Re: New to the Group

[Guest guest]

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

>>>what ever resulted

>>> from the test was not going to change my mind to love and give birth to

this

>>> baby.

Good for you I felt the same way!

>>>I am certainly happy that I found this

> >>site and have received all the e-mails with your information sharing.

I'm glad you found us too. Welcome to the family.

Hope mom to , & 8 months w/mds

[Guest guest]

Dear

Welcome! What a nice long post you have here, you and I are going to get

along just fine! I am Barb Martz from rural Western Pennsylvania, so we are

in neighboring states! My husband Bob and I have two sons, Jonas who is 22

months old with MDS, and who is 7 years old. We have been married for 16

years, and I am now 37 years old. I was just barely in the " higher risk "

category when I became pregnant with Jonas and I too refused the amniocentesis

as you did, for the same reasons. (Jonas' story of entry into this world is

pretty remarkable I think, and I encourage you to read all about it at

www.mosaicdownsyndrome.com in the personal stories section.) I will be reading

with great interest how you handle this hard decision about the busing and the

preschool for your son. Can anyone tell me if these buses have car seats for the

young ones on them? Jonas will be 2 on November 1st, so we still have a bit

more than a year with Early Intervention, but it is not long enough. It is

going to be hard for me to let Jonas go to preschool. I quit working after many

years when was 1 1/2 years old so that I could stay at home with him. I

never had him in a preschool because I was here with him and I figured he could

survive without it so we did not spend the money. He is a very smart boy indeed,

so academically, he did not need a preschool. I see that he could have used the

social interaction, but I guess he is catching up well on that. He is in 32d

grade this year. As long as the Good Lord will help us make the ends meet on

one income, we will sacrifice any luxury to keep me here with the boys. My

husband really wants me to be with them as our mothers each were for us. I know

that it is not always possible, and I feel blessed to be able to make it work.

I grew up in the " Brady Bunch " family. We had 3 girls and 3 boys in our

traditional Catholic family. My father and mother never planned to have 6

children, but having all these wonderful siblings now that I am an adult is the

best! I can't imagine being an only child now even though I always thought they

had it made when I was growing up and wearing hand me downs and fighting with

siblings over something all the time. Now I would not trade a single one of

them for all the gold in California! We all live within a 10 minute drive of

my Mom & Dad too! They are retired now and travel as much as they can. We were

ALL there tonight because Mom & Dad are leaving tomorrow morning for Myrtle

Beach. We had no family gathering planned, so it is funny, but predictable. My

husband and I showed up and 2 of my other siblings and families were already

there. As we all visited, one by one the rest of my sisters and brothers and

their spouses and children came too. We all needed to say our goodbyes, because

we won't be seeing Mom & Dad for several weeks. That is long for us. They went

to Alaska for 2 months several years ago and that was about enough to do us in!

It sounds like is doing really well. I am going to look for the

toddler Reader Rabbit. We are familiar with the general Reader Rabbit programs,

but I did not know there was one for toddlers. I have asthma myself, and my

doctor says that children with asthma usually grow out of it by adulthood. I

did not get it until I was an adult, so I am likely to have it for life. I will

be praying that everything works out well for and the school issue. I

know what you mean about getting a report and seeing that kind of thing in

writing. You feel like they must be speaking of someone else's child. Jonas was

2 months premature and has only decided very recently to walk all the time. He

could do it months ago, but still crawled most of the time because it was

faster. We see him developing new words, and abilities almost daily, but our

biggest struggle is still the eating issues. He won't eat textures, can't use

any cup I have found so far. A regular cup he will try, but 99 % of the liquid

ends up on him and me and the floor. This is not getting enough liquid in the

little guy (just 20 lbs) so he still takes a bottle. We just keep trying things

and one day something will work. Best wishes with all the decisions you are

having to make just now with the 3rd birthday coming up so soon. Hope it's a

happy day! I am sure it will be. Blessings to your whole family, and welcome

again to the group.

Barb

Martz

Mom to

Jonas 22 mo (MDS) & 7

New to the Group

Hello! My name is Maxwell. My husband, Mark, and I are the proud

parents of Maxwell (MDS) who was born on September 18, 1999. We

live in Lorain, Ohio. I have three other children from a previous

marriage- (soon to be 18), Garrett 16, and Jillian 15. Mark has two

daughters from a previous marriage- 13 3/4 and Paige 10 1/2.

Yours, mine, and ours-we are like the Brady Bunch. I became pregnant with

just before my 41st Birthday. Because of my age, my doctor was

concerned and had sent me for a Level 2 sonogram. Everything appeared to be

normal. That is when I found out the gender of the baby. I did not choose

to go for an Amnio, because I am scared of needles and what ever resulted

from the test was not going to change my mind to love and give birth to this

baby. I did give birth to our 7 lb. baby boy on September 18, 1999. He was

a very alert strong baby. At his 4 month check-up in January, our

pediatrician Dr. Sandoval noticed that seemed to be double jointed

and he had low muscle tone. He kept staring at 's hand telling me

something about a crease. He referred me to a neurologist at the Cleveland

Clinic. In March, went through an MRI and everything looked normal.

He also sent us for some blood work, but they did not perform one of the

tests that our pediatrician thought that they should have. He called the

neurologist and we had to go back in for the blood work in late April, early

May. The results did show that has Mosaic Down's Syndrome. The

neurologist did suggest that I get in touch with early intervention, which I

got him started in that program right away. went to numerous

doctor's and had series of tests. He went to a geneticist, pulmonologist,

pediatric ENT, heart specialist, endocrinologist, etc. The only problem

that came up is Asthma, so we visit the pulmonologist every 4 months or so.

is a very happy, loving child. He is very affectionate. When he

first started to crawl he looked like a frog. He did work with a physical

therapist to make his low muscle tone stronger. He also worked with an

occupational therapist to help him feed himself-using a fork, spoon, etc.

