open the floodgates - new to the group
digitalchild
and so i'm not sure if i should jump up and down with joy or slump my
shoulders from defeat. y'see, until this past saturday (8/29), 'Tourette's
Syndrome' was not part of my vocabulary. and now...well, it makes an awful lot
of sense.
when i was 17, i developed a vocal tic and ended up going to a therapist (of
the psychological variety...not the physical kind). if i remember correctly,
i would inhale sharply while constricting the air passage. when it finally
gave way, a loud 'gasping' kind of sound would be produced. it was
uncomfortable, sometimes painful, embarassing...and i couldn't stop myself
from doing it. at any rate, it sucked because of the obviously completely
anti-social implications <grin>. so the therapist decided that this was a very
physical manifestation relating to issues with my father that i subconsiously
felt needed to be aired (which is a another whole entire can of worms that
would probably be better suited for,
say...'alt.support.dysfunctional.families...but i digress <g>). in other
words, the vocal tic was actually the grievances with my father that needed to
be voiced. so i aired my grievances, and amazingly (and much to my relief)
the vocal tic went away.
welp, i'm 25 now and find that since then i have developed a whole battery of
fun and interesting tics that tend to 'break the surface' in times of stress.
or when i'm overtired. or when i'm being creative (more on this later). up
until this past saturday, i contended that it was those damn 'inner
grievances' wanting to be heard. that is, until my girlfriend asked me if i
knew i was twitching. okay, so that's a slightly uncomfortable situation, and
i passed it off with a well rehearsed comment. later that evening she asked
again, and in the comfort of the covers and the intimacy of the darkness, i
told her about going to see a therapist and about the vocal tic and how it
finally subsided. she suggested a neurological explanation, rather than a
psychological one, and told me about TS. after reading the clinical
definition in a medical reference, i am now convinced that this is the best
explanation for my tics. i also read a good number of the posts on this NG
and could relate to nearly every one of them. i would characterize my
situation as 'mild', though it is still completely maddening and
socially...ummm, well...unacceptable.
i told my girlfriend that i was consciously and actively tic-ing (or
'twitching'), though i had no control over it. a real paradox, right? well,
it's similar to when you have an itch and try not to scratch it. you may be
successful for a short time, and then either you scratch it, or you feel as if
you want to jump right out of your skin! i have a number of movement tics that
tend to be confined to the above-the-chest region, and a vocal tic that sounds
like a hiccup.
i would characterize my situation as 'mild' because my tics tend to relate
mainly to stress. however, times of creativity also seem to bring them on.
i'm a website/graphic designer here in manhattan, and i find that when i'm
really onto a creative streak, my vocal tic really intensifies. very strange.
i'm also a classically trained pianist, and find that playing also brings on tics.
i seem to fit the loose pattern of TS sufferers: i'm above average
intelligence, tend to be ambidextrous (though i think that has more to do with
studying piano), have a great eye for measuring things by sight, and am adept
with words.
i have plenty of questions (curable? hereditary?) but i think i need to go to
sleep now (it's late).
thank you for reading this
josh
digita...@earthlink.net
Kathryn A Taubert
digitalchild wrote in message <35ED0633...@earthlink.net>...
>aw jeez...i think i'm in the right place here...
>and so i'm not sure if i should jump up and down with joy or slump my
>shoulders from defeat.
Welcome Home, Josh.....and IMO, you should be jumping up and down with joy.
You've finally got The Answer, and many of us know EXACTLY how you feel. I
was 38 when I found "It". And it spun me off in a direction that has taken
me lots of fascinating, wonderful, rewarding, and yes...FUN places.
You are one of us.
You belong here.
You belong everywhere.
There is NOTHING wrong with you.
You're merely "different."
Vive la differance!
(Randall...spell check???)
developed a vocal tic and ended up going to a therapist (of
>the psychological variety...not the physical kind)
Yep. Been that drill too.
so the therapist decided that this was a very
>physical manifestation relating to issues with my father that i
subconsiously
>felt needed to be aired
Yep. My original DX, among many, many others, was "repressed psychological
conflict".....oh gawd.....the only conflict I had was my knowing that was
WRONG, and not being able to prove it .
(which is a another whole entire can of worms that
>would probably be better suited for,
>say...'alt.support.dysfunctional.families...but i digress <g>).
