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Lori:

I hope all goes well with having your gallbladder removed on

Thursday. I feel exactly the same type urq pain that you described. It's

always there and can feel 'something' when I bend over or deep breath.

Sometimes hurts worse than others, but mostly SOMETHING IS THERE.

I'm curious if most in the group started out having their gallbladder

removed or how related it is to the liver problems.

Judy

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Judy,

I, in my heart, feel that all my problems started with the removal of my

gallbladder. My surgeon (I use that word loosely) clipped 2 bile ducts

while doing the surgery and the bile leaked internally undetected for 3

weeks. That was the start of my downhill slide.

SueB.

----------

> From: JBerry122@...

> onelist

> Subject: Re: [ ] Lori

> Date: Wednesday, 23 June 1999 1:00

>

> From: JBerry122@...

>

> Lori:

> I hope all goes well with having your gallbladder removed on

> Thursday. I feel exactly the same type urq pain that you described. It's

> always there and can feel 'something' when I bend over or deep breath.

> Sometimes hurts worse than others, but mostly SOMETHING IS THERE.

> I'm curious if most in the group started out having their gallbladder

> removed or how related it is to the liver problems.

> Judy

>

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

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Guest guest

Judy,

I, in my heart, feel that all my problems started with the removal of my

gallbladder. My surgeon (I use that word loosely) clipped 2 bile ducts

while doing the surgery and the bile leaked internally undetected for 3

weeks. That was the start of my downhill slide.

SueB.

----------

> From: JBerry122@...

> onelist

> Subject: Re: [ ] Lori

> Date: Wednesday, 23 June 1999 1:00

>

> From: JBerry122@...

>

> Lori:

> I hope all goes well with having your gallbladder removed on

> Thursday. I feel exactly the same type urq pain that you described. It's

> always there and can feel 'something' when I bend over or deep breath.

> Sometimes hurts worse than others, but mostly SOMETHING IS THERE.

> I'm curious if most in the group started out having their gallbladder

> removed or how related it is to the liver problems.

> Judy

>

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

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  • 1 year later...

I a on the immunosupressant Neoral, which I take 12 mgs twice daily and I

take Cellcept 1 gram twice daily 12 hours between does such as 8:00 am and

8:00 pm Lori C.

Re: [ ] Lori

>Lori, what kind of medication do you take every 12 hours?

>

>Rosemary

>

>

>

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Sorry that was a typ~O I take 125 mgs of Neoral twice a day not 12!!! Lori

Re: [ ] Lori

>

>

>>Lori, what kind of medication do you take every 12 hours?

>>

>>Rosemary

>>

>>

>>

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  • 2 months later...

Yes, I get the poking feeling throughout the day when I am either 1) Cleansing

myself pretty strongly with herbs and oils, and 2) when I eat a lot of sugar. (I

think they have a party then,

or something. ;-) )

I don't think they die, I think they have to leave the body. So maybe you are

feeling them on their way to being evacuated. Also, I notice they are much more

active around the full moon,

which was last month.

Good luck, and hang in there!

Pamela

Fish wrote:

> Hi Pamela,

>

> Are you actually seeing the worms in your stools? Do you have any poking

> feeling in the abdomen?? the poking feeling for me was in the evenings now

> I am getting them all day long. Why dont they just die? Why are they so

> active. I am taking the black walnut, as much as I can tolerate. If I take

> too much I get bedridden with fatigue!!

>

> Lori

>

>

> Subscription email:

> mailto:bowel cleanse-subscribeegroups

>

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Pamela wrote:

> Yes, I get the poking feeling throughout the day when I am either 1) Cleansing

myself pretty strongly with herbs and oils, and 2) when I eat a lot of sugar. (I

think they have a party then,

> or something. ;-) )

>

> I don't think they die, I think they have to leave the body. So maybe you are

feeling them on their way to being evacuated. Also, I notice they are much more

active around the full moon,

> which was last month.

Sorry, meant to say " last Monday " .

Thanks.

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  • 1 month later...

In a message dated 2/6/01 4:52:34 PM Pacific Standard Time, barbara99ann@... writes:

P.S. hello to the new people, I'm very sorry you have to be here!

