Introduction

[Guest guest]

Hi Zaman,

Welcome to CMTUS.

I hope we have some Texans here. It's a terribly big state however!

Kathleen in Seattle

[Guest guest]

Hi Zaman,

Welcome to CMTUS.

I hope we have some Texans here. It's a terribly big state however!

Kathleen in Seattle

[Guest guest]

Hi Nina Cat,

Welcome to the group.

If you have questions or answers please don't be shy.

How are you doing?

I know of some other CMTers in the UK, too.

Regards,

Kat

(this is becoming a rather feline group! LOL )

[Guest guest]

Hello Nina glad to hear from you!

My name is Rose-Marie (Rose). I am 40 and living in Örebro in Sweden (du

kanske förstår lite svenska?).

I have CMT1A like my two sons and probably my father. Fun to hear from

someone from Scandinavia.

Regards Rose

[Guest guest]

In a message dated 4/9/00 9:24:07 AM Pacific Daylight Time, lmcurry@...

writes:

<< Hello Everyone! >>

*********

Hi Larry & Welcome

I'm 38 and have had CMT since age 5. I have one AFO (left), the right ankle

is fused solid. My hands are also affected. I use arm crutchs + in order to

get around.

Jeanie (from Oregon)

Moonglow21@...

Jeanie421@...

come and visit my http://www.egroups.com/group/Charcot-Marie-Toothonlinechat " >CMT chat

room

http://www.egroups.com/group/Charcot-Marie-Toothonlinechat

[Guest guest]

In a message dated 4/9/00 9:24:07 AM Pacific Daylight Time, lmcurry@...

writes:

<< Hello Everyone! >>

*********

Hi Larry & Welcome

I'm 38 and have had CMT since age 5. I have one AFO (left), the right ankle

is fused solid. My hands are also affected. I use arm crutchs + in order to

get around.

Jeanie (from Oregon)

Moonglow21@...

Jeanie421@...

come and visit my http://www.egroups.com/group/Charcot-Marie-Toothonlinechat " >CMT chat

room

http://www.egroups.com/group/Charcot-Marie-Toothonlinechat

[Guest guest]

Nina, it is very nice to meet you. You are doing a fine job with your new

computer.

I'm 38, married w/2 kids and a cat. I've had CMT since age 5. My grandpa,

dad and brother all have CMT also.

Jeanie (from Oregon)

Moonglow21@...

Jeanie421@...

come and visit http://www.egroups.com/group/Charcot-Marie-Toothonlinechat " >CMT chat

room

http://www.egroups.com/group/Charcot-Marie-Toothonlinechat

**************

In a message dated 4/12/00 6:25:17 PM Pacific Daylight Time,

itch1@... writes:

<< I only resently bought a computer, so forgive me if I'm making a mess of

things... I am so happy to have found other CMT'ers (outside my familiy), to

" chat "

with for the first time in my life. I wish you all a lovely day! >>

[Guest guest]

Hi Melody,

I'm glad you joined us and introduced yourself so well. There are others here

in Oregon, California and Washington, as you'll soon see if you haven't

already.

I am the youngest of 5 kids and the only one who inherited, but we did learn

that my mom had CMT after she had passed away (when I was diagnosed).

Regards,

Kat in Seattle

[Guest guest]

Welcome Melody.

Introduction

> Hello CMT discussion group!:

> My name is Melody Cleary and I am glad to become a member. I am 44 years

old and was diagnosed with CMT when I was 6 years old. I am the youngest of

seven children and am the only one affected, and know of no extended

relatives that are affected, although they are in the midwest and I do not

know many of them (I am on the west coast). I have no nieces or nephews

that are affected. My ancestry is mostly German, a little Scandinavian and

French. I am married and have a healthy, strong 12 year old son who has

been my joy - he and my husband are very helpful around our house. I am

affected above the knees and have very weak hamstring muscles. About 10

years ago I was fitted with AFO braces (the Oregon Orthotic System) and

forearm crutches and have had good success with them. I have been able to

walk pain free up until recently - one knee is giving me trouble, possibly

due to falling. My hands and lower arms are also affected, but the fingers

are fairly nimble. I love to paint and do artwork, when I have time, and do

a little flower gardening now and then.