Listen, there ain't no such thing as a "functional" family. That whole
concept was dreamed up by some group in some psychiatric think tank as a
"goal" for families to achieve. It became the "standard," and everybody
began to think it was the "norm."
Bull roar.
in other
>words, the vocal tic was actually the grievances with my father that needed
to
>be voiced. so i aired my grievances, and amazingly (and much to my relief)
>the vocal tic went away.
Because the stress involved in your relationship made your pre-existing tics
worse. They went away because that's what tics DO.
But they ALWAYS come back with TS, in one form or another.
or when i'm being creative (more on this later).
Oh yeah...MUCH more......there is LOTS to say about THAT one........
:-)
in the comfort of the covers and the intimacy of the darkness, i
>told her about going to see a therapist and about the vocal tic and how it
>finally subsided. she suggested a neurological explanation,
Wonderful. WONDERFUL. Take that lady out to dinner and a show, Josh. And
don't forget the Rose.
Make it a dozen, no less.
:-)
>i would characterize my situation as 'mild' because my tics tend to relate
>mainly to stress. however, times of creativity also seem to bring them on.
>i'm a website/graphic designer here in manhattan, and i find that when i'm
>really onto a creative streak, my vocal tic really intensifies. very
strange.
> i'm also a classically trained pianist, and find that playing also brings
on tics.
Yep. Here's another example of "it" all.
By the way, howdy neighbor. My husband and I live 'upstate from you, in 'the
country.' (CT)
>i seem to fit the loose pattern of TS sufferers: i'm above average
>intelligence, tend to be ambidextrous (though i think that has more to do
with
>studying piano), have a great eye for measuring things by sight, and am
adept
>with words.
Yep.
>i have plenty of questions (curable?
nope, but some of us don't WANT to be cured till we find out what ELSE we
might lose in the process too..
hereditary?)
Yep...except, perhaps in a FEW cases...
but i think i need to go to
>sleep now (it's late).
Don't lose any more sleep over this 'un. Your life is now gonna' take on a
whole 'nother dimension.
And hang on for the ride.
You, My Friend, have found your way "home."
>
>thank you for reading this
>josh
and thank YOU for writing it....
KAT in CT
digitalchild
> And it spun me off in a direction that has taken
> me lots of fascinating, wonderful, rewarding, and yes...FUN places.
KAT in CT,
many thanks for your warm and kind welcome - it is certainly appreciated...
:-)
josh
Kathryn A Taubert
Tom Benedict
> Kathryn A Taubert wrote:
>
> > And it spun me off in a direction that has taken
> > me lots of fascinating, wonderful, rewarding, and yes...FUN places.
>
> KAT in CT,
> many thanks for your warm and kind welcome - it is certainly appreciated...
> :-)
> josh
Oh, and KAT rocks the house. She's a great person, and a fantastic friend.
Tom
HopNmommy
>>
>>> And it spun me off in a direction that has taken
>>> me lots of fascinating, wonderful, rewarding, and yes...FUN places.
>>
>>KAT in CT,
Okay, tell me. Exactly what would I gain, at this point in my life, by gaining
official dx's from a neurologist? I can see where it might help my kid's
understanding of theirgenetics, but they pretty much already know what their
genetics are all about, except
for the youngest one (he's 12). I'm missing the point of why it's necessary to
find out what I have when I already know who I am...what am I missing here? I'm
reading a bunch of adult's getting dx'd for what? I know now pretty much what
my neuro-mix is so why pay for an official bunch of acronyms? Besides it would
really tick me off if some neurologist got them wrong, I already know what they
are all about now. That knowledge might have been of some benefit years ago,
but I just don't see any advantage to it now. Sometimes I'm thick as a brick.
HopNmommy
Haejintien
>gaining
>official dx's from a neurologist?
> I know now pretty much what
>my neuro-mix is so why pay for an official bunch of acronyms? Besides it
>would
>really tick me off if some neurologist got them wrong, I already know what
>they
>are all about now. That knowledge might have been of some benefit years ago,
>but I just don't see any advantage to it now
>HopNmommy
>
>
I agree with you, for myself, personally, that is. I first heard of TS when I
was about 20, and finally, a few years later, was brave enough to investigate
it and have since determined that TS is what I have (I was so thrilled to
finally have a reason for my tics and such, I was afraid to find out I may not
have it, so I was afraid to really research it for a long time). I also see no
need to pay some neurologist to tell me what I already know. And if he were to
tell me I DIDN'T have TS, I'd just go find one who would.
