Re: New to this group.

January 17, 2008

Hi ,

Welcome to the group. It definitely sounds like your daughter

has OCD. I know it seems like forever waiting to get in to see a

psychiatrist, but hang in there. Glad to hear your husband is going

to lay off scolding her for spitting. If your daughter has OCD, she

can't help it. I'm sure she would like to stop, but she just

can't. It is not anything that happened to her in her life that is

making her do this, it is a chemical inbalance in the brain and it

is something she was born with. My 17 yr old son has OCD. He has

contamination obsessions. He's a washer; constantly having to buy

body wash, shampoo, hand soap, etc. He doesn't spit, but he blows

his nose a lot and goes thru a ton of kleenex. The best thing you

can do while waiting to see the psychiatrist is research. A good

place to start is www.ocfoundation.org. Also try to find some books

on OCD. A really good one is one written by Dr. Chansky is " Freeing

your child from obsessive-compulsive disorder : a powerful,

practical program for parents of children and adolescents " .

You are not alone.

Connie

January 22, 2008

I am new to this group also. My 7 year old had a spitting issue too,

and it disappeared as quickly as it started. She would soak up the

spit with her clothes or tissues...and when I told her absolutely no

more of that (this was before we knew she had OCD) she began holding

the spit in her mouth in order to avoid swallowing it. (She would be

unable to talk at this point, and the teacher at school, not knowing

what she had in her mouth would tell her to spit it out)..but then

suddenly she stopped that....

What I've learned so far is that alot of stuff begans and ends

abrubtly and with no reason.

I also have read some on PANDAS, which relates the OCD to STREP. This

makes sense for my daughter, as the first time she started having

symptoms she was very sick with STREP, and while some of her issues

are constant, now she gets worse each time she is sick.

Don't know if that applies in your situation or not.

>

> Hi, I am a 32-year-old mother of two daughters ages 9 and 4. My

> youngest daughter has been having some strange behavioral issues

for

> which I took her to the pediatrician on Monday and she was

diagnosed

> with possible OCD and/or possible anxiety disorder. I have an

> appointment with a psychologist on Tuesday to discuss this further

> and see about setting up treatment.

>

> Basically, her symptoms are that of being worried about death.

Every

> little boo boo she gets or any time I as much as stub a toe, she

> asked if I am going to die.

>

> She also worries about germs. Germs on her body, germs on

surfaces,

> germs on her food . . . She has been doing some excessive

> handwashing and will refuse to eat her foot if it touches any other

> surface other than her plate or fork, such as if it was to fall off

> the fork onto the table.

>

> The symptom that has been bothering me most lately is spitting.

She

> continually spits into the trash can and has even spit on her

bedroom

> floor at night. She says this is because she has hairs in her

> mouth.

>

> Mostly she has these symptoms when she is at home but yesterday she

> also began at school with them. She told her teacher she was

afraid

> that she may have swallowed pencil shavings and that she might

diet.

> was nowhere near a pencil or pencil sharpener at the time.

> The teacher said she went on and on for about 15 minutes about it

and

> even had the teacher check inside her mouth to be sure.

>

> She has also been much more clingy to me in the past week not

leaving

> my side very much at all.

>

> I am unsure how to handle these behaviors. My husband has

forbidden

> her from the spitting and gives her a time out if he catches her.

I

> tend to just ignore it as to not draw any more attention to it.

>

> What advise can you give me. How should I handle this spitting

> behavior.

>

> My appointment with the psychologist is 5 days away and I may lose

my

> mind before then!

>

> Thanks!

>

January 22, 2008

I think, in general, ocd is worse when they're sick or tired. At least

that's the case with my dd - we'll go along for weeks without even thinking

about ocd and get pretty complacent about it. Then dd will be overtired

(such as over the xmas vacation), and Hello OCD. I always kick myself for

letting her get run-down.

Mo

_____

From:

[mailto: ] On Behalf Of kleinml

Sent: Tuesday, January 22, 2008 12:02 PM

I am new to this group also. My 7 year old had a spitting issue too,

and it disappeared as quickly as it started. She would soak up the

spit with her clothes or tissues...and when I told her absolutely no

more of that (this was before we knew she had OCD) she began holding

the spit in her mouth in order to avoid swallowing it. (She would be

unable to talk at this point, and the teacher at school, not knowing

what she had in her mouth would tell her to spit it out)..but then

suddenly she stopped that....

What I've learned so far is that alot of stuff begans and ends

abrubtly and with no reason.

