Touchy subject

[Guest guest]

Oops! LOL... I didn't mean to start an abortion

debate! Funny... My opinion on abortion is an entirely

different book! I was not speaking of abortion, so

let's not assume I am pro-life. You can only assume

that I am pro-life-after-birth, from my previous post.

)

I'm not familiar with the Lattimer case. But I would

imagine that there are plenty of other things

involved. Such as the child's ability to interpret

what is happening with her (esp in medical cases)and

understand and cope with such things. As well as how

clearly she is able to communicate (for example, with

one girl in which I work with, there is doubt if she

understands how to use her communication board or if

she simply understands that " if I push this button it

speaks " instead of " if I push this button it says

'Yes' for me. " ... does she mean " yes " or does she

just enjoy the sound when she pushes that button).

Along with a lot of other things.

Don't think I came up with all of this myself. One of

my best friends passed away a year ago from AIDS.

After being hit with one infection after another, he

became increasingly depressed and decided to

discontinue all of his treatments and end his life.

His mother took him to court stating that he was

unable to make such decisions because his depression

impaired him. I was convinced that his virus was too

much for him to handle, and he should be able to die.

I so believed this, that I volunteered to be a witness

in court. Indeed, his mother won and Kev was forced to

take his meds, along with antidepressants. In my

entire relationship with Kev, I had never seen him as

happy to just be able to live life as I did after he

started antidepressants. He started to do speeches on

what it's like living with AIDS and published an

article in POZ magazine. Unfortunately, Kev passed

away from crypto (a fungus on the brain, found more

often in people with impaired immune systems) when he

just started to truly live his life. Since then, I

find it hard to trust people when they said " I want to

die " or " it was in her best interest to die. "

Oy! That is... another issue.

As for technology. I feel that the good outweighs the

bad, tremendously. Today's technology has saved my

father from cancer five times (the last time just

months ago), it allowed you to have your son, and

saved so many other lives. This technology can only

improve. There are so many more healthy preemies today

than there ever was. So many more cancer victims able

to spare body parts. And so many lives have been

saved. Improving on technology, in my opinion, will

only provide opportunity for less suffering (I am

speaking in general terms, not just DS).

Again, I ramble. And to answer your question... I have

more friends my age than friends older than me...

believe it or not... I am not anymore mature that a

lot of people my age. (I'm 19!)

Cheers,

Sara

--- <lauranra@...> wrote:

> Hello Sara;

> I read your messages and thought about them

> very carefully. I have always struggled with my

> views on abortion. For the most part, I have been

> anti-abortion but thought that in some situations

> abortion was necessary (although I would never have

> a abortion myself). I remember talking to one mom

> (from the list) about her feelings of

> abandonment (she was given up for adoption) and that

> she, herself would choose abortion over

> adoption....I was SHOCKED. This is the world we

> live in.

> Sara, I loved what you wrote and you have

> helped me to make the decision to disagree with

> abortion altogether. You are wise beyond your years

> and you and I both know how uncommon that is. Do

> you have trouble getting along with others your age,

> since they are probably not in tune to your

> interests (because of immaturity)?

> My problems come more with technology and man

> interfering. I will tell you right now that I know

> for a fact that Dr. DeVeber did NOT create

> Amniocentesis for the purpose of terminating

> pregnancies, Infact he was hoping to be able to

> identify problems and help create solutions before

> the child was born. My family knows Dr. DeVeber on

> a personal basis and he is one of the founders of

> the 'Right to Life' group...now called 'the DeVeber

> Institute'. My father sits on the board.

> I think for the most part, every child/person

> should be given the chance to live BUT there are

> some people that don't want to live, otherwise there

> would never be such a thing as suicide. What about

> that Lattimer (sp?) case where the father killed his

> disabled child, he did it out of LOVE. He was

> taking away her pain, he says she wanted to die. He

> believes (and so do many others) that he did the

> right thing.

> Sara, if we lived in a world full of people

> that thought like you do, then euthanasia would

> never be thought of. Unfortunately we don't. There

> are alot of people that would do anything to avoid

> having a disabled child. Just looking in today's

> newspaper, a mom (its still under criminal

> investigation) may have thrown her baby off of

> Vancouver's Capilano Suspension Bridge...a 46 metre

> drop. The 18 month old girl has down syndrome...she

> miraculously survived.

>

> Well, I had better stop; I am just kinda rambling on

> now;

>

>

[Guest guest]

>Oops! LOL... I didn't mean to start an abortion

>debate! Funny... My opinion on abortion is an entirely

>different book! I was not speaking of abortion, so

>let's not assume I am pro-life. You can only assume

>that I am pro-life-after-birth, from my previous post.

Yikes, I think I had better keep my mouth shut from here on out!! I will

end it with quoting what my father just said today, " Society thinks its a

sin to kill a born child, but applauds someone who aborts only weeks before

the child is born. "

, believing that life starts at conception NOT at birth.

[Guest guest]

OK... to each his/her own.

, Nicala and are in the CDSS Calendar??? I

saw them on the web site! REALLY cute!!

