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, thank you so much for taking the time to introduce yourself. Your

research and knowledge will be very useful to all of us! We have a 3-month

old who had an adverse reaction to the HEP B (1st dose at 3 weeks of age)

and then made the decision to not continue with vaccinations. Thank you so

much for sharing your experience and again your knowledge!

in Washington

an introduction

Hi, My name is Nagel. I have been a nurse for 9 years and a school

nurse for the last 3 years. I have had much experience with vaccines. I

was in the military for 5 years in which I blindly gave over 3000

immunizations all the while thinking that I was doing what was " best " for

the troops getting the vaccine. I have blindly told parents for the last 3

years " be wise, immunize " thinking that I was doing what was best for my

students. My son is 4 years old and has had all his first 2 year shots

because I blindly immunized him think I was doing best for him. Well about

3 months ago a fellow co-worker (the health coordinator for my school

district) showed me some information that a parent had given her regarding

immunization. That parent had told my co-worker that she didn't want her

to think she was an " uniformed radical religious nut " (or something to the

effect) for choosing to exempt her children from immunizations. She

introduced us to Dr. Leonard Horowitz book " Emerging Viruses : AID's &

Eboli. Accident, Nature, or Intentional " . This was just the tip of the

ice berg. We have done some major research into vaccinations and

reactions. The real turning point for me was correlation between DTP and

SIDs (sudden infant death syndrome). Recent studies show that normal

healthy children with normal healthy breathing patterns developed apnea

(absence of respiration) and dyspnea (difficulty breathing) for up to 2

weeks after receiving their DTP. Findings are that children tend to die

of SIDs at 2 months, 4 months, and 6 months. This is also the time when

the first 3 DTP's are administered. Japan had one of the highest SIDs

rates in the world, they noticed the connection between DTP and SIDs and

stopped giving their infants DTP's until they were 2 years of age and

reduced their SIDs rate by 95%. These results are too dramatic to ignore.

They have also made leaps in discovering a link between Asthma and

Pertussis vaccinations.

I had a nephew who died of SIDs 20 years ago when he was 4 months old,

just several days after receiving his second DTP, at this time it was

written off as just another unexplained death of a healthy 4 month old

baby. I noticed in my own child after his 3rd DTP that he had dyspnea at

night and had one mild seizure while sleeping, when I asked my doctor, he

had told me it was mere coincidence and that my child should be all right.

Luckily, (my son) had nothing more severe happen. My only regret

is that I didn't have this information 4 years ago.

My son has had his first 2 years of immunizations, but I can guarantee

they are his last. This is the only medical procedure performed in which

the parent is informed of possible adverse reactions and not given the

choice as to whether they really want to take these risks. I, for one,

after researching vaccines do not want my child immunized. I feel that in

our day and age we have the technology to be making clean vaccines, but

unfortunately that doesn't seem to be happening. Here are a few other

things I have learned. Since 1979 every polio case in the united states

was caused by the polio vaccine. Every year between 12,000 and 14,000

adverse vaccine reactions are filed with the FDA and the FDA estimates

these figures only represent 10 percent of true damage being done. Most

vaccines are cultured in animal organs and contain live viruses, aluminum,

mercury, and formaldehyde (all carcinogens). Between 1990 and 1997, the

U.S. government spent more than $802 million compensating parents for brain

injuries and deaths inflicted on their children by mandated vaccines.

Other countries have called for moratoriums on there vaccines, but the

U.S.A. continues to deny there is even a problem. We are advanced enough

society that we should be able to make vaccines safe, but until that time I

choose to not have my child vaccinated Now that you have heard my long

winded story, I am sure you are sorry you asked for an introduction.

Thanks,

Nagel

<< File: ATT00001.html >>

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Hi ,

My name is Jacki and I run the vaccineinjuriesonelist group.

I read your e-mail and wondered if you would like to join our list.

My son was injured by a DTP vaccine and many of the members of our list have

children injured by many of the other vaccines including the HEP B. I hope

your child is well and healthy and you certainly made the right decision. If

your interested, sign up!

Jacki in NJ

an introduction

>

>Hi, My name is Nagel. I have been a nurse for 9 years and a school

>nurse for the last 3 years. I have had much experience with vaccines. I

>was in the military for 5 years in which I blindly gave over 3000

>immunizations all the while thinking that I was doing what was " best " for

>the troops getting the vaccine. I have blindly told parents for the last 3

>years " be wise, immunize " thinking that I was doing what was best for my

>students. My son is 4 years old and has had all his first 2 year shots

>because I blindly immunized him think I was doing best for him. Well about

>3 months ago a fellow co-worker (the health coordinator for my school

>district) showed me some information that a parent had given her regarding

>immunization. That parent had told my co-worker that she didn't want her

>to think she was an " uniformed radical religious nut " (or something to the

>effect) for choosing to exempt her children from immunizations. She

>introduced us to Dr. Leonard Horowitz book " Emerging Viruses : AID's &

>Eboli. Accident, Nature, or Intentional " . This was just the tip of the

>ice berg. We have done some major research into vaccinations and

>reactions. The real turning point for me was correlation between DTP and

>SIDs (sudden infant death syndrome). Recent studies show that normal

>healthy children with normal healthy breathing patterns developed apnea

>(absence of respiration) and dyspnea (difficulty breathing) for up to 2

>weeks after receiving their DTP. Findings are that children tend to die

>of SIDs at 2 months, 4 months, and 6 months. This is also the time when

>the first 3 DTP's are administered. Japan had one of the highest SIDs

>rates in the world, they noticed the connection between DTP and SIDs and

>stopped giving their infants DTP's until they were 2 years of age and

>reduced their SIDs rate by 95%. These results are too dramatic to ignore.

> They have also made leaps in discovering a link between Asthma and

>Pertussis vaccinations.

> I had a nephew who died of SIDs 20 years ago when he was 4 months old,

>just several days after receiving his second DTP, at this time it was

>written off as just another unexplained death of a healthy 4 month old

>baby. I noticed in my own child after his 3rd DTP that he had dyspnea at

>night and had one mild seizure while sleeping, when I asked my doctor, he

>had told me it was mere coincidence and that my child should be all right.

> Luckily, (my son) had nothing more severe happen. My only regret

>is that I didn't have this information 4 years ago.

