Missy

[Guest guest]

Honey, I am so sorry that your mom passed. I'm sure that if she could have

stayed with you and your sister, she would have. She sounds like a wonderful

woman, I do wish I could have met her. And I truly believe that God sent you

the rain to let you know she is alright. You, your sister and your mom will

continue to be in my prayers. Dana said it so beautifully, God did not give her

pain, He took it away.

I don't know if this will help you or not, but I'll tell you what I did when my

dad died. He had suffered with Parkinson's disease for 8 years. The last two

years were horrible, and the last 6 months were the worst, he just lay in bed in

a fetal postion, not being able to move or talk. Parkinson's kills the nerves

in the body. The worst part was that his mind was fine - he was trapped in his

own body. I think for me, the grief was worse when he was alive. I was so

devastated when he died, but glad for him that he was going to be whole and pain

free again. I still feel him with me and it was 6 years ago that he left.

What I did was to gather up all my pictures and get pictures to copy of my dad

from other people. I made a scrapbook of his life. I just told his story from

my point of view. I wrote down all the things I remembered about him. I didn't

include any of the pictures of him when he was really sick. I cried my guts out

the whole time I was doing it, but there were lots of times I smiled and

laughed, too. I think that's how I went through my grieving process. It took a

while for me to look at the book and not to cry. But that day came, and now the

scrapbook gives me so much comfort. When I look at it, he is still alive and

well to me, and I realize that I will see him this way again someday. Maybe you

could do something like this for your mom. To me, I feel like I created a

legacy for him, so that my children and someday my grandchildren will feel like

they knew him like I did.

I hope you have family and friends around you to help you and your sister at

this time. Hugs are so healing. And remember, we are here for you, too. I

wish I knew what to say to make things better for you, I know how hard this is.

Much love,

Marilyn

Re: Re: Missy and China

Hello Marilyn:

I just wanted to let you know that we need your prayers my Mom passed

away at 11:57 Monday night. Monday morning my sister could not get her to

respond so she called 911 and they rushed her to er. They tried dialsys but she

could not withstand it after 20 minutes. Her kidneys and liver had shut

completely down and she was bleeding out of her mouth and her arm where they

tried to start an iv and take blood. Mom always said that if it rains when

someone passes away that they are happy well it had been hot here all day and

then after she passes on we stepped outside and it started pouring the rain i

knew that she was happy and not suffering any more she is all around me and i

hope it stays that way thank you for talking to me will you please pray for me

and my sister to have some kind of understanding to all of this and you are in

my prayers and thoughts thank you so much i wish everyone could have met my Mom

she was a wonderful person i love her so much

thank you

your friend Missy

[Guest guest]

Honey, I am so sorry that your mom passed. I'm sure that if she could have

stayed with you and your sister, she would have. She sounds like a wonderful

woman, I do wish I could have met her. And I truly believe that God sent you

the rain to let you know she is alright. You, your sister and your mom will

continue to be in my prayers. Dana said it so beautifully, God did not give her

pain, He took it away.

I don't know if this will help you or not, but I'll tell you what I did when my

dad died. He had suffered with Parkinson's disease for 8 years. The last two

years were horrible, and the last 6 months were the worst, he just lay in bed in

a fetal postion, not being able to move or talk. Parkinson's kills the nerves

in the body. The worst part was that his mind was fine - he was trapped in his

own body. I think for me, the grief was worse when he was alive. I was so

devastated when he died, but glad for him that he was going to be whole and pain

free again. I still feel him with me and it was 6 years ago that he left.

What I did was to gather up all my pictures and get pictures to copy of my dad

from other people. I made a scrapbook of his life. I just told his story from

my point of view. I wrote down all the things I remembered about him. I didn't

include any of the pictures of him when he was really sick. I cried my guts out

the whole time I was doing it, but there were lots of times I smiled and

laughed, too. I think that's how I went through my grieving process. It took a

while for me to look at the book and not to cry. But that day came, and now the

scrapbook gives me so much comfort. When I look at it, he is still alive and

well to me, and I realize that I will see him this way again someday. Maybe you

could do something like this for your mom. To me, I feel like I created a

legacy for him, so that my children and someday my grandchildren will feel like

they knew him like I did.

I hope you have family and friends around you to help you and your sister at

this time. Hugs are so healing. And remember, we are here for you, too. I

wish I knew what to say to make things better for you, I know how hard this is.

Much love,

Marilyn

Re: Re: Missy and China

Hello Marilyn:

I just wanted to let you know that we need your prayers my Mom passed

away at 11:57 Monday night. Monday morning my sister could not get her to

respond so she called 911 and they rushed her to er. They tried dialsys but she

could not withstand it after 20 minutes. Her kidneys and liver had shut

completely down and she was bleeding out of her mouth and her arm where they

tried to start an iv and take blood. Mom always said that if it rains when

someone passes away that they are happy well it had been hot here all day and

then after she passes on we stepped outside and it started pouring the rain i

knew that she was happy and not suffering any more she is all around me and i

hope it stays that way thank you for talking to me will you please pray for me

and my sister to have some kind of understanding to all of this and you are in

my prayers and thoughts thank you so much i wish everyone could have met my Mom

she was a wonderful person i love her so much

thank you

your friend Missy

[Guest guest]

Dear Marilyn:

Thank you for responding we dont have alot of family my Mom had one brother

and my husbands family will all be here and my sisters boyfriend has a big

family and they have all been here. My MOM was a big picture preson about

everything we done we have so many pictures we went through the other day she

wanted to be creamated so that is what we done and we made a memory board with

all kinds of pictures from when she was little and then now so that helped to

look at all of those and remember when she was better and when we had fun that

sounds like a wonderful thing that you done for your DAD that is a great idea

thank you for that. I dont know how often that i will be able to get on the

computer i will be going home on Sunday so i will be on every night before then

and then i will be down at least once a month i dont want to loose contact with

my sister she is all i have now as family and i sure dont want to loose her.

thank you so much and my prayers and thoughts are with you

your friend Missy

Marilyn wrote:Honey, I am so sorry that your mom passed. I'm sure that if she

could have stayed with you and your sister, she would have. She sounds like a

wonderful woman, I do wish I could have met her. And I truly believe that God

sent you the rain to let you know she is alright. You, your sister and your mom

will continue to be in my prayers. Dana said it so beautifully, God did not give

her pain, He took it away.

