hello

[Guest guest]

Leigh, I don't have any answers for you, but I just wanted to welcome another

Kentuckian on to the list!

Steph, (Louisville)

>>> leigh.gattozzi@... 04/13/00 12:09AM >>>

My name is Leigh and I have just signed onto the list. I live in

Lexingotn, KY. I have been to see Dr. Rutledge once (March 25 clinic) and

I am currently awaiting an answer to an appeal. I am ready to self pay,

but Dr. R. wanted me to fight a little more - so here I am - waiting. It's

excruciating to wait when I know there is a solution to a problem that I

have had all my life.

I guess I want to ask if anyone has reached or exceeded their goal weight?

I'm having the hardest time imagining that I could ever get there, because

I have failed so many times. I don't even know what it would be like to be

at a normal weight. I'm trying not to get my hopes up too much. I guess

it's hard to believe that this can work for me, even though I've seen the

proof.

Can anyone tell me about the hair loss? How much? How fast? When does

it stop? I know it's a small price to pay - I'm just trying to prepare

myself.

I also need to know exactly how I should go about harassing the insurance

company!!!! I sent my appeal last week and I will call soon to see if they

received it. Several people told me (at the clinic) that I have to be

relentless in pursuing my claim. How do I do that? What do I say to them?

How often do I call them? Can I call too much or too little?

I appreciate any help anyone can give me, and thanks for listening

(reading).

Leigh in KY

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[Guest guest]

Hi Tiffeny

Welcome to the group.

My method o getting my son to eat is offering a variety of dishes

(which can bedifficult with his food allergies) and hope that he

finds something he likes . I often offer the same dishes every other

nite because even though he may not have liked it on Monday,

WEdnesday is another day. I also find often that this is the case but

the following week he may decide that he wants nothing to do with

that particular food. So really it's all trial and error.

Ofcourse your girls are older so you can get feed back from on their

likes and dislikes, which may or may not help. I havent gotten to

that age yet. But hang in there.

Take Care,

Stein..........mom to CF (15 mo) & Tori wo/CF (4 yr)

> Hello! My name is Tiffeny and I am the mother of two beautiful

daughters. Whitney, who is 7

> and Paige, who is 6. Both of them have cf and are doing pretty

good. My yougest has a g-tube and has

> had it for the past 2 years. Her weight is up and down. Just when

you have a good weight report the next time

> you go back it is either down or staying the same. My oldest does

great. I am just wondering if anyone has

> any suggestions on how I can help my youngest to eat. I realize of

the morning she is not hungry because of being hooked up all night

long but she is so picky and just will have a bite here and there.

If anyone can suggest anything to me please feel

> free to email me at tiffeny@h... . your suggestions would be

greatly appreciated.

>

> thank,

> tiffeny, Mother of 2 wcf

>

>

>

[Guest guest]

I am sooo sorry that this has happened to . It never rains that it

doesn't pour. I hope he didn't hit his head too. I know the doc must have

checked him for all ,since it was a fall........Anyway, your doing such a

great job with your precious one. i know he will get well quickly. You have

a better day today and week ahead.

Glad you got the package. ENJOY.

LOVE & B

HUGS,

grandmomBEV

Hello

Torsten thank you for the card. Isabelle had a good birthday. Of course

balloons were more important than the presents.

Bev we received the package in the mail today thank you.

Well, after all the good news Tuesday has developed a cough. I hate

to think of what he was exposed to while we were at the hospital that day.

Then while I was out yesterday his school called and said he'd fallen from

the monkey bars and I needed to take him to have his arm x-rayed. He ended

up having a fractured wrist. Oh yippee. It had to be his left hand to since

he is left handed. Now to top things off as he went to bed tonight he was

complaining of a bad headache and his temp is 99.8. This is very unusual for

him unless he's sick. SO we gave him some advil and will see how he is in

the morning.

Hope everyone had a nice weekend.

Miranda,

mom to 6 and Isabelle 1 both w/cf

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

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]

Miranda,

OH I am so sorry to hear about but boys will be boys. I have heard of so

many kids breaking an arm on monkey bars I think they should ban them from

school. Deb

[Guest guest]

Hi Tammy. Welcome.