> My son has had his first 2 years of immunizations, but I can guarantee

>they are his last. This is the only medical procedure performed in which

>the parent is informed of possible adverse reactions and not given the

>choice as to whether they really want to take these risks. I, for one,

>after researching vaccines do not want my child immunized. I feel that in

>our day and age we have the technology to be making clean vaccines, but

>unfortunately that doesn't seem to be happening. Here are a few other

>things I have learned. Since 1979 every polio case in the united states

>was caused by the polio vaccine. Every year between 12,000 and 14,000

>adverse vaccine reactions are filed with the FDA and the FDA estimates

>these figures only represent 10 percent of true damage being done. Most

>vaccines are cultured in animal organs and contain live viruses, aluminum,

>mercury, and formaldehyde (all carcinogens). Between 1990 and 1997, the

>U.S. government spent more than $802 million compensating parents for brain

>injuries and deaths inflicted on their children by mandated vaccines.

> Other countries have called for moratoriums on there vaccines, but the

>U.S.A. continues to deny there is even a problem. We are advanced enough

>society that we should be able to make vaccines safe, but until that time I

>choose to not have my child vaccinated Now that you have heard my long

>winded story, I am sure you are sorry you asked for an introduction.

>

>Thanks,

> Nagel

> << File: ATT00001.html >>

>

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

>Get involved. Share your thoughts!

>

>Join the ONElist Weekly Survey. Go to homepage for details.

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  • 2 years later...
Guest guest

Kati's mom:

Welcome to the group. Has your psychiatrist considered any other SSRIs besides

Luvox and Paxil? I know that sometimes it takes a while to find the " right " one

for an individual.

My son, Luke, is almost 9. We've known what to call his OCD for about a year

and a half, but I can look back and see the symptoms to as early as 3 years old.

I wanted to ask you (and the group) how you handle Kati's condition with her

close friends, boyfriend, co-cheerleaders, etc. We are very open about Luke's

condition with him and so far with family and close friends. Since the OCD can

cover up Luke's own personality sometimes with a meltdown or fixation, I feel

the need to explain his behavior to his friend or friend's mother. It seems

like it would be better for them to be aware that Luke has this condition, which

is at times obvious and makes him out of control. I get especially concerned

about this if Luke is going to someone else's house instead of playing at our

house, even though he can usually " hold in " or suppress most of his major OCD

worries when in front of other people where he is self conscious.

I'm pretty mixed on this. I mean, I know how I feel, but I was wondering if

others have tried talking about it and/or not talking about it (by that I mean

informing), and if so, what kinds of reactions you've received from your child's

friends, peers, other parents, etc.

The biggest part of me wants Luke to never feel like he should be ashamed or

have to try to hide his OCD. I want him to accept the condition, but accept

nothing less than the best treatment. I feel like the way we view his condition

now, and the way we handle it will likely be the way he handles and views it as

an adult. Since OCD does not appear to be going away, I want Luke to be

comfortable dealing with it (like diabetes, epilepsy, etc.). He is very

outgoing, confident, expressive verbally. Therefore, at this time he is very

comfortable talking about his OCD/ADD, but I wonder sometimes how comfortable

others are hearing about it.

I look forward to reading your responses.

Warmly,

in Missouri (Luke's mom)

P.S. Those of you with children who write in on the OCD Kids Support Group have

the most awesome, grounded, and thoughtful kids! We really enjoy getting mail

from the group. I'm very thankful for it, and so is Luke. One thing I've

notice about a condition like OCD is that an OCDers personality tends to be so

compassionate for others and so sensitive to another's pain. I've always

admired this quality in my son.

An introduction

I've been lurking for awhile, and thought it was time to introduce

myself and my daughter, Kati. She is 15 and has had OCD probably

since she was 2. At that time, she had numbers obsessions (and was

terrified of the Count on Sesame Street!) and trich. We actually

took her to a psychiatrist at that time, and he diagnosed OCD, but

told us he didn't think he could do much with such a young child. He

advised us to just think of her as a child with a wonderful but

overactive imagination, but that later we might want to look into

therapy and medication. At about age 9 she had an acute " attack " of

OCD that lasted a couple of months. We had just moved, she hurt her

knee doing gymnastics and was on crutches, and then she got a " flu-

like " virus. Soon she had contamination issues, so that it took

hours to change clothes, and she could only wear one or two outfits.

There were certain doors she couldn't walk through, and she had to

turn in circles before she could walk through others or down certain

stairs. This attack eventually went away without treatment, and

there were only minor remnants (a particular door, for example) that

weren't too onerous.

About a year and a half ago, she hurt her hand (broke a small bone)

and couldn't do gymnastics for a couple of months. The OCD came back

with a vengeance. Numbers, doors, touching, scrupulosity....it was a

nightmare. Her doctor put her on Luvox, which helped a little at

first, and then the insurance co. refused to pay for it until she had

a trial with Paxil. The Paxil sent her over the edge--severe panic

and anxiety, greatly increased symptoms, ending up in the ER because

she " wanted to die " she felt so bad. We got her back on Luvox, and

the dr. said to double the dose, from 25 mg to 50 mg after a couple

of weeks. Same thing--panic, sleeplessness....we had to go back to

25 mg and s-l-o-w-l-y increase.

She's now taking 50 mg Luvox, spent a year in CBT/ERP therapy, and is

doing a lot better. Still a few remnants--the numbers 3 & 6 still

cause her trouble sometimes (can't go to church on the third Sunday

of the month, or 3 weeks in a row, or certain dates, for example),

but much better.

The Luvox does seem to make her manic and oppositional, which causes

some problems in school occasionally. For a while, she was hanging

out with some kids that caused me concern, and I had to really watch

her social life, because she seemed to have NO sense! (these were

boys who had driver's licenses and cars....and she's a VERY cute

girl, so you can see my worry!)Things are a bit better now...she has

a very nice boyfriend whose mother is quite protective, and her other

friends seem more appropriate. She's very active in sports

(gymnastics and cheerleading) and theater, so her schedule is very

full. That seems to help the mania, but it's hell on getting

homework done! We're really doing a balancing act there.