Barbara Ann, we're very lucky to have this resource. I certainly appreciate it greatly.

Harper (AIH 5/00, 57, doing well)

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In a message dated 2/6/01 7:55:26 PM Pacific Standard Time, gefox@... writes:

Lorei... I agree with Barbara..... when my enzymes went up in Sept. the

transplantcenter was on me immediately I went in right away to have a Pt

and PPT and the next day I was up at the Clinic getting a biopsy. They

feared rejection and told me time was important also the farther away

from transplant you get the more dangerous rejection becomes as it is

harder to resolve. Of course in my case I was Dx`d AIH . The point being

something is up and the faster you find out the better. I pray all will

be well.

Jerry

Transplant Oct. 95 AIH `00

Lorei, all I can say is that you can't assume other people will notice what you need, and being polite is totally inappropriate when your health is seriously at stake. Good luck, keep us in touch.

Harper

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Yes, I couldn't agree more. I have made lasting friendships in this

group. The people are the best on the net!

Barbara Ann

> >

> Barbara Ann, we're very lucky to have this resource. I certainly

appreciate

> it greatly.

> Harper (AIH 5/00, 57, doing well)

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Lorei... I agree with Barbara..... when my enzymes went up in Sept. the

transplantcenter was on me immediately I went in right away to have a Pt

and PPT and the next day I was up at the Clinic getting a biopsy. They

feared rejection and told me time was important also the farther away

from transplant you get the more dangerous rejection becomes as it is

harder to resolve. Of course in my case I was Dx`d AIH . The point being

something is up and the faster you find out the better. I pray all will

be well.

Jerry

Transplant Oct. 95

AIH `00

p.s. I`m on Prograf

Hi Lori,

I'm sorry to hear this news. I don't mean to sound like a know it all,

BUT.......I don't understand why you are waiting until Monday to go to

Mayo. My information is 4 or 5 years old, I was told that with

rejection you have to be treated immediately. That a wait of even one

or two days can result in loss of the graft. Maybe things have changed

but I do find it alarming that you are waiting almost a week before

going to Mayo. Have they ruled out CMV? What if it's an infection? I

don't know, a week seems like an awfully long time to go untreated with

'sky high' enzymes.

I had an incident when I was 15 months out. My enzymes were in the 300

range and I was told to get to the center immediately. They discovered

that the Neoral stopped working. To this day it is unexplained. They

switched me to Prograf, I stopped taking Prednisone...so far, so good.

Please double check to be sure that Mayo agrees it's okay to wait until

Monday.

I'm sorry I haven't written lately (in the last year). I try to keep

tabs on the other 'old timers' whenever I can, especially those with

transplants.

My thoughts and prayers are with you. Please let us know how you are

doing.

God bless,

Barbara Ann

AIH, TX 12/94

P.S. hello to the new people, I'm very sorry you have to be here!

__________________________________________________

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  • 2 weeks later...

Hi Lori: I am very saddened by the fact that AIH is causing you trouble

again and is messing with your new liver. Of course this is news that I

didn't want to hear about someone that's had a transplant but I knew it could

happen. Jodi and I fly to Miami next Thursday and I have three of the test

required to see if I'm going to be her donor. I have no idea how many test

are needed all together but they will do two or three at a time until one

comes back bad or their all done. I can understand why you hate to go back

on Prednisone so badly but as you said that's all they know to do right now.

My prayer is someone finds out what causes AIH and a cure. Also that you

will be able to get the monster under control again. Take care and God

bless, Genny/Jodi's Mom

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Thank you, and I hope things go well with your testing! I talked with a

woman and her daughter while I was at Mayo, we were in outpatient surgery. I

was waiting to go for my liver biposy and she was done with hers. The54 year

old woman was From St. Cloud, MN and was the 3rd person to recieve a donor

liver from a living person at Mayo. They just approved doing the living

donor liver tx's in May 2000 and she had her transplant in Oct 2000 and was

there for her 4 month checkup adn was doing very well. SHe had NASH. Her 30

year old daughter was her donor. It was so wonderful to talk to them, we got

to talk about a half and hour. I wish you and your daughter Jodi much

luck!!!!!!!!!!

