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#21384 From: John Herrmann <johnrsf@...>
Date: Wed Jul 2, 2008 1:45 am
Subject: New Blog Post 6/27
johnrancho
Offline Offline
Send Email Send Email
 
Check out my new blog post www.johnrsf.blogspot.com
 
Peace,
John
 
There is no cure for birth and death save to enjoy the interval.
--George Santayana(1863-1952)
 
My E-Mail: johnrsf@...
Yahoo IM:johnrsf@...
 
 
 

#21383 From: "Adele" <jasona65@...>
Date: Fri Jun 27, 2008 9:19 pm
Subject: FW: Pistorius gets more time to qualify for Games
navymom2josh
Online Now Online Now
Send Email Send Email
 

 

 


 

 

Updated: June 26, 2008, 12:10 PM ET

  •  

JOHANNESBURG, South Africa -- South African double- amputee sprinter Oscar Pistorius has been given extra time in his bid to qualify for the Beijing Olympics in August.

The Court of Arbitration for Sport ruled in May that Pistorius, who runs with carbon fiber blades, is entitled to compete against able-bodied runners in Beijing. Both of his legs were amputated below the knees at the age of 11 months.

Pistorius' manager, Peet van Zyl, said Thursday the South African athletics federation moved its deadline from July 11 to July 17.

Pistorius said Thursday he was confident he would appear in both the Olympics and the Paralympics.

"I had a meeting with Athletics South Africa and they were very accommodating and agreed to extend my cut-off date for qualifying to after my last Golden League race in Lucerne on July 16," he said.

The South African, the winner of the 200-meter gold and 100-meter bronze at the 2004 Athens Paralympics, needs to clock 45.55 seconds to qualify for the individual 400 meters in Beijing. His personal best stands at 46.33.

"My chances are a lot more realistic of going to the Olympics with the relay team. I know I'm among the top 400 meters runners in South Africa and they have to choose five or six people for the team," he said.

"Last year I finished second in the national championships and the guy who won is no longer running. I'm very close to being in the same shape now and only one South African has made the B-qualifying time for the 400 this year, so I would definitely say I'm in the top three."

Pistorius said he planned to run in Milan on July 2 and the Golden League events in Rome on July 11 and Lucerne five days later.

Information from Reuters and The Associated Press was used in this report.




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#21382 From: "Adele" <jasona65@...>
Date: Fri Jun 27, 2008 4:47 pm
Subject: RE: Re: Social Security Disability
navymom2josh
Online Now Online Now
Send Email Send Email
 

That’s not just in the bank, but in anything they consider an asset.  Life insurance policies, saving bonds, saving and checking accounts, are some of the top things they consider assets.

 

ADELE

 


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Greg Wilhelm
Sent: Friday, June 27, 2008 12:32 PM
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] Re: Social Security Disability

 

With SSI you can only have 2,000 in the bank.

 

Greg

 

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

Sent: Thursday, June 26, 2008 6:40 PM GREG

Subject: RE: [MD-List] Re: Social Security Disability

 

Matt was pre-approved in 1 week because I was told that if you bring with you medical records showing your child has DMD you can be pre-approved.  I was told by social security that there is a list of diagnosis that enables you to be pre-approved.  I made the appt about 4 weeks prior to Matt turning 18.  We went 1 day after his birthday.  I took his Bx results showing Duchene’s and his first office visit with the doctor verifying his diagnosis and then a letter from his current pediatrician stating the extent of his current disability.  It was really much easier than I ever expected.  One more thing if he has any bonds or saving accounts you will have to bring that information with you.  I was told he would have to have over $4,000 for it cause any issues.

Good Luck

Angelia Haynes

(Mom to Matt, 18 and now a GRADUATE!!)


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Adele
Sent: Tuesday, June 24, 2008 4:54 PM
To: MD-List@yahoogroups.com
Subject: RE: [MD-List] Re: Social Security Disability

Jason got his in about 6 weeks.

Adele

P.S.  I nag


size=2 width="100%" align=center tabIndex=-1>

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Tigger Greg
Sent: Tuesday, June 24, 2008 2:30 PM
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] Re: Social Security Disability

Takes 4 months to get SSI if it goes right the first time.

Greg

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

From: Heather

Sent: Tuesday, June 24, 2008 6:41 AM GREG

Subject: [MD-List] Re: Social Security Disability


Okay so I called up the SS office, and they basically told me to
ignore the letter and that my application for SSI is still pending and
will be for probably 4 months! Yuck.

--- In MD-List@yahoogroups.com, "Adele" <jasona65@...> wrote:
>
> Heather, Yes, that's correct, in order to SS you would of have to
worked
> for so many quarters. I'm not sure how long that is, but I would
guess at
> least 2 years. The only other way to get SS is to have a parent retire,
> then you would get benefits through them.
>
>
>
> Have you applies to SSI, Supplemental Security Income. This, you
just have
> to be disabled and have no more then about $2,000 in assets. If you
haven't
> applied, you go to the SS office and tell them you want SSI not SS.
>
>
>
> I'm not sure if all the States SSI programs come with it, but here in
> Maryland, there is a tuition waiver, at least for Community College, not
> sure about any other state school.
>
>
>
> Adele
>
>
>
> _____
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> Heather
> Sent: Monday, June 23, 2008 6:26 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Social Security Disability
>
>
>
> Alright, so. I've got a little situation and was wondering if
> anybody's been down the same path.
> I'm 19 years old- SMA 2/3. I just filed for Social Security Disability
> to help me pay for my college (I'm going off to a Uni in less than 6
> months). Of course they immediately sent a letter back saying I don't
> qualify due to not having "enough Social Security Credits". Apparently
> I'm supposed to have worked and gotten credits. Except the fact that I
> am a student devoted to work, have no transportation to/from any job,
> and have a limited amount of work I can actually do. So no, I didn't
work.
>
> I know there must be somebody who hasn't worked a day in their lives
> who gets SS payments. I only have $408 to my name! So I'm going to
> appeal their decision, but I don't really know what I'm doing..
>
> I'm still young! New at this, you know? So if anyone could help,
> please oh please let me know your situation, etc.. Thank you! - Heather
>
>
>
>
> _____
>
> I am using the free version of SPAMfighter for private users.
> It has removed 422 spam emails to date.
> Paying users do not have this message in their emails.
> Try SPAMfighter <http://www.spamfighter.com/len> for free now!
>


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Paying users do not have this message in their emails.
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#21381 From: "Greg Wilhelm" <greg1960@...>
Date: Fri Jun 27, 2008 4:32 pm
Subject: Re: Re: Social Security Disability
tiggers2000us
Offline Offline
Send Email Send Email
 
With SSI you can only have 2,000 in the bank.
 
Greg
 
----- Original Message -----
Sent: Thursday, June 26, 2008 6:40 PM GREG
Subject: RE: [MD-List] Re: Social Security Disability

Matt was pre-approved in 1 week because I was told that if you bring with you medical records showing your child has DMD you can be pre-approved.  I was told by social security that there is a list of diagnosis that enables you to be pre-approved.  I made the appt about 4 weeks prior to Matt turning 18.  We went 1 day after his birthday.  I took his Bx results showing Duchene’s and his first office visit with the doctor verifying his diagnosis and then a letter from his current pediatrician stating the extent of his current disability.  It was really much easier than I ever expected.  One more thing if he has any bonds or saving accounts you will have to bring that information with you.  I was told he would have to have over $4,000 for it cause any issues.

Good Luck

Angelia Haynes

(Mom to Matt, 18 and now a GRADUATE!!)


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Adele
Sent: Tuesday, June 24, 2008 4:54 PM
To: MD-List@yahoogroups.com
Subject: RE: [MD-List] Re: Social Security Disability

Jason got his in about 6 weeks.