Our biggest concern right now is her math class. She's consistently

done 1-2 hours of homework in Algebra I a night--more than all her

other subjects combined--and she's failing. She seems to understand

the work at home, but often doesn't finish tests or makes foolish

errors. It looks like she'll have an F for the year. I've been in

touch with the teacher and with her case manager (she has a 504 plan)

on many occasions, and NOTHING has been done to help her. We're

having a meeting Monday morning about the situation. I think the

tests are not a fair indicator of her understanding, but doubt I can

convince the teacher to evaluate her any other way. I'm planning to

insist the F is removed from her transcript and see if she can obtain

the credit in some alternate way (if I can figure out what that would

be!) Any ideas? Kati feels she has been treated unfairly, that she

already understands the math, and she's pretty unwilling to accept

tutoring, a testing facilitator, taking the tests in a different

environment, or " any of that SPED stuff " . SPED has a bad reputation

at her school, and she is actually gifted in ability (even in math!)

so I understand her feelings, although I think some of those

accomodations could make a difference for her.

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Katismom,

Welcome!

My middle daughter was offered a 50% pass in math last year. The

teacher realized that she knew her material, but was having

difficulties completing the excersises. He monitored her work for

content, not answers, and felt that she deserved the 50%.

Perhaps this is an option to add to the 504??

Advocacy is the key here, I think!

take care, wendy, in canada

-------------------------------------------------------------

We're having a meeting Monday morning about the situation. I think

the tests are not a fair indicator of her understanding, but doubt I

can convince the teacher to evaluate her any other way. I'm planning

to insist the F is removed from her transcript and see if she can

obtain the credit in some alternate way (if I can figure out what

that would be!)Any ideas? Kati feels she has been treated unfairly,

that she already understands the math, and she's pretty unwilling to

accept tutoring, a testing facilitator, taking the tests in a

different environment, or any of that SPED stuff.

______________________________________________________________________

Games, Movies, Music & Sports! http://entertainment.yahoo.ca

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Guest guest

Hi Kati's mom, welcome!

I'm a single mom with 3 sons and , 13 y/o, had OCD. Glad

Kati's coping so well now overall. Do you think all the activities

she's involved in help reduce the OCD compulsions since they seems to

come back more during inactive periods like when she hurt her hand?

Out of my 3 sons, is the least likely to be " involved " in any

activities - sports or otherwise - he's what I might

call....intellectual?? He'll get out an play but he's not athtletic,

not real outgoing but at the same time not so introverted he won't

speak up in class, etc.

I just posted before this a question on " school work " as we also have

a 504 plan in place due to problems relating to it. Does Kati say

WHY she can't finish the tests? 's idea sounded great if you

can get that in place for her. How are the " classwork " grades? My

17 y/o non-OCD son had a similar problem in chemistry. The teacher

said you could tell he knew the work from the everyday classes, but

he just could not do well on the tests but he did manage to pass. I

know chemistry and algebra are totally different though. I was

wondering that if Katy completes at least half the test or more,

could they not " count " that as the complete test and grade on correct

& incorrect answers from the total number completed? Sorta late in

the year for that unless they can go back and re-grade.

Well, welcome to this great group (it's been my best support!) and

let us know how things go with school and Kati and all!

> I've been lurking for awhile, and thought it was time to introduce

> myself and my daughter, Kati. She is 15 and has had OCD probably

> since she was 2. At that time, she had numbers obsessions (and was

> terrified of the Count on Sesame Street!) and trich. We actually

> took her to a psychiatrist at that time, and he diagnosed OCD, but

> told us he didn't think he could do much with such a young child.

He

> advised us to just think of her as a child with a wonderful but

> overactive imagination, but that later we might want to look into

> therapy and medication. At about age 9 she had an acute " attack "

of

> OCD that lasted a couple of months. We had just moved, she hurt

her

> knee doing gymnastics and was on crutches, and then she got a " flu-

> like " virus. Soon she had contamination issues, so that it took

> hours to change clothes, and she could only wear one or two

outfits.

> There were certain doors she couldn't walk through, and she had to

> turn in circles before she could walk through others or down

certain

> stairs. This attack eventually went away without treatment, and

> there were only minor remnants (a particular door, for example)

that

> weren't too onerous.

>

> About a year and a half ago, she hurt her hand (broke a small bone)

> and couldn't do gymnastics for a couple of months. The OCD came

back

> with a vengeance. Numbers, doors, touching, scrupulosity....it was

a

> nightmare. Her doctor put her on Luvox, which helped a little at

> first, and then the insurance co. refused to pay for it until she

had

> a trial with Paxil. The Paxil sent her over the edge--severe panic

> and anxiety, greatly increased symptoms, ending up in the ER

because

> she " wanted to die " she felt so bad. We got her back on Luvox, and

> the dr. said to double the dose, from 25 mg to 50 mg after a couple

> of weeks. Same thing--panic, sleeplessness....we had to go back to

> 25 mg and s-l-o-w-l-y increase.

>

> She's now taking 50 mg Luvox, spent a year in CBT/ERP therapy, and

is

> doing a lot better. Still a few remnants--the numbers 3 & 6 still

> cause her trouble sometimes (can't go to church on the third Sunday

> of the month, or 3 weeks in a row, or certain dates, for example),

> but much better.

>

> The Luvox does seem to make her manic and oppositional, which

causes

> some problems in school occasionally. For a while, she was hanging

> out with some kids that caused me concern, and I had to really

watch

> her social life, because she seemed to have NO sense! (these were

> boys who had driver's licenses and cars....and she's a VERY cute

> girl, so you can see my worry!)Things are a bit better now...she

has

> a very nice boyfriend whose mother is quite protective, and her

other

> friends seem more appropriate. She's very active in sports

> (gymnastics and cheerleading) and theater, so her schedule is very

> full. That seems to help the mania, but it's hell on getting

> homework done! We're really doing a balancing act there.

>

> Our biggest concern right now is her math class. She's

consistently

> done 1-2 hours of homework in Algebra I a night--more than all her

> other subjects combined--and she's failing. She seems to

understand

> the work at home, but often doesn't finish tests or makes foolish

> errors. It looks like she'll have an F for the year. I've been in

> touch with the teacher and with her case manager (she has a 504

plan)

> on many occasions, and NOTHING has been done to help her. We're

> having a meeting Monday morning about the situation. I think the

> tests are not a fair indicator of her understanding, but doubt I

can

> convince the teacher to evaluate her any other way. I'm planning

to

> insist the F is removed from her transcript and see if she can

obtain

> the credit in some alternate way (if I can figure out what that

would

> be!) Any ideas? Kati feels she has been treated unfairly, that

she

> already understands the math, and she's pretty unwilling to accept

> tutoring, a testing facilitator, taking the tests in a different

> environment, or " any of that SPED stuff " . SPED has a bad

reputation

> at her school, and she is actually gifted in ability (even in

math!)

