List-unsubscribe@yahoogroups.com
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<http://docs.yahoo.com/info/terms/> .


________________________________

He usually takes about a tablespoon light olive oil, and  quickly
takes it then drinks water, he drinks cold, I would drink warm tea
or something.  I would think a warm drink would wash it down better.
A teaspoon may help, and if not try another teaspoon. I wouldn't
give more than 1 tablespoon in a 6 hour peroid. For regular bowel
movements he also eats seedless prunes (you can get them in flavors
now) or prune juice.  Probably drinks about 1/4 cup of prune juice
or 3 or 4 prunes, each morning. He goes each day.  Which is very
good for someone in his condition.  When we had horses and they
bloat the first thig the vet tells you to do is give them vegetable
oil.  I have used it for goats that bloat.  I used to donate goats
to the Baltimore Zoo, one injured her hip there, when I brought her
home with her sister to breed her sister, they gave me white powder
to give her on bread each morning, they said it helped her hip.
Years later when I got arthritis I called and asked what did they
give the goat they said glucosamine. But they sed it on animals many
years befor humans used it. I started using it myself and it really
helps.
Arlene

--- In MD-List@yahoogroups.com, AV <raybug10@...> wrote:
>
> How does Mike get down the olive oil?  That sounds like good idea.
>
>   Anneliese
>
> Arlene <breezytimber@...> wrote:
>   A little vegetable oil helps break up gas.  Let him take about a
> teaspoon full, Mike takes a little olive oil to keep his bowel
> movement regular.
> Arlene
>
> --- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@>
> wrote:
> >
> > Hello All,
> > A friend of mine's 25 year old son has a gas problem. His
stomach is
> > distended and he is uncomfortable. He takes miralax but still has
> > trouble moving his bowels.
> >
> > Does anyone have any suggestions for him that I can pass along?
> >
> > Thanks
> > Marie
> >
>
>
>
>
>
>
>   SPONSORED LINKS
>         Muscular dystrophy association
>
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>
>     Visit your group "MD-List" on the web.
>
>     To unsubscribe from this group, send an email to:
>  MD-List-unsubscribe@yahoogroups.com
>
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> ---------------------------------
>
>
>
>
>
> ---------------------------------
> Yahoo! Mail
> Bring photos to life! New PhotoMail  makes sharing a breeze.
>

In addition to a scoop of Metamucil each morning, I've found eating
three to five prunes each day keeps me regular.  I've tried prune
juice, but it is'nt quite as effective.  I take olive oil to
prevent bloating as well.  It does help things slide more easily, but
the prunes make the stool softer which is what you really want.  If I
have vitamin capsules to take, I'll take them with the olive
oil.  I have trouble getting capsules stuck in my throat, and the oil
helps it go down.  Unfortunately, olive oil by itself is not too
tasty.  (Although I prefer the taste over the bloating.)  I might try
peppermint oil and see if its just as effective.

He should go to the doctor, they may say the same thing but they may be
concerned about a more serious issue.
Terri

From: "Adele" <jasona65@...>
Reply-To: MD-List@yahoogroups.com
To: <MD-List@yahoogroups.com>
Subject: RE: [MD-List] Bloating
Date: Fri, 24 Feb 2006 17:46:19 -0500

You can suggest some gas reliever, like gasx.



Adele



    _____

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of
Pichaske, Marie
Sent: Friday, February 24, 2006 5:37 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Bloating



Hello All,
A friend of mine's 25 year old son has a gas problem. His stomach is
distended and he is uncomfortable. He takes miralax but still has trouble
moving his bowels.

Does anyone have any suggestions for him that I can pass along?

Thanks
Marie



SPONSORED LINKS


Muscular
<http://groups.yahoo.com/gads?t=ms&k=Muscular+dystrophy+association&w1=Muscu
lar+dystrophy+association&c=1&s=36&.sig=TJDvjlSjuibnzIBL0s6ZOw>  dystrophy
association



    _____

YAHOO! GROUPS LINKS



*  Visit your group "MD-List <http://groups.yahoo.com/group/MD-List> "
on the web.

