Re: new to list

[Guest guest]

In a message dated 1/19/2003 2:02:59 PM Central Standard Time,

tntnsrno@... writes:

>

> I am new to the list. My daughter, Savannah, is 10 months old. She

> was diagonosed with CF at 3 months of age. She has been doing very

> well and has not been in the hospital since her diagnosis. We went to

> see the doc a few days ago due to a new cough and they did chest x

> rays, etc. and determined she has bronchitis. But her weight is up,

> we have finally reached 15lbs!!!

> The main reason I joined this group is to find out from other parents

> how they juggle the demands of CF (meds, doctor appointments,

> insurance issues, emotional situations), work, daycare/nannies,

> family life, etc.

> We have decided for our daughter that one of the best approaches we

> can take is to try and give her a normal life. Of course we make her

> take the meds and do her CPT. But we do place her in a private

> daycare ( less than a mile from our office )so she can be exposed to

> other kids, etc. We seem more easy going than a lot of other parents

> we know that have kids with CF. Anyway, I am curios how other

> families seem to juggle everything effectivly...

Hi I have three girls two with CF. I am not sure if their is an efficient way

to take care of a kid with CF you just go day to day and hope and pray you

are doing the right thing. Yes, there will be many struggles but this group

has been a GREAT way to help you through them. Because there is always

someone that has been through what you are going through and they can help

make the process a little easier. At least guide you through it. Glad you are

here and hope to get to know you more. Where do you live? We are in the

United Stated in Iowa. Deb A

[Guest guest]

Hi Welcome, My daughter Traci is 8 years old. She has been in daycare since

she was 18 months old. She never got any sicker than any other child at

daycare. She goes in the hospital every 6-9 months for a tune-up. She is on

Pulmozyme, Albuterol, and TOBI(28days). She uses a Vest or Acapella(Flutter)

2 times a day. She is now in 2nd grade. She makes straight A's and loves to

read. The first 9 months of her life were rough until we got the digestion

straightened out. She had a g-tube from 7 months until she was 5. She has an

average appetite. She was 55lbs and looks great. This group will answer any

question and even send you searching. Traci's doctor is impressed with how

informed I stay. Thanks to the group! Lynette

[Guest guest]

How do your doctors determine if Traci needs a tune up?

> Hi Welcome, My daughter Traci is 8 years old. She has been in

daycare since

> she was 18 months old. She never got any sicker than any other

child at

> daycare. She goes in the hospital every 6-9 months for a tune-up.

She is on

> Pulmozyme, Albuterol, and TOBI(28days). She uses a Vest or Acapella

(Flutter)

> 2 times a day. She is now in 2nd grade. She makes straight A's and

loves to

> read. The first 9 months of her life were rough until we got the

digestion

> straightened out. She had a g-tube from 7 months until she was 5.

She has an

> average appetite. She was 55lbs and looks great. This group will

answer any

> question and even send you searching. Traci's doctor is impressed

with how

> informed I stay. Thanks to the group! Lynette

>

>

>

[Guest guest]

It is really just a good guess. Her appetite goes down, and she gets

crackles, but really it is just done when the team gets the feeling. When she

wa 3-4 years old we would get the " feeling " and then say to ourselves, should

we do IVs or not, not and in 2-3 weeks she would be in the hospital with low

PFTs, crackles etc. So know we generally put her in when it's been 6-9

months. Her energy level, and appetite go right up. She has never been real

sick, or had pnumonia. I feel we have stayed ahead of CF instead of following

it!

Lynette

Mom to Traci 7w/cf and 11w/ocf

[Guest guest]

It is really just a good guess. Her appetite goes down, and she gets

crackles, but really it is just done when the team gets the feeling. When she

wa 3-4 years old we would get the " feeling " and then say to ourselves, should

we do IVs or not, not and in 2-3 weeks she would be in the hospital with low

PFTs, crackles etc. So know we generally put her in when it's been 6-9

months. Her energy level, and appetite go right up. She has never been real

sick, or had pnumonia. I feel we have stayed ahead of CF instead of following

it!

Lynette

Mom to Traci 7w/cf and 11w/ocf

[Guest guest]

WELCOME to this great list. I don't have any answers for you but I am sure

you will get some ideas from some here. I hold you in special thoughts that

some improvement will come soon

LOVE & HUGS, grandmoMBEV

New to List

Hi all! My name is and I am mother to Bridget Rose, age 6.5, who

was diagnosed with CF on her second day of life! Bridget is totally

tube fed, but will taste foods - gags badly sometimes, though. After

a swallow study, it was determined that Bridget was o.k. swallow-wise,

but she had oral aversions that are much, much better now. Any ideas

for helping her to eat by mouth? Thanks!

in Nebraska

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

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 ,

Welcome to the list. My daughter Emma is 2 1/2 years old and went

through a three week feeding treatment program at Children's Hospital of

Philadelphia back in June of last year due to severe feeding problems and

almost total refusal to drink.

What the feeding treatment entailed was setting up a process which

encourages eating and drinking. First, we recite the rules. The rules

being as follows: " If you take a bite, you get to play. If you don't

take a bite, I am going to feed you. If you still don't take a bite,

then you don't get to play " . She is then given a toy to play with.

After twenty seconds of play, the toy is taken away and I place a

spoonful of food in front of her (on a plate) and say the phrase, " take a

bite " . She is then expected to pick up the spoon and place it in her

mouth. If she doesn't do this within 5 to 10 seconds, I grab her hand

and gently place it on the spoon (this is called hand over hand). If she

still doesn't put it in her mouth, I gently help guide it to her mouth.