I don't know if this will help you or not, but I'll tell you what I did when my

dad died. He had suffered with Parkinson's disease for 8 years. The last two

years were horrible, and the last 6 months were the worst, he just lay in bed in

a fetal postion, not being able to move or talk. Parkinson's kills the nerves

in the body. The worst part was that his mind was fine - he was trapped in his

own body. I think for me, the grief was worse when he was alive. I was so

devastated when he died, but glad for him that he was going to be whole and pain

free again. I still feel him with me and it was 6 years ago that he left.

What I did was to gather up all my pictures and get pictures to copy of my dad

from other people. I made a scrapbook of his life. I just told his story from

my point of view. I wrote down all the things I remembered about him. I didn't

include any of the pictures of him when he was really sick. I cried my guts out

the whole time I was doing it, but there were lots of times I smiled and

laughed, too. I think that's how I went through my grieving process. It took a

while for me to look at the book and not to cry. But that day came, and now the

scrapbook gives me so much comfort. When I look at it, he is still alive and

well to me, and I realize that I will see him this way again someday. Maybe you

could do something like this for your mom. To me, I feel like I created a

legacy for him, so that my children and someday my grandchildren will feel like

they knew him like I did.

I hope you have family and friends around you to help you and your sister at

this time. Hugs are so healing. And remember, we are here for you, too. I

wish I knew what to say to make things better for you, I know how hard this is.

Much love,

Marilyn

Re: Re: Missy and China

Hello Marilyn:

I just wanted to let you know that we need your prayers my Mom passed

away at 11:57 Monday night. Monday morning my sister could not get her to

respond so she called 911 and they rushed her to er. They tried dialsys but she

could not withstand it after 20 minutes. Her kidneys and liver had shut

completely down and she was bleeding out of her mouth and her arm where they

tried to start an iv and take blood. Mom always said that if it rains when

someone passes away that they are happy well it had been hot here all day and

then after she passes on we stepped outside and it started pouring the rain i

knew that she was happy and not suffering any more she is all around me and i

hope it stays that way thank you for talking to me will you please pray for me

and my sister to have some kind of understanding to all of this and you are in

my prayers and thoughts thank you so much i wish everyone could have met my Mom

she was a wonderful person i love her so much

thank you

your friend Missy

[Guest guest]

Dear Marilyn:

Thank you for responding we dont have alot of family my Mom had one brother

and my husbands family will all be here and my sisters boyfriend has a big

family and they have all been here. My MOM was a big picture preson about

everything we done we have so many pictures we went through the other day she

wanted to be creamated so that is what we done and we made a memory board with

all kinds of pictures from when she was little and then now so that helped to

look at all of those and remember when she was better and when we had fun that

sounds like a wonderful thing that you done for your DAD that is a great idea

thank you for that. I dont know how often that i will be able to get on the

computer i will be going home on Sunday so i will be on every night before then

and then i will be down at least once a month i dont want to loose contact with

my sister she is all i have now as family and i sure dont want to loose her.

thank you so much and my prayers and thoughts are with you

your friend Missy

Marilyn wrote:Honey, I am so sorry that your mom passed. I'm sure that if she

could have stayed with you and your sister, she would have. She sounds like a

wonderful woman, I do wish I could have met her. And I truly believe that God

sent you the rain to let you know she is alright. You, your sister and your mom

will continue to be in my prayers. Dana said it so beautifully, God did not give

her pain, He took it away.

I don't know if this will help you or not, but I'll tell you what I did when my

dad died. He had suffered with Parkinson's disease for 8 years. The last two

years were horrible, and the last 6 months were the worst, he just lay in bed in

a fetal postion, not being able to move or talk. Parkinson's kills the nerves

in the body. The worst part was that his mind was fine - he was trapped in his

own body. I think for me, the grief was worse when he was alive. I was so

devastated when he died, but glad for him that he was going to be whole and pain

free again. I still feel him with me and it was 6 years ago that he left.

What I did was to gather up all my pictures and get pictures to copy of my dad

from other people. I made a scrapbook of his life. I just told his story from

my point of view. I wrote down all the things I remembered about him. I didn't

include any of the pictures of him when he was really sick. I cried my guts out

the whole time I was doing it, but there were lots of times I smiled and

laughed, too. I think that's how I went through my grieving process. It took a

while for me to look at the book and not to cry. But that day came, and now the

scrapbook gives me so much comfort. When I look at it, he is still alive and

well to me, and I realize that I will see him this way again someday. Maybe you

could do something like this for your mom. To me, I feel like I created a

legacy for him, so that my children and someday my grandchildren will feel like

they knew him like I did.

I hope you have family and friends around you to help you and your sister at

this time. Hugs are so healing. And remember, we are here for you, too. I

wish I knew what to say to make things better for you, I know how hard this is.

Much love,

Marilyn

Re: Re: Missy and China

Hello Marilyn:

I just wanted to let you know that we need your prayers my Mom passed

away at 11:57 Monday night. Monday morning my sister could not get her to

respond so she called 911 and they rushed her to er. They tried dialsys but she

could not withstand it after 20 minutes. Her kidneys and liver had shut

completely down and she was bleeding out of her mouth and her arm where they

tried to start an iv and take blood. Mom always said that if it rains when

someone passes away that they are happy well it had been hot here all day and

then after she passes on we stepped outside and it started pouring the rain i

knew that she was happy and not suffering any more she is all around me and i

hope it stays that way thank you for talking to me will you please pray for me

and my sister to have some kind of understanding to all of this and you are in

my prayers and thoughts thank you so much i wish everyone could have met my Mom

she was a wonderful person i love her so much

thank you

your friend Missy

[Guest guest]

Missy,

I truly do appreciate your input, but does not have an IEP

because the school says that he does not qualify for one. Because

's diagnosis is still not " official " and he is still going

through evaluations, they won't even talk about it. They believe that

his only problem is the ADHD that he was first diagnosed with and

that I'm nuts (it hasn't been said in so many words,but you know the

attitude)to be having him evaluated for PDD. I'm not the one that

suggested it, his doctor was, but what can you do when they don't

want to listen?

is not in any kind of special education or learning support

except for reading support. Again, he doesn't qualify according to

their rules. The substitute teacher was actually one that had spent

time in 's classroom previously so she wasn't a stranger, but I

do not think she is aware of his needs. His regular classroom teacher

is willing to work with up to a point, but even she drives me

bonkers at times. Her classroom is very structured and that is the

only reason I think that is doing as well as he is. Also, many

of the methods that she uses to teach are very similiar to ones I've

read about for use with autistic children, so that gives an

additional advantage in her classroom.