*  To unsubscribe from this group, send an email to:
   MD-List-unsubscribe@yahoogroups.com
<mailto:MD-List-unsubscribe@yahoogroups.com?subject=Unsubscribe>

*  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service
<http://docs.yahoo.com/info/terms/> .



    _____

A little vegetable oil helps break up gas.  Let him take about a
teaspoon full, Mike takes a little olive oil to keep his bowel
movement regular.
Arlene

--- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@...>
wrote:
>
> Hello All,
> A friend of mine's 25 year old son has a gas problem. His stomach is
> distended and he is uncomfortable. He takes miralax but still has
> trouble moving his bowels. 
>
> Does anyone have any suggestions for him that I can pass along?
>
> Thanks
> Marie
>

Mike was having a lot of trouble with stomach pain during the night,
we spent 3 days at Hopkins and all they came up with was acid reflux
which we said that is not what it is.  They had him cleaned out and
then gave him food and xrayed, and there was no blockage.  However I
do thing sometime their system does not work as well as it should.
However he never took the acid reflux med and at the time he was on
Lamisil for toe nail fungus, when the lamisil was stopped he has not
had much stomach problem unless he eats to much before going to
bed.  It is a good idea to watch late snacks, give the food time to
digest before going to bed. He especially had touble with drinking a
small amount of soda late in the evening.  He now drinks watered
down juice of water if close to bedtime.  Juice is acid and can
cause a problem to. I think we haveto be careful of these guys diet
especially when older.
Arlene

--- In MD-List@yahoogroups.com, AV <raybug10@...> wrote:
>
> He probably should be seen by a doctor as soon as he can.  Maybe a
phone call to a pharmacist to see if he can up the amount of
miralax?  My son has constipation issues at 14 and I worry a lot
about bowel blockage.  Hope this isn't his problem but if he is seen
early enough he might avoid surgery and/or a hospital stay.
>
>   Anneliese
>
> Adele <jasona65@...> wrote:
>         v\:* {behavior:url(#default#VML);}  o\:* {behavior:url
(#default#VML);}  w\:* {behavior:url(#default#VML);}  .shape
{behavior:url(#default#VML);}        st1\:*{behavior:url
(#default#ieooui) }                You can suggest some gas
reliever, like gasx.
>
>   Adele
>
>
> ---------------------------------
>
>   From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]
On Behalf Of Pichaske, Marie
> Sent: Friday, February 24, 2006 5:37 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Bloating
>
>
>   Hello All,
> A friend of mine's 25 year old son has a gas problem. His stomach
is distended and he is uncomfortable. He takes miralax but still has
trouble moving his bowels.
>   Does anyone have any suggestions for him that I can pass along?
>   Thanks
> Marie
>
>
>
>   SPONSORED LINKS
>         Muscular dystrophy association
>
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>
>     Visit your group "MD-List" on the web.
>
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>  MD-List-unsubscribe@yahoogroups.com
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A little vegetable oil helps break up gas.  Let him take about a
teaspoon full, Mike takes a little olive oil to keep his bowel
movement regular.
Arlene

--- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@...>
wrote:
>
> Hello All,
> A friend of mine's 25 year old son has a gas problem. His stomach is
> distended and he is uncomfortable. He takes miralax but still has
> trouble moving his bowels.
>
> Does anyone have any suggestions for him that I can pass along?
>
> Thanks
> Marie
>

Sometimes just a plain abdomen x-ray (aka KUB for Kidney, Ureters and
Bladder) will help assess whether there is just still a whole lot of stool
packed up or just gas and guide treatment. Oftentimes, you can't really
tell from just the physical exam.

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, 25 Feb 2006, Lady Loverbug wrote:

> Your very welcome Marie,
> If you come up with any new things, I would like to know also, looking and
> feeling pregnat  for over 2 yrs in no fun, but I manage. Children's pain can
> be very extrememe on this,
>
> Xoxox
> Valerie
>
> -------Original Message-------
>
> From: Pichaske, Marie
> Date: 02/25/06 08:34:51
> To: MD-List@yahoogroups.com
> Subject: RE: [MD-List] Bloating
>
> Thanks, Adele, Valerie and Annaliese, I'm going to pass your suggestions
> along to John's parents.
>
> Marie
>
> Marie Pichaske
> Administrative Coordinator
> Center for Genetic Medicine
> Children's National Medical Center
> 111 Michigan Ave, NW
> Washington, DC 20010
> 202.884.6029
> 202.884.6014 (FAX)
>
>
>
> -----Original Message-----
> From: MD-List@yahoogroups.com on behalf of Lady Loverbug
> Sent: Sat 2/25/2006 11:02 AM
> To: MD-List@yahoogroups.com
> Subject: Re: [MD-List] Bloating
>
> Thanks for the info, I am 52 yrs old with DD, and have had a bloating since
> DEC 2004, and can look 4 months pregnat to 9 months, and very painful, I
> have tried so many things, including gax x, which works some days and not
> the other. I have used almost everything for the constipation, from
> lactlaose, senna, metamucial , citracill, I have even used a heating pad to
> relax the stomach muscles, helps sometime. I had a colonoscopy and Dr said
> that senna is a stimulated laxative and not good for colon. I bought an
> extra bottle used for prep for the test, Magnesium Citrate Oral Solution, it
> s a saline laxative. I am going to try it, but at smaller doses when I don't
> have to go anywhere.. The Dr recommended talked with my GI Dr. I hope this
> helps, but talking with your GI Dr would be the best best. Then saline
> soultion, it was only 1.49. Then the old fashioned remedy of enemas, I have
> got gotten to that point yet..lol
>
>  I hope this helps to some degree. I know how the feeling is. I had to have
> my esophygus dialted ,cause food was sticking and very bloated. If you have
> any others question, please feel free to ask.
>
>
>
> God Bless,
>
> Valerie
>
>
>
> -------Original Message-------
>
>
>
> From: Pichaske, Marie
>
> Date: 02/24/06 21:43:55
>
> To: MD-List@yahoogroups.com
>
> Subject: [MD-List] Bloating
>
>
>
> Hello All,
>
> A friend of mine's 25 year old son has a gas problem. His stomach is
> distended and he is uncomfortable. He takes miralax but still has trouble
> moving his bowels.
>
> Does anyone have any suggestions for him that I can pass along?
>
> Thanks
>
> Marie
>
>
>
>
>
> SPONSORED LINKS Muscular dystrophy association
>
>
>
>
>
>
>
> YAHOO! GROUPS LINKS
>
>
>
> Visit your group "MD-List" on the web.
>
>
>
> To unsubscribe from this group, send an email to:
>
> MD-List-unsubscribe@yahoogroups.com
>
>
>
> Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> SPONSORED LINKS Muscular dystrophy association
>
>
>
> YAHOO! GROUPS LINKS
>
> Visit your group "MD-List" on the web.
>
> To unsubscribe from this group, send an email to:
> MD-List-unsubscribe@yahoogroups.com
>
> Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
>
>
>
>
>
>

Thanks, Adele, Valerie and Annaliese, I'm going to pass your suggestions along
to John's parents.

Marie

Marie Pichaske
Administrative Coordinator
Center for Genetic Medicine
Children's National Medical Center
111 Michigan Ave, NW
Washington, DC 20010
202.884.6029
202.884.6014 (FAX)



-----Original Message-----
From: MD-List@yahoogroups.com on behalf of Lady Loverbug
Sent: Sat 2/25/2006 11:02 AM
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] Bloating

Thanks for the info, I am 52 yrs old with DD, and have had a bloating since
DEC 2004, and can look 4 months pregnat to 9 months, and very painful, I
have tried so many things, including gax x, which works some days and not
the other. I have used almost everything for the constipation, from
lactlaose, senna, metamucial , citracill, I have even used a heating pad to
relax the stomach muscles, helps sometime. I had a colonoscopy and Dr said
that senna is a stimulated laxative and not good for colon. I bought an
extra bottle used for prep for the test, Magnesium Citrate Oral Solution, it
s a saline laxative. I am going to try it, but at smaller doses when I don't
have to go anywhere.. The Dr recommended talked with my GI Dr. I hope this
helps, but talking with your GI Dr would be the best best. Then saline
soultion, it was only 1.49. Then the old fashioned remedy of enemas, I have
got gotten to that point yet..lol

   I hope this helps to some degree. I know how the feeling is. I had to have
my esophygus dialted ,cause food was sticking and very bloated. If you have
any others question, please feel free to ask.