He progressed well reaching all their goals, so they dismissed him. I think

is doing great and may be slightly behind some of the other kids his

age. But early intervention stops at age 3 and they start preparing him for

school. My Early Intervention Consultant tried to tell me that they always

tell me the positive and then we set goals on want we need to work on, but

she said when you go for a SERRC assessment, they will tell you all the

things that cannot do. She tried to warn me that it is not a real

positive report. did go for his assessment and I thought he did

very well for all the toy distraction in the room and for three people

demanding things of him. They told me that his communication skills level

is at the age of 24 months and that his skill level was at about 28 months.

That had me a little down, until I received the written report. I cried as

I read it. I guess I never see that he does have a handicap and I just see

all the great things that he is doing. He is going to be assessed by the

Child Developmental Center tomorrow. I did stop there last week to see what

the facility was like and I am going to meet with them next week to see what

their assessment is of him. does attend a day care center while my

husband and I are at work. (During the summer he stayed home with his

brother and sisters.) The day care does have a preschool program, which I

thought would be good enough. Child Development talked to me about sending

him to their facility three days a week. They want him to take a public

school bus from the day care to the center for a few hours three times a

week. is just going to be three and he will not start school for

three years. I just thought it would be a bit much for him. I also don't

want him to ride a bus at such a young age. They did tell me about a one da

y program that they had available on Fridays where he would see a speech

therapist who works off of computer programs to encourage their speech. She

showed me a Toddle Reader Rabbit program which I thought was great. I

bought it for home and tried it last night for the first time. He

now has a new word " elbow " which he was quite proud of. I do realize that

is slightly behind in his speech, but I didn't think that he was a

whole year behind. We will see what the developmental center has to say.

When I first found out that has Mosaic Down's Syndrome, I did search

the internet and found very little information on it. I don't know why I

decided to check the other day, but I am certainly happy that I found this

site and have received all the e-mails with your information sharing. It

certainly makes you feel better to know that there are other children out

there like and other parents going through the same problems and

successes of their precious child. I always said that maybe

received all the good things about MDS-the happiness and affection that he

shows. Thank you for this wonderful site and all the great information that

you are sharing.

Take care,

mother to MDS (soon to be 3), 17, Garrett 16, and

Jillian 15

[Guest guest]

-

Could you tell me more about this Reader Rabbit Program for Speech??

is playing the Reader Rabbit PreSchool game and loves it - I would love to

be able to help her with her speech...

Darlene (Mom to (3) and (5))

New to the Group

Hello! My name is Maxwell. My husband, Mark, and I are the proud

parents of Maxwell (MDS) who was born on September 18, 1999. We

live in Lorain, Ohio. I have three other children from a previous

marriage- (soon to be 18), Garrett 16, and Jillian 15. Mark has two

daughters from a previous marriage- 13 3/4 and Paige 10 1/2.

Yours, mine, and ours-we are like the Brady Bunch. I became pregnant with

just before my 41st Birthday. Because of my age, my doctor was

concerned and had sent me for a Level 2 sonogram. Everything appeared to be

normal. That is when I found out the gender of the baby. I did not choose

to go for an Amnio, because I am scared of needles and what ever resulted

from the test was not going to change my mind to love and give birth to this

baby. I did give birth to our 7 lb. baby boy on September 18, 1999. He was

a very alert strong baby. At his 4 month check-up in January, our

pediatrician Dr. Sandoval noticed that seemed to be double jointed

and he had low muscle tone. He kept staring at 's hand telling me

something about a crease. He referred me to a neurologist at the Cleveland

Clinic. In March, went through an MRI and everything looked normal.

He also sent us for some blood work, but they did not perform one of the

tests that our pediatrician thought that they should have. He called the

neurologist and we had to go back in for the blood work in late April, early

May. The results did show that has Mosaic Down's Syndrome. The

neurologist did suggest that I get in touch with early intervention, which I

got him started in that program right away. went to numerous

doctor's and had series of tests. He went to a geneticist, pulmonologist,

pediatric ENT, heart specialist, endocrinologist, etc. The only problem

that came up is Asthma, so we visit the pulmonologist every 4 months or so.

is a very happy, loving child. He is very affectionate. When he

first started to crawl he looked like a frog. He did work with a physical

therapist to make his low muscle tone stronger. He also worked with an

occupational therapist to help him feed himself-using a fork, spoon, etc.

He progressed well reaching all their goals, so they dismissed him. I think

is doing great and may be slightly behind some of the other kids his

age. But early intervention stops at age 3 and they start preparing him for

school. My Early Intervention Consultant tried to tell me that they always

tell me the positive and then we set goals on want we need to work on, but

she said when you go for a SERRC assessment, they will tell you all the

things that cannot do. She tried to warn me that it is not a real

positive report. did go for his assessment and I thought he did

very well for all the toy distraction in the room and for three people

demanding things of him. They told me that his communication skills level

is at the age of 24 months and that his skill level was at about 28 months.

That had me a little down, until I received the written report. I cried as

I read it. I guess I never see that he does have a handicap and I just see

all the great things that he is doing. He is going to be assessed by the

Child Developmental Center tomorrow. I did stop there last week to see what

the facility was like and I am going to meet with them next week to see what

their assessment is of him. does attend a day care center while my

husband and I are at work. (During the summer he stayed home with his

brother and sisters.) The day care does have a preschool program, which I

thought would be good enough. Child Development talked to me about sending

him to their facility three days a week. They want him to take a public

school bus from the day care to the center for a few hours three times a

week. is just going to be three and he will not start school for

three years. I just thought it would be a bit much for him. I also don't

want him to ride a bus at such a young age. They did tell me about a one da

y program that they had available on Fridays where he would see a speech

therapist who works off of computer programs to encourage their speech. She

showed me a Toddle Reader Rabbit program which I thought was great. I

bought it for home and tried it last night for the first time. He

now has a new word " elbow " which he was quite proud of. I do realize that

is slightly behind in his speech, but I didn't think that he was a

whole year behind. We will see what the developmental center has to say.

