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Re: Digest Number 8

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  • 8 months later...
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Hi, fellow listmembers,

I subscribe to the digest mode of all mailing lists I am on, including this

one. When I received my email of this digest number 8, I discovered that my

entire forwarded message was not included, so the only people who received it

were those who subscribe to the regular mode, and not the digest mode.

I am not too computer literate, and I do not know how to resend it so that it

would appear in the digest mode. I am sure there are list members who would

like to be able to read it. Would one you computer geniuses out there in

cyberland kindly find a way to post my entire message to this list so it

would appear to all list members in its entirety??? Other wise, I fear that

I will be bombarded with requests to send it individually directly to every

interested person. Help me please.

Ira

iramfine@...

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  • 8 months later...

Dear Jessie:

Just hang in there. While I know it is difficult to think of the

future, the shots will take less of a toll on you as you continue. Just

try to rest when you can, keep to a schedule that YOUR body is

requiring, ie: nap when you are tired, and realize that you will have

periods of energy and periods of exhaustion. Just try to figure out when

you are getting close to being exhausted, and stop just before. Force

yourself to eat, even if it's Ensure, or Carnation Instant Breakfast.

Some day you'll be able to look back at this and it will not be so bad.

Good luck. Marty

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  • 2 weeks later...

MB:

Thanks for the advice on 's meds....yes, we know that Clonidine has to be

decreased SLOWLY, as it is a blood pressure med....I didn't know that higher

doses of Melatonin caused the opposite effect.....whew! Don't know what's

going on....all I know is that is NOT calming down on ANY of these

combinations...although for a while the Adderal and Clonidine together at

school made him more focused and calm.....yeah, for about two weeks!! He

always seems to " level off " very quickly...we still haven't found the " right

combo " of anything yet.

I sure hope this Doc knows what he's doing....he's the Medical DIrector over

Child Psychology at our local Children's Hospital!!! He is an M.D. in Child

Psych., so he should know what he's doing!!!

Maybe we should start to cut down on the Clonidine since it's not doing

anything anyway....at first, he fell asleep on the playground at

school.......we didn't want THAT either, but he adjusted and now we're at the

MAX and it's not doing ANYTHING now......

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  • 6 months later...
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In a message dated 8/4/00 12:35:00 PM Eastern Daylight Time,

Scoliosis Treatmentegroups writes:

> My neurosurgeon says that a very extensive revision

> surgery is in my future, as my fusion has failed. Any comments, or similar

> stories?? He's going to send his report on me to my primary Dr. so I will

> be very interested in seeing what he has to report on me.

Three brief comments in response:

(1) I have had my own pain discredited, and suspect this is fairly common for

scoliosis patients. One neurologist who examined me did so in a positively

assaultive manner, pushing my body into positions which were excruciating. I

have severe flatback and could barely walk when he finally let me off the

examining table. He, of course, was oblivious. Then he wrote an

unflattering and critical summary of my condition which contained innumerable

errors. One of my other doctors talked to my referring internist about the

callous treatment this neurologist had inflicted on me, and I hoped someone

might speak to him or otherwise take measures to protect other people from

his brutal approach. The internist, however, apparently just replied that

this was a common experience for pain patients, to be manhandled or

physically hurt by consulting physicians.

(2) As for being lectured to about your nonexistent or less-than-serious pain

by people who do not live inside your body, this never stops being a

crazymaking experience--especially when you need something from the person

labeling you, whether a prescription or a respectful medical record that will

be helpful to future professionals who treat you or assess you. (I don't know

where you live, but you may well have the right to request and review your

own medical report from the therapist -- why not ask, and be persistent? You

can object if it contains inaccuracies or unsubstatiated judgments about you.)

I recently received a report from a specific doctor, this time one who had

been involved in performing surgery on me, which was throughly riddled with

distortions and outright inaccuracies. Apparently this is SOP for some docs

-- cover yourself from Day #1 with any and every patient who might ever want

to sue--that is, with every patient you ever see --by making the patient look

like a " crock " or a hysteric. I decided NOT to send it along to new doctors

whose advice I was seeking.

Fortunately some health care professionals these days are less eager to risk

a different kind of lawsuit, i.e., one seeking damages for defamation. When

your therapist forwards a report on you, he is " publishing it, " in legal

terms -- and it had better be reasonably accurate.