Take care!!! Lori C.

Re: [ ] Lori

>Hi Lori: I am very saddened by the fact that AIH is causing you trouble

>again and is messing with your new liver. Of course this is news that I

>didn't want to hear about someone that's had a transplant but I knew it

could

>happen. Jodi and I fly to Miami next Thursday and I have three of the test

>required to see if I'm going to be her donor. I have no idea how many test

>are needed all together but they will do two or three at a time until one

>comes back bad or their all done. I can understand why you hate to go back

>on Prednisone so badly but as you said that's all they know to do right

now.

>My prayer is someone finds out what causes AIH and a cure. Also that you

>will be able to get the monster under control again. Take care and God

>bless, Genny/Jodi's Mom

>

>

>

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  • 2 months later...
Guest guest

Hey --- I would gladly give you some of mine!

LORI

> Lori, are you a teacher? I am and I agree HE double hockey sticks

> (kindergarten) I swear the kids are posessed after they finish the

> state testing..... woe is me

>

> and as for all this " butt " stuff.... i would just like to say...I

> HAVE NO BUTT--- NONE!!! i am so ashamed, but the MGB has left me

> butt-less. Tragic, I know, but so true. What I DO have is an

> abundance of belly....... lol

>

> oh well.....

> xoxoxo

> S in VA :)

>

>

>

>

> > > Lori--

> > >

> > > Darvocets have Tylenol in them--ask for Versed--its an IV drug

> and

> > is pretty

> > > good at helping you relax and forget things that are happening.

> > Don't drive

> > > though.

> > >

> > > Caron

> > >

> > >

> > >

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Guest guest

thanks julie..... but i am not taking donations.... only exchanges,

now do you want to swap for belly or thigh??? xoxoxo

S in VA

> > > > Lori--

> > > >

> > > > Darvocets have Tylenol in them--ask for Versed--its an IV drug

> > and

> > > is pretty

> > > > good at helping you relax and forget things that are

happening.

> > > Don't drive

> > > > though.

> > > >

> > > > Caron

> > > >

> > > >

> > > >

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  • 4 months later...

Yep, that's what I like about this group. You've heard the

saying, " It takes one to know one " , " Been there, done that " , etc. I

do think my confidence is starting to build, it just takes time. It

took me a good 30 years to get in this pit, I guess I can wait a

while longer on the getting out of the pit.

I won't be able to make the Christmas party. I was lucky to be able

to do the picnic so soon after my daughter's wedding. Don't want to

push things with my hubby. I will keep Vegas in mind though. I

don't know if I could get him to go to Vegas or not. That kind of

thing is not really his scene. When we went on our cruise he was

only in the casino for a total of about 15 minutes. He just prefers

to stay out of that kind of setting. The old playmates and play

places type thing.

Bonded by our experience, strength and hope

Rhonda

MGB 11/30/00

279/185.5/1??

> > > > > > > Rhonda,

> > > > > > >

> > > > > > > I, too, was overwhelmed by all the people. Maybe many

of

> > us

> > > > have

> > > > > > > these built in inferiority complexes, maybe not. I

know

> I

> > > do.

> > > > > > > Everyone seemed so THIN and so BEAUTIFUL to me and I

felt

> > > like

> > > > a

> > > > > > > preop, still waiting to come out of my cocoon. The

first

> > > other

> > > > > > MGBer

> > > > > > > who spoke to me told me that I looked nothing like my

> photo

> > > and

> > > > > so

> > > > > > I

> > > > > > > spent the weekend feeling fatter and uglier than I

> usually

> > > > > > do...UGH...

> > > > > > >

> > > > > > > I WISH I could have met everyone, felt comfortable and

> > > enjoyed

> > > > it

> > > > > > > more. I DID enjoy it, but not as much as I could

have.

> I

> > > also

> > > > > > felt

> > > > > > > bad because I was from far away, had never been there,

> had

> > no

> > > > > > > littermates and did not feel bonded the way I wanted

to.