When I first found out that has Mosaic Down's Syndrome, I did search

the internet and found very little information on it. I don't know why I

decided to check the other day, but I am certainly happy that I found this

site and have received all the e-mails with your information sharing. It

certainly makes you feel better to know that there are other children out

there like and other parents going through the same problems and

successes of their precious child. I always said that maybe

received all the good things about MDS-the happiness and affection that he

shows. Thank you for this wonderful site and all the great information that

you are sharing.

Take care,

mother to MDS (soon to be 3), 17, Garrett 16, and

Jillian 15

[Guest guest]

Darlene,

has used the reader rabbit series of software starting from the

toddler one, and i just recently bought him the reader rabbit reading

on for ages 4-6.

It is great. They say the word and you have to repeat it, and they

do sounds that are similar, and then they have to click on the right

word that matches the one they said. Our local computer store stocks

every thing imaginable and all the reader rabbit range. The one i

mentioned was only $16.95AUS.

We also used a series of software called learning land.

Unfortunately i have to remeber to buy them from the newspaper shop

each fortnight for the next edition. Needleess to say i am missing a

few.

has quite a collection so if there is any others you want to

know about let us know, and ill see if i can give a review

mum to scott4(mds) and emily 2 in OZ

> -

>

> Could you tell me more about this Reader Rabbit Program for

Speech??

> is playing the Reader Rabbit PreSchool game and loves it - I would

love to

> be able to help her with her speech...

>

> Darlene (Mom to (3) and (5))

>

> New to the Group

>

>

> Hello! My name is Maxwell. My husband, Mark, and I are the

proud

> parents of Maxwell (MDS) who was born on September 18,

1999. We

> live in Lorain, Ohio. I have three other children from a previous

> marriage- (soon to be 18), Garrett 16, and Jillian 15. Mark

has two

> daughters from a previous marriage- 13 3/4 and Paige 10 1/2.

>

> Yours, mine, and ours-we are like the Brady Bunch. I became

pregnant with

> just before my 41st Birthday. Because of my age, my doctor

was

> concerned and had sent me for a Level 2 sonogram. Everything

appeared to be

> normal. That is when I found out the gender of the baby. I did

not choose

> to go for an Amnio, because I am scared of needles and what ever

resulted

> from the test was not going to change my mind to love and give

birth to this

> baby. I did give birth to our 7 lb. baby boy on September 18,

1999. He was

> a very alert strong baby. At his 4 month check-up in January, our

> pediatrician Dr. Sandoval noticed that seemed to be double

jointed

> and he had low muscle tone. He kept staring at 's hand

telling me

> something about a crease. He referred me to a neurologist at the

Cleveland

> Clinic. In March, went through an MRI and everything

looked normal.

> He also sent us for some blood work, but they did not perform one

of the

> tests that our pediatrician thought that they should have. He

called the

> neurologist and we had to go back in for the blood work in late

April, early

> May. The results did show that has Mosaic Down's

Syndrome. The

> neurologist did suggest that I get in touch with early

intervention, which I

> got him started in that program right away. went to

numerous

> doctor's and had series of tests. He went to a geneticist,

pulmonologist,

> pediatric ENT, heart specialist, endocrinologist, etc. The only

problem

> that came up is Asthma, so we visit the pulmonologist every 4

months or so.

>

> is a very happy, loving child. He is very affectionate.

When he

> first started to crawl he looked like a frog. He did work with a

physical

> therapist to make his low muscle tone stronger. He also worked

with an

> occupational therapist to help him feed himself-using a fork,

spoon, etc.

> He progressed well reaching all their goals, so they dismissed

him. I think

> is doing great and may be slightly behind some of the other

kids his

> age. But early intervention stops at age 3 and they start

preparing him for

> school. My Early Intervention Consultant tried to tell me that

they always

> tell me the positive and then we set goals on want we need to work

on, but

> she said when you go for a SERRC assessment, they will tell you all

the

> things that cannot do. She tried to warn me that it is not

a real

> positive report. did go for his assessment and I thought

he did

> very well for all the toy distraction in the room and for three

people

> demanding things of him. They told me that his communication

skills level

> is at the age of 24 months and that his skill level was at about 28

months.

> That had me a little down, until I received the written report. I

cried as

> I read it. I guess I never see that he does have a handicap and I

just see

> all the great things that he is doing. He is going to be assessed

by the

> Child Developmental Center tomorrow. I did stop there last week to

see what

> the facility was like and I am going to meet with them next week to

see what

> their assessment is of him. does attend a day care center

while my

> husband and I are at work. (During the summer he stayed home with

his

> brother and sisters.) The day care does have a preschool program,

which I

> thought would be good enough. Child Development talked to me about

sending

> him to their facility three days a week. They want him to take a

public

> school bus from the day care to the center for a few hours three

times a

> week. is just going to be three and he will not start

school for

> three years. I just thought it would be a bit much for him. I

also don't

> want him to ride a bus at such a young age. They did tell me about

a one da

> y program that they had available on Fridays where he would see a

speech

> therapist who works off of computer programs to encourage their

speech. She

> showed me a Toddle Reader Rabbit program which I thought was

great. I

> bought it for home and tried it last night for the first

time. He

> now has a new word " elbow " which he was quite proud of. I do

realize that

> is slightly behind in his speech, but I didn't think that

he was a

> whole year behind. We will see what the developmental center has

to say.

>

> When I first found out that has Mosaic Down's Syndrome, I

did search

> the internet and found very little information on it. I don't

know why I

> decided to check the other day, but I am certainly happy that I

found this

> site and have received all the e-mails with your information

sharing. It

> certainly makes you feel better to know that there are other

children out

> there like and other parents going through the same

problems and

> successes of their precious child. I always said that maybe

> received all the good things about MDS-the happiness and affection

that he

> shows. Thank you for this wonderful site and all the great

information that

> you are sharing.