I also have read some on PANDAS, which relates the OCD to STREP. This

makes sense for my daughter, as the first time she started having

symptoms she was very sick with STREP, and while some of her issues

are constant, now she gets worse each time she is sick.

Don't know if that applies in your situation or not.

January 22, 2008

Thanks, that's really good for me to know as we are so new to this. I

have noticed that lack of sleep really affects her too.

Thanks again,

>

> I think, in general, ocd is worse when they're sick or tired. At

least

> that's the case with my dd - we'll go along for weeks without even

thinking

> about ocd and get pretty complacent about it. Then dd will be

overtired

> (such as over the xmas vacation), and Hello OCD. I always kick

myself for

> letting her get run-down.

>

> Mo

>

> _____

>

> From:

> [mailto: ] On Behalf Of kleinml

> Sent: Tuesday, January 22, 2008 12:02 PM

> I am new to this group also. My 7 year old had a spitting issue

too,

> and it disappeared as quickly as it started. She would soak up the

> spit with her clothes or tissues...and when I told her absolutely

no

> more of that (this was before we knew she had OCD) she began

holding

> the spit in her mouth in order to avoid swallowing it. (She would

be

> unable to talk at this point, and the teacher at school, not

knowing

> what she had in her mouth would tell her to spit it out)..but then

> suddenly she stopped that....

> What I've learned so far is that alot of stuff begans and ends

> abrubtly and with no reason.

> I also have read some on PANDAS, which relates the OCD to STREP.

This

> makes sense for my daughter, as the first time she started having

> symptoms she was very sick with STREP, and while some of her issues

> are constant, now she gets worse each time she is sick.

> Don't know if that applies in your situation or not.

>

April 27, 2008

I highly suggest that you speak with www.kellydorfman.com. She is a fantatic

nutritionist who has helped my son tremendously. She is extremely

knowledgeable on dd.

Good Luck,

Colleen

Mother of Charlie 2.5 years

[ ] New to this group.

Hi Everyone;

I am new to this group, and am the grandmother of a great little boy

who is 7 and has PDD and is non-verbal.

We are trying many things and was wondering what people do in this

group for developing speech?

I am not sure if he has apraxia, but would like to try some new things.

This is what he is currently taking;

Magnesium

Zinc

Vit.C

calcium

B-Complex

TriEnza enzymes

Childrens Probiotics

Omega Pure

Chelating with ALA every 3 hours day and 4 at night for 3 days on and

11 off.

GSE for yeast

We tried DMG but he cant handle this amino acid. Thanks everone. Joyce

April 28, 2008

Hi Joyce and welcome!

Your grandson is 7 years old and nonverbal. What do the

professionals credit his lack of speech from? Autism? What

approaches have they provided therapy wise? Does anyone suspect he

has a speech impairment? Does he ever try to speak at all? If he

does how does he sound? Can he say any words at all? Does he ever

say something once and never say it again? Has he ever been

evaluated to find out if there is an underlying and undiagnosed

speech impairment?

PDD diagnosis doesn't mean much today as almost all kids that are

late talkers with sensory issues can be diagnosed as such -but you

want to know if the lack of speech is due to autism (which is treated

with more of a behavioral therapy) or some type of speech impairment

which could be from a number of reasons.

We can all provide more information about speech tips if you can find

out the reason your grandson isn't speaking yet. In my opinion in 3

months if there isn't progress you should reevaluate therapy,

therapist or diagnosis. And even though he's 7 it's never too late

to get an appropriate diagnosis and into appropriate therapy if up

until now it was not.

As far as supplements, they may help, but if he's apraxic or has some

other impairment of speech they are not the answer alone. Who

recommended what he's on now? The Omega formula you are using from

what I can tell isn't the formula that works for most. It isn't high

enough in the EPA and does it have any GLA in it at all? There are

some here that do a more advanced biomedical approach and/or use a

bunch of different supplements- but most of them are in the group

that didn't have children that responded to just fish oil (a specific

formula) and vitamin E. I have new member info I can send out -but

first let us know the answers to the questions above so we can see if

we can help!

and PS- even if it is just autism -he's 7 and nonverbal -reevaluate.

was misdiagnosed autistic until 17

http://www.cherab.org/news/.html

=====

April 28, 2008

Joyce, I would add carnosine (800 mg/day) and essential GSH (oral

liposomal glutathione from wellnesshealth.com, starting with 1 tsp/day

and working up to 2 tsp/day). Have you tried methyl b12 injections?

good luck

>

> Hi Everyone;

>

> I am new to this group, and am the grandmother of a great little boy

> who is 7 and has PDD and is non-verbal.