Cheers,

Sara

--- <lauranra@...> wrote:

> From: " " <lauranra@...>

>

>

>

> >Oops! LOL... I didn't mean to start an abortion

> >debate! Funny... My opinion on abortion is an

> entirely

> >different book! I was not speaking of abortion, so

> >let's not assume I am pro-life. You can only assume

> >that I am pro-life-after-birth, from my previous

> post.

>

>

> Yikes, I think I had better keep my mouth shut from

> here on out!! I will

> end it with quoting what my father just said today,

> " Society thinks its a

> sin to kill a born child, but applauds someone who

> aborts only weeks before

> the child is born. "

>

> , believing that life starts at conception NOT

> at birth.

>

> ---------------------------

[Guest guest]

a,

I have a son who has achondroplasia. . . and certainly some of the children

with achondroplasia have problems with their elbows, but also, they can have

wrist pain and arm pain due to compression in the cervical junction of the

neck. . . . I would not jump to do a surgery just because a doctor

recommended it. . . .if he is not familiar with achondroplasia and the

aspects of the medical problems . . . . he may do more harm than good by

trying to lengthen a bone in the forarm. . . .

The parents need to do some research and get another opinion, preferably from

such a specialist that is experienced and knowledgeable with achondroplasia .

.. . not someone who sees a few, but someone who has seen hundreds . . . .

Trudy (mom to Caleb 14, achondroplasia, hydro, seizure disorder)

[Guest guest]

I had a problem years ago in my right wrist which made doing anything for a

while quite painful. It turned out once I got it checked out I had a calcium

deposit. I got it taken care of by going to a doctor.

If the pain doesn't seem to go away or is severe I would have it checked out

by a doctor and or specialist.

Helen

[Guest guest]

In my opinion ONLY, if the mother didn't get that surgery done, it

would be a form of neglect. It's not like she's bringing her daughter

to have that surgery to be taller, for cosmetic reasons. I would get

the surgery done to prevent more problems in the future.

I personally haven't had that issue before. But this is what I would

do if it happened.

a

> I am writing on behalf of my best friend whose 9 year old daughter

is

> a dwarf. She is a member of the LPA but doesn't have internet

access

> and wanted opinions on this new situation she is being faced with.

> Stacey, her daughter, has had pain in her wrist for quite some

time,

> and they recently found out that it's being caused by one of the

> bones in her forearm growing faster than the other. They were told

> that if the shorter bone wasn't lengthened, Stacey could lose all

> function of her hand and wrist. My friend is very nervous about

> putting her daughter through this procedure, and wouldn't consider

> lengthening otherwise. Has anyone been faced with this?

>

> Thank you for your time.

[Guest guest]

Hold on, a!! It's not clear just what kind of doctor proposed this

surgery for this child -- way too many times doctors who are not totally

familiar with dwarfism can't even read the xrays properly. Sad but true,

as many here can attest.*

Only if a true dwarfism specialist proposed this surgery would I believe it

_might_ be necessary for this particular child. A dwarfism specialist is

not a doctor who's treated or seen just a few LPs -- it's a doctor who has

treated hundreds and hundreds AND hundreds of them! For all we know, this

LP child might just be experiencing the usual wrist/hand pain from writing

too long homework assignments. There's not nearly enough info for any of

us to help, except to say " get another opinion " or " see a dwarfism

specialist " .

Vita

*Like the time Stefan fell as a toddler and a radiologist told us that

_all_ of his fingers were broken. The reality was that the radiologist

didn't know what a diastrophic hand looked like and _none_ of Stefan's

fingers were broken! Fortunately, the E.R. doctor's brother was achon and

he told us not to believe the radiologist and, instead, have Dr. Kopits

check it out. No broken fingers after all, of course.

At 08:54 PM 3/26/01 -0000, a wrote:

>In my opinion ONLY, if the mother didn't get that surgery done, it

>would be a form of neglect. It's not like she's bringing her daughter

>to have that surgery to be taller, for cosmetic reasons. I would get

>the surgery done to prevent more problems in the future.

>I personally haven't had that issue before. But this is what I would

>do if it happened.

>

>a

>

>

>> I am writing on behalf of my best friend whose 9 year old daughter

>is

>> a dwarf. She is a member of the LPA but doesn't have internet

>access

>> and wanted opinions on this new situation she is being faced with.

>> Stacey, her daughter, has had pain in her wrist for quite some

>time,

>> and they recently found out that it's being caused by one of the

>> bones in her forearm growing faster than the other. They were told

>> that if the shorter bone wasn't lengthened, Stacey could lose all

>> function of her hand and wrist. My friend is very nervous about

>> putting her daughter through this procedure, and wouldn't consider

>> lengthening otherwise. Has anyone been faced with this?

>>

>> Thank you for your time.