Dominique :)
Kathryn A Taubert
HopNmommy wrote in message
<199809070715...@ladder03.news.aol.com>...
>>>Kathryn A Taubert wrote:
>>>
>>>> And it spun me off in a direction that has taken
>>>> me lots of fascinating, wonderful, rewarding, and yes...FUN places.
>>>
>>>KAT in CT,
>
gaining
>official dx's from a neurologist?
I didn't say that you NEEDED a "formal" DX. What I DID say was that
"knowing" what I had made the difference. And I knew it before the DX. The
latter was just to prove it to myself that what I read, was correct.
Remember that was in 1984, and there wasn't NEARLY as much info on TS as
now. I'd spent 30 years KNOWING I wasn't 'crazy' and couldn't wait to have a
member of the same profession that tried to convince me I WAS tell me that I
WASN'T. My parents had lived with undeserved guilt for that same period of
time, and my formal DX was also my "gift" to them, for having always been
there for me.
They were of the generation that NEEDED a doctor's "say-so" for it to be
"official." (But they reared ME to "question authority," God bless them.)
I'm missing the point of why it's necessary to
>find out what I have when I already know who I am...what am I missing here?
Only the fact that a formal DX is NOT necessary if you are comfortable with
the knowledge that you have, no medical/educational accommodations are
necessary. IN fact, I can suggest a reason or two why you might NOT want a
formal DX. (insurance problems currently, for one.)
I'm
>reading a bunch of adult's getting dx'd for what?
Nope. You're assuming that DX means having a clinician TELL you what you
already know. I didn't say that.
I got my DX because I wanted to learn more from the experts at that time
(Drs.Arthur and Elaine Shapiro of Mt. Sinai Tic Disorder Clinic, NYC, and
participate in a research project.) But I already KNEW I had TS.
I read about it in a magazine. It fit me to a "t."
Sometimes I'm thick as a brick.
>HopNmommy
Nope. Not at all. You're asking exactly the right question.
The question is this: if you already KNOW what you have, don't need ANY
treatment, accommodations in education or the work place, or further
information that you can't already get on your own, there really ISN"T much
point to having a clinician TELL you these things.
If I were in your shoes at this point in my life, I may or may not get the
formal DX. And if I'd known the difficulty I was going to have getting
traditional INSURANCE after my DX, I'd have doubly hesitated to get it. (I
got that one resolved...after about 8 years....).
It's a matter of personal choice. Some will want to get the physician's "ok"
cause they want it, and that 's that. And they SHOULD have that right.
Others won't want to do it, cause, in their cases, what's the point??
It's up to you. It's just that simple.
KAT In CT
Bob Geller
>
> >Okay, tell me. Exactly what would I gain, at this point in my life, by
> >gaining
> >official dx's from a neurologist?
>
> > I know now pretty much what
> >my neuro-mix is so why pay for an official bunch of acronyms? Besides it
> >would
> >really tick me off if some neurologist got them wrong, I already know what
> >they
> >are all about now. That knowledge might have been of some benefit years ago,
> >but I just don't see any advantage to it now
>
> >HopNmommy
> >
> >
>
> I agree with you, for myself, personally, that is. I first heard of TS when I
> was about 20, and finally, a few years later, was brave enough to investigate
> it and have since determined that TS is what I have (I was so thrilled to
> finally have a reason for my tics and such, I was afraid to find out I may not
> have it, so I was afraid to really research it for a long time). I also see no
> need to pay some neurologist to tell me what I already know. And if he were to
> tell me I DIDN'T have TS, I'd just go find one who would.
>
> Dominique :)
Being DXed makes you available for all types of assistance to regain
your life and dignity......... My own life and dignity was stolen by Dr
Richardson of Tulane and my family helped bury it, so I am using the
assistance to regain my life, but will NOT abuse the system I am working
to get out of. BUT being offically DXed is the way to begin this long
process..........Bob
Kenziek
>traditional INSURANCE after my DX, I'd have doubly hesitated to get it. (I
>got that one resolved...after about 8 years....).