God Bless,

Valerie



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



From: Pichaske, Marie

Date: 02/24/06 21:43:55

To: MD-List@yahoogroups.com

Subject: [MD-List] Bloating



Hello All,

A friend of mine's 25 year old son has a gas problem. His stomach is
distended and he is uncomfortable. He takes miralax but still has trouble
moving his bowels.

Does anyone have any suggestions for him that I can pass along?

Thanks

Marie





SPONSORED LINKS Muscular dystrophy association







YAHOO! GROUPS LINKS



  Visit your group "MD-List" on the web.



  To unsubscribe from this group, send an email to:

  MD-List-unsubscribe@yahoogroups.com



  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

You can suggest some gas reliever, like gasx.

 

Adele

 

---

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Pichaske, Marie
Sent: Friday, February 24, 2006 5:37 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Bloating

 

Hello All,
A friend of mine's 25 year old son has a gas problem. His stomach is distended and he is uncomfortable. He takes miralax but still has trouble moving his bowels. 

Does anyone have any suggestions for him that I can pass along?

Thanks
Marie

 

Hello All,
A friend of mine's 25 year old son has a gas problem. His stomach is distended and he is uncomfortable. He takes miralax but still has trouble moving his bowels. 

Does anyone have any suggestions for him that I can pass along?

Thanks
Marie

I would think if the Ikea adjusts the insurance would pay for it as
long as it is not anymore expensive than the standard electric.
Actually it depends on your vendor.  Some companies give them good
discounts, so they prefer to purchase from the manufacturer who
gives them the best price.  Of course they charge the insurance
more.  But insurance has a scale they go by, and the vendor can only
get so much. You can check with your social worker to see if they
can find a group that would pay for a bed for you. Sometime these
groups like Moose Club etc. do that kind of stuff.
Arlene

-- In MD-List@yahoogroups.com, AV <raybug10@...> wrote:
>
> I don't know of any bed that insurance will pay for that adjusts,
except the standard semi-electric hospital bed.  IKEA has a bed that
is much less than the usual adjustable bed.  You buy the slatted
base and then a mattress.  I don't have one, and I therefore don't
know what they are really like but the price is not too bad.  If he
really has anxiety or refuses the hospital bed then maybe it is an
option though.  Here is the link:
http://www.ikea.com/webapp/wcs/stores/servlet/ProductDisplay?
topcategoryId=15558&catalogId=10103&storeId=12&productId=42682&langId
=-1&parentCats=15558*15615*16714
>
>   I would wonder if a hospital bed wouldn't be best in the long
haul since you can purchase (through insurance) specialized
mattresses such as low-loss air or alternating air mattress covers
to prevent or heal pressure sores.  My son is ok with his hospital
bed, especially since he fell out of bed as he sat up and leaned
sideways one morning and fell out onto the floor.  He broke his
femur from that!  He feels much safer having rails now.  Good luck
finding the solution for both of you.
>
>   Anneliese mom of Raymon 14
>
> Adele <jasona65@...> wrote:
>         v\:* {behavior:url(#default#VML);}  o\:* {behavior:url
(#default#VML);}  w\:* {behavior:url(#default#VML);}  .shape
{behavior:url(#default#VML);}        st1\:*{behavior:url
(#default#ieooui) }                Diana, Just explain to Vincent
that a hospital bed is similar to a craftmatic, but you can get the
hospital bed approved through insurance, while with a Craftmatic,
you'll have to pay for it totally.  I'm not sure if there is
anything alse out there that you could get a script for.  I do know
that there are different types of mattress that you can get a script
for, but you and Vincent really needs the benefits of a bed that
rises up and down and get sit the head up with.
>
>   Adele
>
>
> ---------------------------------
>
>   From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]
On Behalf Of mzmrize039@...
> Sent: Monday, February 20, 2006 8:45 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] "Hospital Beds"
>
>
>     Hello all,
>
>
>
>     My son has not slept in his bed for more than a week.  He said
he's tired of asking someone to help him up.  I suggested a hospital
bed, but he flatly refused.  I think he feels that he would be close
to dying if he were to sleep in a hospital bed because that is
exactly what happened to his grandmother at 53 and an aunt.  He did
say he would consider a Craftmatic bed.  Is there a bed out there
that is similar to this for which I could obtain a sript from his
doctor?
>
>
>
>     Thanks,
>
>     Diana, mom to Vincent, age 17
>
>
>
>
>   SPONSORED LINKS
>         Muscular dystrophy association
>
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>
>     Visit your group "MD-List" on the web.
>
>     To unsubscribe from this group, send an email to:
>  MD-List-unsubscribe@yahoogroups.com
>
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> ---------------------------------
>
>
>
>
>
>
> ---------------------------------
>
>  What are the most popular cars? Find out at Yahoo! Autos
>