> We are trying many things and was wondering what people do in this

> group for developing speech?

> I am not sure if he has apraxia, but would like to try some new things.

> This is what he is currently taking;

> Magnesium

> Zinc

> Vit.C

> calcium

> B-Complex

> TriEnza enzymes

> Childrens Probiotics

> Omega Pure

> Chelating with ALA every 3 hours day and 4 at night for 3 days on and

> 11 off.

> GSE for yeast

> We tried DMG but he cant handle this amino acid. Thanks everone. Joyce

>

April 28, 2008

If possible, I would try to get a private speech evaluation to nail

down what type of speech issue he has, separate from the PDD dx.

Most kids with PDD communicate in some way if PDD is " all " they are

dealing with. The combo of PDD and apraxia, for example, would

require a different approach than he may be getting right now.

Since you are doing chelation therapy, I assume you are working with

a DAN or other integrative physician? Have you tried the mB12

shots? They really spurred communication in my baby (now 21 months

old, no official dx yet). Fish oil didn't work for him, but for my

oldest boy, it was fantastic! Every kid is different...

Does he have low tone or coordination issues? Sometimes that can be

a sign of global dyspraxia, which is my oldest son's official dx.

I know this one is obvious, but has he had a full, thorough hearing

exam? Hearing impairment or severe auditory processing issues can

lead to an inability to communicate as well.

in NJ

> >

> > Hi Joyce and welcome!

> >

> > Your grandson is 7 years old and nonverbal. What do the

> > professionals credit his lack of speech from? Autism? What

> > approaches have they provided therapy wise? Does anyone suspect

he

> > has a speech impairment? Does he ever try to speak at all? If he

> > does how does he sound? Can he say any words at all? Does he

ever

> > say something once and never say it again? Has he ever been

> > evaluated to find out if there is an underlying and undiagnosed

> > speech impairment?

> >

> > PDD diagnosis doesn't mean much today as almost all kids that are

> > late talkers with sensory issues can be diagnosed as such -but you

> > want to know if the lack of speech is due to autism (which is

treated

> > with more of a behavioral therapy) or some type of speech

impairment

> > which could be from a number of reasons.

> >

> > We can all provide more information about speech tips if you can

find

> > out the reason your grandson isn't speaking yet. In my opinion

in 3

> > months if there isn't progress you should reevaluate therapy,

> > therapist or diagnosis. And even though he's 7 it's never too

late

> > to get an appropriate diagnosis and into appropriate therapy if up

> > until now it was not.

> >

> > As far as supplements, they may help, but if he's apraxic or has

some

> > other impairment of speech they are not the answer alone. Who

> > recommended what he's on now? The Omega formula you are using

from

> > what I can tell isn't the formula that works for most. It isn't

high

> > enough in the EPA and does it have any GLA in it at all? There

are

> > some here that do a more advanced biomedical approach and/or use a

> > bunch of different supplements- but most of them are in the group

> > that didn't have children that responded to just fish oil (a

specific

> > formula) and vitamin E. I have new member info I can send out -

but

> > first let us know the answers to the questions above so we can

see if

> > we can help!

> >

> > and PS- even if it is just autism -he's 7 and nonverbal -

reevaluate.

> > was misdiagnosed autistic until 17

http://www.cherab.org/news/.html

> >

> > =====

> >

April 28, 2008

Joyce your son and grandson are so fortunate to have you!! I will

help you in any way I can as my heart goes out to your grandson who

is nonverbal at 7. What grade is he in and where is he academically

speaking?

Yes it would be most important at this point to as soon as possible

seek an out of district private evaluation to confirm or rule out

whether he is not speaking due to autism or any underlying and

undiagnosed speech impairment. Let us know what state you are in and

perhaps we can share suggestions for professionals. If it does end

up that he has a specific impairment of speech you would ask

to " reopen his IEP for change in diagnosis " If for example he is

apraxic- ABA is not appropriate.

Below are new member archives about newly diagnosed apraxia as well

as fish oils and vitamin E taken from the archives here.

(very long!!)

Re: Hi! New and wondering about apraxia.

Hi Mrs Laurie and welcome!

Your son sounds like he has some oral apraxia which would of course

need to be confirmed by professionals. If oral apraxia is present

together with your child's delay he should at least be diagnosed

as " suspected apraxia " and appropriate therapy should be provided.