Adele

P.S.  I nag


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Tigger Greg
Sent: Tuesday, June 24, 2008 2:30 PM
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] Re: Social Security Disability

Takes 4 months to get SSI if it goes right the first time.

Greg

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

From: Heather

Sent: Tuesday, June 24, 2008 6:41 AM GREG

Subject: [MD-List] Re: Social Security Disability


Okay so I called up the SS office, and they basically told me to
ignore the letter and that my application for SSI is still pending and
will be for probably 4 months! Yuck.

--- In MD-List@yahoogroups.com, "Adele" <jasona65@...> wrote:
>
> Heather, Yes, that's correct, in order to SS you would of have to
worked
> for so many quarters. I'm not sure how long that is, but I would
guess at
> least 2 years. The only other way to get SS is to have a parent retire,
> then you would get benefits through them.
>
>
>
> Have you applies to SSI, Supplemental Security Income. This, you
just have
> to be disabled and have no more then about $2,000 in assets. If you
haven't
> applied, you go to the SS office and tell them you want SSI not SS.
>
>
>
> I'm not sure if all the States SSI programs come with it, but here in
> Maryland, there is a tuition waiver, at least for Community College, not
> sure about any other state school.
>
>
>
> Adele
>
>
>
> _____
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> Heather
> Sent: Monday, June 23, 2008 6:26 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Social Security Disability
>
>
>
> Alright, so. I've got a little situation and was wondering if
> anybody's been down the same path.
> I'm 19 years old- SMA 2/3. I just filed for Social Security Disability
> to help me pay for my college (I'm going off to a Uni in less than 6
> months). Of course they immediately sent a letter back saying I don't
> qualify due to not having "enough Social Security Credits". Apparently
> I'm supposed to have worked and gotten credits. Except the fact that I
> am a student devoted to work, have no transportation to/from any job,
> and have a limited amount of work I can actually do. So no, I didn't
work.
>
> I know there must be somebody who hasn't worked a day in their lives
> who gets SS payments. I only have $408 to my name! So I'm going to
> appeal their decision, but I don't really know what I'm doing..
>
> I'm still young! New at this, you know? So if anyone could help,
> please oh please let me know your situation, etc.. Thank you! - Heather
>
>
>
>
> _____
>
> I am using the free version of SPAMfighter for private users.
> It has removed 422 spam emails to date.
> Paying users do not have this message in their emails.
> Try SPAMfighter <http://www.spamfighter.com/len> for free now!
>


size=2 width="100%" align=center>


No virus found in this incoming message.
Checked by AVG.
Version: 8.0.101 / Virus Database: 270.4.1/1516 - Release Date: 6/24/2008 7:53 AM


I am using the free version of SPAMfighter for private users.
It has removed 423 spam emails to date.
Paying users do not have this message in their emails.
Try SPAMfighter for free now!



No virus found in this incoming message.
Checked by AVG.
Version: 8.0.101 / Virus Database: 270.4.1/1522 - Release Date: 6/27/2008 8:27 AM

#21380 From: Brenda <BracinKnee@...>
Date: Fri Jun 27, 2008 1:44 am
Subject: MJ Update: Urgent Care, OI, Pain, & Friends
bshanson68
Offline Offline
Send Email Send Email
 
A new update was posted on my website, since it was very long.  There are pictures, my trip to Urgent Care and my last week!  Please visit my website at

http://www.caringbridge.org/ny/mjpurk

MJ


http://www.our-sma-angels.com/Margaret/ - MJ's website
http://www.our-sma-angels.com/b4sma - MJ's organization

"Far away in the sunshine are my highest aspirations.
I may not reach them, but I can look up and see their beauty,
believe in them, and try to follow where they lead."
~Louisa May Alcott~

#21379 From: "Angelia Haynes" <angelia@...>
Date: Fri Jun 27, 2008 1:40 am
Subject: RE: Re: Social Security Disability
haynesra
Offline Offline
Send Email Send Email
 

 

Matt was pre-approved in 1 week because I was told that if you bring with you medical records showing your child has DMD you can be pre-approved.  I was told by social security that there is a list of diagnosis that enables you to be pre-approved.  I made the appt about 4 weeks prior to Matt turning 18.  We went 1 day after his birthday.  I took his Bx results showing Duchene’s and his first office visit with the doctor verifying his diagnosis and then a letter from his current pediatrician stating the extent of his current disability.  It was really much easier than I ever expected.  One more thing if he has any bonds or saving accounts you will have to bring that information with you.  I was told he would have to have over $4,000 for it cause any issues.

 

Good Luck

Angelia Haynes

(Mom to Matt, 18 and now a GRADUATE!!)


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Adele
Sent: Tuesday, June 24, 2008 4:54 PM
To: MD-List@yahoogroups.com
Subject: RE: [MD-List] Re: Social Security Disability

 

Jason got his in about 6 weeks.

 

Adele

 

P.S.  I nag

 


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Tigger Greg
Sent: Tuesday, June 24, 2008 2:30 PM
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] Re: Social Security Disability

 

Takes 4 months to get SSI if it goes right the first time.

Greg

 

 

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

From: Heather

Sent: Tuesday, June 24, 2008 6:41 AM GREG

Subject: [MD-List] Re: Social Security Disability

 


Okay so I called up the SS office, and they basically told me to
ignore the letter and that my application for SSI is still pending and
will be for probably 4 months! Yuck.

--- In MD-List@yahoogroups.com, "Adele" <jasona65@...> wrote:
>
> Heather, Yes, that's correct, in order to SS you would of have to
worked
> for so many quarters. I'm not sure how long that is, but I would
guess at
> least 2 years. The only other way to get SS is to have a parent retire,
> then you would get benefits through them.
>
>
>
> Have you applies to SSI, Supplemental Security Income. This, you
just have
> to be disabled and have no more then about $2,000 in assets. If you
haven't
> applied, you go to the SS office and tell them you want SSI not SS.
>
>
>
> I'm not sure if all the States SSI programs come with it, but here in
> Maryland, there is a tuition waiver, at least for Community College, not
> sure about any other state school.
>
>
>
> Adele
>
>
>
> _____
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> Heather
> Sent: Monday, June 23, 2008 6:26 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Social Security Disability
>
>
>
> Alright, so. I've got a little situation and was wondering if
> anybody's been down the same path.
> I'm 19 years old- SMA 2/3. I just filed for Social Security Disability
> to help me pay for my college (I'm going off to a Uni in less than 6
> months). Of course they immediately sent a letter back saying I don't
> qualify due to not having "enough Social Security Credits". Apparently
> I'm supposed to have worked and gotten credits. Except the fact that I
> am a student devoted to work, have no transportation to/from any job,
> and have a limited amount of work I can actually do. So no, I didn't
work.
>
> I know there must be somebody who hasn't worked a day in their lives
> who gets SS payments. I only have $408 to my name! So I'm going to
> appeal their decision, but I don't really know what I'm doing..
>
> I'm still young! New at this, you know? So if anyone could help,
> please oh please let me know your situation, etc.. Thank you! - Heather
>
>
>
>
> _____
>
> I am using the free version of SPAMfighter for private users.
> It has removed 422 spam emails to date.
> Paying users do not have this message in their emails.
> Try SPAMfighter <http://www.spamfighter.com/len> for free now!
>


size=2 width="100%" align=center>


No virus found in this incoming message.
Checked by AVG.
Version: 8.0.101 / Virus Database: 270.4.1/1516 - Release Date: 6/24/2008 7:53 AM

 


I am using the free version of SPAMfighter for private users.
It has removed 423 spam emails to date.
Paying users do not have this message in their emails.
Try SPAMfighter for free now!