> so I understand her feelings, although I think some of those

> accomodations could make a difference for her.

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Guest guest

Hi, and welcome!

I just thought I'd mention that we had exactly the same response

with Luvox. It made my nine year old daughter manic and impulsive -

dangerously so!! She started walking up to strange houses and knocking on the

doors to " meet " the people, and started to get F's in everything in school.

We switched her to Celexa which has been a real blessing - it helps the OCD a

lot and causes no behavioral side effects. She has ADHD too, and can't

tolerate stimulants (the ones we 've tried anyway) so the homework scene is a

nightmare, but at least I don't have to worry about her 24/7. On Luvox I felt

as if I had to supervise her every single minute - it was awful!!

You might want to consider trying a different SSRI if the behavioral

problems are that bad - although I know trying a new medication is a

nightmare in itself! (We used Paxil first too - it was actually the best for

us, but quit working after a year).

Anyway, that's my two cents worth!

in Nevada (mom to Annie, 9 1/2 with OCD and ADHD)

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> Kati's mom:

>

> Welcome to the group. Has your psychiatrist considered any other

SSRIs besides Luvox and Paxil? I know that sometimes it takes a

while to find the " right " one for an individual.

Actually, we're kind of scared to try something new, because of the

issues she had with Paxil! Even getting an appropriate dose of Luvox

was a struggle. And, she's had good results from Luvox regarding OCD

symptoms.

>

>

> I wanted to ask you (and the group) how you handle Kati's condition

with her close friends, boyfriend, co-cheerleaders, etc. We are very

open about Luke's condition with him and so far with family and close

friends. Since the OCD can cover up Luke's own personality sometimes

with a meltdown or fixation, I feel the need to explain his behavior

to his friend or friend's mother.

I've been up-front with her teachers, and she has a 504 plan. I also

told our priest (since she was having a lot of trouble attending Mass

on certain days, and she was an altar server). Turns out, he

suffered with scrupulosity for years, as a boy in a Catholic

orphanage and later, in seminary. Finally, his confessor recognized

the problem and helped him. So he was very supportive and helpful to

Kati, and has met with her several times at her request to talk about

this. He also let her call him at any hour if she was worried about

something relating to church.

Kati didn't want her friends to know anything. For a long time, I

wouldn't let her do overnights because she wouldn't sleep, and then

the symptoms would come out with a vengeance. So I just made excuses

for her ( " She's just getting over a cold. " " We have to get up early

tomorrow to go out of town. " ) Finally, she mustered up the courage

to tell a friend (a big, tough, " bad boy " type--she was pretty manic

at the time). He said, " I have OCD too. It's no big deal. "

Unbelievably, she has told a total of 3 friends, and all three have

OCD themselves! One of the three was having acute symptoms, the

others were sort of " in remission " .

She hasn't told her boyfriend, but he knows she takes a pill every

night. She told him it was for an " anxiety " problem, and that last

year she had a lot of panic attacks and the medication helps with

that. She's worried he'll think she's " a freak " if she really

explains the whole thing to him.

I haven't made a big deal about telling anyone recently--but I did

insist on informing the school when she was in the middle of acute

symptoms. She was really against that, but it was helpful! Now she

realizes it gets her needed accomodations, so she's more OK with it,

but she hasn't attended a meeting yet. She will be going to the

meeting on Monday (she wants to tell off her math teacher, who seems

to base the ENTIRE GRADE on tests, so homework counts for nothing).

>

>

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> . Do you think all the activities

> she's involved in help reduce the OCD compulsions since they seems

to

> come back more during inactive periods like when she hurt her

hand?

Yes, definitely, she needs to be busy (actually, frantically so!)

Her day is school, play practice, change and quick dinner, gymnastics

or gym workout, homework....Weekends are Girl Scouts, social, and

church. Not much down time, but the OCD is mostly under control.

Her psych says the exercise actually changes the brain chemistry--

sort of like " self-medication " . The other stuff distracts her, I

think, so she doesn't have time to obsess, and she won't show

compulsions around other people.

>

.. Does Kati say

> WHY she can't finish the tests? 's idea sounded great if you

> can get that in place for her. How are the " classwork " grades?

She can't say why it takes so long to complete tests. When I watch

her do math, she spends a lot of time making it look perfect. But on

a test, she knows she has a time limit. She says she rushes through,

so she can get done....The biggest problem is that there seems to be

no " classwork grade " . Her test grades are mostly in the 60's (70 is

passing). When I speak to the teacher, she's pretty rigid. She just

told Kati she was taking points off on her last test bacause she did

it in ink. Kati offered to redo it in pencil, and the teacher said

no. It seems as if she doesn't want to help her to pass....

My

> 17 y/o non-OCD son had a similar problem in chemistry. The teacher

> said you could tell he knew the work from the everyday classes, but

> he just could not do well on the tests but he did manage to pass.

As a high school chemistry teacher, I'm glad to hear the teacher at

least had a clue!

I was

> wondering that if Katy completes at least half the test or more,

> could they not " count " that as the complete test and grade on

correct

> & incorrect answers from the total number completed?

I really like this idea. It's hard for her to use up all her study

halls finishing tests (especially if she's still failing).

Sorta late in

> the year for that unless they can go back and re-grade.

That's the real problem now, of course. I'm really in " damage

control " mode here. But it might help next year.

>

>

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Guest guest

:

I totally agree with you about being open to people about our kid's illness. If

we hide it, it makes it look as though we are ashamed -- we wouldn't hide it if

they had diabetes, asthma, cerebral palsy, etc. Why make our kids feel bad

about their illness and verify their feelings of shame, etc.

Everyone's different and they should do what they are comfortable with, but I

agree with you about being open about it.