> I

> > > > truly

> > > > > > > felt like the ugly stepchild so I hibernated a good

deal

> of

> > > the

> > > > > > time

> > > > > > > in my room with my friend, . Thankfully, some

folks

> > > > allowed

> > > > > > us

> > > > > > > to hang out with them (thanks Margaret, Vicki, Bankie,

> > Manda,

> > > > Pat

> > > > > > and

> > > > > > > Sharon)...if not, I would have probably cried for

having

> > > wasted

> > > > a

> > > > > > > trip...

> > > > > > >

> > > > > > > It broke my heart to meet Sassy in a hit and run...I

had

> > told

> > > > my

> > > > > > > friend so much about her and then to say " hi~bye " ,

well,

> it

> > > > felt

> > > > > > > worse than maybe not even meeting. And Flo...gosh how

> much

> > I

> > > > > look

> > > > > > up

> > > > > > > to her...I wanted to tell her so, but the opportunity

> just

> > > > didn't

> > > > > > > present itself.

> > > > > > >

> > > > > > > I think that some of us just can assimilate better than

> > > > others??

> > > > > I

> > > > > > > just wish I had more memories and less regrets.

> > > > > > >

> > > > > > > Ugly but honest,

> > > > > > > in Ark

> > > > > > > still glad I went because the few I did get to know

were

> > > worth

> > > > it!

> > > >

> > > >

> > > >

> > > >

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--- Larice,

I ve had my share of trials and tribulations!!!

Thank God I bounced back each time and didnt let much of " self " slip

away, " just the eating got away with me.. "

Was the picnic not a blast???

I m sorry I didnt get to talk with you, I felt overwhelmed and

frustrated, I remember, Ellen Byrd was leading me toward ,

she was going to intoduce me to her, I was following Ellen to her,

but then we got swallowed up in the wave....

next time!!!!!

Maybe next outing we can make co-operative groups, and this way we

can all get to know one another! We call this THINK -PAIR N SHARE!!!!

TGIF!!!!

Lori always rush'n somewhere.....(

Got home at midnight away football game Josh(oldest) is a QB freshman)

In @y..., Larice C White <artstart@j...> wrote:

> thanks for the incredible words of wisdom, saw you at the picnic,

didn't

> catch you to chat. I feel the same way you do, but in baby steps

for

> now. Larice

>

> Larice White

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  • 1 month later...

Lori, I hate to see you had an AIH flareup three years after transplant. I am coming up on 4 years however I am very aware of the % of people who do reoccur. Can I ask how they could tell? I am told rejection and AIH flare-up look the same and are treated the same. Even by biopsy which I have all the time it seems, there is no histological difference. They explained they wanted to keep my prograf between 8-10 to keep me well immunosuppressed beacause of the AIH. I do not take prednisone or medrol, just 2.5/2.5 prograf. I'm interested in what ha[pened and what they did. I hate the idea of being back on predinisone.

Appreciate the info.

Patty AIH 1980, Tx 1998 (miami)

-----Original Message-----From: Lori Cummins [mailto:tlknj@...]Sent: Tuesday, November 13, 2001 8:56 AM Subject: Re: [ ] metabolife

Gayle I thought your transplant was in June 1999 that would make it only 2 years and 5 months months since your transplant. Am I right or am I wrong??

Congrats to Heidi on her baby. I have not been on much as I became a Grandma at the age of 35. My 16 yo daughter got pregnant and decided to keep the baby, so I have been busy watching him while she goes to school. She is a junior in high school. My grandson's name is and he weighed 7 lbs 8 oz at birth and is now at 13 lbs 4 oz and he will be 3 months old on Nove 20th as he was born August 20th. He is so precious. I will send a pic as soon as I get my CD ROM drive fixed on computer cause I have pics on CD ROM.

Take care all!!

I read everyday, but just don't post very often.