#21378 From: "Angelia Haynes" <angelia@...>
Date: Fri Jun 27, 2008 1:31 am
Subject: RE: Re: spinal surgery
haynesra
Offline Offline
Send Email Send Email
 

My son Matt also has DMD and had his surgery at 14.  His curvature was at 25 to 30 and he did great.  The only problem we had was that he did not want to wake up easily after surgery, so we were in ICU for 1 week until he woke up enough to carry on a conversation.  They only reason that they could come up with that this happen is that he is on OCD medication and they thought it might have been withdrawal.  WHO KNOWS!

When he did wake up he refused medications and got right up into his chair.  Matt had 4 units of blood during surgery and 1 after.  He went back to school 4 weeks after surgery.  Because Matt curvature was minor his height changed very little and there was no effect in ability to get in or out of the van.

 

Angelia Haynes

(Mom to Matt age 18 **WHO IS NOW A GRADUATE**!!)

 


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of mzmrize039@...
Sent: Tuesday, June 24, 2008 11:42 PM
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] Re: spinal surgery

 

Another thing that I was made aware of was the fact that my son's face would swell quite a bit after surgery.  His face looked almost like a pumpkin.  It took a few days for the swelling to go down.  He was kept quite sedated the first couple of days to make sure he didn't move much too.  He wanted to be in his chair as soon as possible.  They gave him two doses of morphine, but it lowered his respiratory rate too low, so he refused it from that point forward and managed the pain quite well on his own.  I could barely tell that Vincent had the surgery.  His scar was truly amazing.  It looked as though they glued it together.  I asked the doctor how he made it look so amazing.  He laughingly said, "If I tell you that, I would have to kill you."  Dr. Mackenzie at A.I. duPont hospital in Delaware is absolutely amazing.  He has done this surgery so many times and has had tremendous results each and every time.  I would recommend him highly to anyone.  Vincent was in the hospital for about a week total.  When we were discharged, it was raining.  Where he had "grown" from the surgery, we had difficulty getting him into our van.  We had to take his headrest off, and he had to lean over which wasn't really easy after just having this surgery, but we managed.

 

Good luck to you,

Diana, Mom to Vincent, age 19, with Duchenne muscular dystropy

 

In a message dated 6/23/2008 4:00:12 P.M. Eastern Daylight Time, cmedvescek@mdausa.org writes:

Hi Debbie,

FYI, MDA's Quest magazine ran an article about spinal surgery that
featured Adele and Jason. It can be seen at this link:

http://www.mda.org/publications/quest/q94ahead.html

Best of luck! Chris Medvescek, Quest editor

--- In MD-List@yahoogroups.com, "Adele" <jasona65@...> wrote:
>
> Debbie, Where are you guys?
>
>
>
> Jason had his at age 17, 6 years ago. If all goes great, he is
going to be
> in a lot of pain, but they will keep him pretty under for the
first 48-72
> hours. After that, they use great drugs to handle the pain. I
have been
> told that this is a very bloody surgery. Jason went through like
18 units
> of blood during surgery and another 4-5 post surgery. If family
members are
> same blood type, I would see about banking as many units as
possible. Have
> the doctors talked in length about the surgery yet? Your son is
going to
> need some rehab afterwards. He's going to need to learn w\how to
do many of
> the things he does now, like self feed. IF you have time, I would
tape
> record all the different things he can do now, so this way, you
won't have
> the P/T and O/T doubt that he could do all the things you say he
could. If
> he doesn't have it already, he need the tilt n'space feature for
his
> powerchair. This will help with pressure release. He might also
need a new
> type of seat cushion for his chair.
>
>
>
> IF you have a van already and it doesn't have either a lowered
floor or a
> raise roof with raised doors, you will need that in order to drive
him home.
> Jason "grew" about 4 inches after surgery, about 2 inch was
directly from
> surgery the other 2 inch was the added tilt n'space feature on a
power
> chair.
>
>
>
> That's all I can think of right off the top of my head. Any more
questions,
> I'll be happy to answer.
>
>
>
> Adele
>
>
>
> _____
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> MurrayD4@...
> Sent: Monday, June 23, 2008 2:13 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] spinal surgery
>
>
>
> My son, 15 with dmd is having spinal surgery. I was just looking
for some
> advice on the surgery, the pain after and what to expect for after
surgery.
>
>
>
> thank you
>
>
>
> debbie
>
>
>
>
>
> _____
>
> Gas prices getting you down? Search AOL Autos for fuel-efficient
used cars
> <http://autos.aol.com/used?ncid=aolaut00050000000007> .
>
>
>
>
> _____
>
> I am using the free version of SPAMfighter for private users.
> It has removed 422 spam emails to date.
> Paying users do not have this message in their emails.
> Try SPAMfighter <http://www.spamfighter.com/len> for free now!
>




Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.


#21377 From: Vikki Stefans <vstefans@...>
Date: Thu Jun 26, 2008 11:13 pm
Subject: Re: Re: Survey for school project
vstefans
Offline Offline
Send Email Send Email
 
I really like these answers - the last one though I would amplify and say
that some segregation happens because people are afraid to "mix it up" as
teenagers or on breaks in the workplace..there is a program by Teaching
Tolerance (tolerance.org) called mix it up at lunch, and other resources
you and your teacher would really like. I'm one of those ones who deleted
the requests because they looked like spam and there were a group of them,
sorry!...

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, 21 Jun 2008, Andrew VanBelkum wrote:

> --- In MD-List@yahoogroups.com, "Charles Rhodes" <jedicharles@...>
> wrote:
>
> Dear Members,
>
> If you have time, please consider replying to Sumit's survey. He is
> 12 years old with DMD and needs this for a project for school. He
> didn't mean to post this without explanation and he simply panicked
> when he posted the several replies.
>
> Charles,
> MD-List Moderator
>
> Sumit Mehta
> Period 4
> Mrs. Silverstein
> Social Studies
>
> 1.) Do you think people are more racist today then they were fifty
> years ago? Yes or No, Please explain.
>
> No, I think, overall, most people have become more accepting of
> people from other races.
>
> 2.) Do you think African Americans have equal rights? Yes or No,
> Please explain.
>
> Yes, I think they do have equal rights. All Americans have the same
> rights.
>
> 3.) Do you think people are prejudice today? Yes or No, Please
> explain.
>
> Yes, I do think people are prejudice today but, I don't think it
> only applies to race. It applies to everything in life. From the
> things we like to eat to the products we buy. To a certain degree,
> that is what makes America so great. We are all different.
>
> 4.) Do you think segregation still exists today? Yes or No, Please
> explain.
>
> Yes, I do think segregation still exists today but, I don't think
> most of it is by choice. Location has a lot to do with it. Sadly, if
> you had to pick a day of the week, Sunday is the most segregated day
> of the week.
>
> Signature: Andrew VanBelkum
>
>

#21376 From: Vikki Stefans <vstefans@...>
Date: Thu Jun 26, 2008 11:08 pm
Subject: Re: My daughter is going to be tested for MD
vstefans
Offline Offline
Send Email Send Email
 
There are a lot of differnet conditions, some neuromuscular, that can
cause this, not all are "muscular dystrophy" though. A good neurologist
should probalby be your first stop, or maybe a rehab doc like me who KNOWS
a good neurologist at least. Let us know how things turn out, OK?