>

> Take care,

> mother to MDS (soon to be 3), 17, Garrett 16,

and

> Jillian 15

>

>

>

>

>

>

>

>

[Guest guest]

and ,

Welcome to the group! Please check out all of our children's pictures

if you haven't yet.

The site is www.photoisland.com

The log in ID is vktphipps

password mds

a

Mom to Brannon 2yrs w/mds and le 7 mths

> Hello! My name is Maxwell. My husband, Mark, and I are the

proud

> parents of Maxwell (MDS) who was born on September 18,

1999. We

> live in Lorain, Ohio. I have three other children from a previous

> marriage- (soon to be 18), Garrett 16, and Jillian 15. Mark

has two

> daughters from a previous marriage- 13 3/4 and Paige 10 1/2.

>

> Yours, mine, and ours-we are like the Brady Bunch. I became

pregnant with

> just before my 41st Birthday. Because of my age, my doctor

was

> concerned and had sent me for a Level 2 sonogram. Everything

appeared to be

> normal. That is when I found out the gender of the baby. I did

not choose

> to go for an Amnio, because I am scared of needles and what ever

resulted

> from the test was not going to change my mind to love and give

birth to this

> baby. I did give birth to our 7 lb. baby boy on September 18,

1999. He was

> a very alert strong baby. At his 4 month check-up in January, our

> pediatrician Dr. Sandoval noticed that seemed to be double

jointed

> and he had low muscle tone. He kept staring at 's hand

telling me

> something about a crease. He referred me to a neurologist at the

Cleveland

> Clinic. In March, went through an MRI and everything

looked normal.

> He also sent us for some blood work, but they did not perform one

of the

> tests that our pediatrician thought that they should have. He

called the

> neurologist and we had to go back in for the blood work in late

April, early

> May. The results did show that has Mosaic Down's

Syndrome. The

> neurologist did suggest that I get in touch with early

intervention, which I

> got him started in that program right away. went to

numerous

> doctor's and had series of tests. He went to a geneticist,

pulmonologist,

> pediatric ENT, heart specialist, endocrinologist, etc. The only

problem

> that came up is Asthma, so we visit the pulmonologist every 4

months or so.

>

> is a very happy, loving child. He is very affectionate.

When he

> first started to crawl he looked like a frog. He did work with a

physical

> therapist to make his low muscle tone stronger. He also worked

with an

> occupational therapist to help him feed himself-using a fork,

spoon, etc.

> He progressed well reaching all their goals, so they dismissed

him. I think

> is doing great and may be slightly behind some of the other

kids his

> age. But early intervention stops at age 3 and they start

preparing him for

> school. My Early Intervention Consultant tried to tell me that

they always

> tell me the positive and then we set goals on want we need to work

on, but

> she said when you go for a SERRC assessment, they will tell you all

the

> things that cannot do. She tried to warn me that it is not

a real

> positive report. did go for his assessment and I thought

he did

> very well for all the toy distraction in the room and for three

people

> demanding things of him. They told me that his communication

skills level

> is at the age of 24 months and that his skill level was at about 28

months.

> That had me a little down, until I received the written report. I

cried as

> I read it. I guess I never see that he does have a handicap and I

just see

> all the great things that he is doing. He is going to be assessed

by the

> Child Developmental Center tomorrow. I did stop there last week to

see what

> the facility was like and I am going to meet with them next week to

see what

> their assessment is of him. does attend a day care center

while my

> husband and I are at work. (During the summer he stayed home with

his

> brother and sisters.) The day care does have a preschool program,

which I

> thought would be good enough. Child Development talked to me about

sending

> him to their facility three days a week. They want him to take a

public

> school bus from the day care to the center for a few hours three

times a

> week. is just going to be three and he will not start

school for

> three years. I just thought it would be a bit much for him. I

also don't

> want him to ride a bus at such a young age. They did tell me about

a one da

> y program that they had available on Fridays where he would see a

speech

> therapist who works off of computer programs to encourage their

speech. She

> showed me a Toddle Reader Rabbit program which I thought was

great. I

> bought it for home and tried it last night for the first

time. He

> now has a new word " elbow " which he was quite proud of. I do

realize that

> is slightly behind in his speech, but I didn't think that

he was a

> whole year behind. We will see what the developmental center has

to say.

>

> When I first found out that has Mosaic Down's Syndrome, I

did search

> the internet and found very little information on it. I don't

know why I

> decided to check the other day, but I am certainly happy that I

found this

> site and have received all the e-mails with your information

sharing. It

> certainly makes you feel better to know that there are other

children out

> there like and other parents going through the same

problems and

> successes of their precious child. I always said that maybe

> received all the good things about MDS-the happiness and affection

that he

> shows. Thank you for this wonderful site and all the great

information that

> you are sharing.

>

> Take care,

> mother to MDS (soon to be 3), 17, Garrett 16,

and

> Jillian 15

>

>

>

>

>

>

>

>

[Guest guest]

Bob,

Welcome! I am so excited that you have joined. My husband was just asking me

the other day if we had any adult MDS members on the site. I told him that we

do have a few. For those of us with infants/small children, your membership is

invaluable since you have already blazed the trail. We look forward to hearing

all about .

Mom to ph 7 mths MDS

New to the Group

Hello Everyone,

We are Bob, Pam and McKinney. Bob and Pam are parents of

who is 23 year old and has MDS. We live just North of

Pensacola, FL. We look forward to being part of the Yahoo MDS Group,

knowing your insight and experiences may help us and perhaps we may

be of some help ourselves to you. We would like to hear from anyone

who feels like writing..