>

> I am looking forward to corresponding with any or all of you.

>

> Sincerely,

> Melody Cleary

>

>

>

[Guest guest]

Welcome Melody.

Introduction

> Hello CMT discussion group!:

> My name is Melody Cleary and I am glad to become a member. I am 44 years

old and was diagnosed with CMT when I was 6 years old. I am the youngest of

seven children and am the only one affected, and know of no extended

relatives that are affected, although they are in the midwest and I do not

know many of them (I am on the west coast). I have no nieces or nephews

that are affected. My ancestry is mostly German, a little Scandinavian and

French. I am married and have a healthy, strong 12 year old son who has

been my joy - he and my husband are very helpful around our house. I am

affected above the knees and have very weak hamstring muscles. About 10

years ago I was fitted with AFO braces (the Oregon Orthotic System) and

forearm crutches and have had good success with them. I have been able to

walk pain free up until recently - one knee is giving me trouble, possibly

due to falling. My hands and lower arms are also affected, but the fingers

are fairly nimble. I love to paint and do artwork, when I have time, and do

a little flower gardening now and then.

>

> I am looking forward to corresponding with any or all of you.

>

> Sincerely,

> Melody Cleary

>

>

>

[Guest guest]

Welcome Melody.

Introduction

> Hello CMT discussion group!:

> My name is Melody Cleary and I am glad to become a member. I am 44 years

old and was diagnosed with CMT when I was 6 years old. I am the youngest of

seven children and am the only one affected, and know of no extended

relatives that are affected, although they are in the midwest and I do not

know many of them (I am on the west coast). I have no nieces or nephews

that are affected. My ancestry is mostly German, a little Scandinavian and

French. I am married and have a healthy, strong 12 year old son who has

been my joy - he and my husband are very helpful around our house. I am

affected above the knees and have very weak hamstring muscles. About 10

years ago I was fitted with AFO braces (the Oregon Orthotic System) and

forearm crutches and have had good success with them. I have been able to

walk pain free up until recently - one knee is giving me trouble, possibly

due to falling. My hands and lower arms are also affected, but the fingers

are fairly nimble. I love to paint and do artwork, when I have time, and do

a little flower gardening now and then.

>

> I am looking forward to corresponding with any or all of you.

>

> Sincerely,

> Melody Cleary

>

>

>

[Guest guest]

Welcome Melody,

My name is a. I am the mother of a 13 you daughter with CMT diagnosed

around 8 yrs of age. We live in Eugene Oregon. Where do you live? And

Welcome.

a

[Guest guest]

Hi a - I have grown up and lived in the Beaverton-Tigard area and now

reside in Beaverton. Thanks for the welcome.

Melody Cleary

Re: Introduction

> Welcome Melody,

>

> My name is a. I am the mother of a 13 you daughter with CMT

diagnosed

> around 8 yrs of age. We live in Eugene Oregon. Where do you live? And

> Welcome.

> a

>

>

>

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

> Best friends, most artistic, class clown Find 'em here:

> http://click.egroups.com/1/4054/10/_/616793/_/959640605/

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

>

>

[Guest guest]

Hi a - I have grown up and lived in the Beaverton-Tigard area and now

reside in Beaverton. Thanks for the welcome.

Melody Cleary

Re: Introduction

> Welcome Melody,

>

> My name is a. I am the mother of a 13 you daughter with CMT

diagnosed

> around 8 yrs of age. We live in Eugene Oregon. Where do you live? And

> Welcome.

> a

>

>

>

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

> Best friends, most artistic, class clown Find 'em here:

> http://click.egroups.com/1/4054/10/_/616793/_/959640605/

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

>

>

[Guest guest]

<< I am new to this group and looking forward to meeting some new friends who

have lots in common with me. >>

Hi Kandy. Do you have CMT? Did any of your children inherit?

