Sissy,

I'm so sorry about your loss. The death of a child is probably the
hardest thing for parents to go through. I wish I could find something
better to say, but words seem to fail me at times like this.

George

Looks like alot of great work happening Arnold. I hope we find some sucess.
Thanks for sharing that info .
Diane




----- Original Message -----
From: "apelofsky" <apelofsky@...>
To: <MD-List@yahoogroups.com>
Sent: Tuesday, May 31, 2005 3:41 PM
Subject: [MD-List] 2005 MDA Grants


> Have you checked out the 2005 MDA grants? Check out
> http://www.mdausa.org/research/grants/2005GRANTS.pdf
>
> It seems there is nothing for today's generation. Does anyone agree
> with me or am I alone in this opinion?
>
> Arnold
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>

Evadne <sissy0390@...> wrote:

Hi, my name is Sissy, mother of Terry age 14 from Texas. My Terry had DMD and the problems that come with it. I know we are all different. Some of you may remember me from awhile back. I had asked about stomach problems in boys with DMD. I had got no answers or reasons why, until the weeks of May 10 - 23, 2005. My Terry went thru the ER at Texas Children's Hospital, almost dead. He had to much fluid in his tissues and not enough in his blood, but was not swollen. They had to put him on a vent and worked to get him stable. Terry stabled out, so they removed him from the vent on May21, and put him on bi pap. Things were still not working properly, so we took him off bi pap, and put him on regular oxygen,that same day. He did really good. Blood pressure stayed good, oxygen stayed good, heart rate was good. He was having alot of irregular heart beats like ever other beat. Terry really did good from sat., till Mon, May 23. That Monday he was sitting up in bed and talking to us. He got to do what he wanted to do, with out the bi pap or vent. See, my son was dying regardless of the meds they gave him, or the machines that kept him alive longer. My son didn't want all that stuff, because it would have prolonged the outcome, which was death. My son didn't suffer all the machines and the tubes. My sons heart gave out at 9:47p.m. on May 23, 2005, at age 14. So please do not tell me that is to young. He was on heart meds for 4 yrs. Echo every 6 months. His lungs were good. It was his heart muscles that gave out. The heart was no longer pumping the blood to were it was suppose to go. So no matter what I did or didn't do, there was no hope. When we came into the ER, blood was going to the brain but not like it was suppose to. The heart pumps the blood to the lungs first, then to the brain, and then to the rest of the body. The stomach was way down the line, that is why he was having stomach problems. At the end the heart just stopped squeezing, but he had a wonderful day. He got to laugh and speak to us, his family. We all had our hands on him trying to warm him up because he was so cold and had 102 temp. He told us that he loved us, and God took him. I will miss my Terry, but he is not suffering anymore. God does not allow wheelchairs in heaven, and he is healed. Please make sure you get your child's heart checked out.

Have you checked out the 2005 MDA grants? Check out
http://www.mdausa.org/research/grants/2005GRANTS.pdf

It seems there is nothing for today's generation. Does anyone agree
with me or am I alone in this opinion?

Arnold

Hi Sissy,

I am sorry for your loss but you and your family showed incredible
courage to allow Terry to die in the way he wanted to.  I'm so glad
his last day was spent the way he wanted with his family at his side.

Lynda
   --- In MD-List@yahoogroups.com, Evadne <sissy0390@y...> wrote:
>
> Hi, my name is Sissy, mother of Terry age 14 from Texas. My Terry
had DMD and the problems that come with it. I know we are all
different. Some of you may remember me from awhile back. I had asked
about stomach problems in boys with DMD. I had got no answers or
reasons why, until the weeks of May 10 - 23, 2005. My Terry went thru
the ER at Texas Children's Hospital, almost dead. He had to much
fluid in his tissues and not enough in his blood, but was not
swollen. They had to put him on a vent and worked to get him stable.
Terry stabled out, so they removed him from the vent on May21, and
put him on bi pap. Things were still not working properly, so we took
him off bi pap, and put him on regular oxygen,that same day. He did
really good. Blood pressure stayed good, oxygen stayed good, heart
rate was good. He was having alot of irregular heart beats like ever
other beat. Terry really did good from sat., till Mon, May 23. That
Monday he was sitting up in bed and talking to us. He got to
>  do what he wanted to do, with out the bi pap or vent. See, my son
was dying regardless of the meds they gave him, or the machines that
kept him alive longer. My son didn't want all that stuff, because it
would have prolonged the outcome, which was death. My son didn't
suffer all the machines and the tubes. My sons heart gave out at
9:47p.m. on May 23, 2005, at age 14. So please do not tell me that is
to young. He was on heart meds for 4 yrs. Echo every 6 months. His
lungs were good. It was his heart muscles that gave out. The heart
was no longer pumping the blood to were it was suppose to go. So no
matter what I did or didn't do, there was no hope. When we came into
the ER, blood was going to the brain but not like it was suppose to.
The heart pumps the blood to the lungs first, then to the brain, and
then to the rest of the body. The stomach was way down the line, that
is why he was having stomach problems. At the end the heart just
stopped squeezing, but he had a wonderful day. He
>  got to laugh and speak to us, his family. We all had our hands on
him trying to warm him up because he was so cold and had 102 temp. He
told us that he loved us, and God took him. I will miss my Terry, but
he is not suffering anymore. God does not allow wheelchairs in
heaven, and he is healed. Please make sure you get your child's heart
checked out.