Tamra (Nebraska)

ocdmom2001

An introduction

I've been lurking for awhile, and thought it was time to introduce

myself and my daughter, Kati. She is 15 and has had OCD probably

since she was 2. At that time, she had numbers obsessions (and was

terrified of the Count on Sesame Street!) and trich. We actually

took her to a psychiatrist at that time, and he diagnosed OCD, but

told us he didn't think he could do much with such a young child. He

advised us to just think of her as a child with a wonderful but

overactive imagination, but that later we might want to look into

therapy and medication. At about age 9 she had an acute " attack " of

OCD that lasted a couple of months. We had just moved, she hurt her

knee doing gymnastics and was on crutches, and then she got a " flu-

like " virus. Soon she had contamination issues, so that it took

hours to change clothes, and she could only wear one or two outfits.

There were certain doors she couldn't walk through, and she had to

turn in circles before she could walk through others or down certain

stairs. This attack eventually went away without treatment, and

there were only minor remnants (a particular door, for example) that

weren't too onerous.

About a year and a half ago, she hurt her hand (broke a small bone)

and couldn't do gymnastics for a couple of months. The OCD came back

with a vengeance. Numbers, doors, touching, scrupulosity....it was a

nightmare. Her doctor put her on Luvox, which helped a little at

first, and then the insurance co. refused to pay for it until she had

a trial with Paxil. The Paxil sent her over the edge--severe panic

and anxiety, greatly increased symptoms, ending up in the ER because

she " wanted to die " she felt so bad. We got her back on Luvox, and

the dr. said to double the dose, from 25 mg to 50 mg after a couple

of weeks. Same thing--panic, sleeplessness....we had to go back to

25 mg and s-l-o-w-l-y increase.

She's now taking 50 mg Luvox, spent a year in CBT/ERP therapy, and is

doing a lot better. Still a few remnants--the numbers 3 & 6 still

cause her trouble sometimes (can't go to church on the third Sunday

of the month, or 3 weeks in a row, or certain dates, for example),

but much better.

The Luvox does seem to make her manic and oppositional, which causes

some problems in school occasionally. For a while, she was hanging

out with some kids that caused me concern, and I had to really watch

her social life, because she seemed to have NO sense! (these were

boys who had driver's licenses and cars....and she's a VERY cute

girl, so you can see my worry!)Things are a bit better now...she has

a very nice boyfriend whose mother is quite protective, and her other

friends seem more appropriate. She's very active in sports

(gymnastics and cheerleading) and theater, so her schedule is very

full. That seems to help the mania, but it's hell on getting

homework done! We're really doing a balancing act there.

Our biggest concern right now is her math class. She's consistently

done 1-2 hours of homework in Algebra I a night--more than all her

other subjects combined--and she's failing. She seems to understand

the work at home, but often doesn't finish tests or makes foolish

errors. It looks like she'll have an F for the year. I've been in

touch with the teacher and with her case manager (she has a 504 plan)

on many occasions, and NOTHING has been done to help her. We're

having a meeting Monday morning about the situation. I think the

tests are not a fair indicator of her understanding, but doubt I can

convince the teacher to evaluate her any other way. I'm planning to

insist the F is removed from her transcript and see if she can obtain

the credit in some alternate way (if I can figure out what that would

be!) Any ideas? Kati feels she has been treated unfairly, that she

already understands the math, and she's pretty unwilling to accept

tutoring, a testing facilitator, taking the tests in a different

environment, or " any of that SPED stuff " . SPED has a bad reputation

at her school, and she is actually gifted in ability (even in math!)

so I understand her feelings, although I think some of those

accomodations could make a difference for her.

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Guest guest

Wow! How great it is for to have friends who also have OCD! I know

would like to me other kids with OCD.

Tamra

Re: An introduction

> Kati's mom:

>

> Welcome to the group. Has your psychiatrist considered any other

SSRIs besides Luvox and Paxil? I know that sometimes it takes a

while to find the " right " one for an individual.

Actually, we're kind of scared to try something new, because of the

issues she had with Paxil! Even getting an appropriate dose of Luvox

was a struggle. And, she's had good results from Luvox regarding OCD

symptoms.

>

>

> I wanted to ask you (and the group) how you handle Kati's condition

with her close friends, boyfriend, co-cheerleaders, etc. We are very

open about Luke's condition with him and so far with family and close

friends. Since the OCD can cover up Luke's own personality sometimes

with a meltdown or fixation, I feel the need to explain his behavior

to his friend or friend's mother.

I've been up-front with her teachers, and she has a 504 plan. I also

told our priest (since she was having a lot of trouble attending Mass

on certain days, and she was an altar server). Turns out, he

suffered with scrupulosity for years, as a boy in a Catholic

orphanage and later, in seminary. Finally, his confessor recognized

the problem and helped him. So he was very supportive and helpful to

Kati, and has met with her several times at her request to talk about

this. He also let her call him at any hour if she was worried about

something relating to church.

Kati didn't want her friends to know anything. For a long time, I

wouldn't let her do overnights because she wouldn't sleep, and then

the symptoms would come out with a vengeance. So I just made excuses

for her ( " She's just getting over a cold. " " We have to get up early

tomorrow to go out of town. " ) Finally, she mustered up the courage

to tell a friend (a big, tough, " bad boy " type--she was pretty manic

at the time). He said, " I have OCD too. It's no big deal. "

Unbelievably, she has told a total of 3 friends, and all three have

OCD themselves! One of the three was having acute symptoms, the

others were sort of " in remission " .

She hasn't told her boyfriend, but he knows she takes a pill every

night. She told him it was for an " anxiety " problem, and that last

year she had a lot of panic attacks and the medication helps with

that. She's worried he'll think she's " a freak " if she really

explains the whole thing to him.

I haven't made a big deal about telling anyone recently--but I did

insist on informing the school when she was in the middle of acute

symptoms. She was really against that, but it was helpful! Now she

realizes it gets her needed accomodations, so she's more OK with it,

but she hasn't attended a meeting yet. She will be going to the

meeting on Monday (she wants to tell off her math teacher, who seems

to base the ENTIRE GRADE on tests, so homework counts for nothing).

>

>

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  • 3 months later...

Hi Beth. Welcome to the group! My name is Marcy. My son is 5 years old with

SMA 2. He will be starting Kindergarten tomorrow! Boy am I nervous! LOL He

has a sister that is 14 months. She is SMA free. Everyone here is really nice

and you receive alot of good information from everyone. Nice to meet you!