Sincerely, Bob McKinney

[Guest guest]

Bob- we live near Hattiesburg Ms and have a 16 year old daughter with MDS-

would love to talk with you all!

Glenda

[Guest guest]

Hi Dana,

I am so sorry about your mother, it has to be grueling and so

hurtful to see her suffer with this, i dont know much {yet} about

transplants, but i do know there is a liver transplant group on

yahoo, i am a quiet member there too. abijann is so knowledgeable on

this subject-if you get the time i would encourage you to look up her

posts in the past here under search-i feel they would be most helpful.

Caregivers have their own heavy load to bear, i know myself how

guilty i already feel that my husband is going to have to go though

so much just tending to me when it gets worse, he does so much for me

now... I thaNk the Lord you are able to be there for your mother, you

are a blessing. My mom passed on 2 years ago and my dad last year,

wish i could have been there and done more. I know just your presence

means more than words can say for your mom. God bless. sending a

virtual hug your way... jodoco_46

>

> Hi,

> I wanted to introduce myself to the group. My mom is suffering

from cirrhosis and we are just looking for a place to find more

information and seek support as she waits on the transplant list.

Moms cirrhosis is a form called NASH nor non alcoholic stethohepitits.

> She is number one in the region for her blood type now, and we've

been that way for 24 days. It's hard to watch her go through this,

and be powerless to stop it. Whenever our phone rings we all jump

hoping it's the call from the hospital, but it's always just more

friends or family calling to check on her. Sometimes I wish they'd

stop calling because I don't want to hear the phone ring unless it's

the hospital telling us they have a liver for her. But I know they

are just as worried as we are, and I have to remind myself that they

are our support right now. Does anyone have any tricks to help them

handle the stress of it all while we wait?

>

> Thanks

> Dana

>

>

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

> Ready for the edge of your seat? Check out tonight's top picks on

Yahoo! TV.

>

>

[Guest guest]

Has he had a hepatitis C test? My hepatitis C rode in piggyback on the hepatitis

B virus baci in 1969. I cleared the B but not the C, and the C, along with fatty

liver, has now given me cirrhosis.

Colleen

lenabaker22 wrote:

Hello,

I'm new to all of this and kinda scared. My husband has been a heavy

beer drinker for about 20 years. And was also told he had Hep B 15

years ago. Right before we were married he seen a doctor at that

time and was given med. Back them we were young and did'nt know much

about it. Thought the doctor's treated it. Over the years as with

most men he never went to the doctor's only once for kidney stones.

Now 15 years later, not really knowing where it started or when. His

always been a big man so we didn't notice his bellying getting

bigger.

but about 6 weeks ago his feet and legs started swelling. So he stop

drinking and we waited....swelling still didn't go down. Finally we

located a doctor that would see him without us having insurance.

The doctor ran some blood test that showed that he was malnution and

Hep B positive. (still) so that means he had Chonic Hep B and we

didn't know. Liver test come back low....we don't know what to ask

about when it come to the blood test being done.

The doctor started him on multi vit.-folic acid-B1 thiemin- protien

drinks and water pill with potassem for a week and still the water

retention was not coming down. Then he put him on an additional

water pill. This one is working and he has lost about 20 pound in 3

weeks. His feet and leg are better but still a little sore.

The doctor says we may have dodge a bullet this time.

But still wants to do futher test such as CT, Biopsy,MRI we can't

afford to have these test done and don't have insurance.

If my husband stays away from the beer and takes care of himself.

Will he keep getting better? Could this all be just a warning?

Thank you for your help.

Group Email: livercirrhosissupport

web address:

http://groups.yahoo.com/group/livercirrhosissupport/

[Guest guest]

HI, Lena. I'm Bobby, a recovering alcoholic currently waiting to be placed on

the liver transplant list. I read your post, and my ears perked up. There are

many similarities to my story. I did not have a history of HEP B but I did drink

a lot of beer in my youth, and entire adult life. It was a staple food for me as

it is with many in Europe. I started having a dull pain in June 06 that

progressed into a severe dibilitaing chronic pain, that I am on strong pain

killers for. I want to make one point. I had a CT scan done, and it came back

normal. I have had an MRI done as well, also normal. I don't, or try not to give

medical advice, but I will tell you what I would do if I could do it over...

I would request a NEEDLE BIOPSY. This is the most reliable test for Cirrhosis,

or what is known as end stage liver disease. I don't know if edema is common in

other forms of liver disease, but I do know that Ardis, my best friend had

severe edema but from her liver disease decompensating. Now, that part about

drinking... I was told that if I quit and stayed sober, abstained from ALL

alcohol, there was a very good chance that I would not need a liver transplant.

The biggest improvements are usuallty seen in the first year. After that , the

hepatologist told us that he expected no further improvement, because my liver

function tests are normal, but I have some other rather insidious complications,

and may still require a transplant.I have been sober since Sept 15 2006. A year

and 4 months.

The bottom line is this, to drink means certain death from alcoholic cirrhosis.

My previous post contains an link to a story about that subject. Welcome to our

group, and good luck to you, and our prayers go out to you and your dear

husband.

New to the group

Hello,

I'm new to all of this and kinda scared. My husband has been a heavy

beer drinker for about 20 years. And was also told he had Hep B 15

years ago. Right before we were married he seen a doctor at that

time and was given med. Back them we were young and did'nt know much

about it. Thought the doctor's treated it. Over the years as with

most men he never went to the doctor's only once for kidney stones.

Now 15 years later, not really knowing where it started or when. His

always been a big man so we didn't notice his bellying getting

bigger.

but about 6 weeks ago his feet and legs started swelling. So he stop

drinking and we waited....swelling still didn't go down. Finally we

located a doctor that would see him without us having insurance.

The doctor ran some blood test that showed that he was malnution and

Hep B positive. (still) so that means he had Chonic Hep B and we

didn't know. Liver test come back low....we don't know what to ask

about when it come to the blood test being done.