> Hi Sissy
I am so sorry for your loss and in awe at the same time that you had time
to spend with Terry and will always remember that and how special it was.
You are so right there are no wheelchairs in heaven and he is running free
and having fun up there.
My son is 14 as well but at the moment he appears to be in good health.

My thoughts are with you and your family at this time. Terry is looking
down on youb all and smiling.

Donna Mum to Tyson 14 with DMD

> Hi, my name is Sissy, mother of Terry age 14 from Texas. My Terry had DMD
> and the problems that come with it. I know we are all different. Some of
> you may remember me from awhile back. I had asked about stomach problems
> in boys with DMD. I had got no answers or reasons why, until the weeks of
> May 10 - 23, 2005. My Terry went thru the ER at Texas Children's Hospital,
> almost dead. He had to much fluid in his tissues and not enough in his
> blood, but was not swollen. They had to put him on a vent and worked to
> get him stable. Terry stabled out, so they removed him from the vent on
> May21, and put him on bi pap. Things were still not working properly, so
> we took him off bi pap, and put him on regular oxygen,that same day. He
> did really good. Blood pressure stayed good, oxygen stayed good, heart
> rate was good. He was having alot of irregular heart beats like ever other
> beat. Terry really did good from sat., till Mon, May 23. That Monday he
> was sitting up in bed and talking to us. He
>   got to
>  do what he wanted to do, with out the bi pap or vent. See, my son was
> dying regardless of the meds they gave him, or the machines that kept him
> alive longer. My son didn't want all that stuff, because it would have
> prolonged the outcome, which was death. My son didn't suffer all the
> machines and the tubes. My sons heart gave out at 9:47p.m. on May 23,
> 2005, at age 14. So please do not tell me that is to young. He was on
> heart meds for 4 yrs. Echo every 6 months. His lungs were good. It was
> his heart muscles that gave out. The heart was no longer pumping the
> blood to were it was suppose to go. So no matter what I did or didn't do,
> there was no hope. When we came into the ER, blood was going to the brain
> but not like it was suppose to. The heart pumps the blood to the lungs
> first, then to the brain, and then to the rest of the body. The stomach
> was way down the line, that is why he was having stomach problems. At the
> end the heart just stopped squeezing, but he had a wonderful
>   day. He
>  got to laugh and speak to us, his family. We all had our hands on him
> trying to warm him up because he was so cold and had 102 temp. He told us
> that he loved us, and God took him. I will miss my Terry, but he is not
> suffering anymore. God does not allow wheelchairs in heaven, and he is
> healed. Please make sure you get your child's heart checked out.
>
>
>

I tried to get in touch with you, didn't get an anwer,until today that iread about terry,I can

> Hi Sissy
I am so sorry for your loss and in awe at the same time that you had time
to spend with Terry and will always remember that and how special it was.
You are so right there are no wheelchairs in heaven and he is running free
and having fun up there.
My son is 14 as well but at the moment he appears to be in good health.

My thoughts are with you and your family at this time. Terry is looking
down on youb all and smiling.