Now, I am not the most knowledgeable person on bronchoscopies, but how could

they use a bronchoscopy to diagnose CF? That confuses me. I don't understand

why they would take her off of enzymes based on that. Usually a bronchoscopy

could tell them the condition of her lungs and whether there is anything

bacterial growing in there.

Personally, I would have another sweat test done. If it were borderline or

negative, I would have a blood draw done to further confirm that she doesn't

have CF. I guess if it's positive, they are going to do the genetic

bloodwork anyway...so you might consider simply doing the genetic testing

and skipping the sweat test. The advantage of the sweat test is it's back in

less than a day, so you don't have to spend 2 weeks on edge.

Here's hoping it's not CF...but that if it is, you find out so you can get

her the proper treatment.

mama to 1 yo w/CF and 3 yo woCF

> From: ltpro911@...

> Reply-To: cfparents

> Date: Fri, 12 Oct 2001 12:13:08 EDT

> To: cfparents

> Subject: Hello

>

> I am Tammy and I have a 10 year old daughter who was tested positive with a

> sweat test a few years back at Poly clinic here in Pa. We then moved to NC

> where we took her to Chapel Hill. They did a bronchoscopy and said it was

> negative and took her off the enzymes. To this day she still is having

> several digestion problems and is sick constantly. She is now taking meds

> for epilepsy as well. She has to see ENT dr next week because there is much

> fluid build up in her left ear and it is painful for her. She has been thru

> a lot of tests and meds! I was wondering if I should follow up with the CF

> again and have her tested again. What do u think?

>

> Thanks.....

>

> Tammy

>

>

> 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 Tammy,

welcome to the list! Chapel Hill is one of the world leading CF centers, so I

think basically they know what they are doing. But from your description I can't

tell exactly, what they have done already to get a proper dx for your daughter.

Given that a genetic testing has been done already, I would ask for an NPD

(nasal potential difference) test. That's a non-invasive test, where different

fluids are gently flushed into one's nose and two electrodes measure the

potential difference. It's the most accurate test for CF available in the US at

the moment and only performed in a few clinics. I am quite sure that Chapel Hill

is able to do this test. Your daughter has to sit still for half an hour (that's

why it isn't done on infants) and you have the result immediately.

That's so frustrating if you don't know what's wrong with your child. I hope

you'll get a dx soon.

Peace

Torsten, dad of Fiona 4wcf

e-mail: aberdeen95@...

[Guest guest]

Thanks to all who answered my new subject. I will get Tara tested again and

will let you all know the results. I never knew there were groups like this

one and am so glad I found all of you! Nice to know I am not alone which I

have felt like this for so many years with all of the problems with my

daughter. She is going to the doctor at least 1 time a week. She has a

neuro, gastro, and now ENT doctors to see.

Thank you!!!!!

Tammy

[Guest guest]

Tammy,

It couldn't hurt anything because they are finding different CF genes in

people all of the time. Deb

[Guest guest]

Hi Tammy,

Welcome to the list. I certainly would insist on a sweat test or a blood

test to

check for cf mutations. I didn't know that a bronchoscopy was a valid test

for

cf? Also, make sure the clinic you take her to has a cf clinic. You need the

appropriate equipment to test properly for cf, at least that's my

understanding.

Good luck.

C.

Mommy to Mick and Alli, 20 mo twins wcf

Hello

I am Tammy and I have a 10 year old daughter who was tested positive with

a

sweat test a few years back at Poly clinic here in Pa. We then moved to

NC

where we took her to Chapel Hill. They did a bronchoscopy and said it was

negative and took her off the enzymes. To this day she still is having

several digestion problems and is sick constantly. She is now taking meds

for epilepsy as well. She has to see ENT dr next week because there is

much

fluid build up in her left ear and it is painful for her. She has been

thru

a lot of tests and meds! I was wondering if I should follow up with the

CF

again and have her tested again. What do u think?

Thanks.....

Tammy

[Guest guest]

YES!

S.

