Re: introduction and a question

[Guest guest]

I use it as a time to educate the public to what cf is and does(condensed

version) something like.Yes she does have a tube in her nose it helps her to

eat and grow cf makes the lungs and digestive system not work right . Like

you my 4 year old had an ng tube for 5 months she was off for 2 months and we

put in her g-tube ,fundoplication,and infusaport(permanent IV site) all in a

22 day hospital stay at 8 months old.Rebekah was dx at birth and a few weeks

later dx with severe reflux(so bad the doctors thought I wasn't feeding her

they had a nurse for 8 hours a day to try to help her gain weight the nurse

cleaned up the floor a lot and helped me to stand up for my daughter!) I hope

the list helps you .BeckyB

[Guest guest]

Hello. I am new to this list. I have been reading for a few days and

hope that this list will be a support for us. It certainly helps to know

that others are dealing with some of the same situations. My daughter

will be 16 months old in just a few days. She was diagnosed with cf in

April this year after being sick for months. She was losing a lot of

weight (went down to 13 pounds) and had back to back pneumonias. The

diagnosis was quite a shock. Then just a week later we were told she had

food allergies and couldn't eat much of anything (no milk or dairy,

wheat, eggs, soy, peanuts or fish). Just try to get a child to gain

weight on fruit, vegetables and rice! They started her on tube feedings

right away, and after a couple of weeks on her new diet, she did stop

throwing up and started showing a small interest in eating again (she had

even seen a psychiatrist for food aversion).We were home for 3 weeks when

she landed in the hospital again with a collapsed lung. She ended up

having a brochoscopy towards the end of her stay which showed there was

some infection and some bleeding in her lung (we still don't know why she

bled). We had 3 weeks of home IVs and 1 1/2 weeks of an oral antibiotic.

After just 2 weeks of no antibiotics (the first time since February she

hasn't been on some kind or another) she has another lung infection.

More antibiotics. And her middle lobe is still collapsed. The drs. are

planning on doing another bronchoscopy in the next few weeks. She will

have an endoscopy done at the same time to see if her esophagus is

healing from her allergies, as well as have a g-tube put in. It is

pretty unbelievable that we have only known about the cf for 3 months.

It feels like forever.

Enough of an introduction...now a question. How do you (anyone on the

list) handle questions from strangers about what is wrong with your

child? Mallory has an ng-tube so people stare and can tell right away

something is wrong. While she is too little to understand their

questions right now, I'm sure this will be an issue later. I don't want

to give her the impression that cf is something to be ashamed of and that

we don't talk about it. However, I also want there to be some

boundaries. It is not every stranger's business. I am torn between the

two extremes...sometimes answering, sometimes saying something, but not

disclosing all. I was just wondering what other people do or have done.

I apologize for the length of this message. They won't all be so long.

Thanks

Lee - mom to Mallory 15 months

[Guest guest]

When people ask us questions we just say that Patti is chronically ill. If

they ask with what then we say cystic fibrosis. After that they usually

either leave or murmur some platitude and then leave. Of course this is a

personal decision, telling others I mean, but I have just found that being

blunt and direct with as little personal info. as possible is the quickest

way to get people to quit staring and leave. Of course sometimes I want to

say ugly things, but you know, I think most people are genuinely

compassionate and a little info. doesn't hurt.

I hope things go well for you and your daughter.

Dawn, mom of 4 kids,5, 4, 2, and 7 months, the youngest with cf

Re: introduction and a question

> Hello. I am new to this list. I have been reading for a few days and

> hope that this list will be a support for us. It certainly helps to know

> that others are dealing with some of the same situations. My daughter

> will be 16 months old in just a few days. She was diagnosed with cf in

> April this year after being sick for months. She was losing a lot of

> weight (went down to 13 pounds) and had back to back pneumonias. The

> diagnosis was quite a shock. Then just a week later we were told she had

> food allergies and couldn't eat much of anything (no milk or dairy,

> wheat, eggs, soy, peanuts or fish). Just try to get a child to gain

> weight on fruit, vegetables and rice! They started her on tube feedings

> right away, and after a couple of weeks on her new diet, she did stop

> throwing up and started showing a small interest in eating again (she had

> even seen a psychiatrist for food aversion).We were home for 3 weeks when

> she landed in the hospital again with a collapsed lung. She ended up

> having a brochoscopy towards the end of her stay which showed there was

> some infection and some bleeding in her lung (we still don't know why she

> bled). We had 3 weeks of home IVs and 1 1/2 weeks of an oral antibiotic.