Unfortunately, until I get something in writing from somebody,

is basically screwed as far as his education goes. He was actually

doing a litttle better when he was taking the Adderall XR, but the

side effects were intolerable. By time he got home, he was a wreck

and self-stimulating himself to our distraction (if you know what I

mean). Not to mention the tantrums, the inability to cope with

change, the picking, the head punching, etc., etc. Everything got

worse as he came off the Adderall XR and the longer he was on it, the

worse he became. I'm still trying to figure out what to do about that.

As for his teacher, I am sending in a note to her explaining what

happened to the best of my knowledge and giving her the details of

's behavior after school. On Friday he is having this same

substitute and I don't want a repeat of Tuesday evening. Oh, and to

make matters worse, his teacher sent home his first spelling

homework. He has to write 3 sentences, using two current spelling

list words in each one and every other word in the sentences must

come from previous spelling lists. All sentences must be capitalized,

punctuated, and spelled correctly. This from a kid who is just

beginning to read at a kindergarten/first grade level. Should be fun.

Anyway, thank-you for the information. I printed out your response

and am filing it for future use IF I can ever get him an IEP.

Vicci

[Guest guest]

Vicci, if it were me, I would keep him home Friday. The stress that he

would be put through does not seem worth what little him might get in school

that day.

Betty

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall, Omega 3's

Evan - 8 yo nonverbal autism on 3 mg Risperdal

- 6 - Bipolar/ADHD/RAD/PTSD on Tegretol, Adderall Omega 3's

mother to , their mom - Bipolar/ADHD on Topamax

wife to Bob too many meds to remember

----- Original Message -----

From: " capajravelle " <capajravelle@...>

On Friday he is having this same

> substitute and I don't want a repeat of Tuesday evening. >

> Vicci

[Guest guest]

Vicci:

I encourage you to try to get a parent advocate to help you get the services

needs *and deserves.* Our school system has a blanket answer for

every child who is suspected by the parents and health care professionals

that there may be autism involved: " we just don't see it. " One of these

days, they're going to catch me in an off moment and I'm going to ask them

just what in the heck they're looking for -- the enlarged amygdala? The

malformed hippocampus? Autism is a NEUROLOGICAL disability, so you're not

going to " see " it!

Okay, I'll calm down now...

Missy

Re: Missy

Missy,

I truly do appreciate your input, but does not have an IEP

because the school says that he does not qualify for one. Because

's diagnosis is still not " official " and he is still going

through evaluations, they won't even talk about it. They believe that

his only problem is the ADHD that he was first diagnosed with and

that I'm nuts (it hasn't been said in so many words,but you know the

attitude)to be having him evaluated for PDD. I'm not the one that

suggested it, his doctor was, but what can you do when they don't

want to listen?

is not in any kind of special education or learning support

except for reading support. Again, he doesn't qualify according to

their rules. The substitute teacher was actually one that had spent

time in 's classroom previously so she wasn't a stranger, but I

do not think she is aware of his needs. His regular classroom teacher

is willing to work with up to a point, but even she drives me

bonkers at times. Her classroom is very structured and that is the

only reason I think that is doing as well as he is. Also, many

of the methods that she uses to teach are very similiar to ones I've

read about for use with autistic children, so that gives an

additional advantage in her classroom.

Unfortunately, until I get something in writing from somebody,

is basically screwed as far as his education goes. He was actually

doing a litttle better when he was taking the Adderall XR, but the

side effects were intolerable. By time he got home, he was a wreck

and self-stimulating himself to our distraction (if you know what I

mean). Not to mention the tantrums, the inability to cope with

change, the picking, the head punching, etc., etc. Everything got

worse as he came off the Adderall XR and the longer he was on it, the

worse he became. I'm still trying to figure out what to do about that.

As for his teacher, I am sending in a note to her explaining what

happened to the best of my knowledge and giving her the details of

's behavior after school. On Friday he is having this same

substitute and I don't want a repeat of Tuesday evening. Oh, and to

make matters worse, his teacher sent home his first spelling

homework. He has to write 3 sentences, using two current spelling

list words in each one and every other word in the sentences must

come from previous spelling lists. All sentences must be capitalized,

punctuated, and spelled correctly. This from a kid who is just

beginning to read at a kindergarten/first grade level. Should be fun.

Anyway, thank-you for the information. I printed out your response

and am filing it for future use IF I can ever get him an IEP.

Vicci

[Guest guest]

You go get 'emm Missy! That is a problem with children with autism. Some

disabilities can be 'seen'. Of course, Evan makes his obvious. He is a

rocker even when he walks. Every time I think we are getting away from

that, at least while walking, he rebounds. Now you got to know someone has

a problem somewhere if he constantly rocks. But then we have never had a

problem with the school and him as far as his dx went. But then he is

nonverbal and lfa-mfa. That is hard to argue with.

Betty

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall, Omega 3's

Evan - 8 yo nonverbal autism on 3 mg Risperdal

- 6 - Bipolar/ADHD/RAD/PTSD on Tegretol, Adderall Omega 3's

mother to , their mom - Bipolar/ADHD on Topamax

wife to Bob too many meds to remember

----- Original Message -----

From: " M. " <wmks1983@...>

One of these

> days, they're going to catch me in an off moment and I'm going to ask them

> just what in the heck they're looking for -- the enlarged amygdala? The

> malformed hippocampus? Autism is a NEUROLOGICAL disability, so you're not

> going to " see " it!

>

> Okay, I'll calm down now...

>

> Missy

[Guest guest]

Missy,

I love to read your posts because they make me laugh, even when what

I want to do is cry. I agree with you wholeheartedly, but I am new to

this and still haven't got it all straight.

Tommorrow, I am calling the head of the special ed. department for

our school district to see what kind of info I can get out of the

guy. Up to this point, I have been only dealing with 's

teacher,the principle,and his school counselor. Truth is, I haven't a

clue how to go about all of this. When we had our IEP meeting last

April, the school didn't even tell me that is what it was. They just

said show up at such and such time to meet with the school

psychologist. I was actually surprised to see 's teacher,

principal, school counselor, and reading teacher there, too. As far

as I knew, the school psychologist was meeting with me to tell me the

results of 's testing for a learning disability. Something I

really didn't think he had, but this was the first step according to

my pediatrician. I didn't find out it was an IEP meeting until much,

much later when I started reading a few books and websites.

I haven't asked for another meeting because doesn't have a

definitive diagnosis and, so far, the school hasn't exactly been

cooperative. That first meeting was a bit overwhelming for me and I'm

not ready to repeat it until I know the laws and can have a little

ammo of my own to counter with. I really didn't think it was going to

take this long once things got rolling, but, as I said, I have alot

to learn.