Why did insurance company give you problems with a TS dx? I mean, its not
fatal, not always debilitating... what was the point?
Wondering as we are just now purchasing insurance,,,, a little late (typical
<G>)
Karen K.
BlessedBy2
><G>)
>Karen K.
Karen, Because you are still in non-diagnosis land and purchasing new
insurance, it might be a really good idea to call the TSA and order all of the
brochures (there are several) dealing with the insurance issue BEFORE you make
a decision about what company to go with. :-)) BB2
Vicki Hill
>Okay, tell me. Exactly what would I gain, at this point in my life, by gaining
>official dx's from a neurologist? I can see where it might help my kid's
>understanding of theirgenetics, but they pretty much already know what their
>genetics are all about, except for the youngest one (he's 12). I'm missing the point of why it's necessary to
>find out what I have when I already know who I am...what am I missing here?
I first thought a formal diagnosis wasn't important. I thought my son
had TS, the therapist thought he had TS, and the psychiatrist thought
he probably had TS. I presumed that was adequate.
But then I had to hospitalize my child...and the hospital staff
claimed they saw no tics - just a very wiggly, hyperactive kid who
jumped up every few minutes and ran to his room for a minute or two,
then returned. I asked if they ever followed him or asked him WHY he
ran to the room; they said no. (Duh...he was running off to be alone
to release the tics!) So they treated him as if he was nuts, I was
nuts...and chalked it up to 'family problems'. They had him doing
therapy stuff about what was wrong with his relationship with his
parents; when he said nothing was wrong, they told him he was 'in
denial'. I got him out of there as fast as I could and took him to a
TS specialist. After 90 minutes the TS specialist said, "OF COURSE
this child has TS." There. I've got it in writing now. I don't want to
ever have to face an uninformed doctor again. THAT is why I'm happy to
have the diagnosis in writing.
Theoretically, one shouldn't HAVE to get the formal diagnosis...but
there are still far too many uninformed doctors in this world.
Vicki H.
Kathryn A Taubert
>Theoretically, one shouldn't HAVE to get the formal diagnosis...but
>there are still far too many uninformed doctors in this world.
>
>Vicki H.
Yep. I do believe that HopnMommy was wondering why adults, however, "needed"
a formal DX if they already knew and had everything they needed/wanted.
For kids, now THAT'S a different story. As you so well know...
KAT In CT
Kathryn A Taubert
Kenziek wrote in message
<199809071643...@ladder01.news.aol.com>...
>>And if I'd known the difficulty I was going to have getting
>>traditional INSURANCE after my DX, I'd have doubly hesitated to get it. (I
>>got that one resolved...after about 8 years....).
>
>Why did insurance company give you problems with a TS dx? I mean, its not
>fatal, not always debilitating... what was the point?
(typical
><G>)
>Karen K.
Because the underwriters were convinced that I was "right up there" with
Parkinson's, Alzheimer's, Huntington's Chorea...(I actually read than in an
application that listed those WITH TS.)
They figured I was a BAD risk.
They denied my app. for private health insurance based upon that
misinformation.
I investigated about a half dozen of them.
I resolved the problem now...(a whole nother thread), and have traditional
indemnity insurance with an A+ rated company at a reasonable premium. And TS
was NOT an exclusion. BUt I DID have to educate the underwriters about what
TS is and isn't. And it wasn't easy. BEcause I ALSO had to make certain that
my medical record didn't contain any inaccuracies (which it DID), before I
authorized it to be sent.
One word answer to your question: misinformation.
KAT In CT
Vicki Hill
<KATA...@prodigy.net> wrote:
>Yep. I do believe that HopnMommy was wondering why adults, however, "needed"
>a formal DX if they already knew and had everything they needed/wanted.
>
>For kids, now THAT'S a different story. As you so well know...
Yes, I realized she was asking why adults might 'need' a formal DX. I
suspect the same kind of problem COULD happen to an adult also, who
needed sudden hospitalization with docs who didn't know the adult
before the hospitalization. And an adult could face disbelieving
doctors just as I did. It didn't matter that I was knowledgeable on
the subject of TS and could point out the specific tics; the doc
didn't believe me without a formal DX.