How are you affected?

Kat in Seattle

always curious

>^.^<

[Guest guest]

Welcome My name is Martha I am 47 and been married for 27 years. I live in

Colorado. I have a beautiful 20 year old daughter. I have had a diagnosis of CMT

since I was

kny@... wrote:

Hi,

I am new to this group and looking forward to meeting some new

friends who have lots in common with me. I live in Vancouver, WA

with my husband and 4 children. I also have two step-children who

are older. My youngest is a 7 month old nursling and I home-school

the rest. Looking forward to discussing our problems and our

solutions.

Kandy - Aspiring Midwife - Wife to a great man,

Mother of six, - Home-schooler/Home-birther

Love is the answer - Give in to God

If I could show you how to make $500-$800/mo at home part-time,

with no selling, inventory, or MLM type pitfalls, would you like to

hear about it?

kny@...

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

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

[Guest guest]

In a message dated 06/07/00 04:17:10 PM Pacific Daylight Time, kny@...

writes:

<< Hi,

I am new to this group and looking forward to meeting some new

friends who have lots in common with me. I live in Vancouver, WA

with my husband and 4 children. I also have two step-children who

are older. My youngest is a 7 month old nursling and I home-school

the rest. Looking forward to discussing our problems and our

solutions.

Kandy - Aspiring Midwife - Wife to a great man,

Mother of six, - Home-schooler/Home-birther

Love is the answer - Give in to God >>

HI Kandy, I have 5 kids. I was afraid to home birth and way more afraid to

home school. Do any of your kids have CMT? Do you have CMT?

[Guest guest]

In a message dated 06/07/00 04:17:10 PM Pacific Daylight Time, kny@...

writes:

<< Hi,

I am new to this group and looking forward to meeting some new

friends who have lots in common with me. I live in Vancouver, WA

with my husband and 4 children. I also have two step-children who

are older. My youngest is a 7 month old nursling and I home-school

the rest. Looking forward to discussing our problems and our

solutions.

Kandy - Aspiring Midwife - Wife to a great man,

Mother of six, - Home-schooler/Home-birther

Love is the answer - Give in to God >>

HI Kandy, I have 5 kids. I was afraid to home birth and way more afraid to

home school. Do any of your kids have CMT? Do you have CMT?

[Guest guest]

Mamie,

I would not take the PEG out. He can eat even with the tube in and liquids and

medicines go better through the tube than by mouth. On early infections,

patients often bounce back well with physical and speech therapy. It does get

more difficult to bounce back as time goes on.

We have a going group in the DC area and hope to meet again this month. We have

been meeting at the Moller's who live just across the Cabin Bridge in

land, near Model Basin. We generally chat about caregiving

problems and what to do. I will put a note on the list later this week if we

decide to have a meeting this month.

Take care, Bill Werre

[Guest guest]

--Mamie,

It is so nice to meet you and Jim. I am very new here and have met

some very nice people who are very loving and caring. I am very

thankful for this site. Again welcome and God Bless!

Belinda.

- In shydrager@y..., MBur234@a... wrote:

> Hello Friends,

>

> You all feel like friends to me even though you do not know me/us

yet. Ihave

> been reading the list messages for several months and feel like I

have gotten

> to know a lot of you, so finally I'll introduce us. My husband,

Jim, at age

> 66, was diagnosed with MSA/SDS in mid-Nov. 2001. We both turned 67

in Dec.

> 2001. . . . . . Jim, with his partner, and now the sons, has been

in the

> concrete contracting business in Fairfax, VA, for 43 years. I was

blessed to

> be able to be a " stay-at-home-Mom " as they call it now, and raise

our two

> daughers and one son (our 4th baby died with a defective heart a

few hours

> after birth). We have four beautiful grand children (aren't all

> grandchildren beautiful??!!) Our children all live in local areas,

which has

> been such a blessing, because I could not have gotten through the

last months

> without their help. My second 'career' after full-time mom has

been

> teaching/administrating at a local Christian school for 27 years

and I'm

> still at it, but now on a part-time basis since I've become a

caregiver. So,

> that's us in an a nutshell. Now . . . a little more about Jim.