Marcy Kelley

" Come grow with us "

<A

HREF= " http://telecommutemoms.tripod.com/ " >http://telecommutemoms.tripod.com</A>

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  • 5 months later...

Having your daughter in the same school district as you teach may

cause you problems. For exampe reprisal if you tried to go due process

or reprisal if you fought what was on her IEP ect ect. With her refusing

to wear underwear which is understandable yet some people who never

experienced kids like ours may say your a bad mother thus reflect there

attitude with you at school. Just a thought charlene

-- An introduction

I have been lurking on the site for a while now and thought that I

should introduce myself.

My name is . I have a nine year old daughter, Cailin, who is

diagnosed with Asperger's syndrome. We have known that she was

autistic since about age two, but only received the formal " autism "

diagnosis in December, 2001. Prior to that, she was diagnosed ADHD

and later, PDD.

She is very bright and often appears, at least on the surface, to

have no problems. However, after spending any time with her, the

deficits become apparent.

We are, at this moment, in a tumultuous battle with our school

district in SE Georgia. I also teach 4th grade for the same school

district at another school.

We have major sensory issues, especially with noise and clothing.

She refuses to wear underwear; only wears soft, cotton clothing'

wears her pants well below her natural waistline; refuses to wear

socks, and complains that clothes 2 or 3 sizes too big hurt her.

We are very frustrated. We want her to succeed. She is very bright

and capable, but is very limited by her perception of the world.

I am open to any suggestions that might help.

Thanks,

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Have you tried the brushing protocol to help with defensiveness? It

might make the clothing thing go easier, but I don't know.

We also put Allie on a small amount of Paxil last summer. It has

greatly diminished her obsessiveness and anxiety levels. She used to

cover her ears all the time, I noticed a couple of weeks into the med

she stopped covering her ears.

Of course, I only suggest meds if dietary and behavioral issues are

exhausted. But, for Allie, it has helped her to function whereas she

was reaching a total shut-down point.

Debi

> -- An introduction

>

> I have been lurking on the site for a while now and thought that I

> should introduce myself.

>

> My name is . I have a nine year old daughter, Cailin, who is

> diagnosed with Asperger's syndrome. We have known that she was

> autistic since about age two, but only received the formal " autism "

> diagnosis in December, 2001. Prior to that, she was diagnosed ADHD

> and later, PDD.

>

> She is very bright and often appears, at least on the surface, to

> have no problems. However, after spending any time with her, the

> deficits become apparent.

>

> We are, at this moment, in a tumultuous battle with our school

> district in SE Georgia. I also teach 4th grade for the same school

> district at another school.

>

> We have major sensory issues, especially with noise and clothing.

> She refuses to wear underwear; only wears soft, cotton clothing'

> wears her pants well below her natural waistline; refuses to wear

> socks, and complains that clothes 2 or 3 sizes too big hurt her.

>

> We are very frustrated. We want her to succeed. She is very bright

> and capable, but is very limited by her perception of the world.

>

> I am open to any suggestions that might help.

>

> Thanks,

>

>

>

>

>

>

>

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Hi Sara

Welcome to the list. My name is Tracey and I live in Canada. My

youngest daughter Skylar was diagnosed as autistic at the age of 3. She

is now 10. This is a great list and I am sure you will be glad you

joined.

Tracey

" Lyn " wrote:

> Hi .. just wanted to welcome you to the group... I am in GA

> too.. the NW side though.. my dd is 9 and high functioning. You

> should also check out the autism group.

>

> Lyn

>

>

>

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  • 4 months later...
Guest guest

Thanks , I have always wanted to go to Southeast Asia to travel. Sounds

interesting. I have been to Europe quite a bit and it is worth it. Please

don't get too stressed by the end of the year, Stress always made my liver

flare.

Patty

[ ] An introduction

I am a Wyoming native, but I have also lived in Japan for two

years. I have been a high school teacher for nearly 30 years. The

two years that I lived in Japan I was teaching on an Air Force

base at Misawa. While I was there, I traveled to many other

countries in Southeast Asia. I had a blast. I have never been to

Europe, but Sophie's photos have made me wonder if a trip is

not in order.

Spring is always busy and stressful for me because of all the

final projects, research papers, etc. that must be graded. This

year I am feeling the stress a bit more thanks to AIH.

I was diagnosed with AIH in 2001 (at the age of 50) through a

routine Health Fair blood draw. My LFTs had been elevated (not

alarmingly high) for about 8 years, but in 2001 they doubled. That

is when I went to a gastro. He ran more blood work, and I had

two liver biopsies to confirm the diagnosis.

I am taking prednisone and 6MP. I began with prednisone, but it

did not stablize my LFTs, so I had to take the combo and

probably will for the rest of my life. My numbers are now normal

and stable.

About a month ago, I was diagnosed with pulmonary

hypertension. I am still going through a series of tests to

determine the cause. I am praying that a cause can be found;

thus, it will be Secondary PH. If a cause is NOT found, then it is

Primary PH. I have discovered from all of my research that the

treatment for PPH is controversial as well as complex, and like

AIH, without it the disease progresses too rapidly.

I love to read (when I have time), to walk, to visit with friends, to

quilt, and I attempt counted cross stitch.

(in WY)

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  • 5 months later...
  • 3 weeks later...

Cyndi- I completely understand what you are going through. I was in

a car accident 4 years ago and have pretty much taken every drug in

the book the last 4 years. The one drug that was always in my life

was vicodin. You do build up a tolerance for any type of pain

medication, as I did, and therefore have to take more pills to get

some type of relief. I never had a withdrawal with vicodin, but did

have a little with oxycodone. I also have had the problem of waiting

too long to take my pills, almost to see how long I can take the

pain, but in the end when the pain gets bad the pills don't do

anything at all. The one thing all the dr's have told me that was

correct throughout this ordeal is not wait until the pain is

unbearable to take the pills, because it won't work. I had lower

back surgery in Sept and have been bedridden for three months so far

and have three more to go. The type of surgery I had required me to

be bedridden for a very long time. Anyway, as to what you said about

taking the pills before surgery; I really only stopped taking the

vicodin a week of so before but I tried to reduce my intake. Even

though after the surgery the pain was bad and they had me on morphin,

I can honestly tell you that dealing with all the pain I've had

throughout the last 4 yrs definitely prepared me for the surgery. I

know I have a very high tolerance for pain now. The morphine did not

do anything. I would push for the drip and I would never feel any

difference, but it wasn't unbearable. Maybe I was just in shock with

the fact I actually went through having the surgery. I'm not denying

the pain was very bad at times but I was just so happy that the

surgery was over and I wasn't paralized. Trust me---you will be ok.