There is clearly a trade-off: the paper to have PROOF in the event it
is necessary, versus the possible work/insurance issues of leaving the
diagnosis unwritten.
Vicki H.
Kathryn A Taubert
>There is clearly a trade-off: the paper to have PROOF in the event it
>is necessary, versus the possible work/insurance issues of leaving the
>diagnosis unwritten.
>
>Vicki H.
You got that right, Vicki. It is a tradeoff. The question, I guess, is the
relative chance of how the individual adult is "doing" with his/her TS. If
it's like mine is now, or apparently hers is, the issues of "formal DX"
doesn't matter as much. Were I in a hospital needed care and some clinician
didn't 'believe' my "movements" were TS, I'd be able to deal with it.
I've had a similar problem arise with my mother, who has unDXed spasmodic
dysphonia. It's a neurological disorder which affects the vocal folds.
People with SD can't speak very well. Their voices are either whisper-ey or
raspy, depending upon the specific nature of their SD. My mother, at times,
HAS no voice, especially under stress. Her whisper-ey voice is hard to hear,
understand at times. It's plainly difficult for her to speak.
You can see how this might be difficult for her, at 85, in a hospital or
doctor's office, not able to speak very well.
A formal DX of SD, however, is an uncomfortable procedure which requires
scoping out the vocal folds with instruments inserted through the mouth and
down the throat. She really doesn't NEED this, since her symptoms are QUITE
clear, classic, and readily observable. Nor would she submit to such a
procedure.
We have this DX IN HER MEDICAL record, even though it has not been formally
DXed. The doctors whom she has seen have been willing to accept this at the
"say-so" of family. Recent surgery, the anesthesiologist was very interested
in asking specific questions about it, wanting to rule out any other problem
that might have resulted from PREVIOUS surgery. She was quite willing to
accept the SD DX.
It was important that she know this, because my mother was under
sedation...NOT a general anesthetic...and could tell when she might "need
more."But since she couldn't speak very well..the anesthesiologist HELD HER
HAND DURING THE ENTIRE PROCEDURE," to be alert for any change in her
feelings/condition.
My point is this: a formal DX isn't necessary in this case because we have
doctors willing to ACCEPT what knowledgable family members have told them.
My mother accepts the DX as well. She's a classic, textbook case of it. And
NO one has questioned the lack of formal DX at this point. Perhaps due to
her age and general physical condition, nobody wants to put her through the
testing procedures just to tell us what we already know.
Adults with TS could, conceivably, find themselves in this same position. My
solution is find yourself a clinician who is willing to work WITH you as an
"equal partner" in your DX, RX, etc.
KAT in CT
Vicki Hill
<KATA...@prodigy.net> wrote:
>We have this DX IN HER MEDICAL record, even though it has not been formally
>DXed.
The info on my son's history of tics and the fact that I, the
therapist, and the psych. thought he had TS was in the medical record
that the hospital psych. had read. She still didn't 'buy' that he had
TS.
I would hope that doctors dealing with clearly physical conditions
would accept the patient's or family's information that the person had
TS. In our case, the psych. was looking for a mental condition and
didn't buy into his having a neurological condition. (Although she did
admit he needed to eventually be seen by a neuro as well, but refused
a referral to a TS specialist because she said she saw no signs of
TS.) And when the doc is looking for a mental condition, information
from the patient or an informed adult family member can be blown off
as 'part of the problem' instead of being 'part of the solution'.
> The doctors whom she has seen have been willing to accept this at the
>"say-so" of family. Recent surgery, the anesthesiologist was very interested
>in asking specific questions about it, wanting to rule out any other problem
>that might have resulted from PREVIOUS surgery. She was quite willing to
>accept the SD DX.
Good for these doctors!
>Adults with TS could, conceivably, find themselves in this same position. My
>solution is find yourself a clinician who is willing to work WITH you as an
>"equal partner" in your DX, RX, etc.
I totally agree with you here, Kat. I ran into a problem in my son's
situation because his was an EMERGENCY hospitalization - where we
didn't have the luxury of time to work with the doctor that we knew
was aware of the TS.
I had read of situations happening like ours, but I had always
thought, "Surely not in this day and age!" I told the folks at the
hospital my son's history and that we all thought he had TS. I gave
them a list of specific tics they would see. I educated some nurses
who had never seen a TS case before. And I STILL ran into this
problem...in 1996.