> After just 2 weeks of no antibiotics (the first time since February she

> hasn't been on some kind or another) she has another lung infection.

> More antibiotics. And her middle lobe is still collapsed. The drs. are

> planning on doing another bronchoscopy in the next few weeks. She will

> have an endoscopy done at the same time to see if her esophagus is

> healing from her allergies, as well as have a g-tube put in. It is

> pretty unbelievable that we have only known about the cf for 3 months.

> It feels like forever.

> Enough of an introduction...now a question. How do you (anyone on the

> list) handle questions from strangers about what is wrong with your

> child? Mallory has an ng-tube so people stare and can tell right away

> something is wrong. While she is too little to understand their

> questions right now, I'm sure this will be an issue later. I don't want

> to give her the impression that cf is something to be ashamed of and that

> we don't talk about it. However, I also want there to be some

> boundaries. It is not every stranger's business. I am torn between the

> two extremes...sometimes answering, sometimes saying something, but not

> disclosing all. I was just wondering what other people do or have done.

> I apologize for the length of this message. They won't all be so long.

> Thanks

> Lee - mom to Mallory 15 months

>

>

> 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 there...my daughter is 11 and was diagnosed at 5yrs

of age..i feel for you deeply as i've been lucky for

my daughter so we haven't had to have tubes in her for

feeding or anything..but when people look at her they

see a normal child..maybe a little small so i don't

get those questions yet..just if people come over and

see her take all this medication..i am always happy to

educate people, it makes me happy to get the word

out..for all the illnesses in the world i just don't

understand why cf is so unknown..spread the word and

educate...keep strong and take care

jen 11yr daughter w/cf 10yr son w/o cf

--- H Langill wrote:

<HR>

<html><body>

<tt>

Hello. & nbsp; I am new to this list. I have been

reading for a few days and<BR>

hope that this list will be a support for us. & nbsp; It

certainly helps to know<BR>

that others are dealing with some of the same

situations. & nbsp; My daughter<BR>

will be 16 months old in just a few days. & nbsp; She

was diagnosed with cf in<BR>

April this year after being sick for months. & nbsp; She

was losing a lot of<BR>

weight (went down to 13 pounds) and had back to back

pneumonias. & nbsp; The<BR>

diagnosis was quite a shock. & nbsp; Then just a week

later we were told she had<BR>

food allergies and couldn't eat much of anything (no

milk or dairy,<BR>

wheat, eggs, soy, peanuts or fish). & nbsp; Just try to

get a child to gain<BR>

weight on fruit, vegetables and rice! & nbsp; They

started her on tube feedings<BR>

right away, and after a couple of weeks on her new

diet, she did stop<BR>

throwing up and started showing a small interest in

eating again (she had<BR>

even seen a psychiatrist for food aversion).We were

home for 3 weeks when<BR>

she landed in the hospital again with a collapsed

lung. & nbsp; She ended up<BR>

having a brochoscopy towards the end of her stay which

showed there was<BR>

some infection and some bleeding in her lung (we still

don't know why she<BR>

bled). & nbsp; We had 3 weeks of home IVs and 1 1/2

weeks of an oral antibiotic.<BR>

After just 2 weeks of no antibiotics (the first & nbsp;