He is entitled by federal law to a free and appropriate public

education (FAPE) in the least restrictive environment (LRE) which

means that if 5 days of one on one speech therapy is appropriate for

him then that's what he should receive. What type of speech therapy

is he receiving from the school right now when you say " some " ?

Below is a very long archive to help -please know that you don't have

to understand it all at once -we're here as a group to help!

Thanks for sharing. This group has from the start been a group

that's made up of parents and professionals who care for children

with many types of speech and/or language delays and/or disorders.

There are parents here for example with undiagnosed " late talkers "

and we just have not heard from them in awhile. It's actually a

really good thing when there is a mix of us to share because we all

learn from each other as many diagnoses can overlap -or down the road

we learn that our child does have co diagnosis.

While this group is open to parents of all children with

communication impairments -including hearing impaired, autistic etc.

it wasn't that all that posted recently had a child with autism, or

autism and apraxia –but because of society focus on autism -many here

started following an autism approach -including ABA in some cases!

That's understandable if the much more basic approach to apraxia -ST

and OT and EFAs were tried first and didn't work -but some were

trying that to start.

The overwhelming majority (if you check the archives) have success

with the basic approach to apraxia.

On the other hand- most of us are dealing with more than verbal

apraxia…we just don't know that when our child is 2 -and we learn

through professionals and observations as they continue to grow and

more and more is expected of them. This is also why it's important

to take your child for a neurodevelopmental medical exam when your

child is suspected of apraxia to confirm or rule out other diagnosis

such as sensory integration dysfunction etc. The earlier you know -

the sooner to start appropriate therapies to get them up to speed by

kindergarten.

Don't let it overwhelm you -perhaps we aren't meant to know more

than what we have to know at each stage. We'll be here to help along

the way. It's OK to have any type of emotion when we find out our

child has more than a simple delay –or " more " than " just " verbal

apraxia. And it's OK to be completely overwhelmed and saddened to

find out your child has apraxia. And as I was one of those parents

it's never " just " apraxia when you find out!!!

It's OK to be upset " just " because your child is a " late talker " too!

Please know that I too believed Tanner to just have apraxia and have

my first message posted to a grouplist about that below…but down the

road found out he had a few other things we needed to help him

address. The incredible news is that the majority of our children if

you check history are up to speed to be mainstreamed by kindergarten-

and of course many have learned with communication impaired children

that it's best to start kindergarten at 6 vs. 5 to give them that one

extra year of therapy and developmental time.

If you have questions after reading the following please share them.

This group has always been a wealth of information for all of us, no

matter how long we've been here.

Below is a new member archived message to hopefully answer more of

your questions for now (did you read The Late Talker yet?) For updated

information on fish oils and vitamin E and more - please visit the

links section here

/links

What type of apraxic like speech behaviors are you seeing that makes

you and the SLP suspect your child has apraxia vs. a simple delay in

speech? Is your child talking at all yet? At your child's age -

without speech, it's difficult to diagnose verbal apraxia -they

could " suspect " verbal apraxia and begin treatment just in case,

which wouldn't hurt your child if he ended up just having a simple

delay. Just a few questions before we could provide more accurate

answers:

Does your child have signs of oral apraxia? (for example, can he on

command smile, imitate funny faces, blow bubbles...if you put peanut

butter anywhere around his mouth can he lick it off no matter where

it is?)

http://www.cherab.org/information/speechlanguage/oralapraxia.html

Does your child have any neurological " soft signs " such as hypotonia

or sensory integration dysfunction?

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

Who else evaluated your child? Was it only the SLP through your

town school or was he also in Early Intervention through the state?

(birth to three) Was he evaluated by both a speech pathologist as

well as an occupational therapist? Was/were they knowledgeable

about apraxia? (If your child wasn't diagnosed by an occupational

therapist as well and professionals suspect apraxia -I highly

recommend you request that too either through both the school as

well as private through insurance for many reasons)

To answer any questions you may have about taking your child to see a

neurodevelopmental MD if he has not yet been to one and apraxia is

suspected... in one word - " Yes!!! " I would have your child diagnosed

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

*having a " hero " on the outside of the school who can assist in a

therapeutic plan and oversee your child's development over the years

*advocacy support with the insurance company

* ruling out or confirming any neurological soft signs or any other

reasons for the delay in speech

*help those that ask " why isn't he talking yet " understand this is a

medical condition -and has nothing to do with your child's cognitive

ability. (if in your child's case it doesn't. Apraxia in itself

does not affect a child's cognitive ability -and speaking early or

late is no indication of a child's intelligence. Also contrary to

popular belief -most who have speech impairments have average to

above average intelligence)

Here's an article written by Neurodevelopmental Pediatrician Dr.