Hello

> I am Tammy and I have a 10 year old daughter who was tested positive with

a

> sweat test a few years back at Poly clinic here in Pa. We then moved to

NC

> where we took her to Chapel Hill. They did a bronchoscopy and said it was

> negative and took her off the enzymes. To this day she still is having

> several digestion problems and is sick constantly. She is now taking meds

> for epilepsy as well. She has to see ENT dr next week because there is

much

> fluid build up in her left ear and it is painful for her. She has been

thru

> a lot of tests and meds! I was wondering if I should follow up with the

CF

> again and have her tested again. What do u think?

>

> Thanks.....

>

> Tammy

>

>

> 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]

WELCOME .I know you will enjoy and also be able to share with us your

experiences and know how. You have a very busy life , I am sure.

LOVE & HUGS, grandmomBEv

(to a 17+ gal, ERIN w CF)

Hello

Hello everyone. My name is , married to Jim for 11 yrs. We live

in Aurora, CO. I am the mother of 4. 10, Nikki 8, Luke 5 and

3. Both of my boys have Autism and was born with CF. We

are one of the rare cases who found out during pregnancy that

was going to have CF. If there is anything good about this, it is

the fact that we were able to start giving her enzymes right away.

When she was 4 mos. she ended up in the hosp. because her sodium level

was dangerously low. Hence we learned about adding salt to her daily

diet. She has been doing fine since then. We do chest therapy and

she does nebs when she get that raspy sound. I look forward to

talking with all of you.

, wife to Jim

Mom to 10, Nikki 8, Luke 5 and 3

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 ,

thanks for joining the list! Almost the same happened to my daughter,

who was dx with CF at 4 months, because her sodium amd especially the

potassium levels dropped dangerously low too. We have supplemented

salt till then and Fiona is doing very well for 4 1/2 years now. We

live in Germany, but I've been in Mile High City once and liked it

there, especially the mall with the convenient shuttle bus.

You have your hands full with four kids, three of them having special

needs, I guess.

Peace

Torsten, dad of Fiona 4wcf

> Hello everyone. My name is , married to Jim for 11 yrs. We

live

> in Aurora, CO. I am the mother of 4. 10, Nikki 8, Luke 5

and

> 3. Both of my boys have Autism and was born with CF.

We

> are one of the rare cases who found out during pregnancy that

> was going to have CF. If there is anything good about this, it is

> the fact that we were able to start giving her enzymes right away.

> When she was 4 mos. she ended up in the hosp. because her sodium

level

> was dangerously low. Hence we learned about adding salt to her

daily

> diet. She has been doing fine since then. We do chest therapy and

> she does nebs when she get that raspy sound. I look forward to

> talking with all of you.

>

> , wife to Jim

> Mom to 10, Nikki 8, Luke 5 and 3

[Guest guest]

Torsten,

Where in Germany do you live? When my husband was in the Army, we

were in Augsburg from Aug. '90 to '92. We enjoyed our time there.

, wife to Jim

Mom 10wocf, Nikki 8wocf, Luke 5wocf and 3wcf

> > Hello everyone. My name is , married to Jim for 11 yrs. We

> live

> > in Aurora, CO. I am the mother of 4. 10, Nikki 8, Luke 5

> and

> > 3. Both of my boys have Autism and was born with CF.

> We

> > are one of the rare cases who found out during pregnancy that

> > was going to have CF. If there is anything good about this, it is

> > the fact that we were able to start giving her enzymes right away.

> > When she was 4 mos. she ended up in the hosp. because her sodium

> level

> > was dangerously low. Hence we learned about adding salt to her

> daily

> > diet. She has been doing fine since then. We do chest therapy

and

> > she does nebs when she get that raspy sound. I look forward to

> > talking with all of you.

> >

> > , wife to Jim

> > Mom to 10, Nikki 8, Luke 5 and 3

[Guest guest]

Hi ,

Glad you found the list!

Jane

[Guest guest]

Welcome to the list ! I am in Arkansas and have two girls, Mackenzie 4.5

w/cf and Peyton 1 w/o cf.

Christy

[Guest guest]

Welcome Diane & Jim..

You certainly have your hands full..