The doctor started him on multi vit.-folic acid-B1 thiemin- protien

drinks and water pill with potassem for a week and still the water

retention was not coming down. Then he put him on an additional

water pill. This one is working and he has lost about 20 pound in 3

weeks. His feet and leg are better but still a little sore.

The doctor says we may have dodge a bullet this time.

But still wants to do futher test such as CT, Biopsy,MRI we can't

afford to have these test done and don't have insurance.

If my husband stays away from the beer and takes care of himself.

Will he keep getting better? Could this all be just a warning?

Thank you for your help.

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know-it-all with Yahoo! Mobile. Try it now.

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[Guest guest]

This is a well known website that explains the symptoms quite well. Edema

according to this , though is a symptom of decompensated cirrhosis. I'm sorry to

say. I wish doctors would inform people better of where they stand. If he were

my loved one, I'd get him to a hepatologist for a needle biopsy, and a liver

transplant evaluation, asap.

http://janis7hepc.com/cirrhosis5.htm#more

New to the group

Hello,

I'm new to all of this and kinda scared. My husband has been a heavy

beer drinker for about 20 years. And was also told he had Hep B 15

years ago. Right before we were married he seen a doctor at that

time and was given med. Back them we were young and did'nt know much

about it. Thought the doctor's treated it. Over the years as with

most men he never went to the doctor's only once for kidney stones.

Now 15 years later, not really knowing where it started or when. His

always been a big man so we didn't notice his bellying getting

bigger.

but about 6 weeks ago his feet and legs started swelling. So he stop

drinking and we waited....swelling still didn't go down. Finally we

located a doctor that would see him without us having insurance.

The doctor ran some blood test that showed that he was malnution and

Hep B positive. (still) so that means he had Chonic Hep B and we

didn't know. Liver test come back low....we don't know what to ask

about when it come to the blood test being done.

The doctor started him on multi vit.-folic acid-B1 thiemin- protien

drinks and water pill with potassem for a week and still the water

retention was not coming down. Then he put him on an additional

water pill. This one is working and he has lost about 20 pound in 3

weeks. His feet and leg are better but still a little sore.

The doctor says we may have dodge a bullet this time.

But still wants to do futher test such as CT, Biopsy,MRI we can't

afford to have these test done and don't have insurance.

If my husband stays away from the beer and takes care of himself.

Will he keep getting better? Could this all be just a warning?

Thank you for your help.

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[Guest guest]

Hello Bobbie,

I just read your story about your friend and I think you are an

angel. I also watched the video it made me cry. And think about my

Mom...see not only is my husband going though this my mom is

also...I don't talk to her much. Her family has always been the

people at the bar. So it nice to know that there are people like

you. Maybe she'll find an angel like you there. She did stop

drinking for about 2 years but has been back to drinking for the

passed 2.5 years now. That makes me mad because she was getting

better. She had both the drinking and Hep B problem and was at the

stage where she was bleeding and really confused. My husband not as

bad as she was. no bleeding no confusion no vomit no confusion. So

because she was back to normal after she quit drinking. This has

given be some hope with my husband. As long as he doesn't drink.

I think sometimes that I was born to have to deal with alcohol

problems...sorry I don't drink and it is sometimes very hard not to

be angry.

Do you have any idea how much a liver biopsy cost? We have no

insurance and can not get state aid.

>

> HI, Lena. I'm Bobby, a recovering alcoholic currently waiting to

be placed on the liver transplant list. I read your post, and my

ears perked up. There are many similarities to my story. I did not

have a history of HEP B but I did drink a lot of beer in my youth,

and entire adult life. It was a staple food for me as it is with

many in Europe. I started having a dull pain in June 06 that

progressed into a severe dibilitaing chronic pain, that I am on

strong pain killers for. I want to make one point. I had a CT scan

done, and it came back normal. I have had an MRI done as well, also

normal. I don't, or try not to give medical advice, but I will tell

you what I would do if I could do it over...

> I would request a NEEDLE BIOPSY. This is the most reliable test

for Cirrhosis, or what is known as end stage liver disease. I don't

know if edema is common in other forms of liver disease, but I do

know that Ardis, my best friend had severe edema but from her liver

disease decompensating. Now, that part about drinking... I was told

that if I quit and stayed sober, abstained from ALL alcohol, there

was a very good chance that I would not need a liver transplant. The

biggest improvements are usuallty seen in the first year. After

that , the hepatologist told us that he expected no further

improvement, because my liver function tests are normal, but I have

some other rather insidious complications, and may still require a

transplant.I have been sober since Sept 15 2006. A year and 4 months.

> The bottom line is this, to drink means certain death from

alcoholic cirrhosis. My previous post contains an link to a story

about that subject. Welcome to our group, and good luck to you, and

our prayers go out to you and your dear husband.

>

> New to the group

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hello,

>

> I'm new to all of this and kinda scared. My husband has been a

heavy

>

> beer drinker for about 20 years. And was also told he had Hep B 15

>

> years ago. Right before we were married he seen a doctor at that

>

> time and was given med. Back them we were young and did'nt know

much

>

> about it. Thought the doctor's treated it. Over the years as with

>

> most men he never went to the doctor's only once for kidney stones.

>

>

>

> Now 15 years later, not really knowing where it started or when.

His

>

> always been a big man so we didn't notice his bellying getting

>

> bigger.

>

> but about 6 weeks ago his feet and legs started swelling. So he

stop

>

> drinking and we waited....swelling still didn't go down. Finally

we

>

> located a doctor that would see him without us having insurance.

>

>

>

> The doctor ran some blood test that showed that he was malnution

and

>

> Hep B positive. (still) so that means he had Chonic Hep B and we

>

> didn't know. Liver test come back low....we don't know what to ask

>

> about when it come to the blood test being done.