Donna Mum to Tyson 14 with DMD

> Hi, my name is Sissy, mother of Terry age 14 from Texas. My Terry had DMD
> and the problems that come with it. I know we are all different. Some of
> you may remember me from awhile back. I had asked about stomach problems
> in boys with DMD. I had got no answers or reasons why, until the weeks of
> May 10 - 23, 2005. My Terry went thru the ER at Texas Children's Hospital,
> almost dead. He had to much fluid in his tissues and not enough in his
> blood, but was not swollen. They had to put him on a vent and worked to
> get him stable. Terry stabled out, so they removed him from the vent on
> May21, and put him on bi pap. Things were still not working properly, so
> we took him off bi pap, and put him on regular oxygen,that same day. He
> did really good. Blood pressure stayed good, oxygen stayed good, heart
> rate was good. He was having alot of irregular heart beats like ever other
> beat. Terry really did good from sat., till Mon, May 23. That Monday he
> was sitting up in bed and talking to us. He
>   got to
>  do what he wanted to do, with out the bi pap or vent. See, my son was
> dying regardless of the meds they gave him, or the machines that kept him
> alive longer. My son didn't want all that stuff, because it would have
> prolonged the outcome, which was death. My son didn't suffer all the
> machines and the tubes. My sons heart gave out at 9:47p.m. on May 23,
> 2005, at age 14. So please do not tell me that is to young. He was on
> heart meds for 4 yrs. Echo every 6 months. His lungs were good. It was
> his heart muscles that gave out. The heart was no longer pumping the
> blood to were it was suppose to go. So no matter what I did or didn't do,
> there was no hope. When we came into the ER, blood was going to the brain
> but not like it was suppose to. The heart pumps the blood to the lungs
> first, then to the brain, and then to the rest of the body. The stomach
> was way down the line, that is why he was having stomach problems. At the
> end the heart just stopped squeezing, but he had a wonderful
>   day. He
>  got to laugh and speak to us, his family. We all had our hands on him
> trying to warm him up because he was so cold and had 102 temp. He told us
> that he loved us, and God took him. I will miss my Terry, but he is not
> suffering anymore. God does not allow wheelchairs in heaven, and he is
> healed. Please make sure you get your child's heart checked out.
>
>
>

Sissy,

Our prayers are with you.  I have a 14 year old son
with DMD also.  Thank you for alerting us to the heart
issues.
God is with you always.  Do you have family support
right now?  Let us know how you are holding up.

Hugs and support,
Becky S. in Missouri



__________________________________
Discover Yahoo!
Find restaurants, movies, travel and more fun for the weekend. Check it out!
http://discover.yahoo.com/weekend.html

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

From: Evadne

To: M B ; dmdgroups@yahoogroups.com ; md-list@yahoogroups.com

Sent: Tuesday, May 31, 2005 12:18 AM

Subject: [MD-List] Loss of a child

Hi, my name is Sissy, mother of Terry age 14 from Texas. My Terry had DMD and the problems that come with it. I know we are all different. Some of you may remember me from awhile back. I had asked about stomach problems in boys with DMD. I had got no answers or reasons why, until the weeks of May 10 - 23, 2005. My Terry went thru the ER at Texas Children's Hospital, almost dead. He had to much fluid in his tissues and not enough in his blood, but was not swollen. They had to put him on a vent and worked to get him stable. Terry stabled out, so they removed him from the vent on May21, and put him on bi pap. Things were still not working properly, so we took him off bi pap, and put him on regular oxygen,that same day. He did really good. Blood pressure stayed good, oxygen stayed good, heart rate was good. He was having alot of irregular heart beats like ever other beat. Terry really did good from sat., till Mon, May 23. That Monday he was sitting up in bed and talking to us. He got to do what he wanted to do, with out the bi pap or vent. See, my son was dying regardless of the meds they gave him, or the machines that kept him alive longer. My son didn't want all that stuff, because it would have prolonged the outcome, which was death. My son didn't suffer all the machines and the tubes. My sons heart gave out at 9:47p.m. on May 23, 2005, at age 14. So please do not tell me that is to young. He was on heart meds for 4 yrs. Echo every 6 months. His lungs were good. It was his heart muscles that gave out. The heart was no longer pumping the blood to were it was suppose to go. So no matter what I did or didn't do, there was no hope. When we came into the ER, blood was going to the brain but not like it was suppose to. The heart pumps the blood to the lungs first, then to the brain, and then to the rest of the body. The stomach was way down the line, that is why he was having stomach problems. At the end the heart just stopped squeezing, but he had a wonderful day. He got to laugh and speak to us, his family. We all had our hands on him trying to warm him up because he was so cold and had 102 temp. He told us that he loved us, and God took him. I will miss my Terry, but he is not suffering anymore. God does not allow wheelchairs in heaven, and he is healed. Please make sure you get your child's heart checked out.

---

> Hi Sissy
I am so sorry for your loss and in awe at the same time that you had time
to spend with Terry and will always remember that and how special it was.
You are so right there are no wheelchairs in heaven and he is running free
and having fun up there.
My son is 14 as well but at the moment he appears to be in good health.

My thoughts are with you and your family at this time. Terry is looking
down on youb all and smiling.