time since February she<BR>

hasn't been on some kind or another) she has another

lung infection. <BR>

More antibiotics. & nbsp; And her middle lobe is still

collapsed. & nbsp; The drs. are<BR>

planning on doing another bronchoscopy in the next few

weeks. & nbsp; She will<BR>

have an endoscopy done at the same time to see if her

esophagus is<BR>

healing from her allergies, as well as have a g-tube

put in. & nbsp; It is<BR>

pretty unbelievable that we have only known about the

cf for 3 months. <BR>

It feels like forever.<BR>

Enough of an introduction...now a question. & nbsp; How

do you (anyone on the<BR>

list) handle questions from strangers about what is

wrong with your<BR>

child? & nbsp; Mallory has an ng-tube so people stare

and can tell right away<BR>

something is wrong. & nbsp; While she is too little to

understand their<BR>

questions right now, I'm sure this will be an issue

later. & nbsp; I don't want<BR>

to give her the impression that cf is something to be

ashamed of and that<BR>

we don't talk about it. & nbsp; However, I also want

there to be some<BR>

boundaries. & nbsp; It is not every stranger's

business. & nbsp; I am torn between the<BR>

two extremes...sometimes answering, sometimes saying

something, but not<BR>

disclosing all. & nbsp; I was just wondering what other

people do or have done.<BR>

I apologize for the length of this message. & nbsp; They

won't all be so long. <BR>

Thanks<BR>

Lee - mom to Mallory 15 months<BR>

</tt>

<br>

<tt>

<BR>

PLEASE do not post religious emails to the list.<BR>

<BR>

<BR>

-------------------------------------------<BR>

<BR>

<BR>

The opinions and information exchanged on this list

should <BR>

IN NO WAY <BR>

be construed as medical advice. <BR>

<BR>

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY

MEDICATIONS OR TREATMENTS.<BR>

<BR>

--------------------------------------------------<BR>

</tt>

<br>

<br>

<tt>

[Guest guest]

Hi Lee and welcome to the list. There sure seems to be a lot of new people

recently. I don't know how I will ever keep track of you all! It sounds

like you and Mallory have had a rough few months. Hopefully now that she is

diagnosed and on medications and treatments and stuff she will get into a

routine and get to feeling better and putting on weight. My daughter never

needed a ng-tube and has always looked healthy, so I can't really help with

your question. I am sure someone else who has had them can help

Welcome again and best wishes for your daughters health.

love,

M from Orange CA

mom to Nick age 19 nocf

and age 17 wcf

[Guest guest]

Lee,

Just wanted to welcome you, and encourage you to hang in there. You

are in my thoughts.

I am sorry to hear that your little one has been so sick...our oldest,

she will be 8 on the 30th, she was diagnosed at 18 mo. and she was very

sick too. She was in and out of the hospital all the time with lung

problems, dehydration, and she was behind developmentally too. Her

weight gain was poor and she had a very bad distended tummy. Let me

encourage you tho, that she is now caught up for her age, and she has

not been in the hospital for 5 years or on IV meds. Her weight gain is

only in the 25% and same with her height, and she battles sinus

infections a lot, but other than that, she is doing great right now.

This has been the case for many CF children...so try to hang in there,

okay:)

As far as telling people...our daughter doesn't have a ng tube, or

anything like that, but we are very open about what she has. Before she

was diagnosed, we had never heard of CF before, and so there are

obviously others out there who don't know about it either...so we tell

people and help them become informed about the disease we knew nothing

about. Some may disagree tho, so maybe you will get better advice than

that from others.

I wish you and your family well:) and I am glad you have joined...lots

of people to learn from and find support from here on the list.

-mom of 4, one with CF, and #5 due July 17th, with poss. CF

[Guest guest]

Lee,

Welcome to the board! I am just new here myself. I have two with CF and just

found out 2 years ago and how I remember what a shock it was because we never

new what the disease was and didn't know it was even in the family. My girls

don't have a g-tube so I really can't answer you question about what to tell

people all I know is I try to tell everyone so people know more about this

disease and hopefully they will give money to help us find a cure. I also

don't want my daughters to be embarrass about having this disease I want them

to be able to talk about it and not keep it a secret. Hope this helped Deb

[Guest guest]

I totally agree. Deb