Re: new to group, from Reading, Pa

[Guest guest]

Hello

I too have a daughter with cf who is 7 years old and was diagnosed by

meconium ileus. She also has had about 6 admissions in her life. The road

we travel is a long and hard one but along the way you will meet some lovely

people and hopefully at the end there awaits a rainbow.

Cheers

Cathy (Mum to 7yowcf)

new to group, from Reading, Pa

> I have a six year old daughter who was diagnosed with cf at one

> month of age. I'm new to this board and was interested in what

> other parents are dealing with on a daily basis. I myself have been

> dealing with anxiety and depression since my daughter turned one

> year old. This disease has it's ups and downs, and I think that

> after six years of dealing with this, Ive come to realize that

> talking about things is therapy for me. So that's why I'm here. To

> receive support and to help others who may be going through some of

> the same things. My daughter's daily routine includes the

> following: Therapy 2x's a day - Zopenex

> Pulmozyme

> (she has the vest) TOBI (every other month)

>

>

> Actigal

> ADEK

> Advair

> Rhinocort

> Pancrecarb (she just started swallowing her enzymes!!!)

> Clarinex

> Miralax

>

> She has been hospitalized 6 times. At birth for meconium illius

> surgery. At ten months for psudomonus (iv's), 3 years for staph and

> psudomonus infection, 4 years old she had a mucus plug in her

> intestines and blocked her whole digestive system where she needed

> a " draino " type medicine to unplug her system. 5 years old for

> psudomonus and staph and just this past March for the same two

> bacteria.

>

> This is her basic history, just to give you some backround. If

> anyone out there would like to chat, let me know! My prayers are

> with all of you and your families.

>

>

>

>

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

> 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! What clinic do you go to? We are from the Phila burbs and go to

Children's Hospital of Philadelphia. our daughter has been well for the

past 2 & 1/2 years, but she was hospitalized 5 times before she turned 2, once

for g-tube placement & nissan fundoplication. She is on Zantac, creon 5,

Albuterol, cromolyn sodium, Pulmozyme, Tobi, Bactrum, AEK's extra K, VioKase

(tube feed enzyme) and will be going back on Reglan today or tomorrow. Her

main problem in the last few years has been weight/eating related rather than

lung issues.

Mom of , Queen of the Universe

Feel free to visit our site http://groups.msn.com/TeamJane

new to group, from Reading, Pa

I have a six year old daughter who was diagnosed with cf at one

month of age. I'm new to this board and was interested in what

other parents are dealing with on a daily basis. I myself have been

dealing with anxiety and depression since my daughter turned one

year old. This disease has it's ups and downs, and I think that

after six years of dealing with this, Ive come to realize that

talking about things is therapy for me. So that's why I'm here. To

receive support and to help others who may be going through some of

the same things. My daughter's daily routine includes the

following: Therapy 2x's a day - Zopenex

Pulmozyme

(she has the vest) TOBI (every other month)

Actigal

ADEK

Advair

Rhinocort

Pancrecarb (she just started swallowing her enzymes!!!)

Clarinex

Miralax

She has been hospitalized 6 times. At birth for meconium illius

surgery. At ten months for psudomonus (iv's), 3 years for staph and

psudomonus infection, 4 years old she had a mucus plug in her

intestines and blocked her whole digestive system where she needed

a " draino " type medicine to unplug her system. 5 years old for

psudomonus and staph and just this past March for the same two

bacteria.

This is her basic history, just to give you some backround. If

anyone out there would like to chat, let me know! My prayers are

with all of you and your families.

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

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 to the group, its a good place. I also deal with anxiety and

depression, drugs help, as does talking to people. I stressed myself into a

case of fibromyalgia I believe. (I do have fibromyalgia and feel stress has

a lot to do with it) You didn't mention your name, I'm , my daughter

is , she is 19 yrs old wcf,. and I have a son Nick w/nocf. Your

daughter's treatment sounds pretty standard. We have never done Actigall,

and recently stopped using enzymes with no adverse effects.

Welcome again!

love,

M