Donna Mum to Tyson 14 with DMD

> Hi, my name is Sissy, mother of Terry age 14 from Texas. My Terry had DMD
> and the problems that come with it. I know we are all different. Some of
> you may remember me from awhile back. I had asked about stomach problems
> in boys with DMD. I had got no answers or reasons why, until the weeks of
> May 10 - 23, 2005. My Terry went thru the ER at Texas Children's Hospital,
> almost dead. He had to much fluid in his tissues and not enough in his
> blood, but was not swollen. They had to put him on a vent and worked to
> get him stable. Terry stabled out, so they removed him from the vent on
> May21, and put him on bi pap. Things were still not working properly, so
> we took him off bi pap, and put him on regular oxygen,that same day. He
> did really good. Blood pressure stayed good, oxygen stayed good, heart
> rate was good. He was having alot of irregular heart beats like ever other
> beat. Terry really did good from sat., till Mon, May 23. That Monday he
> was sitting up in bed and talking to us. He
>   got to
>  do what he wanted to do, with out the bi pap or vent. See, my son was
> dying regardless of the meds they gave him, or the machines that kept him
> alive longer. My son didn't want all that stuff, because it would have
> prolonged the outcome, which was death. My son didn't suffer all the
> machines and the tubes. My sons heart gave out at 9:47p.m. on May 23,
> 2005, at age 14. So please do not tell me that is to young. He was on
> heart meds for 4 yrs. Echo every 6 months. His lungs were good. It was
> his heart muscles that gave out. The heart was no longer pumping the
> blood to were it was suppose to go. So no matter what I did or didn't do,
> there was no hope. When we came into the ER, blood was going to the brain
> but not like it was suppose to. The heart pumps the blood to the lungs
> first, then to the brain, and then to the rest of the body. The stomach
> was way down the line, that is why he was having stomach problems. At the
> end the heart just stopped squeezing, but he had a wonderful
>   day. He
>  got to laugh and speak to us, his family. We all had our hands on him
> trying to warm him up because he was so cold and had 102 temp. He told us
> that he loved us, and God took him. I will miss my Terry, but he is not
> suffering anymore. God does not allow wheelchairs in heaven, and he is
> healed. Please make sure you get your child's heart checked out.
>
>
>

Hi, my name is Sissy, mother of Terry age 14 from Texas. My Terry had DMD and the problems that come with it. I know we are all different. Some of you may remember me from awhile back. I had asked about stomach problems in boys with DMD. I had got no answers or reasons why, until the weeks of May 10 - 23, 2005. My Terry went thru the ER at Texas Children's Hospital, almost dead. He had to much fluid in his tissues and not enough in his blood, but was not swollen. They had to put him on a vent and worked to get him stable. Terry stabled out, so they removed him from the vent on May21, and put him on bi pap. Things were still not working properly, so we took him off bi pap, and put him on regular oxygen,that same day. He did really good. Blood pressure stayed good, oxygen stayed good, heart rate was good. He was having alot of irregular heart beats like ever other beat. Terry really did good from sat., till Mon, May 23. That Monday he was sitting up in bed and talking to us. He got to do what he wanted to do, with out the bi pap or vent. See, my son was dying regardless of the meds they gave him, or the machines that kept him alive longer. My son didn't want all that stuff, because it would have prolonged the outcome, which was death. My son didn't suffer all the machines and the tubes. My sons heart gave out at 9:47p.m. on May 23, 2005, at age 14. So please do not tell me that is to young. He was on heart meds for 4 yrs. Echo every 6 months. His lungs were good. It was his heart muscles that gave out. The heart was no longer pumping the blood to were it was suppose to go. So no matter what I did or didn't do, there was no hope. When we came into the ER, blood was going to the brain but not like it was suppose to. The heart pumps the blood to the lungs first, then to the brain, and then to the rest of the body. The stomach was way down the line, that is why he was having stomach problems. At the end the heart just stopped squeezing, but he had a wonderful day. He got to laugh and speak to us, his family. We all had our hands on him trying to warm him up because he was so cold and had 102 temp. He told us that he loved us, and God took him. I will miss my Terry, but he is not suffering anymore. God does not allow wheelchairs in heaven, and he is healed. Please make sure you get your child's heart checked out.

Hi Jackie,,

 

Tanner is 9 and he see's and orthopaedic surgeon,, a couple of times a year,  when we saw him in January, we agree'd that Tanner was walking on his toes most of the time, and was weakening substatialially, so we looked at the options together, which were to do the serial castings, and then getting orthodics to sustain the stretch, or to do the heelcord surgery,, we automatically ruled out the heel cord surgery, because it would require Tanner to be off his feet for 4 to 6 weeks and he did not think that he would be able to walk anymore after such a long period. so the only thing left was the serial castings, and at first he did not even want to do that because he knew that Tanner would have a hard time walking because of the weight of them.  He cannot walk independantly but with help he can go maybe 15 or 20 steps at a time, so we encourage him to do this many times a day.  After the first set was taken off the measurements were good, he had gained more than expected range, and I noticed that the curve in his back was not so severe, which they said was compensation for the lack of range in his feet,, it was to keep his balance,, so far I am happy with the results and will contine with them.  I think any medical decisions for our kids are personal choices that we have to make,, I personally weigh the risks and benefits and do what I think in  right.