I received no response from 's teacher regarding my note, but

hopefully she is leaving something for the substitute tommorrow. On

the bright side, has a docotor appointment tommorrow,so I'll

be picking him up early. (And Betty, I did consider keeping him home,

but the more problems he experiences, the more ammo I have against

the school. Terrible, I know.) The doctor appointment is to check him

for a possible blood disorder. He has been getting funny bruises (all

purple and pink dots) around his neck and chest and, since he was

born with a skin disorder, they want to make sure it isn't something

serious. Just what I need, another medical problem.

Vicci

[Guest guest]

Vicci,

Sounds like purpura (sp). I think those rashes are more common in

children with allergies.

Thea

> Missy,

>

> I love to read your posts because they make me laugh, even when

what

> I want to do is cry. I agree with you wholeheartedly, but I am new

to

> this and still haven't got it all straight.

>

> Tommorrow, I am calling the head of the special ed. department for

> our school district to see what kind of info I can get out of the

> guy. Up to this point, I have been only dealing with 's

> teacher,the principle,and his school counselor. Truth is, I

haven't a

> clue how to go about all of this. When we had our IEP meeting last

> April, the school didn't even tell me that is what it was. They

just

> said show up at such and such time to meet with the school

> psychologist. I was actually surprised to see 's teacher,

> principal, school counselor, and reading teacher there, too. As

far

> as I knew, the school psychologist was meeting with me to tell me

the

> results of 's testing for a learning disability. Something I

> really didn't think he had, but this was the first step according

to

> my pediatrician. I didn't find out it was an IEP meeting until

much,

> much later when I started reading a few books and websites.

>

> I haven't asked for another meeting because doesn't have a

> definitive diagnosis and, so far, the school hasn't exactly been

> cooperative. That first meeting was a bit overwhelming for me and

I'm

> not ready to repeat it until I know the laws and can have a little

> ammo of my own to counter with. I really didn't think it was going

to

> take this long once things got rolling, but, as I said, I have

alot

> to learn.

>

> I received no response from 's teacher regarding my note,

but

> hopefully she is leaving something for the substitute tommorrow.

On

> the bright side, has a docotor appointment tommorrow,so

I'll

> be picking him up early. (And Betty, I did consider keeping him

home,

> but the more problems he experiences, the more ammo I have against

> the school. Terrible, I know.) The doctor appointment is to check

him

> for a possible blood disorder. He has been getting funny bruises

(all

> purple and pink dots) around his neck and chest and, since he was

> born with a skin disorder, they want to make sure it isn't

something

> serious. Just what I need, another medical problem.

>

> Vicci

[Guest guest]

> I don't know where you live but in my state (WA) they

> have what is called a 504 (named I believe for the

> IDEA law) for children who don't qualify for an IEP,

> it's a plan similar to an IEP for children who need a

> little extra help or considerations, you might check

> into getting one of these in place until you can get a

> Dx and an IEP

> ALyson

Alyson,

Thank-you for the input, but please see my post, " Victory, sort of " .

You will have a more recent account of the going's on.

Vicci

[Guest guest]

Sorry to butt in, however, thought it warranted a little

clarification about " 504 " .

504 and IDEA are two separate laws.

Check out www.wrightslaw.com for more information on special

education issues and to learn about 504, IDEA, NCLB (No Child

Left Behind) and other info on testing and navigating the

special ed system.

Hope this helps.

GEM

Re: Missy

>

> > I don't know where you live but in my state (WA) they

> > have what is called a 504 (named I believe for the

> > IDEA law) for children who don't qualify for an IEP,

> > it's a plan similar to an IEP for children who need a

> > little extra help or considerations, you might check

> > into getting one of these in place until you can get a

> > Dx and an IEP

> > ALyson

>

>

> Alyson,

>

> Thank-you for the input, but please see my post, " Victory,

sort of " .

> You will have a more recent account of the going's on.

>

> Vicci

>

>

>

[Guest guest]

The next meeting is going to be May 8 at 3:00 at the Denny's at

Blanco and 410. This meeting we will have school nurse there to talk

about school issues. I hope you can be there.

> Hi,

> Sorry I couldn't make the meeting due to baseball games. Please let

me know when the next one will be. I really want to attend. I hope it

went well.

> Please keep me posted.

> Thanks,

> Missy and Tyler(spondy10)

[Guest guest]

Hi Missy-

Did Ian take group lessons or private? Bryce takes

group lessons - right now with 2 to 4 other kids (all

girls - but, hey, the boy is a born ladies man,

afterall ;>) Anyway, aside from the group lessons

costing less - Bryce also enjoys the comradarie of the

whole thing...when Bryce is a little older, we've

thought about canoe-ing / 2 person kyacking (sp?) as

another fun activity/sport...though I hope Ian changes

his mind about horseback riding! I think guitar

lessons would be great - as I like to think (from the

male point of view) - the main reason for learning to

play a guitar is to, of course, woo women - which I'm

sure Ian will do plenty of in his time.

Regarding the baseball thing - as an AB child, I

played T-ball, and 4 years of baseball - never really

getting too good at it (and truthfully, never really

enjoying playing all that much) - I've explained to

Bryce if he isn't having fun playing ball to just let

me know - like I did to my Dad - and we won't play

" professionally " anymore. I still love watching

baseball (especially in the shade with a beer & hot

dog in hand) - but just because I stopped playing, I

still stayed an avid fan (of the Cleveland Indians -

back in the 70's & 80's when they were absolutely

horrible - if you can believe that) - and stayed

active with baseball in my teens as an umpire and a

paid scorer for men's softball. The point is, you

certainly don't have to be the one playing the sport

to really enjoy it - though its tough to try to

explain that to a young boy.

Mitch

--- missy <ianpaul2@...> wrote:

> Hi Mitch,

> Ian did 2 seasons of t-ball also. He loves

> baseball, but can't make it around the bases

> anymore, and is too heavy for me to carry that

> distance. He is out of t-ball age here, and I don't

> trust him in real baseball either. My oldest son

> did that last year, and is not in it this year. For

> one they are too much for winning the game, and not

> for the fun of it. Also Mitchel got hit with the

> ball too many times from the pitcher. I don't want

> to put Ian in that dangeer.

>

> Now for horseback riding, Ian breaks my heart with

> this this year. He did great last year, just reg

> horseback riding, not theroputic. We held on to him

> and he did the rest on his own. He has about 4

> first place ribbons from the horse shows he did last

> year. It got too cold so he stopped for the winter.