>

> He had been exhibiting some MSA/SDS symptons for about 3 years, but

we didn't

> realize what was going on. Finally in August 2001 he couldn't put

off going

> to the doctor any longer. Primary complaints were swallowing

difficulty and

> much congestion--couldn't clear his throat, always felt clogged

up. Cancer

> of the esophagus was ruled out, acid reflusx was discovered. Then,

during

> his second hospitalization in late Sept. with dehydration,

breathing and

> swallowing problems (he couldn't swallow), and after losing much

weight in

> extremely short periods of time, it was determined that he needed a

G-tube.

> That was done, and he started getting everything through the tube.

After

> many tests including swallow test and MRI, there was still no

diagnosis of

> WHY. So, the neurologist sent us to s Hopkins where Dr. Reich

diagnosed

> him in mid-Nov. It has been a rough time--Jim felt so very bad

after

> basically always having been a healty man, . BUT, medications and

prayer

> have brought a miraculous improvement! Swallowing seemed to be

improving, he

> had another swallow test on Jan 2, and the obstruction that poked

into his

> esophagus--that I had been able to see on the screen during the

first

> test--was not there!!!

>

> So, he slowly started eating and drinking again till now he is

using the tube

> only for his morning meds. We're hoping the tube can come out--can

that be??

> I hope to get Jim back to the doc. real soon to find out--getting

him to go

> to the doctor has been a real chore!! The next big praise to the

Lord is

> that he has been going back to work for half a day for the last

three weeks,

> the first time he's worked since last August after never having

missed a day

> . . . . It feels like we have come through a deep, dark valley and

are now

> seeing some light. I know we still have a long way to go, but we

are so

> grateful for the improvement we are currently experiencing. . . .

Hope this

> has not been too long . . .

>

> More later,

> Mamie Burton

[Guest guest]

Vickie,

Welcome. Steve's lucky to have you on his side. Please keep us

posted on finding a dentist and getting the amalgams removed.

All the best,

Ann

> Hello:

>

> My name is Vickie and my significant other is Steve. He was

diagnosed

> with PD in 1996. Thanks to a posting by one of the members of the

> autism-mercury group to the Parkinson?s group we?ve eventually found

> our way to Andy and this group. After a LOT of research, a few dead

> ends and some wrong turns we've finally reached the conclusion he

> doesn't have Parkinson's Disease (PD), we think it's heavy metals,

> especially mercury, causing his problems.

>

> Here's the basics;

>

> He first noticed tremors in his right hand in the fall of 1995. He

> attributed the shaking to stress due to the break up of a long-term

> relationship that July. His father had also been diagnosed with

cancer

> in that July as well. When he noticed the tremors and mentioned them

> to his GP, the GP diagnosed them as action tremors. The GP felt he

was

> depressed as well.

>

> At his dad's funeral in May of 1996 everyone noticed that something

> was wrong with him and commented on it. Shortly after this he had a

> physical and his GP sent him to the first neurologist. This one

> thought Steve was on some type of medication because he was so slow

> and in a drug-like state and diagnosed it as Parkinsonian syndrome.

He

> recommended a second neurologist who diagnosed it as PD. Steve went

> through the usual rounds of medications, including a drug trial. The

> meds only made him very slow, and sleepy and his limbs felt like

lead.

> NONE of them helped the tremors. Not to mention that every time he

> told the neurologist it didn't seem to be helping him the neuro told

> him to up the dosage. The possible side effects included

> hallucinations such as seeing and hearing people not there. So he

> discontinued the meds.

>

> Steve started searching the Internet in 1998. That's when he first

> made a possible connection between mercury and his symptoms. He

> realized that he'd had SIX amalgam fillings replaced with more

amalgam

> between September and October of 1995, just BEFORE he'd first

noticed

> the tremors. He ran the possibility by his GP who ordered a blood

test

> for mercury and lead in August of 1998. The results were lead 2,

> mercury 0. His GP said this was within the normal range so Steve

> dropped that line of investigation and moved on to alternate

> therapies.