 

Dana

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

From: Jackie Torres

To: MD-List@yahoogroups.com

Sent: Sunday, May 29, 2005 11:20 AM

Subject: Re: [MD-List] Serial Castings

Hy Dana:

My name is jackie and i am the mother of a 6 year old who has DMD.

and my question to you is how do we mom know about when is time,

for casting and why is so necessary for our boys,to get this done is

there ay alternative on what else to choose for helping them,get their

feet to 90 degree without the casting. please let me know a litttle about

this situation,because i want to know how to make the right the decision

when the time comes.

 

 

Thanks

jackie

Dana Miller <dana.miller@...> wrote:

Hi Joanne,

Actually after I wrote that post, we went to get the next set put on and he had actually gained more then expected range, she was really pleased, and we had taken the casts off a day early,, Tanner's not too impressed with having to wear them,, but this time we decorated them like spiderman boots so that helped, and also he got back his power chair which had been in the shop with a blown motor, and it was only 3 weeks old,, anywho,, so far so good.

 

Dana

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

From: Joanne & David

To: MD-List@yahoogroups.com

Sent: Friday, May 27, 2005 7:29 PM

Subject: Re: [MD-List] Serial Castings

Dana, I have a friend whose son did the serial castings.  I will ask her to write you about it.  She was happy with the improved range of motion in her young son's feet.  They had tightened quite a bit at a young age.  It's good to get the feet to 90 degrees.  

Joanne

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

From: Dana Miller

To: md-list@YahooGroups.com

Sent: Friday, May 27, 2005 7:59 AM

Subject: [MD-List] Serial Castings

Hi everyone,

 

I was wondering if anyone had any experience with Serial Castings, Tanner is on his second round of them and from what I am told it has already increased the range of his stretch in his feet and ankles, but he is very uncomfortable, and cannot walk unassisted at all, I managed ot talk him into this round but I am not sure how well I will do when it comes time to take these off and get new ones,   I was just wondering if anyone had gone through this with their kids and was it worth it??, did it help them walk any better or for longer??

 

Dana

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

From: Jackie Torres

To: MD-List@yahoogroups.com

Sent: Sunday, May 29, 2005 11:20 AM

Subject: Re: [MD-List] Serial Castings

Hy Dana:

My name is jackie and i am the mother of a 6 year old who has DMD.

and my question to you is how do we mom know about when is time,

for casting and why is so necessary for our boys,to get this done is

there ay alternative on what else to choose for helping them,get their

feet to 90 degree without the casting. please let me know a litttle about

this situation,because i want to know how to make the right the decision

when the time comes.

 

 

Thanks

jackie

Dana Miller <dana.miller@...> wrote:

Hi Joanne,

Actually after I wrote that post, we went to get the next set put on and he had actually gained more then expected range, she was really pleased, and we had taken the casts off a day early,, Tanner's not too impressed with having to wear them,, but this time we decorated them like spiderman boots so that helped, and also he got back his power chair which had been in the shop with a blown motor, and it was only 3 weeks old,, anywho,, so far so good.

 

Dana

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

From: Joanne & David

To: MD-List@yahoogroups.com

Sent: Friday, May 27, 2005 7:29 PM

Subject: Re: [MD-List] Serial Castings

Dana, I have a friend whose son did the serial castings.  I will ask her to write you about it.  She was happy with the improved range of motion in her young son's feet.  They had tightened quite a bit at a young age.  It's good to get the feet to 90 degrees.  

Joanne

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

From: Dana Miller

To: md-list@YahooGroups.com

Sent: Friday, May 27, 2005 7:59 AM

Subject: [MD-List] Serial Castings

Hi everyone,

 

I was wondering if anyone had any experience with Serial Castings, Tanner is on his second round of them and from what I am told it has already increased the range of his stretch in his feet and ankles, but he is very uncomfortable, and cannot walk unassisted at all, I managed ot talk him into this round but I am not sure how well I will do when it comes time to take these off and get new ones,   I was just wondering if anyone had gone through this with their kids and was it worth it??, did it help them walk any better or for longer??

 

Dana

Hi Joanne,

Actually after I wrote that post, we went to get the next set put on and he had actually gained more then expected range, she was really pleased, and we had taken the casts off a day early,, Tanner's not too impressed with having to wear them,, but this time we decorated them like spiderman boots so that helped, and also he got back his power chair which had been in the shop with a blown motor, and it was only 3 weeks old,, anywho,, so far so good.