Lori Cummins

Liver TX 3~11~97

AIH flare in 2~2001

RE: [ ] metabolife

Gayle,

Happy birthday! It's hard to believe it's three years! and I know you have not had an easy time of it. My doctors are also protective of me and I can't take any herbal medications. This may be cheating but the guy who cuts my hair uses a tree tea conditioner and it feels (tingles down to my knees) and smells wonderful. My sister swears by tree tea oil and I used it a couple of times pre-transplant in my bath for the itching.

Again, congratulations,

Patty AIH 1980, transplant 1998

-----Original Message-----From: galye@... [mailto:galye@...]Sent: Saturday, November 10, 2001 11:50 AM Subject: Re: [ ] metabolifeTheresa, I almost died from too much Tylenol. The Tylenol completely shut my liver down to the size of a fist. I could never find a way to sue them but if you come up with a way tell me. They call mine liver failure Tylenol abuse even though it was my doctor stupidity. Look at the ingredients of Metabolife does it have Ephedrine in it? I just found out Red Bull is harmful to livers as well. As a rule my transplant doctors will not allow me to take ANYTHING over the counter. And I know many here will disagree with me over herbs. They do not have enough education or studies to prove that herbs does nothing but harm your body. But if the docs allow you to take herbs it is because the harm is already done to your liver. After transplant they can be very strict with you and expect you to take charge of the maintenance of your body that means no herbs. I trust my transplant team totally and am thankful they care so much. Today is my 3rd birthday after transplant I should be dead right now. So I am happy to still be with my family and friends. gayle trans/6-99 ^oo^ galye@...

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Oh sorry I am 4 year 8 months post transplant, Gayle is almost 3 years post tx. I had my flare in February 2001 when I was just a month shy of 4 years post tx.

I had a biopsy done and they concluded from that. My liver enzymes had begun to creep up. I was on Neoral, Cellcept and prednisone after transplant. In Sept 1999 I was off the prednisone. Then in November 2000 they decided to put me on the generic form of Neoral called Gengraf, and told me to stop taking the cellcept. They said my numbers had been stable so long they wanted to try to cut down the meds to reduce the chances of side effects( Cancers, ect.) I was very leery of doing it, but my coordinator insisted I enjoy not taking so many pills. So from then on my liver enzyes just kept elevating until February and then I went To Mayo and the did the biopsy. So back on prednisone and cellcept both. I had lost 40 pounds of the weight I had gained from right after transplant and have now put it back on . Prednisone and I are not good friends!!!!!! LOL my enzymes are back to normal now and I am weaning down on prednisone, I am at 3 mgs a day. Have to stay on the cellcept. I just wish they would have left a good thing alone. But I do understand where they were coming from too. I do not need cancer.

Take care!!!

Lori C.

RE: [ ] metabolife

Gayle,

Happy birthday! It's hard to believe it's three years! and I know you have not had an easy time of it. My doctors are also protective of me and I can't take any herbal medications. This may be cheating but the guy who cuts my hair uses a tree tea conditioner and it feels (tingles down to my knees) and smells wonderful. My sister swears by tree tea oil and I used it a couple of times pre-transplant in my bath for the itching.

Again, congratulations,

Patty AIH 1980, transplant 1998

-----Original Message-----From: galye@... [mailto:galye@...]Sent: Saturday, November 10, 2001 11:50 AM Subject: Re: [ ] metabolifeTheresa, I almost died from too much Tylenol. The Tylenol completely shut my liver down to the size of a fist. I could never find a way to sue them but if you come up with a way tell me. They call mine liver failure Tylenol abuse even though it was my doctor stupidity. Look at the ingredients of Metabolife does it have Ephedrine in it? I just found out Red Bull is harmful to livers as well. As a rule my transplant doctors will not allow me to take ANYTHING over the counter. And I know many here will disagree with me over herbs. They do not have enough education or studies to prove that herbs does nothing but harm your body. But if the docs allow you to take herbs it is because the harm is already done to your liver. After transplant they can be very strict with you and expect you to take charge of the maintenance of your body that means no herbs. I trust my transplant team totally and am thankful they care so much. Today is my 3rd birthday after transplant I should be dead right now. So I am happy to still be with my family and friends. gayle trans/6-99 ^oo^ galye@...