Marilyn Agin that was featured as a cover article in Contemporary

Pediatrics -a trade magazine for hundreds of thousands of pediatric

medical professionals across the US. (I wrote the parent guide)

" The " late talker " -when silence isn't golden

Not all children with delayed speech are " little Einsteins " or garden

variety " late bloomers. " Some have a speech-language disorder that

will persist unless warning signs are recognized and intervention

comes early. Includes a Guide for Parents. "

Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

http://contemporarypediatrics.modernmedicine.com/radio_peds4

Actual article (where you can read it for free)

http://drgreene.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

or

http://opsc.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

My parent guide still works (for free)

http://www.contemporarypediatrics.com/contpeds/data/articlestandard/contpeds/492\

\

004/136315/article.pdf

I would also have at least one private " out of pocket " (if possible)

exam with a knowledgeable speech pathologist as well. This SLP can

coordinate with your child's MD, and school therapist and other

professionals, and again be there to assist in a therapeutic plan,

help set goals and oversee your child's development over the years

if needed.

Networking with parents of other speech-impaired children is also

possibly one of the best moves you could make in your child's

recovery. Others will steer you to the " right " professionals and

programs in your area -and you won't feel so alone. I would HIGHLY

recommend joining a whose goal is to unite parents and

professionals. This group

/ is through CHERAB

http://www.cherab.org

The speechville website also has message boards so that you can talk

to other parents on particular topics.

http://www.speech-express.com/boards/

Check your state resources at Speechville to find local support

groups and resources.

http://www.speech-express.com/regional-resources.html

http://www.speech-express.com/communication-station/regional-support-groups.html

(BTW -for anyone who is either running or starting a support group -

due to The Late Talker book and the many who will see your group,

please make sure your info is up at this website and accurate)

For all your other questions including what type of testing -just

read " The Late Talker " . (Nike said 'Just Do It!' -I say 'Just Read

It!') At Amazon.com you can even start today and read sample pages

of the book online!

" The first book to show parents how to tell whether a child has a

speech delay -or a more serious speech disorder

Every parent eagerly awaits the day his or her child will speak for

the fist time. For millions of mothers and fathers, however,

anticipation

turns to anxiety when those initial, all-important words are a long

time

coming. Many worried parents are reassured that their child is " just

a late

talker, " but unfortunately, that is not always the case. Co-author

April 29, 2008

Hello, Joyce- welcome to the loop!

There are many women here who will be able to help you with the

supplements-- so I'll stay out of that one since it's not my area of expertise

whatsoever.

I just wanted to applaud you as the Grandma, for taking such an active role

in his life and wanting to help his situation! What a precious commodity you

are-- I am jealous!

My mother knew a Joyce Beck-- I'd be curious to see if this is you. If you

once knew a Lucia Vanover, please email me off-list at _TBNiesh@..._

(mailto:TBNiesh@...)

Becky

In a message dated 4/27/2008 3:17:28 P.M. Eastern Daylight Time,

joyce.beck@... writes:

Hi Everyone;

I am new to this group, and am the grandmother of a great little boy

who is 7 and has PDD and is non-verbal.

We are trying many things and was wondering what people do in this

group for developing speech?

I am not sure if he has apraxia, but would like to try some new things.

This is what he is currently taking;

Magnesium

Zinc

Vit.C

calcium

B-Complex

TriEnza enzymes

Childrens Probiotics

Omega Pure

Chelating with ALA every 3 hours day and 4 at night for 3 days on and

11 off.

GSE for yeast

We tried DMG but he cant handle this amino acid. Thanks everone. Joyce

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

May 2, 2008

i second that!!! he is lucky to have you so involved. -darcy

-------------- Original message --------------

From: tbniesh@...

Hello, Joyce- welcome to the loop!

There are many women here who will be able to help you with the

supplements-- so I'll stay out of that one since it's not my area of expertise

whatsoever.

I just wanted to applaud you as the Grandma, for taking such an active role

in his life and wanting to help his situation! What a precious commodity you

are-- I am jealous!

My mother knew a Joyce Beck-- I'd be curious to see if this is you. If you

once knew a Lucia Vanover, please email me off-list at _TBNiesh@..._

(mailto:TBNiesh@...)