 

Dana

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

From: Joanne & David

To: MD-List@yahoogroups.com

Sent: Friday, May 27, 2005 7:29 PM

Subject: Re: [MD-List] Serial Castings

Dana, I have a friend whose son did the serial castings.  I will ask her to write you about it.  She was happy with the improved range of motion in her young son's feet.  They had tightened quite a bit at a young age.  It's good to get the feet to 90 degrees.  

Joanne

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

From: Dana Miller

To: md-list@YahooGroups.com

Sent: Friday, May 27, 2005 7:59 AM

Subject: [MD-List] Serial Castings

Hi everyone,

 

I was wondering if anyone had any experience with Serial Castings, Tanner is on his second round of them and from what I am told it has already increased the range of his stretch in his feet and ankles, but he is very uncomfortable, and cannot walk unassisted at all, I managed ot talk him into this round but I am not sure how well I will do when it comes time to take these off and get new ones,   I was just wondering if anyone had gone through this with their kids and was it worth it??, did it help them walk any better or for longer??

 

Dana

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

From: Joanne & David

To: MD-List@yahoogroups.com

Sent: Friday, May 27, 2005 7:29 PM

Subject: Re: [MD-List] Serial Castings

Dana, I have a friend whose son did the serial castings.  I will ask her to write you about it.  She was happy with the improved range of motion in her young son's feet.  They had tightened quite a bit at a young age.  It's good to get the feet to 90 degrees.  

Joanne

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

From: Dana Miller

To: md-list@YahooGroups.com

Sent: Friday, May 27, 2005 7:59 AM

Subject: [MD-List] Serial Castings

Hi everyone,

 

I was wondering if anyone had any experience with Serial Castings, Tanner is on his second round of them and from what I am told it has already increased the range of his stretch in his feet and ankles, but he is very uncomfortable, and cannot walk unassisted at all, I managed ot talk him into this round but I am not sure how well I will do when it comes time to take these off and get new ones,   I was just wondering if anyone had gone through this with their kids and was it worth it??, did it help them walk any better or for longer??

 

Dana

Hi Brian,
I did send it to Pat.  And Thanks.  It was fun to write.  And fun to be
there.
Joanne



----- Original Message -----
From: <denger2@...>
To: <MD-List@yahoogroups.com>
Sent: Friday, May 27, 2005 7:22 AM
Subject: [MD-List] Advocacy Newsletter


>
> >
> >I wrote about the advocacy trip in my work's newsletter.  You can find
that
> >at www.partoparvt.org.  Once at the home-page, click on newsletter.
> >
> >Good to hear from you,
> >Joanne
> >
>
> Hello Joanne,
>
> Your article for the newsletter is excellent!  Have you forwarded a copy
to Pat Furlong?  I'm certain she would enjoy reading it.  Keep up the great
work.
>
> Brian Denger
> Maine
>
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----- Original Message -----

From: Kathleen Bennett

To: MD-List@yahoogroups.com

Sent: Friday, May 27, 2005 12:10 PM

Subject: Re: [MD-List] Scoliosis Surgery >>>>>>> Yonah

Yonah,

 

What a horrendous decision to have to make regarding a four year old.  I do not envy you and hope my experience will help you.

 

I have FSH muscular dystrophy.  Before the dystrophy was diagnosed, my clavicles were removed, which left nothing but my muscles to hold up my shoulders.  As my muscles weakened, my right shoulder fell and sat on the nerve center (the brachial plexus) to my right arm.  This caused excruciating, never-ending pain and I had to have a scapular fusion to correct the problem.

 

I was born and grew up in Miami.  When I was in high school in the '70s, scoliosis seemed to become an epidemic.  Nearly half of all my friends were diagnosed with it and either had to wear a brace for years and years and/or had to have Harrington rod surgery.  Every one of them saw Dr. Shufflebarger and his mentor (whose name I can't remember, sorry).  At that time, they had an office in exclusive Coral Gables and operated at Doctor's Hospital and Variety  Hospital. Dr. Shufflebarger's mentor retired, Variety Hospital became Miami Children's Hospital and the time came for my scapular fusion surgery.  I spent one year going to 18 different doctors - including the head of the Department of Neurology at Jackson Memorial - the University of Miami teaching hospital, where there was a muscular dystrophy clinic.  No one could give me any definite answers regading my surgery, dropped shoulder and/or scapular fusion.  A friend of ours from church who had two daughters who'd had surgery for scoliosis (both performed by Dr. Shufflebarger) heard of my problems, called and talked me into going to see Dr. Shufflebarger.  For some reason, I didn't really want to go see him but I was desperate.  I still thank God Mrs. Wright called and talked me into seeing Dr. Shufflebarger!  He is an unobtrusive, odd little man with a seldom seen bashful smile without airs - totally unimpressive; however, I grew to admire and adore this man with all my heart.  The first thing he did was put me in a full body cast.  He felt a body cast would emulate the effect of the scapular fusion surgery by pulling back my shoulder.  If his idea relieved my pain, he felt the surgery would work.  If not, he would not have performed needless MAJOR surgery on me.  A simple, yet genius idea!  It worked and six weeks later, he performed the actual surgery on me.  While I thought Dr. Shufflebarger's bedside manor was a bit lacking and I didn't like the way the residents who reported to him ran over him, I do believe he is the PREMIERE doctor for doing scoliosis surgery.