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 Wed, 25 Jun 2008, Sarah wrote:

> I'm a little freaked out and just need some supportive advice.  I
> took her to her pediatrician last week for a fever/ear infection.
> The doc says she would like to refer us to St. Louis Children's
> Hospital for a muscle biopsy to test for MD, since my daughter (17
> months) has significant issues with muscle tone in her legs and
> mobility problems.  She uses AFO's and a pediatric walker and sees
> two physical therapists.  For several months now we have just been
> told she is "hypermobile" and has low muscle tone...that is why she
> can't balance enough to walk yet and has issues with standing,
> etc...  We have never heard anyone mention MD until now...and I
> didn't know enough to ask about the possibility.  So I'm a little
> thrown off, doing a lot of research online which is just scary in
> itself.  So we're going to make the 3 hour drive to the children's
> hospital to find out either way.  I need to stop wondering and
> speculating about it.  It's been all I can think about since the
> doctor mentioned it last week.  I find myself looking at my daughter
> and thinking "hmmm...maybe she does have this syptom ot that
> symptom".
>
> Anyway, I just hope I"m doing the right thing and wonder if anyone
> else has a similar experience so I don't feel so on my own right
> now.  Thanks
>
>

#21375 From: Jeff <jeff@...>
Date: Thu Jun 26, 2008 2:46 am
Subject: How about a wheelchair that is also an exam table? | ZDNet Healthcare | ZDNet.com
tracksterdude
Offline Offline
Send Email Send Email
 
#21374 From: GABRIELA CASTRO <nuncastro@...>
Date: Thu Jun 26, 2008 1:00 am
Subject: Re: new member
gabby293
Offline Offline
Send Email Send Email
 
Welcome Tamera,
  My name is Gabby and my son is 14 with DMD and my nephew also has DMD and he is 13. We live in Arlington TX. There  at camp right now for a week. and yes I havve to brag that I have been able to sleep with out waking up every 3 hours to check on my son. I hope to talk to you.

TAMARA TWITCHELL <rocknrollmama83@...> wrote:
My name is Tamara. I have a 2 year old son, Gabriel, that may have dmd and I joined this group to talk to others about the condition!


#21373 From: "Greg Wilhelm" <greg1960@...>
Date: Wed Jun 25, 2008 10:49 pm
Subject: Re: Very concerned mother!
tiggers2000us
Offline Offline
Send Email Send Email
 
The cpk level of 19,000 sure looks like DMD, the highest any of our family with Beckers is 2,900 and my last one as 900 when i was in ER last. My sister who is a RN at the ER is always testing us to see where our levels are at.
 
Greg
 
----- Original Message -----
From: Adele
Sent: Wednesday, June 25, 2008 3:18 PM GREG
Subject: RE: [MD-List] Very concerned mother!

Hi, I’m Adele and my son, Jason has DMD.  With the symptoms and test results you have described,  It is unfortunate, but more than likely it is either DMD, or Becker’s which is usually a more milder form of DMD.  Too bad they put him through the liver biopsy.

Adele


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of rocknrollmama83
Sent: Tuesday, June 24, 2008 9:33 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Very concerned mother!

I have a 2 year old son who, in October, was admitted into the
hospital for bronchiolitis. The doctor discovered that his liver
enzymes were elevated 10 times normal range. His doctor referred him
to a gastrointerologist who did an ultrasound, a biopsy, and amny
bloodtests and found a perfectly healthy liver. The last bloodtest he
did was a cpk test that read that his cpk level was 19,000. His calves
are also fairly big. He was sent to a neurologist who sent him for a
DNA test but we haven't gotten the results. Could it be something else
or is it Duchenne Muscular Dystrophy? I would like to hear your
opinion!



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#21372 From: TAMARA TWITCHELL <rocknrollmama83@...>
Date: Wed Jun 25, 2008 10:31 pm
Subject: RE: new member
rocknrollmama83
Offline Offline
Send Email Send Email
 
Thank you so much! I am happy to have joined this group!

65@...> wrote:
From: Adele <jasona65@...>
Subject: RE: [MD-List] new member
To: MD-List@yahoogroups.com
Date: Wednesday, June 25, 2008, 5:24 PM

Welcome Tamara.  I˘m Adele and my son, Jason is now 23.  We live in Maryland .

 

Adele

 


From: MD-List@yahoogroups .com [mailto: MD-List@yahoogroups .com ] On Behalf Of TAMARA TWITCHELL
Sent: Tuesday, June 24, 2008 9:55 PM
To: md-list@YahooGroups .com
Subject: [MD-List] new member

 

My name is Tamara. I have a 2 year old son, Gabriel, that may have dmd and I joined this group to talk to others about the condition!

 



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#21371 From: "Adele" <jasona65@...>
Date: Wed Jun 25, 2008 10:24 pm
Subject: RE: new member
navymom2josh
Online Now Online Now
Send Email Send Email
 

Welcome Tamara.  I’m Adele and my son, Jason is now 23.  We live in Maryland.

 

Adele

 


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of TAMARA TWITCHELL
Sent: Tuesday, June 24, 2008 9:55 PM
To: md-list@YahooGroups.com
Subject: [MD-List] new member

 

My name is Tamara. I have a 2 year old son, Gabriel, that may have dmd and I joined this group to talk to others about the condition!

 



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#21370 From: "Adele" <jasona65@...>
Date: Wed Jun 25, 2008 10:23 pm
Subject: RE: My daughter is going to be tested for MD
navymom2josh
Online Now Online Now
Send Email Send Email
 

Sarah.  NEVER doubt yourself. 

 

Though I am a bit surprised that no one before has looking into your daughters condition as possibility a muscular dystrophy.  There are plenty of different things that could cause your daughter symptoms, but an MD is the more likely.

 

Go to the doctors, and see what they have to say.  Good luck.

 

Adele

 


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Sarah
Sent: Wednesday, June 25, 2008 1:57 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] My daughter is going to be tested for MD

 

I'm a little freaked out and just need some supportive advice. I
took her to her pediatrician last week for a fever/ear infection.
The doc says she would like to refer us to St. Louis Children's
Hospital for a muscle biopsy to test for MD, since my daughter (17
months) has significant issues with muscle tone in her legs and
mobility problems. She uses AFO's and a pediatric walker and sees
two physical therapists. For several months now we have just been
told she is "hypermobile" and has low muscle tone...that is why she
can't balance enough to walk yet and has issues with standing,
etc... We have never heard anyone mention MD until now...and I
didn't know enough to ask about the possibility. So I'm a little
thrown off, doing a lot of research online which is just scary in
itself. So we're going to make the 3 hour drive to the children's
hospital to find out either way. I need to stop wondering and
speculating about it. It's been all I can think about since the
doctor mentioned it last week. I find myself looking at my daughter
and thinking "hmmm...maybe she does have this syptom ot that
symptom".

Anyway, I just hope I"m doing the right thing and wonder if anyone
else has a similar experience so I don't feel so on my own right
now. Thanks



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#21369 From: "Adele" <jasona65@...>
Date: Wed Jun 25, 2008 10:18 pm
Subject: RE: Very concerned mother!
navymom2josh
Online Now Online Now
Send Email Send Email
 

Hi, I’m Adele and my son, Jason has DMD.  With the symptoms and test results you have described,  It is unfortunate, but more than likely it is either DMD, or Becker’s which is usually a more milder form of DMD.  Too bad they put him through the liver biopsy.

 

Adele

 


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of rocknrollmama83
Sent: Tuesday, June 24, 2008 9:33 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Very concerned mother!

 

I have a 2 year old son who, in October, was admitted into the
hospital for bronchiolitis. The doctor discovered that his liver
enzymes were elevated 10 times normal range. His doctor referred him
to a gastrointerologist who did an ultrasound, a biopsy, and amny
bloodtests and found a perfectly healthy liver. The last bloodtest he
did was a cpk test that read that his cpk level was 19,000. His calves
are also fairly big. He was sent to a neurologist who sent him for a
DNA test but we haven't gotten the results. Could it be something else
or is it Duchenne Muscular Dystrophy? I would like to hear your
opinion!