> Now why he breaks my heart is because he doesn't

> want to do it this year again. He did so good, just

> like a real cowboy that he wants to be when he grows

> up. He said he already knows how, and doesn't need

> to take anymore lessons. So I can't force him, but

> the opportunity is always there if he wants to go

> back. I hope he does because that is the one thing

> that put a huge smile on his face, and he truly

> loved to do.

>

> I think it is because he can't do t-ball/baseball

> this year and he is just upset about that, so

> doesn't want to do anything. I feel bad though

> because Mitch is in Karate, and I would like to have

> Ian doing something also. We are trying to find a

> place around here that does guitar lessons because

> Ian has talked about wanting to learn how to do

> that.

>

> Ian is also very upset with things this year too

> because so many changes have happend recently. He

> is now using the cough assist, bipap, neb when

> needed, and has a pulse ox on him all night. He

> went just about 5 years being diagnosed with just a

> manual chair and a walker. Now he gets all these

> new machines and can't even get the power chair

> through ins yet, which he is upset about.

>

> Sorry this is so long. I just hope that after he

> gets use to it all and excepts it all that he will

> be interested in doing something again. Hopefuly

> horseback riding. He is a natural at it!!!

> Thank you for your reply. I am glad your son is

> doing good with all that. It is nice to see them

> out there doing the things like tball and all. I

> just think Ian is at that hard time with the SMA

> that he doesn't want to except the facts that he is

> weakening so fast and all of a sudden. I don't want

> to except it, so I can't even imagein how he feels.

> Thanks to that stupid school this is all happening

> so fast.

> Thanks again I will stop now before I bor you if I

> didn't already.

> Missy

>

> <mongomustgolf@...> wrote:

> Hi Missy: I read your email and immediately thought

> of my son Bryce. Bryce is in the midsts of his

> second

> season of T-ball. Yes, he isn't the quickest one

> around the bases, but he seems to have fun - though

> he

> seems to know he can't do some of the things the

> other

> kids can - but he tries like hell! Aside from the

> baseball, he also rides a horse once a week at a

> therapeutic riding center and he loves it. I highly

> recommend horseback riding for anyone willing to

> give

> it a try. For Bryce in particular, it helps him

> tone

> and learn to control his hip & thigh muscles and to

> work on good posture (all things of particular

> significance to him and how SMA has affected his

> body). Those in chairs can ride " Chariot Style " and

> many kids do. Anyway, its a sport like any other -

> one that most supposed " normal " kids don't ever get

> to

> do - much less become proficient at it. Also, it is

> something where for the most part, you are equal

> with

> all other riders - SMA or not. Bryce's favorite

> part

> of his hour long lessons is the part where they get

> to

> trot & go fast! I see us involved with this for a

> long, long time - as it provides so many positives

> they can't all really be fully described. Anyway,

> if

> you have any q's about " hippotherapy " (which is the

> term for therapeutic horseback riding

> lessons)...just

> let me know...Mitch

>

> --- missy <ianpaul2@...> wrote:

>

> > Hi sounds like you make a lot out of your

> > life, and very active with things. That is great.

>

> >

> > I am Mom to Ian age 7.5 type 2/3. He can walk

> some,

> > not any real distance or anything and falls a lot,

> > but he is still going. He has some resp problems

> > that just have come up this year. But over all he

> > is doing good. I sure hope he looks at life the

> way

> > you do and finds ways to be apart of sports and

> all

> > like you have. He loves baseball, and soccer,

> > basketball also, but really no way of him being on

> a

> > reall team anymore. We still play as a family and

> > all so the kids can have fun, but to Ian its not

> the

> > real thing. I sure hope he looks at life the way

> > you do when he gets older. Right now with him it

> is

> > just more of a mental struggle on him dealing with

> > the fact he can't do things like the other kids,

> and

> > that is the hardest part of the whole SMA for him.

> > Anyways Thank you for sharing about yourself. I

> > like to here things like this, to here that there

> is

> > those chances out there for my son when he is

> older.

> > Thanks again.

> > Missy

> >

> > Lemieux <iambacon@...> wrote:

> > Hey

> >

> > I'm I'm 23 from Windsor, Ontario (5 mins

> from

> > Detroit, Mich.),

> > single male, I have SMA II and have never walked.

> > I've lived in

> > Western & Eastern Canada and England. I love to

> > travel and meet new

> > people and I am a Baseball and Basketball addict

> > (Toronto).

> >

> > I'm at college for advertising and I work for the

> > college basketball

> > team as a statistician and announcer. I also

> coach

> > a girls (13 & 14)

> > softball team.

> >

> > I play in and am the president of a wheelchair

> floor

> > hockey league in

> > Michigan that allowed males and females aged 10+

> > (one player is 60) to

> > play competitive floor hockey.

> >

> > I'm a movie and music addict and also like art,

> > drawing etc.

> >

> > I've added my photos (wolfmanjoe25 aka Chris)

> >

> > Feel free to add me to any IM program:

> >

> > AIM: WCHLLemieux

> > Y!: wolfmanjoe25

> > MSN: iambacon at gmail dot com

> >

> >

> >

> >

> > A FEW RULES

> >

> > * The list members come from many backgrounds,

> ages

> > and beliefs So all

> > members most be tolerant and respectful to all

> > members.

> >

> > * Some adult language and topics (like sexual

> > health, swearing..) may

> > occur occasionally in emails. Over use of

> > inappropriate language will

> > not be allowed. If your under 16 ask your

> > parents/gaurdian before you

> > join the list.

> >

> > * No SPAMMING or sending numerous emails unrelated

> > to the topics of

> > spinal muscular atrophy, health, and the daily

> > issues of the disabled.

> >

> > Post message:

>

>

=== message truncated ===

__________________________________

Discover

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[Guest guest]

Thank you, .

It's funny, we've been dealing with doctors pretty constantly since Sterling

was born, and immunologists are the only ones who I still find intimidating.

The one at Hopkins several years back wanted to act very aggressively, when

Sterling wasn't getting sick; this one is completely unconcerned that

Sterling has been getting sick. It's been a full week since he's complained

about any pain except tummy pain, and I do remember from dealing with his

severe allergies that it's easy to second guess yourself when you have a

quieter stretch.

His pediatrician (new to us) suggested that maybe they were growing pains,

but I have two older children. I'm not unfamiliar with growing pains and

these have been going on for over five months. The first time, his arms hurt

so badly he put his head down and sobbed. She also suggested that maybe he's

been getting sick because this is the same age that most kids start

pre-school or kindergarten, so maybe he's been around a lot of new people.