(3) Anyway, I was much interested in your mention of a neurosurgeon. I

myself was referred by a couple of specialists (including Sami Rosenberg,

M.D., mentioned previously in the newsletter now moderated by Racine)

to a particular speciailist who was a neurosurgeon. I never followed up on

it -- the esteemed neurosurgeon kept leaving for China or otherwise coming up

with reasons to cancel my attempted appointments -- but have beern curious

ever since as to whether some neurosurgeons actually perform revision

surgery, specifically for flatback syndrome? I know only about orthopedists

doing this surgry, but conceivably a neurosurgeon might have a refreshing

perspecive or a new approach. Any more info. you'd care to provide would be

fascinating.

Eliana

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  • 1 year later...

Hi Everyone..I'm just now subscribing to the Digest. My son is PDD-NOS and has extrememly limited language capacity, along with hyperactivity (whew, boy!). He's lately developed a peculiar behavior which I can only attribute to a peculiar STIM -- he pokes his hand down his pants, presses his finger to his anus, and then smells the finger repeatedly (yuck!). He doesn't have any parasites that I know of and doesn't do this to scratch in the area. He's in special Ed here in Pearland, Tx and his teacher has tried substituting other odors, but to no avail. Of course this is becoming a problem at school as well as daycare because it represents a health hazard to other kids. Nothing seems to work. Any suggestions, anyone? Is this a common one? I can (almost) deal with the wall-running and the finger activity, but this one is not only gross but unsanitary. Help?

Thanks,

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What about overalls?

Re: Digest Number 8Hi Everyone..I'm just now subscribing to the Digest. My son is PDD-NOS and has extrememly limited language capacity, along with hyperactivity (whew, boy!). He's lately developed a peculiar behavior which I can only attribute to a peculiar STIM -- he pokes his hand down his pants, presses his finger to his anus, and then smells the finger repeatedly (yuck!). He doesn't have any parasites that I know of and doesn't do this to scratch in the area. He's in special Ed here in Pearland, Tx and his teacher has tried substituting other odors, but to no avail. Of course this is becoming a problem at school as well as daycare because it represents a health hazard to other kids. Nothing seems to work. Any suggestions, anyone? Is this a common one? I can (almost) deal with the wall-running and the finger activity, but ! this one is not only gross but unsanitary. Help? Thanks,

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Hi,

I don't know how old or big your son is, but my nephew who is now 4.5 years old and 45 some odd pounds, wears Gerber Onsies undershirts. He used to always have his hands down his pants, mostly for scratching. With the onsies he can't get into his diaper/underwear's as they dome at the crotch.

The fit of the Gerber Onsies is quite large, so the pounds on the package can be misleading.

Beth

Re: Digest Number 8

Hi Everyone..I'm just now subscribing to the Digest. My son is PDD-NOS and has extrememly limited language capacity, along with hyperactivity (whew, boy!). He's lately developed a peculiar behavior which I can only attribute to a peculiar STIM -- he pokes his hand down his pants, presses his finger to his anus, and then smells the finger repeatedly (yuck!). He doesn't have any parasites that I know of and doesn't do this to scratch in the area. He's in special Ed here in Pearland, Tx and his teacher has tried substituting other odors, but to no avail. Of course this is becoming a problem at school as well as daycare because it represents a health hazard to other kids. Nothing seems to work. Any suggestions, anyone? Is this a common one? I can (almost) deal with the wall-running and the finger activity, but this one is not only gross but unsanitary. Help? Thanks,

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In a message dated 10/20/01 9:38:01 AM Pacific Daylight Time,

aljw@... writes:

<< He's lately developed a peculiar behavior which I can only attribute to a

peculiar STIM -- he pokes his hand down his pants, presses his finger to his

anus, and then smells the finger repeatedly (yuck!). He doesn't have any

parasites that I know of and doesn't do this to scratch in the area. He's in

special Ed here in Pearland, Tx and his teacher has tried substituting other

odors, but to no avail. Of course this is becoming a problem at school as

well as daycare because it represents a health hazard to other kids. Nothing

seems to work. Any suggestions, anyone? Is this a common one? >>

What have you tried so far? How frequently does he do it?

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Hi -

Have you posted this question on other lists? It seems I have seen this question

posted elsewhere very recently.

If not, some of the responses I read were a) possible pin worms? B) yeast infection.

Other than that, I don't have a clue.

Let us know what you find out!

Penny-------------------------------------------------------- " Just remember this: Plenty of Horsepower, No Traction " - R. S. on

" If a man does not keep pace with his companions, perhaps it is because he hears a different drummer.Let him step to the music he hears, however measured or far away. " --Henry Thoreau

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