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#21368 From: "Greg Wilhelm" <greg1960@...>
Date: Wed Jun 25, 2008 9:57 pm
Subject: Re: My daughter is going to be tested for MD
tiggers2000us
Offline Offline
Send Email Send Email
 
Very well said. Most of my friend who have young sons with DMD have very happy and out going kids over all. I did not get slowed down by my beckers until after age 9 and never let it get me down or slow me down and wish we had know what i had early so i could have gone to MDA camp.
 
Greg
 
----- Original Message -----
From: Susan
Sent: Wednesday, June 25, 2008 2:53 PM GREG
Subject: Re: [MD-List] My daughter is going to be tested for MD

Hi Sarah,
My son is 10 & was diagnosed when he was 2 with a type of congenital muscular dystrophy.  I thought before the diagnosis that it was something he would grow out of & that he would just get stronger.   He walked from age 2.5 - 6 & has used a walker, a scooter & now a wheelchair.   I went through a huge grieving process & for a long time could only see what we lost.  Now that I'm past that (& it took me years to be honest), I can see all that we've gained.  My son is a very happy & well adjusted kid who plays wheelchair floor hockey, goes to the MDA camp every year, does well in school & makes friends easily. 
 
Just take it day by day.  I know it's hard not to worry about the future but don't miss out on enjoying your 17 month old!  It goes so quickly.  For me, I wish I had taken more notes about our journey (keeping a better medical notebook for doctor's visits) but for a while there, I didn't realize we were on one. 
 
Good luck.
Susan
 
----- Original Message -----
From: Sarah
Sent: Wednesday, June 25, 2008 1:57 PM
Subject: [MD-List] My daughter is going to be tested for MD

I'm a little freaked out and just need some supportive advice. I
took her to her pediatrician last week for a fever/ear infection.
The doc says she would like to refer us to St. Louis Children's
Hospital for a muscle biopsy to test for MD, since my daughter (17
months) has significant issues with muscle tone in her legs and
mobility problems. She uses AFO's and a pediatric walker and sees
two physical therapists. For several months now we have just been
told she is "hypermobile" and has low muscle tone...that is why she
can't balance enough to walk yet and has issues with standing,
etc... We have never heard anyone mention MD until now...and I
didn't know enough to ask about the possibility. So I'm a little
thrown off, doing a lot of research online which is just scary in
itself. So we're going to make the 3 hour drive to the children's
hospital to find out either way. I need to stop wondering and
speculating about it. It's been all I can think about since the
doctor mentioned it last week. I find myself looking at my daughter
and thinking "hmmm...maybe she does have this syptom ot that
symptom".

Anyway, I just hope I"m doing the right thing and wonder if anyone
else has a similar experience so I don't feel so on my own right
now. Thanks



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Checked by AVG.
Version: 8.0.101 / Virus Database: 270.4.1/1518 - Release Date: 6/25/2008 9:46 AM

#21367 From: "Susan" <leemillers@...>
Date: Wed Jun 25, 2008 9:53 pm
Subject: Re: My daughter is going to be tested for MD
sleemiller1
Offline Offline
Send Email Send Email
 
Hi Sarah,
My son is 10 & was diagnosed when he was 2 with a type of congenital muscular dystrophy.  I thought before the diagnosis that it was something he would grow out of & that he would just get stronger.   He walked from age 2.5 - 6 & has used a walker, a scooter & now a wheelchair.   I went through a huge grieving process & for a long time could only see what we lost.  Now that I'm past that (& it took me years to be honest), I can see all that we've gained.  My son is a very happy & well adjusted kid who plays wheelchair floor hockey, goes to the MDA camp every year, does well in school & makes friends easily. 
 
Just take it day by day.  I know it's hard not to worry about the future but don't miss out on enjoying your 17 month old!  It goes so quickly.  For me, I wish I had taken more notes about our journey (keeping a better medical notebook for doctor's visits) but for a while there, I didn't realize we were on one. 
 
Good luck.
Susan
 
----- Original Message -----
From: Sarah
Sent: Wednesday, June 25, 2008 1:57 PM
Subject: [MD-List] My daughter is going to be tested for MD

I'm a little freaked out and just need some supportive advice. I
took her to her pediatrician last week for a fever/ear infection.
The doc says she would like to refer us to St. Louis Children's
Hospital for a muscle biopsy to test for MD, since my daughter (17
months) has significant issues with muscle tone in her legs and
mobility problems. She uses AFO's and a pediatric walker and sees
two physical therapists. For several months now we have just been
told she is "hypermobile" and has low muscle tone...that is why she
can't balance enough to walk yet and has issues with standing,
etc... We have never heard anyone mention MD until now...and I
didn't know enough to ask about the possibility. So I'm a little
thrown off, doing a lot of research online which is just scary in
itself. So we're going to make the 3 hour drive to the children's
hospital to find out either way. I need to stop wondering and
speculating about it. It's been all I can think about since the
doctor mentioned it last week. I find myself looking at my daughter
and thinking "hmmm...maybe she does have this syptom ot that
symptom".

Anyway, I just hope I"m doing the right thing and wonder if anyone
else has a similar experience so I don't feel so on my own right
now. Thanks


#21366 From: "Greg Wilhelm" <greg1960@...>
Date: Wed Jun 25, 2008 9:38 pm
Subject: Re: Very concerned mother!
tiggers2000us
Offline Offline
Send Email Send Email
 
You will get a lot more infor. when the DMD mom's see your post and email back.
 
Greg
 
----- Original Message -----
Sent: Wednesday, June 25, 2008 2:15 PM GREG
Subject: Re: [MD-List] Very concerned mother!

Thanks for your reply!

--- On Wed, 6/25/08, Greg Wilhelm <greg1960@verizon.net> wrote:
From: Greg Wilhelm <greg1960@verizon.net>
Subject: Re: [MD-List] Very concerned mother!
To: MD-List@yahoogroups.com
Date: Wednesday, June 25, 2008, 4:11 PM

Sounds like DMD for sure. :(
 
Greg
 
----- Original Message -----
Sent: Tuesday, June 24, 2008 6:33 PM GREG
Subject: [MD-List] Very concerned mother!

I have a 2 year old son who, in October, was admitted into the
hospital for bronchiolitis. The doctor discovered that his liver
enzymes were elevated 10 times normal range. His doctor referred him
to a gastrointerologist who did an ultrasound, a biopsy, and amny
bloodtests and found a perfectly healthy liver. The last bloodtest he
did was a cpk test that read that his cpk level was 19,000. His calves
are also fairly big. He was sent to a neurologist who sent him for a
DNA test but we haven't gotten the results. Could it be something else
or is it Duchenne Muscular Dystrophy? I would like to hear your
opinion!



No virus found in this incoming message.
Checked by AVG.
Version: 8.0.101 / Virus Database: 270.4.1/1518 - Release Date: 6/25/2008 9:46 AM



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Checked by AVG.
Version: 8.0.101 / Virus Database: 270.4.1/1518 - Release Date: 6/25/2008 9:46 AM

#21365 From: "Terri" <momdmd@...>
Date: Wed Jun 25, 2008 9:24 pm
Subject: Re: [SPAM] Nice bed!!!!!!!/Stacy
imblueangel
Offline Offline
Send Email Send Email
 
We had no way of knowing who was asking these questions, it didn't have his name and he didnt change the topic of the email. I may have sent him an email privately to help him but I was busy and didn't check my email so it was too late when I got it. Then I noticed that he became rude, demanding us to help him blaming us because his homework was going to be late or incomplete. I am not sure it is a topic everyone is comfortable discussing plus it is not related to MD which is what this group is mainly for. Plus not eveyone on the list is american. They may not be able to answer these questions. Lastly, I am sure that his teacher did not intend for him to come here for help. He was probably supposed to be asking friends, family and others these questions. I know that right now you are upset because you feel your son was treated unfairly but it is unfair for you to be angry with us when we did not or could not respond. I am surprised you defended him instead of explaining that this is not the place to do his homework unless it is related to his health and that it takes time for us to respond.
 