Becky

In a message dated 4/27/2008 3:17:28 P.M. Eastern Daylight Time,

joyce.beck@... writes:

Hi Everyone;

I am new to this group, and am the grandmother of a great little boy

who is 7 and has PDD and is non-verbal.

We are trying many things and was wondering what people do in this

group for developing speech?

I am not sure if he has apraxia, but would like to try some new things.

This is what he is currently taking;

Magnesium

Zinc

Vit.C

calcium

B-Complex

TriEnza enzymes

Childrens Probiotics

Omega Pure

Chelating with ALA every 3 hours day and 4 at night for 3 days on and

11 off.

GSE for yeast

We tried DMG but he cant handle this amino acid. Thanks everone. Joyce

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

January 28, 2009

Hi Betty,

Welcome to the group. I'm currently on week number 36 of treatment. 12 more

weeks to go. Here are a few tricks that I have found helpful as I work through

this treatment

#1 I rest when I'm tired and/or when I can.

#2 I exercise daily. For the first 7 months, all I did was walk daily. The

walking certainly helped. These days, I go to the gym 5 days a week and I feel

even better. Remember, exertion breeds energy - just make sure to balance it

with plenty of rest.

#3 I always eat something (even if it's just a bowl of oatmeal or cereal with a

banana, a fruit bar works when you just need sustinence but it's not my

favorite, or a yogurt) about 15 minutes before I take the morning dose of

ribavirin. (If I take the pills on an empty stomach, it makes me sick and gives

me indigestion)..

#4 I have worked the entire time during treatment. Staying active has been a

blessing.

#5 On my shot day, I take two ibuprofens (Advil) before the shot, and then two

more after four hours. If at any time I start feeling woosey, chilled,

feverish, or achy, I take two more advils thereafter. I usually pop Advil at

least for the first 2 or three days after each shot. (Obviously, if you don't

have those kinds of systems, and you don't feel weird, don't worry about the

Advil. But for me, Advil is MY FRIEND.

#6 I do a gratitude list (mental or otherwise) everyday, especially on shot

day. I just tell myself how charmed my life is, how lucky I am to be clean and

sober, how lucky I am to have such a wonderful support network to help me

through this. (For me, Interferon intensify's all my feelings. All my emotions

are just underneath the surface. I have figured out if I get myself in a

grateful place before I do the shot, then I can generally cope and feel ok.

Again, I can't stress enough, don't forget the Advil.

#7 When I get stressed out, I say the Serenity Prayer.

#8 When I'm stuck inside my head, and when that inner voice starts telling me

that I'm a piece of shit, I pick up the phone and I call someone who is capable

of getting me out of my head. Being inside my head is like being in a bad

neighborhood, it's a place where I don't like to go alone.

#9 Finally, drink lots of water.

For you Betty, try to be gentle with yourself, and just know that there is a

finish line. And just know, we all want you to succeed. You are in my prayers.

I hope this helps. And good luck. It doesn't have to be so bad. But remember

there is nothing wrong with bitching and complaining from time to time. Just

make sure you bitch to someone who is sympathatic and compassionate.

And stay connected to this board. We're all just a post away.

________________________________

From: dominguezbettycam <dominguezbettycam@...>

Hepatitis C

Sent: Wednesday, January 28, 2009 5:15:30 PM

Subject: NEW TO THIS GROUP.

Hi my betty and i just joined the other day to this group. I have just

received my medications for my treatment plan. and I will let you know

how things go on friday when i start them. if there's anything I might

want to voice I hope that I can do it here.

thank you. betty from san diego

January 28, 2009

Hi Betty,

Welcome to the group. I'm currently on week number 36 of treatment. 12 more

weeks to go. Here are a few tricks that I have found helpful as I work through

this treatment

#1 I rest when I'm tired and/or when I can.

#2 I exercise daily. For the first 7 months, all I did was walk daily. The

walking certainly helped. These days, I go to the gym 5 days a week and I feel

even better. Remember, exertion breeds energy - just make sure to balance it

with plenty of rest.

#3 I always eat something (even if it's just a bowl of oatmeal or cereal with a

banana, a fruit bar works when you just need sustinence but it's not my

favorite, or a yogurt) about 15 minutes before I take the morning dose of

ribavirin. (If I take the pills on an empty stomach, it makes me sick and gives

me indigestion)..

#4 I have worked the entire time during treatment. Staying active has been a

blessing.