We homeschool. There were no changes, we were hanging out with the same

families we've hung out with for years. The pediatrician said she was sure

there were some changes because there are always are at this age. So I guess

she knows more about what's been going on in my family than I do.

I just started journaling the episodes and I'll keep it up; I'm just a

little frustrated right now.

Missy

Re: Missy

> Missy,

>

> I cannot speak to causes regarding Sterling.....but, you know your son

> better than any of these doctors...if you know his pain is real, then be

> persistent in finding the answers. We went through a very trying 18 months

> with my daughter - drs would tell her she was imagining her pain, or they

> would treat me in a condescending manner. (Similarly, my daughter is one

> who does not like to accept her limitations, and will not speak up until

> the pain is intolerable.) She is receiving proper treatment now; but she

> has a mistrust of drs for the delay in diagnosis and treatment. Do not

> allow these drs to intimidate you...hard at times, I know...but, you are

> your son's best advocate. If you aren't already, keep a journal of his

> pain - days, times, where it hurts, how much it hurts

> (http://www.ama-cmeonline.com/pain_mgmt/module06/03pain/03_01.htm#) (it

> has a pain scale in faces for kids...I know others are also available on

> the web)

>

> This type of journal became a valuable tool for us. I hope you get some

> answers for Sterling soon.

>

> nancy

> mom to cvid-er

>

>

[Guest guest]

Thank you, .

It's funny, we've been dealing with doctors pretty constantly since Sterling

was born, and immunologists are the only ones who I still find intimidating.

The one at Hopkins several years back wanted to act very aggressively, when

Sterling wasn't getting sick; this one is completely unconcerned that

Sterling has been getting sick. It's been a full week since he's complained

about any pain except tummy pain, and I do remember from dealing with his

severe allergies that it's easy to second guess yourself when you have a

quieter stretch.

His pediatrician (new to us) suggested that maybe they were growing pains,

but I have two older children. I'm not unfamiliar with growing pains and

these have been going on for over five months. The first time, his arms hurt

so badly he put his head down and sobbed. She also suggested that maybe he's

been getting sick because this is the same age that most kids start

pre-school or kindergarten, so maybe he's been around a lot of new people.

We homeschool. There were no changes, we were hanging out with the same

families we've hung out with for years. The pediatrician said she was sure

there were some changes because there are always are at this age. So I guess

she knows more about what's been going on in my family than I do.

I just started journaling the episodes and I'll keep it up; I'm just a

little frustrated right now.

Missy

Re: Missy

> Missy,

>

> I cannot speak to causes regarding Sterling.....but, you know your son

> better than any of these doctors...if you know his pain is real, then be

> persistent in finding the answers. We went through a very trying 18 months

> with my daughter - drs would tell her she was imagining her pain, or they

> would treat me in a condescending manner. (Similarly, my daughter is one

> who does not like to accept her limitations, and will not speak up until

> the pain is intolerable.) She is receiving proper treatment now; but she

> has a mistrust of drs for the delay in diagnosis and treatment. Do not

> allow these drs to intimidate you...hard at times, I know...but, you are

> your son's best advocate. If you aren't already, keep a journal of his

> pain - days, times, where it hurts, how much it hurts

> (http://www.ama-cmeonline.com/pain_mgmt/module06/03pain/03_01.htm#) (it

> has a pain scale in faces for kids...I know others are also available on

> the web)

>

> This type of journal became a valuable tool for us. I hope you get some

> answers for Sterling soon.

>

> nancy

> mom to cvid-er

>

>

[Guest guest]

Missy,

I would feel frustrated too. Since the dr is not listening, perhaps a fresh

perspective would be helpful. With your insurance, can you try another dr for a

second opinion? Either that, or continue being persistant with Sterling's

current dr.

Let me know how things go.

Take care,

nancy

mom to cvid-er

" M. Ridge- " <vcarter98@...> wrote:

Thank you, .

It's funny, we've been dealing with doctors pretty constantly since Sterling

was born, and immunologists are the only ones who I still find intimidating.

The one at Hopkins several years back wanted to act very aggressively, when

Sterling wasn't getting sick; this one is completely unconcerned that

Sterling has been getting sick. It's been a full week since he's complained

about any pain except tummy pain, and I do remember from dealing with his

severe allergies that it's easy to second guess yourself when you have a

quieter stretch.

His pediatrician (new to us) suggested that maybe they were growing pains,

but I have two older children. I'm not unfamiliar with growing pains and

these have been going on for over five months. The first time, his arms hurt

so badly he put his head down and sobbed. She also suggested that maybe he's

been getting sick because this is the same age that most kids start

pre-school or kindergarten, so maybe he's been around a lot of new people.

We homeschool. There were no changes, we were hanging out with the same

families we've hung out with for years. The pediatrician said she was sure

there were some changes because there are always are at this age. So I guess

she knows more about what's been going on in my family than I do.

I just started journaling the episodes and I'll keep it up; I'm just a

little frustrated right now.

Missy

Re: Missy

> Missy,

>

> I cannot speak to causes regarding Sterling.....but, you know your son

> better than any of these doctors...if you know his pain is real, then be

> persistent in finding the answers. We went through a very trying 18 months

> with my daughter - drs would tell her she was imagining her pain, or they

> would treat me in a condescending manner. (Similarly, my daughter is one

> who does not like to accept her limitations, and will not speak up until

> the pain is intolerable.) She is receiving proper treatment now; but she

> has a mistrust of drs for the delay in diagnosis and treatment. Do not

> allow these drs to intimidate you...hard at times, I know...but, you are

> your son's best advocate. If you aren't already, keep a journal of his

> pain - days, times, where it hurts, how much it hurts

> (http://www.ama-cmeonline.com/pain_mgmt/module06/03pain/03_01.htm#) (it

> has a pain scale in faces for kids...I know others are also available on

> the web)

>

> This type of journal became a valuable tool for us. I hope you get some

> answers for Sterling soon.

>

> nancy

> mom to cvid-er

>

>

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

Be a better Globetrotter. Get better travel answers from someone who knows.

Answers - Check it out.

[Guest guest]

We just switched to this new ped. because the last time we were at the ER

and needed a follow-up afterwards, our old ped. couldn't fit us in for five

days because the practice has grown so much. That made me a little

uncomfortable. We asked around and then started at this new pediatrician

with a well-child check-up so we could get a feel for the practice. We only

brought a couple pages from his file because his file is HUGE and the former

ped's office charges per page and couldn't get it to us very quickly anyway.

