Hello everyone - new here

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anonymous

New member
Not sure if Im posting in the right spot, but heres my little intro.

My name is Amie. Im 25, married & our 2 yr old daughter was just diagnosed with CF.
Im having a hard time dealing with that & found this place.
Im hoping it will do me some good to be a part of this group.

Oh and we live in southern California.
 
6

65rosessamurai

Guest
Welcome, Amie.
How recent was your child diagnosed? What current condition is she in?
There are a lot of kind people on this forum that can help.
I've just started this forum myself, about a month ago.
I'm 40 years old, have CF and am living in Japan.
Just to let you know there still is hope.
(And, yes, I believe you are posting in the right place!) Some who are on this forum don't have CF, but their child does, so my opinion is You're ok.
 
J

JazzysMom

New member
Welcome!
I dont think there is any question or situation that cant be answered by someone here so feel free to ask!
 
A

anonymous

New member
She was just diagnosed on tuesday.
Shes had digestive problems since she was about 6 months old.
And shes under weight according to the percentile charts.
In august she had a rectal prolapse (about 10 times in about 2 weeks)
Thats when they finally decided to test her for CF.

Other than all that shes a pretty healthy child.
 
D

Diane

New member
Welcome <img src="i/expressions/face-icon-small-smile.gif" border="0"> , You will find this board very helpful.
 
P

pedalup

New member
hOWDY , I DO NOT HAVE C/F BUT MY 23 YEAR OLD BRO DOES, SO I AM ALWAYS ON HERE. THIS SIGHT HAS BEEN VERY COMFORTING TO ME! U SAID U ARE FROM SOUTHERN CALI? I LIVE IN VENTURA COUNTY CALIFORNIA... WHERE U AT?
 
A

anonymous

New member
Hi Amie,

My daughter was also diagnosed at 2 yrs old after having a rectal prolapse. She had belly aches from the time she was 11 months old but on one could ever figure out why. I guess a rectal prolapse is a red flag for CF. Allie is now 4 and doing very well. I remember that first month after getting her diagnosis and how hard it is to deal with everything. Hang in there. It does get better with time and you'll be used to your new routine in no time. Good luck and feel free to email me anytime with any questions. amyplymale@earthlink.net

Amy
mom to Allie w/CF and Betsy without
 
F

Finley56

New member
What routine do you have??

The doctor hasnt talked to us about anything yet since hes been on vacation all week.
 
J

julie

New member
Welcome Amie,

My name is Julie and my husband is 25 with CF. We live in Southern CA as well, San Diego. Feel free to email me anytime you'd like (division902@hotmail.com). I can't really help with the youngster questions, there are MANY parents on this site who will be great support to you with those toddler/CF questions, but if you ever want to meet an older CFer.... It's been a curiosity thing for many parents and My husband Mark and I had a great time at this year's CF fundraiser talking to all the younger kids about doing their medications, treatments, eating the "yucky" protein drinks.....

Welcome,
 
M

Mockingbird

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Finley56</b></i><br>thanks for the warm welcomes <img src="i/expressions/face-icon-small-smile.gif" border="0"><hr></blockquote>


Ha ha, that IS what we're paid for. =-)
 
A

anonymous

New member
Hi, my 8 year old daughter was just diagnosed also (about 2 months ago). Right now her routine is a follows.

Oral meds include a special daily vitamin, and 1/2 to 2 enzyme capsules with each meal/snack.

She does her nebulizer twice a day.

In the morning we do albuterol (it takes about 10 minutues) and then do chest physical therapy (CPT). CPT involves pounding on her chest and back (for about 20 minutes0 as she sits or lays in various positions.

In the evening we do albutero (10 minutes) and pulmazyme (10 minutes) wait 30 minutes then do CPT (20 minutes).

I think this is pretty much the standard treatment for CFers with mild or no symptoms. As things progress other meds will be included. Also, if she comes down with a cold, the doctor said we should increase the CPT to 3 times a day.

Hope this is the info you were looking for. BTW I am from Southern California also, Hemet. My husband works in Fontana.
 
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Finley56

New member
We saw the dr today.

he put her on ADEK something or other, iron, the ezyme supplement, and tagament (sp)

I told him I was concerned about the prolapse happening again & he said that usualy once they get the enzymes they need, it doesnt happen again.

Im feeling a little more positive about this whole thing. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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