>

> I was a hospital corpsman in the Navy for 4 years and then a medical

> assistant to 2 trauma surgeons for 5 years. When I worked for the

> doctors we had several PD patients and I have an aunt with PD as

well.

> My first impression when I met Steve was he didn?t have PD. NONE

of

> Steve's symptoms were anywhere close to what I had observed with the

> patients or my aunt. To me it appeared to be more like some sort of

> heavy metal toxicity. I was even more convinced when I found out

Steve

> had been a navigator on a refueling plane for 8 years when he was in

> the Air Force.

>

> We pursued alternative treatments and supplements with minimal

results

> at best. Then in November of last year Steve had to have a tooth

> removed. It had one of the largest amalgam fillings in it. A week or

> so later we realized he?d had some very slight, but noticeable

> improvement in his symptoms. It was then I found out Steve had 15

> amalgam fillings. That lead us back to pursue the mercury angle one

> more time. THIS time around there was much more information

available

> regarding mercury poisoning. I found a list of symptoms for mercury

> poisoning and almost all of them fit Steve to a " T " . The most

notable

> being bleeding gums.

>

> The search led me to a web site on the autism/mercury connection.

When

> I read the symptoms there it dawned on me that a number of Steve's

> symptoms were closer to those of autism than PD. His tremors truly

> resemble the flapping motion an autistic child makes more than the

> traditional pill rolling movement of PD. When he dresses he circles

> while putting on his clothes and shoes. He has a REAL problem with

> duality. If he's doing something like turning the corner in the car

or

> signing his name to a check and I ask him a question he just

freezes.

>

> As we searched we also realized that at the time the tooth was

removed

> the supplements he was taking were almost identical to the ones

> recommended for chelation of mercury.

>

> During this time I also realized that Steve more than likely has a

> systemic candida infection. So we started on a candida diet and got

> him on probiotics. Since then the white patch on his tongue is

> clearing up, he no longer has chronic rhinitis, his eyes aren't

matted

> shut when he wakes up and he no longer feels drunk most of the time.

> He's also sleeping better. Since reading the autism-mercury group

> we've further modified the diet to a gf/cf diet.

>

> We are now searching for a mercury free dentist here in the Rhode

> Island/Massachusetts area to remove Steve's amalgam fillings. Any

> recommendations would be helpful.

>

> Since this is so long already I won't repost the supplements Steve

is

> currently taking. We've already discussed those and modified them

> somewhat thanks to the wonderful folks on the autism-mercury group.

>

> We are looking forward to any comments and are open to any and all

> suggestions as to other supplements to be taken, treatments to try

> etc.

>

>

> Thanks for your help.

[Guest guest]

Cyrstal,

Welcome to the list. I am sure you find the support you need here. There are

many wonderful people with great life experiences to share.

Mom to Elliot

14mths wcf

[Guest guest]

Dear sweet CRYSTAL. I am a grandmom to a grand lovely smart (am I bragging

yet)? Gal -ERIN who is about to be 18 this August. She is now 5'11 " She is a

cross country runner for her high school and is state ranked in NC. she also

was-is most valuable player for her high school Basketball team. girls were

2nd in state. Now . I can go on & on. NO--That is not normal............BUT

, by gollee.Just what IS normal.??

Your wee one will do fine...look how early your getting info & he has had

care. Meds---treatments -the whole world knows about CF now....When ERIN was

DX.....I had never heard of CF. I have 5 children & 10 grandkids. I taught

school for 20 years........have been retired another 20.soooooooooooooooo,

you think I would have come acrossed it before. BUT....Now. many know &

MUCH research is being done. by the way, My ERIN had a mecomium iliues at

birth and surgery at 2 days old. She is fine now. -only does Pulmozyme with

the vest ...and her enzymes with meals.....