 

A couple years later, I had to have some of my wires removed because my body began to reject them.  Since my chest wall muscles had weakened and breathing had become more difficult, Dr. Shufflebarger did the surgery without general anesthesia or any type of muscle relaxers.  We talked while he did the surgery and I learned he had just come back from a month in South America where he volunteered his time and operated on people down there for free.  My admiration for him grew even more.

 

As Miami Children's Hospital grew, they pursued Dr. Shufflebarger to move his practice to MCH and operate there exclusively.  He did.  Also at MCH was the MDA clinic, which Dr. Shufflebarger also participated in.  During one of my follow-up visits, a doctor from California called.  This doctor was in the middle of surgery and called to have Dr. Shufflebarger guide him through placement of the rods.  This was not prearranged - the doctor got stuck in the middle of an operation and didn't know what to do!  Dr. Shufflebarger just shook his head and walked this man through the operation.  I've always said I was so glad I went to the doctor other doctors called and not vice versa.

 

I've had 16 operations and seen more doctors than I can even remember in the last 37 years of being ill.  I rarely recomend a doctor but I say to you that Dr. Shufflebarger is one of the BEST doctors I have ever known or heard of in my lifetime.  I placed my life in this man's hands and would do it again at anytime.  He is a sweet, kind, caring, ethical, professional, highly skilled, extremely knowledgable, conservative (not cut happy) orthopedic surgeon with 35+ years of practice specializing in scoliosis surgery.  I've seen at least a couple hundred doctors in my lifetime and would only say similar things about two of them.  Without a second's hesitation, I would urge you to follow Dr. Shufflebarger's recommendation.

I hope this helps in your difficult talk,

Best wishes,

Kathy

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

From: Dana Miller

To: md-list@YahooGroups.com

Sent: Friday, May 27, 2005 7:59 AM

Subject: [MD-List] Serial Castings

Hi everyone,

 

I was wondering if anyone had any experience with Serial Castings, Tanner is on his second round of them and from what I am told it has already increased the range of his stretch in his feet and ankles, but he is very uncomfortable, and cannot walk unassisted at all, I managed ot talk him into this round but I am not sure how well I will do when it comes time to take these off and get new ones,   I was just wondering if anyone had gone through this with their kids and was it worth it??, did it help them walk any better or for longer??

 

Dana

Dear Vikki:

I think we are arguing symantics more than science. Do you have any
definitive data (not assumption) to support your opinions? If so,
please point me to these papers.

What I am doing is transferring information from other disciplines
and diseases. Based on what I have gleaned from the literature these
last 5 years, the people who work in this field conduct "circular
reasoning." They suggest all sorts of physiomechanisms without a
shred of definitive data to support their hypotheses. Meanwhile kids
have suffered and died. Here we have a disease marker a full 5 to 8
years before symptoms appear and no one has even designed an
experiment that would determine why this is so. Doesn't this fact
bother you at least a little bit?

It is my feeling that inflammation is the key. For some reason
oxygen doesn't get into the tissues of concern. As a result, the
tissues break down. The resulting byproducts don't just disappear.
Does it really matter if they are filtered by the liver or by the
kidneys? So much tissue eventually breaks down that both organs are
likely overloaded and the byproducts end up circulating in the blood
and affecting other organs. These organs then become inflamed and
malfunction and subsequently fail. I don't know whether our
biosystem can be detoxified but it is a thought that needs
investigation. I can't find anyone that has made such a suggestion
in the literation. Prove me wrong with factual data and I'll
apologize profusely.

I am starting to get a complex. People keep on telling me that I am
wrong without a fact to support their way of thinking.