If an adult with TS chooses not to seek a formal diagnosis, I would at
least suggest getting one of the cards from TSA explaining about TS,
and carrying it in the wallet. That way, if you are ever in an
accident or in a situation of emergency hospitalization, info stating
that you had TS would be available to the medical professionals. It
might avoid the need for unnecessary testing or questioning. Just a
thought. : - )
Vicki H.
Kathryn A Taubert
>least suggest getting one of the cards from TSA explaining about TS,
>and carrying it in the wallet. That way, if you are ever in an
>accident or in a situation of emergency hospitalization, info stating
>that you had TS would be available to the medical professionals. It
>might avoid the need for unnecessary testing or questioning. Just a
>thought. : - )
>
>Vicki H.
And a good one. Especially if the symptoms are clearly observable, and could
raise "issues" about "other problems."
I had knee surgery a few years ago...and mentioned to the anesthesiologist
my TS out of curiosity as much as anything, about any possible "issue" with
general anethesia (I've been through this before...but BEFORE my TS DX, so
was curious about any info. available.).
The guy was very interested....did a search and came up with ONE short
article re: this issue....bottom line, nothing to worry about for me. He was
so excited ("Ive never had to deal with this one before!!" He was a man in
his late 50's at least, and the surgery was in Montana....far and away from
any TSA conferences.....sigh....).
But he represented the kind of physician we all hope for: willing to
learn...search.....didn't claim to have ALL the answers......I came out of
that situation as enthused as he was-made me feel QUITE comfortable.
:-)
KAT in CT
HopNmommy
>>If an adult with TS chooses not to seek a formal diagnosis, I would at
>>least suggest getting one of the cards from TSA explaining about TS,
>>and carrying it in the wallet. That way, if you are ever in an
>>accident or in a situation of emergency hospitalization, info stating
>>that you had TS would be available to the medical professionals.
>And a good one. Especially if the symptoms are clearly observable, and could
>raise "issues" about "other problems."
>
>I had knee surgery a few years ago...and mentioned to the anesthesiologist
>my TS out of curiosity as much as anything, about any possible "issue" with
>general anethesia
sliced and diced before and it's never been an issue to my knowledge. Might be
the issue regarding general anaethesia and why I need so much more than normal
though. And why I react so badly to the stuff, I hadn't thought of that one.
That might just explain allot in that area. I have told doctor's I just tend to
react very violently semi-under various anesthetics and I have woke up and
freaked out one anaesthetist. Talk about odd looking, look up and see a panic
stricken anaesthetist while you gag on a hose down your throat. I heard the
doctor semi-yelling "get her under, now!" This sounds gross, but I wouldn't let
the dentist give me shots to get my roots scraped. I just react too oddly even
to novacaine. I told him, if I need it I'll grab your arm, otherwise just do
it. I didn't grab his arm because I didn't want to feel like crap after the
procedure. They all have depressed me for no apparent reason afterwards too.
Why in the world didn't I think about this before?<geez> I knew I was dyslexic
and I even knew I was OCish why didn't I think about the neurological stuff and
anaesthesia? I wonder if there are now better reports about TS+ stuff and
anaesthesia? I don't react real good with the stuff and I do have some serious
side effects afterwards too. Boy am I glad none of my kids have had to have
anaesthesia. Sandy did for her capped tooth and come to think of it she did
react sort of oddly too. She was jacked up on Tylenol 3's afterward. I blamed
the codeine for her odd reaction, maybe it wasn't just the Tylenol 3's maybe
the novacaine wasn't cool for her either. Well, I have all sorts of things to
think about now.