Please give me your mailing address & I will send you some great stuff. It

will help you-----educate you in TODAY'S CF WORLD.......and it will be from

" DR FEEL GOOD " --Not Dr's Doom & Gloom.--I am sorry to brag so much about

ERIN, but------everytime I get a chance I do ---thanks for

asking:):):)ahaheheh

On the lists-yes , there are several & all great..........I am known as

GRANDMOMBEV

my phone number is toll free 1-888-307..call anytime for any reason -----or

NO REASON AT ALL:):)

You will get lots of responses. we love the chance to tell you that you

all will make it .Live each day as it comes. ASK QUESTIONS EACH DAY

>>>>>>especially at clinic...ask them hear too. These folks have been

there -----done that ..........

LOVE & HUGS,

grandmomBEV

Introduction

First let me say thank you to those who posted responses to my

question about support groups.

My name is Crystal and I just gave birth to my second child one day

before my 31st birthday. He is beautiful and has so many wonderful

facial expressions! Just yesterday he laughed and that made me laugh

and then he laughed again!

Adam was born 2/23, he completes our family as we have a two-year old

daughter (le -- sweat test last year was negative). He was

about

3 weeks early and had a couple of complications during the first

hours

of life; heart murmur, hypospadia (his lower part of his penis is

connected to his scrotum) and severe reflux. Our family doctor sent

us

to KCMO - The Children's Mercy Hospital where he spent the first

month

of his life. The murmur is normal for his age, the hypospadia will be

taken care of at the end of the summer when he's circumcised, and the

reflux -- well, that's an ordeal still at times, but he's on reglan,

prilosec (his poor stomach was as acidic as an adults which I've now

learned is a common problem for CF kids). Due to the multiple things

" wrong " they did genetic testing and so my husband asked them to test

him to see if is a carrier of CF. My husband is #4 of 4 children, the

oldest daughter died of CF in 1970 at age 10, my husband was only 3

and so his memories are few other than what his mother talks about.

I'm sure you can imagine that he did not take it well when they took

us in the conference room and informed us that Adam HAS CF.

Adam started the enzymes last Friday and we started the " clapping " to

get him used to it. They say his lungs sound fine right now.

I feel funny saying this but -- I NEED to hear from others that I/we

can make it through this. That he can be " normal " and like the other

kids as the CF clinic personnel keep telling us. I'm very interested

in hearing from others the great and wonderful things your kids have

done in life. I want to know that they aren't just telling us tales

to make us feel better about this situation we've been dealt.

Let me say thank you to any and all who comment on this now. I'm

grateful for ANY kind of support and information I can find. I like

to think of myself as a strong individual but Adam's life will surely

test that belief!

Crystal Holdeman

mom to Adam (age 2 months, w/cf) and le (age 2 1/2, w/o cf)

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

[Guest guest]

oops....I left out part of phone ## 1- toll free:):)

L&H,

GRDMB

Introduction

First let me say thank you to those who posted responses to my

question about support groups.

My name is Crystal and I just gave birth to my second child one day

before my 31st birthday. He is beautiful and has so many wonderful

facial expressions! Just yesterday he laughed and that made me laugh

and then he laughed again!

Adam was born 2/23, he completes our family as we have a two-year old

daughter (le -- sweat test last year was negative). He was

about

3 weeks early and had a couple of complications during the first

hours

of life; heart murmur, hypospadia (his lower part of his penis is

connected to his scrotum) and severe reflux. Our family doctor sent

us

to KCMO - The Children's Mercy Hospital where he spent the first

month

of his life. The murmur is normal for his age, the hypospadia will be

taken care of at the end of the summer when he's circumcised, and the

reflux -- well, that's an ordeal still at times, but he's on reglan,

prilosec (his poor stomach was as acidic as an adults which I've now

learned is a common problem for CF kids). Due to the multiple things

" wrong " they did genetic testing and so my husband asked them to test

him to see if is a carrier of CF. My husband is #4 of 4 children, the

oldest daughter died of CF in 1970 at age 10, my husband was only 3

and so his memories are few other than what his mother talks about.

I'm sure you can imagine that he did not take it well when they took

us in the conference room and informed us that Adam HAS CF.