>

>

>

> The doctor started him on multi vit.-folic acid-B1 thiemin-

protien

>

> drinks and water pill with potassem for a week and still the water

>

> retention was not coming down. Then he put him on an additional

>

> water pill. This one is working and he has lost about 20 pound in

3

>

> weeks. His feet and leg are better but still a little sore.

>

>

>

> The doctor says we may have dodge a bullet this time.

>

>

>

> But still wants to do futher test such as CT, Biopsy,MRI we can't

>

> afford to have these test done and don't have insurance.

>

>

>

> If my husband stays away from the beer and takes care of himself.

>

>

>

> Will he keep getting better? Could this all be just a warning?

>

>

>

> Thank you for your help.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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[Guest guest]

Ay Yi Yi Yi,

 

Distilled water IS highly acidic in many cases.

 

And, one would not add the DMSO to the water, because it's 'slow.'

 

ONE always adds a chemical TO the water, because it's good technique to do so,

never, never, never, ADDING water TO any chemical.

 

The solution to pollution, we engineers know, is dilution.

 

So, the solution to pollution, is dilution. Always dilute chemicals with water, not vice versa.

 

Dr. Dan, PhD Researcher

 

Yes you need to dilute it to use it on your skin. 99% can be treated as 100% for the sake of simplicity in making dilutions. Use only distilled water since it is pure, not all filtered water is pure.

What ever the percentage you want to make the total parts should add up to ten. For example 70% solution is 7 parts DMSO and 3 parts water. 5% would be 1/2 part DMSO 9 1/2 parts distilled water. Although many people use 70% on some

body parts it does not always take a concentrated solution to achieve good results. I have used 20% on injuries with good results. Start low and work up until you know if you are sensitive or if you are treating sensitive areas where

the skin is thin, face, neck, chest, back of knees, inside arms.The " part " measure can be any unit of measure, even something that is not a normal measuring device like say a baby food jar or a juice glass. You will end up with ten

times the amount of the measuring device so what you use depends on how much you want to mix up at one time.Always add the DMSO to the water since there is a heat release when the two mix and this will slow it down.

Garnet sarahlight22 wrote:> > > > >

> >> >> > Just don't use it full strength topically. Learn the> > dilutions for various skin areas, not more than 70% and on> > sensitive skin not more than 30%, eyes, nose, mucous

> > membranes not more than 5%.> > Hi Garnet,> > I just got some DMSO shipped to me from > http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16

> <http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16> and > it just says 99% purity. What I've bought in the past always said it was

> diluted 70% or less. This is the first I've ordered from this place. I > got the link from the files section for this group. So would you say > this is not diluted? Sorry to sound daft but well...I'm sorta new at this.

> > What's the best way to dilute? Distilled, filtered water? I usually > apply it topically along with magnesium oil.> > Thanks!> > in Albuquerque> > PS. What's the half life of DMSO??? Just kidding!

> >

[Guest guest]

Half-life on 16 oz would be 8 oz.

Chuck

Shopping tip: You can get shoes for 85 cents at the

bowling alley.

On 7/11/2009 12:09:21 AM, sarahlight22 (sarahlight@...)

wrote:

> PS. What's

> the half life of DMSO??? Just kidding![image " " ]

>

No virus found in this outgoing message.

Checked by AVG - www.avg.com

Version: 8.5.386 / Virus Database: 270.13.10/2231 - Release Date: 07/11/09

05:57:00

[Guest guest]

Adding the DMSO to the water " slows " the release of heat as

opposed to adding the water to pure DMSO, which results in a

faster release of heat.

And yes distilled water is slightly acidic. For drinking

water one can add 1/8 t per gallon baking soda to neutralize

distilled water. I also add Concentrace Liquid Minerals to

add back macro and trace minerals, helps with taste as well

as being a nutritional source.

For mixing with DMSO it is not an issue that it is slightly

acidic.

Garnet

Dan Kukulka wrote:

>

>

>

> Ay Yi Yi Yi,

>

> Distilled water IS highly acidic in many cases.

>

> And, one would not add the DMSO to the water, because it's 'slow.'

>

> ONE always adds a chemical TO the water, because it's good technique to

> do so,

> never, never, never, ADDING water TO any chemical.

>

> The solution to pollution, we engineers know, is dilution.

>

> So, the solution to pollution, is dilution. Always dilute chemicals with

> water, not vice versa.

>

> Dr. Dan, PhD Researcher

>

>

>

> On Sat, Jul 11, 2009 at 11:54 AM, Garnet <garnet@...

> > wrote:

>

>

>

> Yes you need to dilute it to use it on your skin. 99% can be

> treated as 100% for the sake of simplicity in making

> dilutions. Use only distilled water since it is pure, not

> all filtered water is pure.

>

> What ever the percentage you want to make the total parts

> should add up to ten. For example 70% solution is 7 parts

> DMSO and 3 parts water. 5% would be 1/2 part DMSO 9 1/2

> parts distilled water. Although many people use 70% on some

> body parts it does not always take a concentrated solution

> to achieve good results. I have used 20% on injuries with

> good results. Start low and work up until you know if you

> are sensitive or if you are treating sensitive areas where

> the skin is thin, face, neck, chest, back of knees, inside arms.

>

> The " part " measure can be any unit of measure, even

> something that is not a normal measuring device like say a

> baby food jar or a juice glass. You will end up with ten

> times the amount of the measuring device so what you use

> depends on how much you want to mix up at one time.

>

> Always add the DMSO to the water since there is a heat

> release when the two mix and this will slow it down.

>

> Garnet

>

>

>

> sarahlight22 wrote:

> >

> >

> >

> >

> >

> > >

> > >

> > > Just don't use it full strength topically. Learn the

> > > dilutions for various skin areas, not more than 70% and on

> > > sensitive skin not more than 30%, eyes, nose, mucous

> > > membranes not more than 5%.