>

>

>

>

>Looking to unsubscribe? Don't e-mail the list! Just send a blank e-mail to

dwarfism-unsubscribe

>

>

[Guest guest]

I was just going by the information that was mention. I would get a

second opinion...and if they had tried everything, and nothing was

working, then I would go for surgery.

a

<<Sorry if this comes up twice...>>

[Guest guest]

Bev,

Too funny, thanks for the lighter side. I hadn't thought of stating it that

way. I've just said don't move like that and he has no idea what I mean.

Loriann

Wife to Dewight

Mom to , 11 years, Down Syndrome, PDD-NOS and Celiac Disease.

, 2 years and Strong Willed

Both homeschooled.

[Guest guest]

I am a bit uncomfortable posting this but my doctor doesn't seem

impressed with this problem.

Here goes. Bladder incontinence. I have experienced two different

episodes of actually wetting my bed. I have seen on spine injury

websites that later stages of some spine injuries can effect the

bladder.

I was not in a deep sleep when it happened or groggy from my

medicines. Once it happened an hour after I fell asleep and I awoke

in the middle of it.

Does anyone know what is going on? I am frightened by this and the

doctor just wrote it down when I told him about it.

[Guest guest]

If this doc isnt going to help you see another . this is a serious problem ..

fraft13 <fraft13@...> wrote: I am a bit

uncomfortable posting this but my doctor doesn't seem

impressed with this problem.

Here goes. Bladder incontinence. I have experienced two different

episodes of actually wetting my bed. I have seen on spine injury

websites that later stages of some spine injuries can effect the

bladder.

I was not in a deep sleep when it happened or groggy from my

medicines. Once it happened an hour after I fell asleep and I awoke

in the middle of it.

Does anyone know what is going on? I am frightened by this and the

doctor just wrote it down when I told him about it.

__________________________________________________

[Guest guest]

Suzy,

thank you for posting this. When I participated on this list last year there seemed to be much more discussion related to alternative treatment....one of the reasons I chose this group. I too am not a candidate for treatment and I need to find a different approach.

When I put hopeforhepc.com in I get a North Carolina hospital program (?) What am I missing? I'd love to find a group that discusses Berkson's protocol and more. Thanks for being there

Sherry

>>>>> am sooo glad that alternative options are being discussed. Since I do not plan to treat at my age, information is hard to come by. I did find Dr Berkson on The Aussie forum several years ago, but alternatives were taboo on many forums or dismissed as "snake oil" or simply a sentence saying "There are some alternatives, BUT" Alternatives are not THE answer, but neither is conventional. It would be wonderful if something were THE answer that works for all. That just has not happened yet. Found another website called hopeforhepc.com today. Uses primarily Dr Berkson formula with some other stuff added.<<<<

[Guest guest]

Hi Sherry,

The correct address is alternative hope for Hep. Sorry!! Not sure the site is

active, but she lists what she has taken. Also, healthyheppers lists all the

alternative methods I've heard about and info on them. There is a paper on Dr

Burt Berkson there or you can google his name and find lots on him. Or email me

direct and I'll send a bunch of stuff I have in my files. Need to try to set up

a file for him here, but don't know how. Dr B is currently into LDN (low dose

naltrexone)for Hep C as well.

SuziQ

>

> Suzy,

> thank you for posting this. When I participated on this list last year there

seemed to be much more discussion related to alternative treatment....one of the

reasons I chose this group. I too am not a candidate for treatment and I need to

find a different approach.

>

> When I put hopeforhepc.com in I get a North Carolina hospital program (?) What

am I missing? I'd love to find a group that discusses Berkson's protocol and

more. Thanks for being there

> Sherry

>

>

>

> >>>>> am sooo glad that alternative options are being discussed. Since I do

not plan to treat at my age, information is hard to come by. I did find Dr

Berkson on The Aussie forum several years ago, but alternatives were taboo on

many forums or dismissed as " snake oil " or simply a sentence saying " There are

some alternatives, BUT "

>

> Alternatives are not THE answer, but neither is conventional. It would be

wonderful if something were THE answer that works for all. That just has not

happened yet. Found another website called hopeforhepc.com today. Uses primarily

Dr Berkson formula with some other stuff added.<<<<

>

[Guest guest]

Thanks Suzy,

hmmmm......LDN is being used for diabetes as well. I guess it's being tried for just about everything these days. I first looked into it for my daughter who has Crohn's. Has anyone here, or have you actually tried the LDN protocol?

Thank you for the website correction..I will check it out and I will google up some more info on Dr. B. Don...can't you help Suzy to put some Berkson files on this group page? I looked thru all the files and links to see if there was anything more....but no luck.

I will also email you direct Suzy...I had alot of info a year or so ago but it all got lost.

Sherry

>>>The correct address is alternative hope for Hep. Sorry!! Not sure the site is active, but she lists what she has taken. Also, healthyheppers lists all the alternative methods I've heard about and info on them. There is a paper on Dr Burt Berkson there or you can google his name and find lots on him. Or email me direct and I'll send a bunch of stuff I have in my files. Need to try to set up a file for him here, but don't know how. Dr B is currently into LDN (low dose naltrexone)for Hep C as well. <<<<<