I figured that, if the practice felt right, we'd go ahead and pay to have

all the records transferred. So, she is, as she said, only going from our

word about his history. That comment was annoying, in that I do think I know

my own child's history fairly well, but then I understand that she needs to

**see** it. So maybe after she reads through his entire file, she'll have a

better idea of why we're so concerned.

If I still like we're being dismissed, then I'll have no problem finding

another doctor. Our allergist and our gastro are great. If we need to get a

different immunologist, I'm not sure where we'll go. I think there are other

immunologists at Children's, though.

It's that whole tone from both the immunologist and pediatrician, that

overly-patient, overly-polite tone, puncuated with sighs...

Thanks, again!

Re: Missy

>

>> Missy,

>>

>> I cannot speak to causes regarding Sterling.....but, you know your son

>> better than any of these doctors...if you know his pain is real, then be

>> persistent in finding the answers. We went through a very trying 18

>> months

>> with my daughter - drs would tell her she was imagining her pain, or they

>> would treat me in a condescending manner. (Similarly, my daughter is one

>> who does not like to accept her limitations, and will not speak up until

>> the pain is intolerable.) She is receiving proper treatment now; but she

>> has a mistrust of drs for the delay in diagnosis and treatment. Do not

>> allow these drs to intimidate you...hard at times, I know...but, you are

>> your son's best advocate. If you aren't already, keep a journal of his

>> pain - days, times, where it hurts, how much it hurts

>> (http://www.ama-cmeonline.com/pain_mgmt/module06/03pain/03_01.htm#) (it

>> has a pain scale in faces for kids...I know others are also available on

>> the web)

>>

>> This type of journal became a valuable tool for us. I hope you get some

>> answers for Sterling soon.

>>

>> nancy

>> mom to cvid-er

>>

>>

>

>

>

>

>

>

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

> Be a better Globetrotter. Get better travel answers from someone who

> knows.

> Answers - Check it out.

>

>

[Guest guest]

Missy it is my understanding that you do not need to pay for the copies unless

you are taking them personally. Doctor to Dr. I believe is free.

BARBIE

Re: Missy

>

>> Missy,

>>

>> I cannot speak to causes regarding Sterling.... .but, you know your son

>> better than any of these doctors...if you know his pain is real, then be

>> persistent in finding the answers. We went through a very trying 18

>> months

>> with my daughter - drs would tell her she was imagining her pain, or they

>> would treat me in a condescending manner. (Similarly, my daughter is one

>> who does not like to accept her limitations, and will not speak up until

>> the pain is intolerable. ) She is receiving proper treatment now; but she

>> has a mistrust of drs for the delay in diagnosis and treatment. Do not

>> allow these drs to intimidate you...hard at times, I know...but, you are

>> your son's best advocate. If you aren't already, keep a journal of his

>> pain - days, times, where it hurts, how much it hurts

>> (http://www.ama- cmeonline. com/pain_ mgmt/module06/ 03pain/03_ 01.htm#) (it

>> has a pain scale in faces for kids...I know others are also available on

>> the web)

>>

>> This type of journal became a valuable tool for us. I hope you get some

>> answers for Sterling soon.

>>

>> nancy

>> mom to cvid-er

>>

>>

>

>

>

>

>

>

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

> Be a better Globetrotter. Get better travel answers from someone who

> knows.

> Answers - Check it out.

>

>

[Guest guest]

Missy,

I began reading a book I found at our local library that i wish I had known

about 18 months ago!! It is called " It's Not Just Growing Pains. " I

immediately thought of the dr's comment to you about Sterling when I read what

this rheumatologist had to say about growing pains: - they occur in the night

- the pain is almost always in a large joint such as the knee.... " if any pain is

still present when the child wakes up in the morning or any pain occurs while

the child is awake, this must not be dismissed as growing pains....not always

due to a serious illness, but they are not growing pains....require a full

medical evaluation.

The book is written by J. Lehman, M.D., Chief of Pediatric Rheumatology

and Professor of Clinical Pediatrics at Cornell University. It is written to

parents and professionals, but not too technical for the parents - it deals with

muscle, bone, and joint pain, rheumatic diseases, and the latest treatments.

Either way, I hope you get some answers very soon.

nancy

" M. Ridge- " <vcarter98@...> wrote:

We just switched to this new ped. because the last time we were at the ER

and needed a follow-up afterwards, our old ped. couldn't fit us in for five

days because the practice has grown so much. That made me a little

uncomfortable. We asked around and then started at this new pediatrician

with a well-child check-up so we could get a feel for the practice. We only

brought a couple pages from his file because his file is HUGE and the former

ped's office charges per page and couldn't get it to us very quickly anyway.

I figured that, if the practice felt right, we'd go ahead and pay to have

all the records transferred. So, she is, as she said, only going from our

word about his history. That comment was annoying, in that I do think I know

my own child's history fairly well, but then I understand that she needs to

**see** it. So maybe after she reads through his entire file, she'll have a

better idea of why we're so concerned.

If I still like we're being dismissed, then I'll have no problem finding

another doctor. Our allergist and our gastro are great. If we need to get a

different immunologist, I'm not sure where we'll go. I think there are other

immunologists at Children's, though.

It's that whole tone from both the immunologist and pediatrician, that

overly-patient, overly-polite tone, puncuated with sighs...

Thanks, again!

Re: Missy

>

>> Missy,

>>

>> I cannot speak to causes regarding Sterling.....but, you know your son

>> better than any of these doctors...if you know his pain is real, then be

>> persistent in finding the answers. We went through a very trying 18

>> months

>> with my daughter - drs would tell her she was imagining her pain, or they

>> would treat me in a condescending manner. (Similarly, my daughter is one

>> who does not like to accept her limitations, and will not speak up until

>> the pain is intolerable.) She is receiving proper treatment now; but she

>> has a mistrust of drs for the delay in diagnosis and treatment. Do not

>> allow these drs to intimidate you...hard at times, I know...but, you are

>> your son's best advocate. If you aren't already, keep a journal of his

>> pain - days, times, where it hurts, how much it hurts

>> (http://www.ama-cmeonline.com/pain_mgmt/module06/03pain/03_01.htm#) (it

>> has a pain scale in faces for kids...I know others are also available on

>> the web)

>>

>> This type of journal became a valuable tool for us. I hope you get some

>> answers for Sterling soon.