> >

> > Hi Garnet,

> >

> > I just got some DMSO shipped to me from

> > http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16

> <http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16>

> > <http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16

> <http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16>> and

> > it just says 99% purity. What I've bought in the past always said

> it was

> > diluted 70% or less. This is the first I've ordered from this

> place. I

> > got the link from the files section for this group. So would you say

> > this is not diluted? Sorry to sound daft but well...I'm sorta new

> at this.

> >

> > What's the best way to dilute? Distilled, filtered water? I usually

> > apply it topically along with magnesium oil.

> >

> > Thanks!

> >

> > in Albuquerque

> >

> > PS. What's the half life of DMSO??? Just kidding!

> >

> >

>

>

>

[Guest guest]

LOL! -- actually it is pretty short, an hour or so, I

have not actually looked it up though.

Garnet

> On 7/11/2009 12:09:21 AM, sarahlight22 (sarahlight@...

> <mailto:sarahlight%40cybermesa.com>)

> wrote:

>

> > PS. What's

> > the half life of DMSO??? Just kidding![image " " ]

> >

>

>

>

>

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

>

>

> No virus found in this outgoing message.

> Checked by AVG - www.avg.com

> Version: 8.5.386 / Virus Database: 270.13.10/2231 - Release Date: 07/11/09

05:57:00

>

[Guest guest]

I add Prill beads to my distilled water, and that's supposed to alkalinize. Can anyone confirm this?Be well,Léna Adding the DMSO to the water "slows" the release of heat as opposed to adding the water to pure DMSO, which results in a faster release of heat. And yes distilled water is slightly acidic. For drinking water one can add 1/8 t per gallon baking soda to neutralize distilled water. I also add Concentrace Liquid Minerals to add back macro and trace minerals, helps with taste as well as being a nutritional source. For mixing with DMSO it is not an issue that it is slightly acidic. Garnet Dan Kukulka wrote: > > > > Ay Yi Yi Yi, > > Distilled water IS highly acidic in many cases. > > And, one would not add the DMSO to the water, because it's 'slow.' > > ONE always adds a chemical TO the water, because it's good technique to > do so, > never, never, never, ADDING water TO any chemical. > > The solution to pollution, we engineers know, is dilution. > > So, the solution to pollution, is dilution. Always dilute chemicals with > water, not vice versa. > > Dr. Dan, PhD Researcher > > > > On Sat, Jul 11, 2009 at 11:54 AM, Garnet <garnetgrandecom (DOT) net > <mailto:garnetgrandecom (DOT) net>> wrote: > > > > Yes you need to dilute it to use it on your skin. 99% can be > treated as 100% for the sake of simplicity in making > dilutions. Use only distilled water since it is pure, not > all filtered water is pure. > > What ever the percentage you want to make the total parts > should add up to ten. For example 70% solution is 7 parts > DMSO and 3 parts water. 5% would be 1/2 part DMSO 9 1/2 > parts distilled water. Although many people use 70% on some > body parts it does not always take a concentrated solution > to achieve good results. I have used 20% on injuries with > good results. Start low and work up until you know if you > are sensitive or if you are treating sensitive areas where > the skin is thin, face, neck, chest, back of knees, inside arms. > > The "part" measure can be any unit of measure, even > something that is not a normal measuring device like say a > baby food jar or a juice glass. You will end up with ten > times the amount of the measuring device so what you use > depends on how much you want to mix up at one time. > > Always add the DMSO to the water since there is a heat > release when the two mix and this will slow it down. > > Garnet > > > > sarahlight22 wrote: > > > > > > > > > > > > > > > > > > > Just don't use it full strength topically. Learn the > > > dilutions for various skin areas, not more than 70% and on > > > sensitive skin not more than 30%, eyes, nose, mucous > > > membranes not more than 5%. > > > > Hi Garnet, > > > > I just got some DMSO shipped to me from > > http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16 > <http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16> > > <http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16 > <http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16>> and > > it just says 99% purity. What I've bought in the past always said > it was > > diluted 70% or less. This is the first I've ordered from this > place. I > > got the link from the files section for this group. So would you say > > this is not diluted? Sorry to sound daft but well...I'm sorta new > at this. > > > > What's the best way to dilute? Distilled, filtered water? I usually > > apply it topically along with magnesium oil. > > > > Thanks! > > > > in Albuquerque > > > > PS. What's the half life of DMSO??? Just kidding! > > > > > > >

[Guest guest]

Just thought I'd start up a little controversy!

> > > > > PS. What's> > > the half life of DMSO??? Just kidding![image ";)"]> > >> > > > > > > > > > ------------------------------------------------------------------------> > > > > > No virus found in this outgoing message.> > Checked by AVG - www.avg.com > > Version: 8.5.386 / Virus Database: 270.13.10/2231 - Release Date: 07/11/09 05:57:00> >>

[Guest guest]

Hi, :

Just for your consideration, some of the “cures”

may truly be in your cupboard. You might wish to Google the use of

cinnamon for controlling diabetes, I think the recommendation is to start with

one quarter teaspoon per day.

Raw foods, as much as you can work into

your daily diet would be a great place to start.

Also, a clean interior is mandatory…..you

may wish to Google Homozon or Colosan, ( and there are other similar products) to

give your body the best jump start to good health.

Cheers,

Taffy

From:

DimethylSulfoxide-DMSO

[mailto:DimethylSulfoxide-DMSO ]

On Behalf Of Dobbins

Sent: July-10-09 3:46 PM

To: DimethylSulfoxide-DMSO

Subject: new to the group

DO not know anything at all about this? where does one

buy it? How much will it cost?

I have diabetes. and a couple of other health issues...Learning or trying to

learn herbal medicine, because it is free..

I am out of a job, no money for prescriptions, doctors or anything.

SO herbal experimentation is the only thing within my reach....

Here I am.. I have nothing...I know nothing.

western NC