#5 On my shot day, I take two ibuprofens (Advil) before the shot, and then two

more after four hours. If at any time I start feeling woosey, chilled,

feverish, or achy, I take two more advils thereafter. I usually pop Advil at

least for the first 2 or three days after each shot. (Obviously, if you don't

have those kinds of systems, and you don't feel weird, don't worry about the

Advil. But for me, Advil is MY FRIEND.

#6 I do a gratitude list (mental or otherwise) everyday, especially on shot

day. I just tell myself how charmed my life is, how lucky I am to be clean and

sober, how lucky I am to have such a wonderful support network to help me

through this. (For me, Interferon intensify's all my feelings. All my emotions

are just underneath the surface. I have figured out if I get myself in a

grateful place before I do the shot, then I can generally cope and feel ok.

Again, I can't stress enough, don't forget the Advil.

#7 When I get stressed out, I say the Serenity Prayer.

#8 When I'm stuck inside my head, and when that inner voice starts telling me

that I'm a piece of shit, I pick up the phone and I call someone who is capable

of getting me out of my head. Being inside my head is like being in a bad

neighborhood, it's a place where I don't like to go alone.

#9 Finally, drink lots of water.

For you Betty, try to be gentle with yourself, and just know that there is a

finish line. And just know, we all want you to succeed. You are in my prayers.

I hope this helps. And good luck. It doesn't have to be so bad. But remember

there is nothing wrong with bitching and complaining from time to time. Just

make sure you bitch to someone who is sympathatic and compassionate.

And stay connected to this board. We're all just a post away.

________________________________

From: dominguezbettycam <dominguezbettycam@...>

Hepatitis C

Sent: Wednesday, January 28, 2009 5:15:30 PM

Subject: NEW TO THIS GROUP.

Hi my betty and i just joined the other day to this group. I have just

received my medications for my treatment plan. and I will let you know

how things go on friday when i start them. if there's anything I might

want to voice I hope that I can do it here.

thank you. betty from san diego

January 28, 2009

>

> Hi my betty and i just joined the other day to this group. I have

just

> received my medications for my treatment plan. and I will let you

know

> how things go on friday when i start them. if there's anything I

might

> want to voice I hope that I can do it here.

> thank you. betty from san diego

>Hi Betty my name is a if u font mind how many weeks of

treatment do u have to do. I did 48 weeks of treatment. I just went

today for my 6 months blood work. I have geno type 1-A which do u have.

I hope for a response, after all I have never had any responses since I

first found the site when I was diagnosied a little over 2 years ago. I

hope u do well with the treatment.

a

January 28, 2009

>

> Hi my betty and i just joined the other day to this group. I have

just

> received my medications for my treatment plan. and I will let you

know

> how things go on friday when i start them. if there's anything I

might

> want to voice I hope that I can do it here.

> thank you. betty from san diego

>Hi Betty my name is a if u font mind how many weeks of

treatment do u have to do. I did 48 weeks of treatment. I just went

today for my 6 months blood work. I have geno type 1-A which do u have.

I hope for a response, after all I have never had any responses since I

first found the site when I was diagnosied a little over 2 years ago. I

hope u do well with the treatment.

a

January 28, 2009

a,

I hope your blood work comes back with undetectable levels. My nurse just gave

me data recently that suggests those people who remain undetectable 6 months

after completion of treatment, 98% of those people still remained undetectable

after four years. That is some really encouraging news. I hope you and I are

both part of the 98%.

Good luck.

Deron

________________________________

From: krstnburton <krstnburton@...>

Hepatitis C

Sent: Wednesday, January 28, 2009 9:54:54 PM

Subject: Re: NEW TO THIS GROUP.

>

> Hi my betty and i just joined the other day to this group. I have

just

> received my medications for my treatment plan. and I will let you

know

> how things go on friday when i start them. if there's anything I

might

> want to voice I hope that I can do it here.

> thank you. betty from san diego

>Hi Betty my name is a if u font mind how many weeks of

treatment do u have to do. I did 48 weeks of treatment. I just went

today for my 6 months blood work. I have geno type 1-A which do u have.

I hope for a response, after all I have never had any responses since I

first found the site when I was diagnosied a little over 2 years ago. I

hope u do well with the treatment.

a

January 28, 2009

a,

I hope your blood work comes back with undetectable levels. My nurse just gave

me data recently that suggests those people who remain undetectable 6 months

after completion of treatment, 98% of those people still remained undetectable

after four years. That is some really encouraging news. I hope you and I are

both part of the 98%.

Good luck.