>>

>> nancy

>> mom to cvid-er

>>

>>

>

>

>

>

>

>

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

> Be a better Globetrotter. Get better travel answers from someone who

> knows.

> Answers - Check it out.

>

>

[Guest guest]

,

Thank you for this! It pretty much confirms what I knew from my older kids

about growing pains, but it's a lot better to present that info from another

doctor than from this " overreactive " mom.

Sterling is sick again. He woke up with a sore throat and a headache, and

his hands hurt. The headache and pain disappeared after a few hours, and

then came back late in the afternoon, along with a fever. So, yeah. Not my

imagination.

Missy

Re: Missy

> >

> >> Missy,

> >>

> >> I cannot speak to causes regarding Sterling.....but, you know your son

> >> better than any of these doctors...if you know his pain is real, then

> >> be

> >> persistent in finding the answers. We went through a very trying 18

> >> months

> >> with my daughter - drs would tell her she was imagining her pain, or

> >> they

> >> would treat me in a condescending manner. (Similarly, my daughter is

> >> one

> >> who does not like to accept her limitations, and will not speak up

> >> until

> >> the pain is intolerable.) She is receiving proper treatment now; but

> >> she

> >> has a mistrust of drs for the delay in diagnosis and treatment. Do not

> >> allow these drs to intimidate you...hard at times, I know...but, you

> >> are

> >> your son's best advocate. If you aren't already, keep a journal of his

> >> pain - days, times, where it hurts, how much it hurts

> >> (http://www.ama-cmeonline.com/pain_mgmt/module06/03pain/03_01.htm#) (it

> >> has a pain scale in faces for kids...I know others are also available

> >> on

> >> the web)

> >>

> >> This type of journal became a valuable tool for us. I hope you get some

> >> answers for Sterling soon.

> >>

> >> nancy

> >> mom to cvid-er

> >>

> >>

> >

> >

> >

> >

> >

> >

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

> > Be a better Globetrotter. Get better travel answers from someone who

> > knows.

> > Answers - Check it out.

> >

> >

[Guest guest]

Thanks, Barbie. That definitely helps.

Missy

Re: Missy

> Missy it is my understanding that you do not need to pay for the copies

> unless you are taking them personally. Doctor to Dr. I believe is free.

>

> BARBIE

[Guest guest]

I'm so glad you have family support, medical support! That makes a huge

difference.

First, apparently I misled you with a statement about protein. Most

people with AIH need protein. Limit protein only if your doctor directs

you to. This is very important.

Ask right away about azathioprine. It's a major weapon in fighting AIH

while minimizing the problems large doses of prednisone cause.

Because you take prednisone, you really, really need to be taking

calcium with vitamin D. This is essential. Dreadful things can happen,

otherwise. Talk to your doctor, of

course; with AIH, you don't want to take anything at all, prescription

or otherwise, without informing your doctor. Dietary calcium and

weight-bearing exercise also help. Don't forget the bne density scan. Nine years

later, my endocrinologist went back and reviewed my first DEXA scan and those

that followed to determine the best treatment for me.

Milk thistle? This is a controversial subject. Some doctors say it

can't hurt, so take it if you wish. Others (including mine) say to stay

away from it. Remember, inform your doctor before taking anything at

all, including medications that are absorbed through the skin.

I found separate articles on tacrolimus orally for AIH and topically..

One autoimmune skin disorder is dermatitis herpetiformis. I suppose that's been

ruled out.

American Autoimmune Related Diseases Association (AARDA) is a good source of

information about AIH and other ADs.

Keep in touch -- best wishes.

Harper

[ ] New Member

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> Thanks for note Kay!

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> I'm a new member from Utah. My history...Just diagnosed with AIH. Docs thought

it was Hep A. (from a recent trip to Guatemala)...but my liver numbers never got

better...and biopsy proved AIH. (Hep A could have triggered. And it started

right when my father died, so maybe stress a factor..who knows) I have had

weird skin reactions years ago from yellow fever shots...that could have screwed

up my immune system. My immune profile has since been strange, but until now,

nothing had manifested. The only thing that worked for skin issues was

'protopic'... a drug that stops your body from attacking itself. I am anxious

now to try those " tacrolimus " oral drugs for AIH.(50 yrs old)

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> For now..On 40 prednisone.. and cholestyramine (orange drink)... and trying to

shed the yellow. Nauseau pills as needed and promethazine and ondansetron.

Horrid itching stage is over. Can only eat very bland... it's like the nauseau

of preganancy.

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> I'm reading thru old posts trying to learn.... and the " brain fog " is

currently the hardest, no concentration, not my usual mind at all.... wondering

when this will get better...and what exactly it's from??? Only energy in the

early part of days... and insomnia.

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> So ...day by day...weekly blood draws for now... can only get better!

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> Nice to gather information from this sight, and thank you for it already...

missy

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[Guest guest]

Hi! I just want to intro myself. I'm Trudy, currently on TX ( treatment ) Friday

will be 9 weeks. I was dx ( diagnosed ) in June 2007, kinda figure I've had the

Hep C since 1974. Didn't have symptoms untl earler that year( 2007).

Dont be afaid of the biopsy. Doesn't hurt , just have someone with you to

drive and take it easy the next day or two. The biopsy is very important. It

will tell you and your Dr the condition your liver is in. I said YOU & your DR

for a reason. You need to be informed about everything. Start by asking for

copies of your medical records. The labs will look like mumbo-jumbo to you.

That's where this group can help. I was on this group for six months before

starting tx ; and, golly, am I glad, I learned so much! I know I would not be

able to do this tx without them. The amount of knowledge , comfort, and always

straight answers is unbelievable. Don't hesitate to ask any question. We've all

been new to this in the past. And some mighty personal questions( some from me )

get asked & answered LoL.

So , please monitor this site, chime in when you like. Please ask for your med

records. When in with your Dr it can be information overload. Do you have

someone to go to the dr with you? They can take notes and you can digest it all

later.

Glad you found us. I'm sure everyone else has something to say so I will

hush now LoL .

Love and hugs. Trudy in OK

http://facebook.com/people/andTrudy-Kinsey/1340460877 "

" A well- behaved woman never made history " ...Mae West

http://oktravels.wordpress.com

http://allrecipes.com/cook/TrudyK/profile.aspx

[Guest guest]

<<they are waiting a few months before taking my liver test. >>

Missy, I'm puzzled. What sort of liver test are they (your doctors) waiting to

do?

Harper

[ ] New to group

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> Hi,

> My name is . I am 41 and I have AIH/PBC. I wanted to meet people like me

> because I don't have alot of support.

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