How are the children doing healthy/happy wise?

Welcome to the group:)

Stein...mom to CF (20 mo) & Tori wo/CF in Mass.

Hello

Hello everyone. My name is , married to Jim for 11 yrs. We live

in Aurora, CO. I am the mother of 4. 10, Nikki 8, Luke 5 and

3. Both of my boys have Autism and was born with CF. We

are one of the rare cases who found out during pregnancy that

was going to have CF. If there is anything good about this, it is

the fact that we were able to start giving her enzymes right away.

When she was 4 mos. she ended up in the hosp. because her sodium level

was dangerously low. Hence we learned about adding salt to her daily

diet. She has been doing fine since then. We do chest therapy and

she does nebs when she get that raspy sound. I look forward to

talking with all of you.

, wife to Jim

Mom to 10, Nikki 8, Luke 5 and 3

[Guest guest]

Jacquline,

Some of the symptoms are greasy orange looking stools and very fowl smelling

stools. A pop belly is another also if you lick her skin it has a salt like

taste to them. Hope this helps. Deb A

[Guest guest]

,

I think that if the Doctor has said that is the next step then I would insist

that she take that step now. Hopefully, you will be able to find a solution

soon. Is there any other reason that mentioned cf????

Mom to Elliot

11mths wcf

[Guest guest]

,

I would call your Doctor tomorrow and ask what you are waiting for?? Like

others have said before...it most likely is something else. However, the

sooner you rule this out the better you will feel.

Mom to Elliot

11mths wcf

[Guest guest]

How salty is salty? Doesn't everyone's skin taste a little like salt?

no as far as I know there is no other reason but you know how

doctors are they arn't exactly straight forward most og f the time.

Jacquline

> ,

>

> I think that if the Doctor has said that is the next step then I

would insist

> that she take that step now. Hopefully, you will be able to find a

solution

> soon. Is there any other reason that mentioned cf????

>

>

>

> Mom to Elliot

> 11mths wcf

>

>

>

[Guest guest]

Hi Jacki,

welcome to the list. Let me start by stating that your doc is a jerk. She

can't mention a disease like CF and then let you wait weeks or months for a

test. Either she has reasons to think that your daughter has CF (failure to

thrive is one reason), but then a test should be done as soon as possible.

Or she just wanted to show how educated she is, that she knows something

like CF. But then she better had kept her mouth shut.

Now you sit there with tons of questions and I am afraid we can't answer

many of them. CF occurs in one of 2,500 caucasian babies, so the odds are

with you that your daughter doesn't have CF. But then you have joined a

group of 400 parents, who can tell you how our kids have beaten the odds

:-((

A sweat test for CF is done within a few minutes and the result should be

available within an hour (at least that was the case when my daughter was

tested at the age of four months and it even wasn't in a special CF center).

I paid 25 bucks for the test (but we live in Germany, don't know about the

costs in the US).

Here is hoping that you'll find out soon what's wrong with your baby and

that it is nothing serious.

Peace

Torsten, dad of Fiona 4wcf

e-mail: torstenkrafft@...

[Guest guest]

Salty, as in a salty aftertaste, especially after licking the forehead ...

as in saltier than when you lick your own skin. I licked and kissed my kids

a lot while waiting for my son's diagnosis 15 years ago. My older son was

fine but there was a kind of salty aftertaste in the back of my throat after

licking the forehead of my son who had CF.

Re: hello

> How salty is salty? Doesn't everyone's skin taste a little like salt?

> no as far as I know there is no other reason but you know how

> doctors are they arn't exactly straight forward most og f the time.

> Jacquline

>

> > ,

[Guest guest]

--hello my name is ,my daughter was diagnosed with cf when she

was 6years, she had all the symptoms, like a large appetite with

little weight gain, a cough that wouldn't go away of course her

doctor just thought we were over protective parents, and when we told

him about her having foul smelling stools, and that my sister-inlaw

babysat for 2cf children noticed she had the same foul smelling

stools,we were finally referred to riely hospital for a sweat test.