But if you cannot reposition yourself then it can be a problem.  I
like the Geo also.  In our situation we like the Span america that
has the air tubes that move. I guess it depebnds on how you sleep,
side, back and if you can at least wiggle a little.
Arlene

--- In MD-List@yahoogroups.com, "Charles D. Rhodes"
<jedicharles@...> wrote:
>
> It depends on your situation and the type of bed.  I have a Span
America
> Geo-Matress Max which is a special foam matress that evenly
distributes
> pressure to prevent sores.  I use it with a fully
electric "hospital" bed
> which allows repositioning.  http://tinyurl.com/9vwfx/#geo_max
>
> > -----Original Message-----
> > From: MD-List@yahoogroups.com
> > [mailto:MD-List@yahoogroups.com] On Behalf Of pondnote2
> > Sent: Sunday, February 12, 2006 11:55 AM
> > To: MD-List@yahoogroups.com
> > Subject: [MD-List] Mattresses
> >
> >
> > What are the best mattresses to use?
>

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

From: curt4362

To: MD-List@yahoogroups.com

Sent: Wednesday, February 15, 2006 8:39 AM

Subject: [MD-List] welcome

This is a special invitation from someone who is disabled and in a wheelchair.  I've created a message board web site that gives you an opportunity to create your own blog and have a gallery of your own pictures.  The message board is a place for people with disabilities to come and share what has happened to them to cause them to be disabled and so much more.  We have created this place for people to interact with each other and to receive encouragement.  Please come and join us as we begin this new adventure with our online support group.  We think it will be a place where you'll come back too often.  The Web address is www.gloryinweakness.com and we want you to come and join us.  It is free to register for anyone who is disabled as well as family and friends of the disabled.  We look forward to hearing from you!

                                                                                                Curtis - C6 quadriplegic

                                                                                                www.gloryinweakness.com

http://www.invacare.com  click beds.
I think Sunrise has the Guardian, but the head will not go high enough
to be comfortable to sit in bed.  They do have mattress.
Arlene

I am in the process of ordering a fully elecric bed for Mike. The
one he has is probably 20 yrs old and were told it is not worth
repairing.  We would have liked the ones with wood headboard but
when checking we found the only one that will go to a 70 degree to
sit up without the need of a lot of pillows was Invacare. Some of
the beds will only go 60 degree which means if they want to watch TV
and sit up it keeps you more in a laying back position, not high
enough to sit comfortable.  We measure the height of the wheel chair
to be sure it is easy to slide him in from the chair, in the bed
must be a little lower than the chair.  To get him out the bed must
go higher than the chair. We had to take the wheels off the one we
have now to get it low enough.  We are going to get a Invacare low
boy then we can leave the wheels on.  You want the bed to raise for
the head and for the feet and also the whole bed go up and down.
Some do not go up and down.  Go to http://www.sunrisemedical.com and
other places to find what you like.  We are stuck with the Invacare
again because that one does what he needs. Also go to
http://www.Spanamerica.com to check mattresses.  Mike has a regular
mattress and at this point needs something with pulsating air
tubes.  Then you can check search as some vendors will show the
prices of the mattress.  If you can turn yourself in bed you can
always get a special mattress in a few years.  However a bed last a
long time get what you need.
If you get in bed with the wheelchair facing the bed (like Mike does)
make sure there is room for the foot plates to get under. Most beds
are 88 inches long, 36 inches wide, see if it will fit in the room.
Measure, measure, measure. I did find one company that had a shorter
bed, but if you look at it raised it had a wierd set up, so look
under the beds to see how much metal is there can get in the way.
The Invacare has plenty of room to put things under the bed.  The 4
legs just raise up, no mess under the bed, except one long bar from
back to front and the motor.
Arlene