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  • 4 months later...
Guest guest

In a message dated 4/14/02 11:29:05 PM Pacific Daylight Time, writes:

I'm feeling so helpless and is getting worse all the time whether it's from the increased meds or from the AIH causing her more problems I don't know. I'm so afraid, I just want my little girl back.

I'm sorry I know that everyone has their own problems but I just have to share with someone who understands.

Thanks so much to everyone.

Lori ('s Mom)

I'm sorry you and are having such a difficult time. Many people here have PSC, and I'm sure they can give you more information. I imagine you know that Urso/Actigal are possible treatments, at least in adults. Best wishes.

Harper

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  • 10 months later...
Guest guest

Yet, not all of us see this as " giving up... "

There is always more than one way to get there....

While I chose treatment, I would have been comfortable with choosing no

treatment, given the circumstances. However, I would still have needed

to take steps to protect my liver.

m

Lori

We do understand your right to your choice. I think we just hate to

see someone give up without much of a fight.

And you do have our support. I truly hope you do not have enough

liver damage to even warrant needing treatment.

LeighAnn

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  • 4 months later...
Guest guest

Hi Amy!

I know the I'm-feeling-better-so-I'll-stop-taking-my-supplements gig all too

well. I think it's human nature. I had a friend with schizophrenia, he used to

go off his medication for a few days every few months. I just went through that

with my vitamins about a month ago. Taking 20 pills 4x/day got really old. But,

I feel so much better when I take them it's unbelievable.

Yep, Evening Primrose comes in capsules. I take 2000mg twice a day. It contains

GLA (Gamma Linolenic Acid). Here's some info on it:

http://www.healthandage.com/html/res/com/ConsSupplements/GammaLinolenicAcidGLAcs\

..html

I totally agree with you about the need for supplementation. There are so many

factors in our society that have increased our need for vitamins, that I think

it's impossible to get enough from our food, which is (like you said) already

depleted. Stress, toxins, pollution, sugary & refined foods ~ all things that

didn't exist in such high quantities until 100 years ago.

Lori

Lori

About 3 years ago I was taking my Shaklee suppliments religiously and

god I felt so much better than I do now...Iknow in my head that once

you begin to feel better you should CONTINUE to take what you're

taking...why is it that we quit?? LOL Just started back on them

yesterday and have an order in as we speak.

Does the prime rose oil come in a capsule?

I think our bodies, over the years, have generally become weaker in

some leavels....so we really NEED supplimentation...I know there are

those that think we can get all we need from food, but I've studied

this over the years and the soil in the US is totally void of

Zinc...so we need that and it's a growth mineral...no wonder kids

are " shorter " now than 20 years ago....

Keep in touch.

~Amy~

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  • 2 weeks later...
Guest guest

,<<<<<<<<<<<< When I use the term " meltdown " , is it to describe when my son

falls apart emotionally. With my son, it can be crying (usually very loud

wailing) and often includes running from the room or building, or perhaps

falling to the floor. Often it includes raging in anger, and irrational

outbursts.>>>>

Lori, you are wrong, this is MY son's meltdown/outburst! lol

F

Re: ( ) anyone tried Karate?

>

>

> > My 8 year old son has been asking to do Karate. I took him to an

> > introductory session this afternoon, and it was 45 minutes long,

> and he was

> > able to do the relatively simple drills and obstacle courses they

> put them

> > through. He enjoyed it, and wants to sign up for a 6 month stint.

> >

> > Do any of you have your kids in Karate?

> >

> > I let my son join bowling a while back, but the other kids

> progressed in

> > skill, and he did not (due to poor muscle tone and coordination).

> This left

> > him very frustrated emotionally, and meltdowns when throwing gutter

> ball

> > after gutter ball while watching the other kids become proficient.

> >

> > I am concerned I am setting him up for more frustration.

> >

> > Anyon have any thoughts or experiences to share?

> >

> > Lori

>

> Sometimes you have to bite the bullet. And pray for the best. Soccer

> just about did me in. Twas awful. I figure eventually one will take

> though. How's that for positive thinking? :)

>

> Hugs, a

>

>

>

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