When she was diagnosed she was 6years old and weighed only 36pounds,

she has a website it is www.angelfire.com/in2/stacycf/home.html

- In cfparents@y..., " jacki_rl " wrote:

> Hi, I found your site while I was searching for information on cf.

I

> was hoping that maybe some of you could help me out. Here is my

> situation: I have a seven month old daughter. She wa doing

> beautifully, gaining weight and growing just like she should.

untill

> three months ago. She has only gained 8 oz in the last three

months.

> She has no appetite at all she only nurses. She does nurse alot.

The

> doctor said that it could be that she just needs more than the milk

> gives her. She ran some preliminary blood tests and they came back

> fine. She wants to send us to an occupational therapist to " teach "

> her how to eat. If she does not gain weight she wants to test for

> cf. here's my problem, obviously I'm going crazy. She springs this

> on me and then tells me to just wait and see. I have checked all

the

> websites for information but it's all so clinical and really does

> not help me much. I was hoping you could give me a little more

> usable information. mainly about symptons ect. I am sorry for this

> being so long. and thank you in advance for your help.

> Jacquline

[Guest guest]

Hi Jacquline,

My son is 7 months old also & the symptoms of CF he shows is a cough,

terrible smelling and frequent poo's, and he tastes extremely salty

when you kiss him.

Like everyone advises, kiss her forehead and see if she tastes salty.

This may be some kind of indication whether or not she has CF.

Does she cough much and what are her poo's like?

Kirsty - from Australia with 7 months wcf.

> > Hi, I found your site while I was searching for information on

cf.

> I

> > was hoping that maybe some of you could help me out. Here is my

> > situation: I have a seven month old daughter. She wa doing

> > beautifully, gaining weight and growing just like she should.

> untill

> > three months ago. She has only gained 8 oz in the last three

> months.

> > She has no appetite at all she only nurses. She does nurse alot.

> The

> > doctor said that it could be that she just needs more than the

milk

> > gives her. She ran some preliminary blood tests and they came

back

> > fine. She wants to send us to an occupational therapist

to " teach "

> > her how to eat. If she does not gain weight she wants to test for

> > cf. here's my problem, obviously I'm going crazy. She springs

this

> > on me and then tells me to just wait and see. I have checked all

> the

> > websites for information but it's all so clinical and really does

> > not help me much. I was hoping you could give me a little more

> > usable information. mainly about symptons ect. I am sorry for

this

> > being so long. and thank you in advance for your help.

> > Jacquline

[Guest guest]

Jacquline,

I'm just writing to let you know that I know how you feel about not knowing.

My daughter Abby has had problems since birth. We are living in Germany

right now (my husband is in the military) and she was tested for CF in

December at a German hospital. The test came back inconclusive and now I

will have to wait till we get back to the states for her to get another test

for CF because the military can't do the test and they won't refer her back

out to the Germans again. Everyone else, we're still waiting to hear back

from the military on our compassionate. I can't believe how long it's

taking. We started all of this back in December, it's almost February

already and we don't know anything.

Karrie mother to Chasity age 6 1/2, normal and healthy and Abby age 4 1/2

microcephaly, severe developmental and physical delays, epilepsy,

pachygyria, and possible Cystic Fibrosis. The list is growing.

www.clik.to/abigail

hello

> Hi, I found your site while I was searching for information on cf. I

> was hoping that maybe some of you could help me out. Here is my

> situation: I have a seven month old daughter. She wa doing

> beautifully, gaining weight and growing just like she should. untill

> three months ago. She has only gained 8 oz in the last three months.

> She has no appetite at all she only nurses. She does nurse alot. The

> doctor said that it could be that she just needs more than the milk

> gives her. She ran some preliminary blood tests and they came back

> fine. She wants to send us to an occupational therapist to " teach "

> her how to eat. If she does not gain weight she wants to test for

> cf. here's my problem, obviously I'm going crazy. She springs this

> on me and then tells me to just wait and see. I have checked all the

> websites for information but it's all so clinical and really does

> not help me much. I was hoping you could give me a little more

> usable information. mainly about symptons ect. I am sorry for this

> being so long. and thank you in advance for your help.

> Jacquline

>

>

> 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.

>

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

>

>

>