You have obviously overcome a lot of obstacles that have come your

way, this is just another part of life's game. It's wierd because

being bedridden for a long period of time can play tricks on you. My

mood varies not by day, but by minute. But I do know that there is

one thing I've gotten out of all of this experience: Appreciate what

you have and accept what you don't. It's hard and it may take years

to do as it did me. Believe me that we all know how the doctors are;

how they make you feel; how it seems like they don't care about your

pain and are quick to take away the little you have left. But we

have to keep in mind that medical science has never really figured

out the treatment of our spines. I had felt so alone for sooo long

before I found this group and back pain chat rooms. I helps me to

know that there are other people that have been screwed over like me

and deal with the same pain everyday. It's interesting because it

consoles me to know others have the same experiences as me, yet it

saddens me that this happens to so many people. Anyway, enough of

that talk. Good luck and write back and let us know how everything

is going.

Take care.

> Hello group my name is Cyndi and I'm in Nashville Tennessee.

>

> The short story is, I have deteriorated disks in my lower back and

neck and

> the two in my lumbar area have gone now so much one of my vertebrae

has

> slipped way out of place. The Orthopaedic Surgeon (who is a spine

> specialist) has already said the only thing we can do is surgery

but he

> wants to postpone it as long as possible. In the meantime (for

about 3

> months) I have been on Vicodin 7.5/750 - I take these daily 1/2

about every

> 3 or 4 hours. Sometimes more/sometimes less. I have found out the

hard way

> it's not a good idea to let the medicine get entirely out of my

system

> because the pain gets hold and once that happens I have to pretty

much

> over-medicate myself to get a handle on it again. The doctor

wanted to do

> an epidural but I have yet to try that.

>

> I went on medical leave from work on July 29th last year and wound

up having

> gastric bypass surgery last December 30th. It has been very

successful so

> far and I have lost 142 pounds. I have another 80 to lose. Over

the years

> my yo-yo weight has hurt my back and I know losing this weight is

lessening

> the pressure but like I said -- it's gone so far now there is

nothing can be

> done.

>

> The doctor is cutting me off the pain medicine until I come in and

schedule

> the back surgery. I have 10 pills left and I am scared but... I'm

sure I

> ll be ok. I know there must be some kind of withdrawal I'll go

through but

> I'm hoping someone here will help me through it. :o) I know I

need to get

> this medication out of my system - especially before I have surgery

or else

> nothing will help with the pain post-op. Right? Plus this stuff

can't be

> good for my body - especially my liver. Right? I can't take any

> over-the-counter pain medicine except Tylenol because of the weight

loss

> surgery.

>

> The surgery on my neck will be for the exact same thing but we have

some

> time before that will be done.

>

> I joined some pain management groups and some back and neck groups

with the

> hope of finding some friends to help me understand and deal with

both the

> physical pain and the mental pain once I stop taking this drug.

Friends who

> have been and are where I am now in this struggle. :o)

>

> Love & Hugs,

> Cyndi

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Hi Cyndi, welcome too the group.I think personally its NUTS for your

dr too cut you off medicine until you have surgery. NO you don;t

have too get it out of your system too have surgery. I've learned

over the years too fight for what I need as far as meds and its not

easy but I refuse too suffer cause any dr is stupid. There is a

patients pain bill of rights I will find it for you, basically it

states there is no reason we should suffer in pain, our dr HAVE too

listen too us and treat us as humanbeings. Get yourself too a pain

management specialist asap, they will help you treat your pain

correctly. A regular dr is not the person too do this. YOu can go

off your meds if you want too I just want you too understand you

shouldn;'t have too suffer if you need them. I've had dr's refuse

too do surgery on me several times because in their eyes I was not

bad enough. One even told me " when I crawled back into his office

he'd figure it was time too do it " I let that man convince me I Had

too suffer for 9 long months until I got smart and went too another

dr. If you need help or any questions answered please feel free too

email me or post it here. I'll try and help any way I can. I am

scheduled for surgery Dec 26 but I shouldn't be done long only a

week or so he said, well he said so but who knows lol. I have fought

long and hard too get where I am but I am having a dorsal spinal

stimulator implanted in my back too help fight my pain. It will not

fix my problems in my lower back but it will help me too function

without so much pain. I am sooooo excited too get it done I tried it

out for a week and it was so nice too be able too walk again without

limping in pain or having too hit the ground hurting till I wanted

too cry. Please go see another dr and get some help for yourself,

don't let one dr convince you too suffer there is no need too. I'll

find the bill of rights asap for you and post it here. Good luck,

Sharon *~*~*group moderator *~*~*~*

> Hello group my name is Cyndi and I'm in Nashville Tennessee.

>

> The short story is, I have deteriorated disks in my lower back and

neck and

> the two in my lumbar area have gone now so much one of my

vertebrae has

> slipped way out of place. The Orthopaedic Surgeon (who is a spine

> specialist) has already said the only thing we can do is surgery

but he

> wants to postpone it as long as possible. In the meantime (for

about 3

> months) I have been on Vicodin 7.5/750 - I take these daily 1/2

about every

> 3 or 4 hours. Sometimes more/sometimes less. I have found out

the hard way

> it's not a good idea to let the medicine get entirely out of my

system

> because the pain gets hold and once that happens I have to pretty

much

> over-medicate myself to get a handle on it again. The doctor

wanted to do

> an epidural but I have yet to try that.

>

> I went on medical leave from work on July 29th last year and wound

up having

> gastric bypass surgery last December 30th. It has been very

successful so

> far and I have lost 142 pounds. I have another 80 to lose. Over

the years

> my yo-yo weight has hurt my back and I know losing this weight is

lessening

> the pressure but like I said -- it's gone so far now there is

nothing can be

> done.

>

> The doctor is cutting me off the pain medicine until I come in and

schedule

> the back surgery. I have 10 pills left and I am scared but...