If this still doesn't work, then I take the spoon and feed her directly.

If this final try doesn't work, I turn away from her and ignore her, she

is not given a toy. I think I am supposed to ignore her for 30 seconds

to a minute (something like that). I then try again. Once she takes the

food (which at this point she generally does), I praise her and give her

back the toy. For the spoonfuls that have enzymes on them, I just spoon

feed her these directly.

We use this same process for drinking. The cup she is given has a spout

but it doesn't have a stopper which prevents free-flow of the drink.

This is so she is not required to suck very hard to get the drink out.

When she tilts up the cup, the drink just naturally flows out. When we

give her the cup, I say the phase, " take a sip " rather than take a bite.

We've had lots of problems with her throwing the cup. When this occurs,

we clean it up, ignore the bad behavior (ie make no comments or even

sigh), we ignore her for 30 to 60 seconds and then try again. This same

approach is used when she vomits. We just calmly clean it up and go on.

All negative behavior is totally ignored. The idea being that bad

behavior is a quest for attention. If you react to it in any way and

give it attention, you are validating that behavior and giving them

reason to repeat it. This philosophy hasn't entirely worked for us as

Emma continues to vomit frequently but then again no one has ever

conclusively if her vomiting is behavior related or totally medical.

When she is given the last bite or sip, I tell her " This is the last

bite " . After that phase is said, I don't ever give her more food or

drink.

That is a quick synopsis of what we do. I am leaving pieces out but this

is the general idea. I don't know if this helps. It may be hard to

understand unless you see it in action yourself but basically the idea is

to provide positive feedback and decrease the negative. Good Luck. If

you want any more information, let me know. My thoughts are with you.

- mom to Emma 2 1/2 years old w/cf and reflux and Isabelle 4 1/2

years wo/cf

On Wed, 05 Mar 2003 01:02:37 -0000 " g8kidz "

writes:

> Hi all! My name is and I am mother to Bridget Rose, age 6.5,

> who

> was diagnosed with CF on her second day of life! Bridget is totally

> tube fed, but will taste foods - gags badly sometimes, though.

> After

> a swallow study, it was determined that Bridget was o.k.

> swallow-wise,

> but she had oral aversions that are much, much better now. Any ideas

> for helping her to eat by mouth? Thanks!

>

> in Nebraska

>

>

>

>

[Guest guest]

Hi Jenni,

Welcome to the group. First, where are you located? The foremost

expert on RSS is Dr Harbison located in NYC.

Second, there are some other people on the list whose children have

had " stomach migraines. " Hopefully one will respond to you.

Third, there is medication that can be taken to increase the appetite

(periactin). Many RSS children need an excessive amount of calories

to grow.

Fourth, many RSS children take growth hormones (GH). My son started

them in January.

If you are interested in GH, you need to start now, before your

daughter enters puberty. Many RSS children enter puberty at a young

age.

Feel free to post or email me directly (you can do that by clicking

on my email address just to the right of my name).

Judith, Steve, (RSS) and (non RSS) 4 year old twins

[Guest guest]

Hi , I have beent aking all my regular vitamins AND the penatal. I

also got myself on 800 mcg's of folic acid and it is recommended to start that

before conception if possible because it can help to prevent birth defects. A

pregnancy after WLS is not much different that before, just eat well and take

those vitamins and keep all your OB appts. I would NOT take the glucose

tolerance test to test for diabetes after pregnancy though because of the WLS

but you

can ask your doc for a fasting sugar test that you take blood while fasting,

go eat and have it rechecked in 2 hours after the meal has ended. That is how

my OB did it. good Luck,

God Bless,

Robin, NorthEastern, NY

Age- 41

EDD- July 27th, 2004

IT'S A BOY!!!!!!

Mommy to:

&

(twin boys 8 years),

Madison, daughter, 5 years and

Wife to Pup 15 years (October 31, 1988)

Gastric Bypass Surgery-

October 18th 2002

Start-378, current- 246(pregnant)

goal 170 after baby

It's a BOY!!!!!

Emerson Roger

[Guest guest]

welcome ! This is a very fast moving list and if you dont get

the reply you are searching for, please re-post it with a sterner

title. lol

Sometimes (oftentimes) with over 1,600 members, this list has numerous

posts a day and some get overlooked.

If you have specific questions after reading our FAQ's and Links area,

please feel free to ask them. I think many of the original members of

the group, probably have their WLS, pregnancy and birth stories saved

for future questions. lol

Please browse and skim over the posts that have the topic to which you

have a question and see if your question may have been answered

anytime in the recent past. If not, just ask away!

Sheila, Moderator

[Guest guest]

>

> Hi! I am new to this list and fresh back from the DAN conference in

> DC. I have a 4 1/2 year old ASD son Joey who has been gfcf for about

> six months, but the science of this diet makes a lot more sense to us.

> I'm finishing up my spring semester of nursing school, so right now

> I'm just going to research this and get ready to implement it in about

> a month.

>

> Look forward to learning more and getting some assistance from those

> who have experience. My son is higher functioning, but right now his

> scripting is pretty intense. He seems to be at a plateau and I think

> this diet is what we need to get beyond it.

>

Welcome & Son,

We will give you lots of support here.

Carol F.

SCD 6 years, celiac