Adam started the enzymes last Friday and we started the " clapping " to

get him used to it. They say his lungs sound fine right now.

I feel funny saying this but -- I NEED to hear from others that I/we

can make it through this. That he can be " normal " and like the other

kids as the CF clinic personnel keep telling us. I'm very interested

in hearing from others the great and wonderful things your kids have

done in life. I want to know that they aren't just telling us tales

to make us feel better about this situation we've been dealt.

Let me say thank you to any and all who comment on this now. I'm

grateful for ANY kind of support and information I can find. I like

to think of myself as a strong individual but Adam's life will surely

test that belief!

Crystal Holdeman

mom to Adam (age 2 months, w/cf) and le (age 2 1/2, w/o cf)

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

[Guest guest]

Hi Crystal,

Welcome here. There are so many inspirational stories that I have read

through this web-site. There is lots of info (hands on, practical) that has

served as a life-line when dealing with all that goes along with parenting a

child with cf. I have used this wonderful resource so often in the past

year, I can't imagine where I would be without it.

My daughter is 7 1/2. She was diagnosed at 9 months. She's in grade 2,

reading at a grade 4 level, running, playing and swimming and doing

gymnastics. She's a natural athlete! Given, that to this day I still can't

do a cartwheel, it thrills me to see her cartwheel her way to school!!! She

takes enzymes, we do 'clapping' (should be doing more), when she gets sick,

it tends to last longer than when my son (w/ocf) gets sick...often

antibiotics and ventolin come into play, visits to doctors are more common,

but I try to catch things before they get out of hand.

I remember it was really hard at the beginning. Take each day as it comes.

Just know that these cf people are really very

special/strong/empathetic/loving/amazing individuals. My life has been

enriched in many many ways.

All the best,

on 4/30/02 9:00 PM, illianisis at illianisis@... wrote:

> First let me say thank you to those who posted responses to my

> question about support groups.

>

> My name is Crystal and I just gave birth to my second child one day

> before my 31st birthday. He is beautiful and has so many wonderful

> facial expressions! Just yesterday he laughed and that made me laugh

> and then he laughed again!

>

> Adam was born 2/23, he completes our family as we have a two-year old

> daughter (le -- sweat test last year was negative). He was

> about

> 3 weeks early and had a couple of complications during the first

> hours

> of life; heart murmur, hypospadia (his lower part of his penis is

> connected to his scrotum) and severe reflux. Our family doctor sent

> us

> to KCMO - The Children's Mercy Hospital where he spent the first

> month

> of his life. The murmur is normal for his age, the hypospadia will be

> taken care of at the end of the summer when he's circumcised, and the

> reflux -- well, that's an ordeal still at times, but he's on reglan,

> prilosec (his poor stomach was as acidic as an adults which I've now

> learned is a common problem for CF kids). Due to the multiple things

> " wrong " they did genetic testing and so my husband asked them to test

> him to see if is a carrier of CF. My husband is #4 of 4 children, the

> oldest daughter died of CF in 1970 at age 10, my husband was only 3

> and so his memories are few other than what his mother talks about.

> I'm sure you can imagine that he did not take it well when they took

> us in the conference room and informed us that Adam HAS CF.

>

> Adam started the enzymes last Friday and we started the " clapping " to

> get him used to it. They say his lungs sound fine right now.

>

> I feel funny saying this but -- I NEED to hear from others that I/we

> can make it through this. That he can be " normal " and like the other

> kids as the CF clinic personnel keep telling us. I'm very interested

> in hearing from others the great and wonderful things your kids have

> done in life. I want to know that they aren't just telling us tales

> to make us feel better about this situation we've been dealt.

>

> Let me say thank you to any and all who comment on this now. I'm

> grateful for ANY kind of support and information I can find. I like

> to think of myself as a strong individual but Adam's life will surely

> test that belief!

>

> Crystal Holdeman

> mom to Adam (age 2 months, w/cf) and le (age 2 1/2, w/o cf)

>

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

>

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

>

>

>