Terri mom of Nathan 20, DMD, ADD Christian 11, DMD, ADHD Alex 16, DMD   (3/29/91-4/2/07)
DMD = Duchenne Muscular Dystrophy
"The clock of life is wound but once, and no man has the power to tell just when the hands will stop... At late or early hour..  Now is the only time you own...
Live, love, toil with a will... Place no faith in time, for the clock may soon be still. ";
----- Original Message -----
Sent: Monday, June 16, 2008 7:23 PM
Subject: Re: [SPAM][MD-List] Nice bed!!!!!!!/Stacy

My son has DMD and he was just asking you to answer a survey for his project!
----- Original Message -----
Sent: Monday, June 16, 2008 3:03 AM
Subject: Re: [SPAM][MD-List] Nice bed!!!!!!!/Stacy

Subject line NICE BED!!! 

--- On Sun, 6/15/08, Tushar Mehta <sumitb@optonline.net> wrote:
From: Tushar Mehta <sumitb@optonline.net>
Subject: Re: [SPAM][MD-List] Nice bed!!!!!!!/Stacy
To: MD-List@yahoogroups.com
Date: Sunday, June 15, 2008, 12:23 PM

Why did you not answer them?
Answer them!!!!!!!! !!!!!!!!! !!!!!!!!! !!!!!!!!! !!!!!!!!
----- Original Message -----
Sent: Sunday, June 15, 2008 12:19 PM
Subject: Re: [SPAM][MD-List] Nice bed!!!!!!!/Stacy

Answer Them!! Thanks!

 

1.)     Do you think people are more racist today then they were fifty years ago? 

Yes or No, Please explain.

2.)    Do you think African Americans have equal rights?

Yes or No, Please explain.

3.)    Do you think people are prejudice today?

Yes or No, Please explain.

4.)    Do you think segregation still exists today?

Yes or No, Please explain.

Signature:

----- Original Message -----
From: Terri
Sent: Monday, June 02, 2008 8:07 PM
Subject: Re: [SPAM][MD-List] Nice bed!!!!!!!/Stacy

Yea, I forgot to mention that Alex in the last year before he died had a rod, ostomy and was on a vent.
Terri mom of Nathan 20, DMD, ADD Christian 11, DMD, ADHD Alex 16, DMD   (3/29/91-4/2/ 07)
DMD = Duchenne Muscular Dystrophy
"The clock of life is wound but once, and no man has the power to tell just when the hands will stop... At late or early hour..  Now is the only time you own...
Live, love, toil with a will... Place no faith in time, for the clock may soon be still. ";
----- Original Message -----
From: Stacey
Sent: Sunday, June 01, 2008 1:44 PM
Subject: Re: [SPAM][MD-List] Nice bed!!!!!!!/Stacy

Hi! I have SMA 2. It really sucks, I have rods in my back... Medicaid does'nt cover crap.. I've been waiting, 1 year for w/c repairs for my power chair...... I have a mattress just for bed sores..... I never had a bed sore... I have a portable DVD player, to watch movies, I have an account w/ netflix..... I wish I had access to my computer, I'm a computer junkee lol.... If I get a bed sore, I would send medicaid the bill..... Thanks for thinking of me...
 
ttyl
Stacey Gaylord mich

----- Original Message ----
From: "hhjgreene@yahoo. com" <hhjgreene@yahoo. com>
To: MD-List@yahoogroups .com
Sent: Saturday, May 31, 2008 9:06:23 PM
Subject: Re: [SPAM][MD-List] Nice bed!!!!!!!/Stacy

Hi Stacy,

I agree, you are a very brave Lady to stay home alone at night.  You need an advocate to help fight.  Do you have the mattress that rolls you over or a low air loss mattress?  I'm Eric's mom, he is 23 yrs old with duchenne Muscular Dystrophy.  Mda I going to help us get a mattress for Eric since Medicaid won't cover it because he doesn't have #4 open

sores on his back side.  I know It is crazy....

 

It is better not to have bed sores, I wish medicaid saw it that way.  Eric has never had bed sores.

 

Do you have access to your tv and computer at night?  Or like Reina asked buttons for emergency?  I hope so.  You are are my mind and I'm sure others as well....

 

Take good care Stacy, know that others are thinking of you....

 

Holly

 



--- On Sat, 5/31/08, stbrigid@cox. net <stbrigid@cox. net> wrote:

From: stbrigid@cox. net <stbrigid@cox. net>
Subject: Re: [SPAM][MD-List] Nice bed!!!!!!!
To: MD-List@yahoogroups .com
Date: Saturday, May 31, 2008, 1:09 PM

Stacey..you are a very brave lady!  Do you have emergency call buttons or something to use at night if you encounter problems??
Is there no way to get a live in aide , it sounds scary that you have to be alone at night and can't move.
Which state are you in??  Reina
----- Original Message -----
From: stacey
Sent: Friday, May 30, 2008 9:12 PM
Subject: [SPAM][MD-List] Nice bed!!!!!!!

Hi! I have SMA 2. I'm left alone at night in my apt... That kinda bed
that would be very helpful... I have rods in my back, I'm not able to
move until my caregivers comes in the next day.... Medicaid is doing
alot of cut backs...... Never had a bedsore....




#21364 From: "Mike Keen" <mkeen@...>
Date: Wed Jun 25, 2008 9:20 pm
Subject: Re: Very concerned mother!
devldude23
Online Now Online Now
Send Email Send Email
 
DMD typically elevates liver enzymes
 
Pastor Mike,
Communications Pastor,
Good Shepherd Church of the Nazarene,
www.goodshepherdnaz.org 540-337-1540
Spirit Roller Ministries www.spiritrollerministries.org
540-448-3824

#21363 From: TAMARA TWITCHELL <rocknrollmama83@...>
Date: Wed Jun 25, 2008 9:15 pm
Subject: Re: Very concerned mother!
rocknrollmama83
Offline Offline
Send Email Send Email
 
Thanks for your reply!

--- On Wed, 6/25/08, Greg Wilhelm <greg1960@...> wrote:
From: Greg Wilhelm <greg1960@...>
Subject: Re: [MD-List] Very concerned mother!
To: MD-List@yahoogroups.com
Date: Wednesday, June 25, 2008, 4:11 PM

Sounds like DMD for sure. :(
 
Greg
 
----- Original Message -----
Sent: Tuesday, June 24, 2008 6:33 PM GREG
Subject: [MD-List] Very concerned mother!

I have a 2 year old son who, in October, was admitted into the
hospital for bronchiolitis. The doctor discovered that his liver
enzymes were elevated 10 times normal range. His doctor referred him
to a gastrointerologist who did an ultrasound, a biopsy, and amny
bloodtests and found a perfectly healthy liver. The last bloodtest he
did was a cpk test that read that his cpk level was 19,000. His calves
are also fairly big. He was sent to a neurologist who sent him for a
DNA test but we haven't gotten the results. Could it be something else
or is it Duchenne Muscular Dystrophy? I would like to hear your
opinion!



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#21362 From: "Greg Wilhelm" <greg1960@...>
Date: Wed Jun 25, 2008 9:11 pm
Subject: Re: Very concerned mother!
tiggers2000us
Offline Offline
Send Email Send Email
 
Sounds like DMD for sure. :(
 
Greg
 
----- Original Message -----
Sent: Tuesday, June 24, 2008 6:33 PM GREG
Subject: [MD-List] Very concerned mother!