--- In MD-List@yahoogroups.com, AV <raybug10@...> wrote:
>
> I don't know of any bed that insurance will pay for that adjusts,
except the standard semi-electric hospital bed.  IKEA has a bed that
is much less than the usual adjustable bed.  You buy the slatted
base and then a mattress.  I don't have one, and I therefore don't
know what they are really like but the price is not too bad.  If he
really has anxiety or refuses the hospital bed then maybe it is an
option though.  Here is the link:
http://www.ikea.com/webapp/wcs/stores/servlet/ProductDisplay?
topcategoryId=15558&catalogId=10103&storeId=12&productId=42682&langId
=-1&parentCats=15558*15615*16714
>
>   I would wonder if a hospital bed wouldn't be best in the long
haul since you can purchase (through insurance) specialized
mattresses such as low-loss air or alternating air mattress covers
to prevent or heal pressure sores.  My son is ok with his hospital
bed, especially since he fell out of bed as he sat up and leaned
sideways one morning and fell out onto the floor.  He broke his
femur from that!  He feels much safer having rails now.  Good luck
finding the solution for both of you.
>
>   Anneliese mom of Raymon 14
>
> Adele <jasona65@...> wrote:
>         v\:* {behavior:url(#default#VML);}  o\:* {behavior:url
(#default#VML);}  w\:* {behavior:url(#default#VML);}  .shape
{behavior:url(#default#VML);}        st1\:*{behavior:url
(#default#ieooui) }                Diana, Just explain to Vincent
that a hospital bed is similar to a craftmatic, but you can get the
hospital bed approved through insurance, while with a Craftmatic,
you'll have to pay for it totally.  I'm not sure if there is
anything alse out there that you could get a script for.  I do know
that there are different types of mattress that you can get a script
for, but you and Vincent really needs the benefits of a bed that
rises up and down and get sit the head up with.
>
>   Adele
>
>
> ---------------------------------
>
>   From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]
On Behalf Of mzmrize039@...
> Sent: Monday, February 20, 2006 8:45 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] "Hospital Beds"
>
>
>     Hello all,
>
>
>
>     My son has not slept in his bed for more than a week.  He said
he's tired of asking someone to help him up.  I suggested a hospital
bed, but he flatly refused.  I think he feels that he would be close
to dying if he were to sleep in a hospital bed because that is
exactly what happened to his grandmother at 53 and an aunt.  He did
say he would consider a Craftmatic bed.  Is there a bed out there
that is similar to this for which I could obtain a sript from his
doctor?
>
>
>
>     Thanks,
>
>     Diana, mom to Vincent, age 17
>
>
>
>
>   SPONSORED LINKS
>         Muscular dystrophy association
>
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>
>     Visit your group "MD-List" on the web.
>
>     To unsubscribe from this group, send an email to:
>  MD-List-unsubscribe@yahoogroups.com
>
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> ---------------------------------
>
>
>
>
>
>
> ---------------------------------
>
>  What are the most popular cars? Find out at Yahoo! Autos
>

Diana, Just explain to Vincent that a hospital bed is similar to a craftmatic, but you can get the hospital bed approved through insurance, while with a Craftmatic, you’ll have to pay for it totally.  I’m not sure if there is anything alse out there that you could get a script for.  I do know that there are different types of mattress that you can get a script for, but you and Vincent really needs the benefits of a bed that rises up and down and get sit the head up with.

 

Adele

 

---

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of mzmrize039@...
Sent: Monday, February 20, 2006 8:45 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] "Hospital Beds"

 

Hello all,

 

My son has not slept in his bed for more than a week.  He said he's tired of asking someone to help him up.  I suggested a hospital bed, but he flatly refused.  I think he feels that he would be close to dying if he were to sleep in a hospital bed because that is exactly what happened to his grandmother at 53 and an aunt.  He did say he would consider a Craftmatic bed.  Is there a bed out there that is similar to this for which I could obtain a sript from his doctor?

 

Thanks,

Diana, mom to Vincent, age 17

 

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