Arnold (PhD, Chemical Engineer)

--- In MD-List@yahoogroups.com, <hhjgreene@y...> wrote:
> Thank you Vikki!
>
> Holly
>
> Vikki Stefans <vstefans@g...> wrote:
> I'm not sure this concept is really being presented correctly. For
one
> thing, dystrophic muscle does not "decay" or rot exactly, the way
tissue
> outside of a living organism or like devitalized tissue in a
pressure sore
> or area otherwise deprived of blood flow would. When a great deal
of
> muscle breaks down acutely, aka rhabdomyolysis, the main component
is
> myoglobin, which must be handled by the kidney. It is possible to
have a
> kidney clogged with myoglobin and a very high fluid intake is used
to try
> to manage this when it occurs. It can occur with malignant
hyperthermia
> and I have one patient with a dystrophy who has had it upon heat
exposure,
> but it is not a very common event in general. The high "liver
function
> tests" actually do not result from liver activity at all but are
enzymes
> released as muscle cell breakdown or membrane leakage products as
well.
>
> I know we all wish there were real cures or greater benefits for
less side
> effects out there for ourselves or our kids, but I just don't
think coffee
> enemas are likely to help anyone, or that the body needs anything
extra
> like that to clear any remains or byproducts of muscle cell
breakdown.
> Body cells die all the time and the body takes care of that with
various
> enzymes, other cells, etc. I can't think of an intracellular
component
> that would truly be "toxic" to any other organ other than a very
high
> myoglobin release all at once as described above.
>
> Sherry Rogers writes primarily about external toxins, and Dr.
Gonzalez
> advocates a diet, detoxifcation, and use of high dose pancreatic
enzymes
> primarily as an adjunct to pancreatic cancer treatment. He has
registered
> a clinical trial for this, which is excellent, as pilot and animal
studies
> were unblinded and uncontrolled (based on historical controls.)
See
> http://www.dr-gonzalez.com). Applicability to muscular dystrophy
would not
> seem to be implied by this work - dystrophic muscle is nothing at
all like
> cancerous tissue- and the enzyme could be the essential component
of the
> plan in any event.
>
>
> 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 Thu, 26 May 2005, Arlene  wrote:
>
> > The specialist don't know exactly what or how to do very much
about
> > MD. A lot of money has been spent on research.  They have never
> > mentioned toxins, I don't know what toxins would have to do with
it.
> > Arlene
> >>
> >> My hypothesis is:
> >>
> >> The lack of dystrophin in the skeletal muscle tissue is
abnormal and
> >> eventually causes the muscle to slowly decay and finally die.
Obviously
> >> the funding agencies are trying to replace the dystrophin but
it is a
> >> very long term project that doesn't look like it'll help
today's
> >> generation especially the older individuals. Forty years of
research
> >> have proven this fact.
> >>
> >> It is my guess that the lack of dystrophin is not the immediate
> >> problem. What really is the immediate problem is the release of
toxins
> >> (poisons) produced when the muscle starts decaying. Today's
generation
> >> could immediately be helped if drugs and/or methodologies are
invented
> >> or found that will neutralize these toxins.
> >>
> >> As these toxins (poisons) are released the immune system reacts
as if
> >> these toxins were foreign bodies thus causing inflammation and
> >> autoimmune reactions. Likely these toxins also enter the cells
of the
> >> diaphragm and/or lungs and/or heart and other systems causing
them to
> >> lose effectiveness, efficiency and subsequently fail. My
support for
> >> this hypothesis is that autopsies have proven that cancer
tumors don't
> >> kill the person. It is the toxins produced by the decay of
these cancer
> >> cells that eventually kill the individual. Also the people who
suffer
> >> muscle atrophy probably also produce toxin since their muscle
tissue is
> >> also decaying.
> >>
> >> Steroids obviously reduces the inflammation and autoimmune
response
> >> but, eventually, there effectiveness is overwhelmed by the
buildup of
> >> toxins over an extended period of time. There just has to be
better
> >> agents. Treatment must begin as soon as the kids are diagnosed.
So far
> >> we only have the cocktail and steroids.
> >>
> >> Finally inflammation must be monitored by continually measuring
C-
> >> reactive protein. It is a rather inexpensive blood test that
can
> >> determine the precise dosage of steroids that should be
administered to
> >> your child. Speak to your clinician so he could balance your
child's
> >> condition with the precise dose of steroids. IOW, too much
steroids is
> >> just as bad as too little.
> >>
> >> It is also likely that the kids have elevated liver enzymes
because the
> >> liver filters out these toxins that are produced as a result of
the
> >> muscle disease. Many physicians including Dr. Nicholas Gonzalez
of NY
> >> and Dr. Sherry Rogers of Sarasota suggest that coffee enemas
are
> >> effective in purging the toxins from the liver. Milk thistle
and
> >> acupuncture may also be effective. BTW, purging the liver from
these
> >> toxins might be an effective treatment for the older
individuals of
> >> today's generation.
> >>
> >> Arnold
>
>
>
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