I have a 2 year old son who, in October, was admitted into the
hospital for bronchiolitis. The doctor discovered that his liver
enzymes were elevated 10 times normal range. His doctor referred him
to a gastrointerologist who did an ultrasound, a biopsy, and amny
bloodtests and found a perfectly healthy liver. The last bloodtest he
did was a cpk test that read that his cpk level was 19,000. His calves
are also fairly big. He was sent to a neurologist who sent him for a
DNA test but we haven't gotten the results. Could it be something else
or is it Duchenne Muscular Dystrophy? I would like to hear your
opinion!



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Checked by AVG.
Version: 8.0.101 / Virus Database: 270.4.1/1518 - Release Date: 6/25/2008 9:46 AM

#21361 From: "rocknrollmama83" <rocknrollmama83@...>
Date: Wed Jun 25, 2008 1:33 am
Subject: Very concerned mother!
rocknrollmama83
Offline Offline
Send Email Send Email
 
I have a 2 year old son who, in October, was admitted into the
hospital for bronchiolitis. The doctor discovered that his liver
enzymes were elevated 10 times normal range. His doctor referred him
to a gastrointerologist who did an ultrasound, a biopsy, and amny
bloodtests and found a perfectly healthy liver. The last bloodtest he
did was a cpk test that read that his cpk level was 19,000. His calves
are also fairly big. He was sent to a neurologist who sent him for a
DNA test but we haven't gotten the results. Could it be something else
or is it Duchenne Muscular Dystrophy? I would like to hear your
opinion!

#21360 From: TAMARA TWITCHELL <rocknrollmama83@...>
Date: Wed Jun 25, 2008 1:54 am
Subject: new member
rocknrollmama83
Offline Offline
Send Email Send Email
 
My name is Tamara. I have a 2 year old son, Gabriel, that may have dmd and I joined this group to talk to others about the condition!


#21359 From: "Sarah" <sarahdufrane@...>
Date: Wed Jun 25, 2008 5:57 pm
Subject: My daughter is going to be tested for MD
ninak8
Offline Offline
Send Email Send Email
 
I'm a little freaked out and just need some supportive advice.  I
took her to her pediatrician last week for a fever/ear infection.
The doc says she would like to refer us to St. Louis Children's
Hospital for a muscle biopsy to test for MD, since my daughter (17
months) has significant issues with muscle tone in her legs and
mobility problems.  She uses AFO's and a pediatric walker and sees
two physical therapists.  For several months now we have just been
told she is "hypermobile" and has low muscle tone...that is why she
can't balance enough to walk yet and has issues with standing,
etc...  We have never heard anyone mention MD until now...and I
didn't know enough to ask about the possibility.  So I'm a little
thrown off, doing a lot of research online which is just scary in
itself.  So we're going to make the 3 hour drive to the children's
hospital to find out either way.  I need to stop wondering and
speculating about it.  It's been all I can think about since the
doctor mentioned it last week.  I find myself looking at my daughter
and thinking "hmmm...maybe she does have this syptom ot that
symptom".

Anyway, I just hope I"m doing the right thing and wonder if anyone
else has a similar experience so I don't feel so on my own right
now.  Thanks

#21358 From: mzmrize039@...
Date: Tue Jun 24, 2008 11:42 pm
Subject: Re: Re: spinal surgery
dspatola418
Offline Offline
Send Email Send Email
 
Another thing that I was made aware of was the fact that my son's face would swell quite a bit after surgery.  His face looked almost like a pumpkin.  It took a few days for the swelling to go down.  He was kept quite sedated the first couple of days to make sure he didn't move much too.  He wanted to be in his chair as soon as possible.  They gave him two doses of morphine, but it lowered his respiratory rate too low, so he refused it from that point forward and managed the pain quite well on his own.  I could barely tell that Vincent had the surgery.  His scar was truly amazing.  It looked as though they glued it together.  I asked the doctor how he made it look so amazing.  He laughingly said, "If I tell you that, I would have to kill you."  Dr. Mackenzie at A.I. duPont hospital in Delaware is absolutely amazing.  He has done this surgery so many times and has had tremendous results each and every time.  I would recommend him highly to anyone.  Vincent was in the hospital for about a week total.  When we were discharged, it was raining.  Where he had "grown" from the surgery, we had difficulty getting him into our van.  We had to take his headrest off, and he had to lean over which wasn't really easy after just having this surgery, but we managed.
 
Good luck to you,
Diana, Mom to Vincent, age 19, with Duchenne muscular dystropy
 
In a message dated 6/23/2008 4:00:12 P.M. Eastern Daylight Time, cmedvescek@... writes:

Hi Debbie,

FYI, MDA's Quest magazine ran an article about spinal surgery that
featured Adele and Jason. It can be seen at this link:

http://www.mda.org/publications/quest/q94ahead.html

Best of luck! Chris Medvescek, Quest editor

--- In MD-List@yahoogroups.com, "Adele" <jasona65@...> wrote:
>
> Debbie, Where are you guys?
>
>
>
> Jason had his at age 17, 6 years ago. If all goes great, he is
going to be
> in a lot of pain, but they will keep him pretty under for the
first 48-72
> hours. After that, they use great drugs to handle the pain. I
have been
> told that this is a very bloody surgery. Jason went through like
18 units
> of blood during surgery and another 4-5 post surgery. If family
members are
> same blood type, I would see about banking as many units as
possible. Have
> the doctors talked in length about the surgery yet? Your son is
going to
> need some rehab afterwards. He's going to need to learn w\how to
do many of
> the things he does now, like self feed. IF you have time, I would
tape
> record all the different things he can do now, so this way, you
won't have
> the P/T and O/T doubt that he could do all the things you say he
could. If
> he doesn't have it already, he need the tilt n'space feature for
his
> powerchair. This will help with pressure release. He might also
need a new
> type of seat cushion for his chair.
>
>
>
> IF you have a van already and it doesn't have either a lowered
floor or a
> raise roof with raised doors, you will need that in order to drive
him home.
> Jason "grew" about 4 inches after surgery, about 2 inch was
directly from
> surgery the other 2 inch was the added tilt n'space feature on a
power
> chair.
>
>
>
> That's all I can think of right off the top of my head. Any more
questions,
> I'll be happy to answer.
>
>
>
> Adele
>
>
>
> _____
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> MurrayD4@...
> Sent: Monday, June 23, 2008 2:13 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] spinal surgery
>
>
>
> My son, 15 with dmd is having spinal surgery. I was just looking
for some
> advice on the surgery, the pain after and what to expect for after
surgery.
>
>
>
> thank you
>
>
>
> debbie
>
>
>
>
>
> _____
>
> Gas prices getting you down? Search AOL Autos for fuel-efficient
used cars
> <http://autos.aol.com/used?ncid=aolaut00050000000007> .
>
>
>
>
> _____
>
> I am using the free version of SPAMfighter for private users.
> It has removed 422 spam emails to date.
> Paying users do not have this message in their emails.
> Try SPAMfighter <http://www.spamfighter.com/len> for free now!
>





Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

#21357 From: "Adele" <jasona65@...>
Date: Tue Jun 24, 2008 8:53 pm
Subject: RE: Re: Social Security Disability
navymom2josh
Online Now Online Now
Send Email Send Email
 

Jason got his in about 6 weeks.

 

Adele

 

P.S.  I nag

 


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Tigger Greg
Sent: Tuesday, June 24, 2008 2:30 PM
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] Re: Social Security Disability

 

Takes 4 months to get SSI if it goes right the first time.

Greg

 

 

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

From: Heather

Sent: Tuesday, June 24, 2008 6:41 AM GREG

Subject: [MD-List] Re: Social Security Disability

 


Okay so I called up the SS office, and they basically told me to
ignore the letter and that my application for SSI is still pending and
will be for probably 4 months! Yuck.