HopNmommy
HopNmommy
> So they treated him as if he was nuts, I was
>nuts...and chalked it up to 'family problems'. They had him doing
>therapy stuff about what was wrong with his relationship with his
>parents; when he said nothing was wrong, they told him he was 'in
>denial'. I got him out of there as fast as I could and took him to a
>TS specialist. After 90 minutes the TS specialist said, "OF COURSE
>this child has TS." There. I've got it in writing now. I don't want to
>ever have to face an uninformed doctor again. THAT is why I'm happy to
>have the diagnosis in writing.
years. He is Nuts. There is no way in the world I would allow anyone to "treat
him as if he is nuts"! I expect professionals to act like professionals and if
they don't, their superiors can and will hear about it in writing .Lawyers can
and do protect the rights of mental patients. He has been in state mental
institutions on numerous occassions. Also, many other types of hospitals. No
offense intended, people will not treat you in any particular way, unless you
let them.That is not true of every country, but it is true in this one. No one
has ever questioned what I tell them regarding my brother, mother, six kids, or
grandkids in this country or others. I don't carry documentation on any of
them. I have fired a couple idiots. I have also had my brother moved from one
facility. I'm not a victum type. I've already faced lots of uninformed doctor's
regarding my brother, mother, and kids. That won't be a new thing for me,
should it ever come up about any dx or un-dx'd thing about me. My daughter's
wouldn't take any stuff from anyone about me if I were unconscious, of that I
am real sure.
Exactly what state allows a hospital to keep your child against your will in a
non-life threatening situation? I'll bet if you check you could have walked out
right then and there with your kid. What in the world do you mean
they treated you as if you were nuts? Do you have to carry documentation on
what this kid is allergic to or do they just ask you? Were you screaming or
hysterical or something? I'm not understanding this and want to understand it.
Like I said, I'm thick as a brick sometimes! HopNmommy
Vicki Hill
>Vicky, I'm guardian to my paranoid schizophrenic brother and have been for
>years. He is Nuts. There is no way in the world I would allow anyone to "treat
>him as if he is nuts"! I expect professionals to act like professionals and if
>they don't, their superiors can and will hear about it in writing .Lawyers can
>and do protect the rights of mental patients. He has been in state mental
>institutions on numerous occassions. Also, many other types of hospitals. No
>offense intended, people will not treat you in any particular way, unless you
>let them.That is not true of every country, but it is true in this one. No one
>has ever questioned what I tell them regarding my brother, mother, six kids, or
>grandkids in this country or others. I don't carry documentation on any of
>them. I have fired a couple idiots. I have also had my brother moved from one
>facility. I'm not a victum type.
I totally agree; I'm not a 'victim-type', either. <smile> I checked
him into the hospital in an emergency situation on a Thursday night.
On Friday, the psych. said she would arrange for him to be seen by a
neuro. Of course I didn't expect much progress over a weekend, during
which time I found myself explaining TS to several on the staff. I saw
the psych. again Monday; that was when it became clear that she
discounted even the possibility of TS and was refusing a referral to a
neuro specializing in TS. So I called the specialist myself, explained
the situation, and got my son out of that hospital immediately.
I did get even <grin>. I explained the whole story to the insurance
company before the psych had a chance to file her claim with the
erroneous diagnosis. And I sent the insurance company the TS diagnosis
from the specialist. Later I learned that the insurance company
refused to pay the psych's bill - until she changed the diagnosis to
TS!!!! ROFL (By the way, this WAS monetarily significant to me, as the
insurer would pay a significantly lesser percentage for a mental
health diagnosis than for the neurological TS diagnosis.)
> Do you have to carry documentation on what this kid is allergic to or do
>they just ask you? Were you screaming or hysterical or something?
I had another experience about a year later when my son started having
seizures. The first pediatrician who saw him was a fill-in for the
regular one. A few days later, when the decision was made to
hospitalize him for a seizure evaluation, I was handed the packet of
reports to carry to the hospital with him. I was astounded to read
that the fill-in pediatrician had written it up as 'probably OCD;
pushy mother thinks he is having seizures'! Yea, right. Even a
top-notch neuro now thinks the lad has a seizure disorder and has him
on anticonvulsant.
No, I'm not a screamer or hysterical. In fact, my son's therapist has
pointed out that I may appear TOO calm and knowledgeable in the crises
situations, leading the docs not to comprehend that it is truly a
crisis.
I do have confidence in the med pro's - but I also realize that many
in general medicine or in other specialties have little or no
knowledge of TS/TS+. Those who will acknowledge that they don't know
much about TS, and that I may know more than them about this one small
area - I can work with very well. But there are a few that DON'T
acknowledge that there is ANYTHING they don't know, and refuse to
listen. I have little use for those.
Vicki H.