Deron

________________________________

From: krstnburton <krstnburton@...>

Hepatitis C

Sent: Wednesday, January 28, 2009 9:54:54 PM

Subject: Re: NEW TO THIS GROUP.

>

> Hi my betty and i just joined the other day to this group. I have

just

> received my medications for my treatment plan. and I will let you

know

> how things go on friday when i start them. if there's anything I

might

> want to voice I hope that I can do it here.

> thank you. betty from san diego

>Hi Betty my name is a if u font mind how many weeks of

treatment do u have to do. I did 48 weeks of treatment. I just went

today for my 6 months blood work. I have geno type 1-A which do u have.

I hope for a response, after all I have never had any responses since I

first found the site when I was diagnosied a little over 2 years ago. I

hope u do well with the treatment.

a

January 29, 2009

I finished tx last February. I tested undetectable this past September (9

months post) and my MD said that I now have a 99.9% chance of remaining so.

I don't test again till May.

I was fortunate in that I tested undetectable early into tx - about 4 weeks

after starting. I did have problems with low hemoglobin very early though

and was on Procrit right away too.

I am so glad that I decided to go forward with tx as it was certainly

worthwhile and wish all the same luck!!

_____

From: Hepatitis C

[mailto:Hepatitis C ] On Behalf Of Deron Giuliani

Sent: Thursday, January 29, 2009 1:27 AM

Hepatitis C

Subject: Re: Re: NEW TO THIS GROUP.

a,

I hope your blood work comes back with undetectable levels. My nurse just

gave me data recently that suggests those people who remain undetectable 6

months after completion of treatment, 98% of those people still remained

undetectable after four years. That is some really encouraging news. I

hope you and I are both part of the 98%.

Good luck.

Deron

January 29, 2009

I finished tx last February. I tested undetectable this past September (9

months post) and my MD said that I now have a 99.9% chance of remaining so.

I don't test again till May.

I was fortunate in that I tested undetectable early into tx - about 4 weeks

after starting. I did have problems with low hemoglobin very early though

and was on Procrit right away too.

I am so glad that I decided to go forward with tx as it was certainly

worthwhile and wish all the same luck!!

_____

From: Hepatitis C

[mailto:Hepatitis C ] On Behalf Of Deron Giuliani

Sent: Thursday, January 29, 2009 1:27 AM

Hepatitis C

Subject: Re: Re: NEW TO THIS GROUP.

a,

I hope your blood work comes back with undetectable levels. My nurse just

gave me data recently that suggests those people who remain undetectable 6

months after completion of treatment, 98% of those people still remained

undetectable after four years. That is some really encouraging news. I

hope you and I are both part of the 98%.

Good luck.

Deron

January 29, 2009

Hi Dorothy, welcome Betty, Hello a & Deron,

I too had 48 weeks of treatment. I finished August 2008. I will get my 6 month

test at the end of February and am hoping for the best. It was a tough road,

but I got through it. When ever I started to feel sorry for myself, I went to

the St. Jude's website and read story after story of the kids that are dying. I

have lived over half my life and some of the kids won't life until they are 10.

I then saw how grateful I should be and am. I too worked the entire time, and

tried to exercise as much as possible. Some of the side effects of treatment

are joint//muscle aches. I did my shots on Friday so that I would have the

weekend to recoop! Please stay with this board....loads of info, support and

great people!

From: Dorothy <dorv@...>

Subject: RE: Re: NEW TO THIS GROUP.

Hepatitis C

Date: Thursday, January 29, 2009, 9:16 AM

I finished tx last February. I tested undetectable this past September (9

months post) and my MD said that I now have a 99.9% chance of remaining so.

I don't test again till May.

I was fortunate in that I tested undetectable early into tx - about 4 weeks

after starting. I did have problems with low hemoglobin very early though

and was on Procrit right away too.

I am so glad that I decided to go forward with tx as it was certainly

worthwhile and wish all the same luck!!

_____

From: Hepatitis Csupportgr oupgroups (DOT) com

[mailto:Hepatitis Csupportgr oupgroups (DOT) com] On Behalf Of Deron Giuliani

Sent: Thursday, January 29, 2009 1:27 AM

Hepatitis Csupportgr oupgroups (DOT) com

Subject: Re: Re: NEW TO THIS GROUP.

a,

I hope your blood work comes back with undetectable levels. My nurse just

gave me data recently that suggests those people who remain undetectable 6

months after completion of treatment, 98% of those people still remained

undetectable after four years. That is some really encouraging news. I

hope you and I are both part of the 98%.

Good luck.

Deron

January 29, 2009