I'm sure I

> ll be ok. I know there must be some kind of withdrawal I'll go

through but

> I'm hoping someone here will help me through it. :o) I know I

need to get

> this medication out of my system - especially before I have

surgery or else

> nothing will help with the pain post-op. Right? Plus this stuff

can't be

> good for my body - especially my liver. Right? I can't take any

> over-the-counter pain medicine except Tylenol because of the

weight loss

> surgery.

>

> The surgery on my neck will be for the exact same thing but we

have some

> time before that will be done.

>

> I joined some pain management groups and some back and neck groups

with the

> hope of finding some friends to help me understand and deal with

both the

> physical pain and the mental pain once I stop taking this drug.

Friends who

> have been and are where I am now in this struggle. :o)

>

> Love & Hugs,

> Cyndi

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  • 3 years later...

Welcome . Sorry about your mothers passing, you have my sympathy. Losing a parent is never easy. What to expect on treatment, honey just read some of the emails and I am sure you will get all the information you will ever want. We have a lot of members currently going through treatment. , Sharon and many others. This is a great group, very caring and loving. I am in a bit of a hurry this morning as I need to get my behind in gear and get ready for work. But again I say Welcome. Love Janet Rob <robert.d.lovett@...> wrote: hello everybody...I would have said hello earlier but my mother passed away suddenlyjust after I registered for membership with this group and I have beenin grief for her passing. She was chronically disabled and I was hercarer since 1992. She is at peace now and it is time for me to seekkindred souls regarding my own health issues.I am HepC+. I have type 1 and 3. Right now it is managed by diet but Iexpect to start antiviral treatment in the next few weeks. Can anybodytell me what I should expect? cheersSydney Australia

Take the ordinary things

of life, and make them your own. Do the impossible with a smile

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Oh my giddy aunt another Aussie!!!!!

Welcome to the best group on the net. These people are a great bunch

and I just know you'll gain so much from being here.

My sincerest sympathies on the passing of your mother. That must have been

so hard for you.

I'm the only other Aussie member (that I know of) and one of the moderators

here. Kick back, read the posts and relax,, someone here will be along to

answer all your questions, just fire away.

And you've taught me something today. I didn't know it was possible to have

more than one genotype!

Luv

anne

an introduction

> hello everybody...

>

> I would have said hello earlier but my mother passed away suddenly

> just after I registered for membership with this group and I have been

> in grief for her passing. She was chronically disabled and I was her

> carer since 1992. She is at peace now and it is time for me to seek

> kindred souls regarding my own health issues.

>

> I am HepC+. I have type 1 and 3. Right now it is managed by diet but I

> expect to start antiviral treatment in the next few weeks. Can anybody

> tell me what I should expect?

>

> cheers

>

>

> Sydney Australia

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Rob,

I am sorry for your time of grief. It is so hard to lose those that we love and

have been so

close to. I am glad you have joined this group - you will find lots of support

and answers

to any questions that you have any time! I started treatment eight weeks ago -

and have

felt blessed with the help here. As to sides, everyone seems to be really

different. I know

my doctor's office told us to expect flu like symptoms with the first shot but

that they

usally lessen over the first few weeks. I really didn't have those first sides

- some stomach

cramping and loss of appetite during the couple weeks but that quickly lessened.

Drinking plenty of water seems to really help - I was also recommended to eat

small meals

and I do think that makes a difference in how I feel. I do get some pretty

heavy waves of

fatigue at times - but I'm learning when I just need to slow myself down and

take a break.

I stocked up on lotion for dry itchy skin (which just seems to be kicking

in)...and I keep

some ginger ale in the house for when my stomach feels a little unsettled. Also

anne's jokes keep the laughter going and our sense of humor (thanks

anne!).

Hope this helps. It definitely is a journey into the unknown, but you are in

good company

here. with love & light, karen

>

> hello everybody...

>

> I would have said hello earlier but my mother passed away suddenly

> just after I registered for membership with this group and I have been

> in grief for her passing. She was chronically disabled and I was her

> carer since 1992. She is at peace now and it is time for me to seek

> kindred souls regarding my own health issues.

>

> I am HepC+. I have type 1 and 3. Right now it is managed by diet but I

> expect to start antiviral treatment in the next few weeks. Can anybody

> tell me what I should expect?

>

> cheers

>

>

> Sydney Australia

>

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yes, what info can we get about multiple genos, I was curious myself. I am in Arkansas. we got snow today, just a little, it is too cool. we almost never get much winter so its a treat. Welcome to our little world, everyone is awesome. peace danne <kanga2@...> wrote: Oh my giddy aunt another Aussie!!!!!Welcome to the best group on the net. These people are a great bunch and I just know you'll gain so much from being here.My sincerest sympathies on

the passing of your mother. That must have been so hard for you.I'm the only other Aussie member (that I know of) and one of the moderators here. Kick back, read the posts and relax,, someone here will be along to answer all your questions, just fire away.And you've taught me something today. I didn't know it was possible to have more than one genotype!Luvanne an introduction> hello everybody...>> I would have said hello earlier but my mother passed away suddenly> just after I registered for membership with this group and I have

been> in grief for her passing. She was chronically disabled and I was her> carer since 1992. She is at peace now and it is time for me to seek> kindred souls regarding my own health issues.>> I am HepC+. I have type 1 and 3. Right now it is managed by diet but I> expect to start antiviral treatment in the next few weeks. Can anybody> tell me what I should expect?>> cheers>> > Sydney Australia

Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Games.

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Welcome ! Im so sorry to hear about your mother,, I can relate as Im taking care of both of my parents in different places as they are divorced from each other but I am all they have left.. it tires me a lot.. I wish you great luck with tx and I hope you clear and stay that way! Keep us updated as how you are doing.. and ask any questions you might have! jax moderatorRob <robert.d.lovett@...> wrote: hello everybody...I would have said

hello earlier but my mother passed away suddenlyjust after I registered for membership with this group and I have beenin grief for her passing. She was chronically disabled and I was hercarer since 1992. She is at peace now and it is time for me to seekkindred souls regarding my own health issues.I am HepC+. I have type 1 and 3. Right now it is managed by diet but Iexpect to start antiviral treatment in the next few weeks. Can anybodytell me what I should expect? cheersSydney Australia Jackie

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