HopNmommy
> So I called the specialist myself, explained
>the situation, and got my son out of that hospital immediately.
>I did get even <grin>. I explained the whole story to the insurance
>company before the psych had a chance to file her claim with the
>erroneous diagnosis. And I sent the insurance company the TS diagnosis
>from the specialist. Later I learned that the insurance company
>refused to pay the psych's bill - until she changed the diagnosis to
>TS!!!! ROFL (By the way, this WAS monetarily significant to me, as the
>insurer would pay a significantly lesser percentage for a mental
>health diagnosis than for the neurological TS diagnosis.)
> I was astounded to read
>that the fill-in pediatrician had written it up as 'probably OCD;
>pushy mother thinks he is having seizures'! >Yea, right. Even a
>top-notch neuro now thinks the lad has a >seizure disorder and has him
>on anticonvulsant.
Do hope you have a NEW Pediatrician! Wonder if you just happened to spill some
ink on that line what they could have possibly done about that statement being
missing?
> I may appear TOO calm and knowledgeable in the crises
>situations, leading the docs not to comprehend that it is truly a
>crisis.
Yeah, been accused of that one myself. So, I changed to a more shakey upset mom
to suit them. Appears to make them feel better.
>But there are a few that DON'T
>acknowledge that there is ANYTHING they don't know, and refuse to
>listen. I have little use for those.
>
>Vicki H.
Okee Dokee Gotcha! I thought it sounded like they not only didn't listen to
you, but didn't even show you the respect one deserves just for being a mom! I
understand now. Thanks! HopNmommy
Vicki Hill
>> I was astounded to read that the fill-in pediatrician had written it up as 'probably OCD;
>>pushy mother thinks he is having seizures'! Yea, right. Even a top-notch neuro now
>> thinks the lad has a seizure disorder and has him on anticonvulsant.
>Do hope you have a NEW Pediatrician! Wonder if you just happened to spill some
>ink on that line what they could have possibly done about that statement being
>missing?
The problem pedi. was filling in while the regular one was on
vacation. The regular one is wonderful and has been very willing to
learn and work with us, the psych. and the neuro. AND, the regular one
has now 'educated' the fill-in pedi. - who NOW takes me with every bit
as much seriousness as the regular pedi. <g> In fact, the whole office
staff there has learned about PANDAS as a result of my son and watches
him like a hawk to avoid further strep infections, as do I.
But lines like that DO make me really worry about the govt. idea to
consolidate med information into master medical files. Misinformation
can do a lot of damage...and I'll bet a lot of TS patients have
misinformation in their files as a result of early misdiagnoses,
doctors unfamiliar with TS, etc. No thanks - I wouldn't want ANYONE to
see a master medical information file.
Vicki H.
HopNmommy
>But lines like that DO make me really worry about the govt. idea to
>consolidate med information into master medical files. Misinformation
>can do a lot of damage...and I'll bet a lot of TS patients have
>misinformation in their files as a result of early misdiagnoses,
>doctors unfamiliar with TS, etc. No thanks - I wouldn't want ANYONE to
>see a master medical information file.
>
>Vicki H.
mess that would be, I wouldn't sweat that happening in our lifetime. They still
haven't figured out how to track child-support when they have parent's claiming
the kid's on their income tax! Govt. and Consolidate now that's an interesting
concept, yeah right sure, when pigs fly! HopNmommy
Kathryn A Taubert
>see a master medical information file.
>
>Vicki H.
Boy, agreed, 100%. I've already had a problem because of that kind of thing.
Took me YEARS to straighten it out. Worse than a credit report snafu.
Vicki. you and I gotta' stop all this "agreein' all the time. Folks are
gonna' get the wrong impression..
:-))
KAT in CT
Kathryn A Taubert
Vicki Hill wrote in message
<1E4EDF77756076EF.1DA05AD9...@library-proxy.airnews.ne
t>...
>>Vicki. you and I gotta' stop all this "agreein' all the time. Folks are
>>gonna' get the wrong impression..
>>
>>:-))
>>KAT in CT
>
>
>Vicki
Right ON, Lady..
:-)))
KAT in CT
Vicki Hill
HopNmommy
Whoa! How does one shut the floodgates? I have this feeling that you two should
spend some time alone or what we have here is a failure to communicate.
HopNmommy