--- In MD-List@yahoogroups.com, "Adele" <jasona65@...> wrote:
>
> Heather, Yes, that's correct, in order to SS you would of have to
worked
> for so many quarters. I'm not sure how long that is, but I would
guess at
> least 2 years. The only other way to get SS is to have a parent retire,
> then you would get benefits through them.
>
>
>
> Have you applies to SSI, Supplemental Security Income. This, you
just have
> to be disabled and have no more then about $2,000 in assets. If you
haven't
> applied, you go to the SS office and tell them you want SSI not SS.
>
>
>
> I'm not sure if all the States SSI programs come with it, but here in
> Maryland, there is a tuition waiver, at least for Community College, not
> sure about any other state school.
>
>
>
> Adele
>
>
>
> _____
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> Heather
> Sent: Monday, June 23, 2008 6:26 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Social Security Disability
>
>
>
> Alright, so. I've got a little situation and was wondering if
> anybody's been down the same path.
> I'm 19 years old- SMA 2/3. I just filed for Social Security Disability
> to help me pay for my college (I'm going off to a Uni in less than 6
> months). Of course they immediately sent a letter back saying I don't
> qualify due to not having "enough Social Security Credits". Apparently
> I'm supposed to have worked and gotten credits. Except the fact that I
> am a student devoted to work, have no transportation to/from any job,
> and have a limited amount of work I can actually do. So no, I didn't
work.
>
> I know there must be somebody who hasn't worked a day in their lives
> who gets SS payments. I only have $408 to my name! So I'm going to
> appeal their decision, but I don't really know what I'm doing..
>
> I'm still young! New at this, you know? So if anyone could help,
> please oh please let me know your situation, etc.. Thank you! - Heather
>
>
>
>
> _____
>
> I am using the free version of SPAMfighter for private users.
> It has removed 422 spam emails to date.
> Paying users do not have this message in their emails.
> Try SPAMfighter <http://www.spamfighter.com/len> for free now!
>


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Paying users do not have this message in their emails.
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#21356 From: "Adele" <jasona65@...>
Date: Tue Jun 24, 2008 8:53 pm
Subject: RE: Re: Social Security Disability
navymom2josh
Online Now Online Now
Send Email Send Email
 

Heather,  you could have asked about SSI, but they sent you the paper work fir SSDI. 


When Jason was about to turn 18, I called my local Social Security office and told them I wanted to apply for SSI for my son.  They set up a telephone meeting.  When the day arrived, the person called me and was asking me all of these questions about where I worked, and how long.  When I corrected him that this was about Jason getting SSI, he told me that he was calling about SSDI.  They get the two programs confused all of the time.

 

Adele

 


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Heather
Sent: Tuesday, June 24, 2008 9:19 AM
To: MD-List@yahoogroups.com
Subject: [MD-List] Re: Social Security Disability

 

Thank you so much, Adele.
It's funny, I really had thought I applied to SSI. That was my intent, but then looking over
these papers, it says "SSDI" all over it, which I'm going to assume is different. I'm going to
call today and ask about it because I'm confused. I'll let you know the outcome!

--- In MD-List@yahoogroups.com, "Adele" <jasona65@...> wrote:
>
> Heather, Yes, that's correct, in order to SS you would of have to worked
> for so many quarters. I'm not sure how long that is, but I would guess at
> least 2 years. The only other way to get SS is to have a parent retire,
> then you would get benefits through them.
>
>
>
> Have you applies to SSI, Supplemental Security Income. This, you just have
> to be disabled and have no more then about $2,000 in assets. If you haven't
> applied, you go to the SS office and tell them you want SSI not SS.
>
>
>
> I'm not sure if all the States SSI programs come with it, but here in
> Maryland, there is a tuition waiver, at least for Community College, not
> sure about any other state school.
>
>
>
> Adele
>
>
>
> _____
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of
> Heather
> Sent: Monday, June 23, 2008 6:26 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Social Security Disability
>
>
>
> Alright, so. I've got a little situation and was wondering if
> anybody's been down the same path.
> I'm 19 years old- SMA 2/3. I just filed for Social Security Disability
> to help me pay for my college (I'm going off to a Uni in less than 6
> months). Of course they immediately sent a letter back saying I don't
> qualify due to not having "enough Social Security Credits". Apparently
> I'm supposed to have worked and gotten credits. Except the fact that I
> am a student devoted to work, have no transportation to/from any job,
> and have a limited amount of work I can actually do. So no, I didn't work.
>
> I know there must be somebody who hasn't worked a day in their lives
> who gets SS payments. I only have $408 to my name! So I'm going to
> appeal their decision, but I don't really know what I'm doing..
>
> I'm still young! New at this, you know? So if anyone could help,
> please oh please let me know your situation, etc.. Thank you! - Heather
>
>
>
>
> _____
>
> I am using the free version of SPAMfighter for private users.
> It has removed 422 spam emails to date.
> Paying users do not have this message in their emails.
> Try SPAMfighter <http://www.spamfighter.com/len> for free now!
>



I am using the free version of SPAMfighter for private users.
It has removed 423 spam emails to date.
Paying users do not have this message in their emails.
Try SPAMfighter for free now!

#21355 From: "Tigger Greg" <greg1960@...>
Date: Tue Jun 24, 2008 6:30 pm
Subject: Re: Re: Social Security Disability
tiggers2000us
Offline Offline
Send Email Send Email
 
Takes 4 months to get SSI if it goes right the first time.
Greg
 
 
----- Original Message -----
From: Heather
Sent: Tuesday, June 24, 2008 6:41 AM GREG
Subject: [MD-List] Re: Social Security Disability


Okay so I called up the SS office, and they basically told me to
ignore the letter and that my application for SSI is still pending and
will be for probably 4 months! Yuck.

--- In MD-List@yahoogroups.com, "Adele" <jasona65@...> wrote:
>
> Heather, Yes, that's correct, in order to SS you would of have to
worked
> for so many quarters. I'm not sure how long that is, but I would
guess at
> least 2 years. The only other way to get SS is to have a parent retire,
> then you would get benefits through them.
>
>
>
> Have you applies to SSI, Supplemental Security Income. This, you
just have
> to be disabled and have no more then about $2,000 in assets. If you
haven't
> applied, you go to the SS office and tell them you want SSI not SS.
>
>
>
> I'm not sure if all the States SSI programs come with it, but here in
> Maryland, there is a tuition waiver, at least for Community College, not
> sure about any other state school.
>
>
>
> Adele
>
>
>
> _____
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> Heather
> Sent: Monday, June 23, 2008 6:26 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Social Security Disability
>
>
>
> Alright, so. I've got a little situation and was wondering if
> anybody's been down the same path.
> I'm 19 years old- SMA 2/3. I just filed for Social Security Disability
> to help me pay for my college (I'm going off to a Uni in less than 6
> months). Of course they immediately sent a letter back saying I don't
> qualify due to not having "enough Social Security Credits". Apparently
> I'm supposed to have worked and gotten credits. Except the fact that I
> am a student devoted to work, have no transportation to/from any job,
> and have a limited amount of work I can actually do. So no, I didn't
work.
>
> I know there must be somebody who hasn't worked a day in their lives
> who gets SS payments. I only have $408 to my name! So I'm going to
> appeal their decision, but I don't really know what I'm doing..
>
> I'm still young! New at this, you know? So if anyone could help,
> please oh please let me know your situation, etc.. Thank you! - Heather
>
>
>
>
> _____
>
> I am using the free version of SPAMfighter for private users.
> It has removed 422 spam emails to date.
> Paying users do not have this message in their emails.
> Try SPAMfighter <http://www.spamfighter.com/len> for free now!
>



No virus found in this incoming message.
Checked by AVG.
Version: 8.0.101 / Virus Database: 270.4.1/1516 - Release Date: 6/24/2008 7:53 AM

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