Any advice??

C

chrissyd

New member
I wasn't diagnosed until I was 21. My mom asked about CF, and my pediatrician told her that if I had it I would be dying. I wish she had pushed so that we knew.

Ask for the Ambry test, get a definate answer. Keep us updated!!!

<img src="i/expressions/rose.gif" border="0">

Chrissy 30 W/CF

PS- I have had digestive problems since I was a teenager. When I was little...I had none.
 
C

chrissyd

New member
I wasn't diagnosed until I was 21. My mom asked about CF, and my pediatrician told her that if I had it I would be dying. I wish she had pushed so that we knew.

Ask for the Ambry test, get a definate answer. Keep us updated!!!

<img src="i/expressions/rose.gif" border="0">

Chrissy 30 W/CF

PS- I have had digestive problems since I was a teenager. When I was little...I had none.
 
C

chrissyd

New member
I wasn't diagnosed until I was 21. My mom asked about CF, and my pediatrician told her that if I had it I would be dying. I wish she had pushed so that we knew.

Ask for the Ambry test, get a definate answer. Keep us updated!!!

<img src="i/expressions/rose.gif" border="0">

Chrissy 30 W/CF

PS- I have had digestive problems since I was a teenager. When I was little...I had none.
 
C

chrissyd

New member
I wasn't diagnosed until I was 21. My mom asked about CF, and my pediatrician told her that if I had it I would be dying. I wish she had pushed so that we knew.

Ask for the Ambry test, get a definate answer. Keep us updated!!!

<img src="i/expressions/rose.gif" border="0">

Chrissy 30 W/CF

PS- I have had digestive problems since I was a teenager. When I was little...I had none.
 
C

chrissyd

New member
I wasn't diagnosed until I was 21. My mom asked about CF, and my pediatrician told her that if I had it I would be dying. I wish she had pushed so that we knew.
<br />
<br />Ask for the Ambry test, get a definate answer. Keep us updated!!!
<br />
<br /><img src="i/expressions/rose.gif" border="0">
<br />
<br />Chrissy 30 W/CF
<br />
<br />PS- I have had digestive problems since I was a teenager. When I was little...I had none.
 
S

sdelorenzo

Guest
You can find the closet cf center to you by going to :
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>
My nephew was diagnosed at age 4 a few weeks after my infant daughter was diagnosed. He never had pnuemonia either. Hope you find some answers soon.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
You can find the closet cf center to you by going to :
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>
My nephew was diagnosed at age 4 a few weeks after my infant daughter was diagnosed. He never had pnuemonia either. Hope you find some answers soon.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
You can find the closet cf center to you by going to :
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>
My nephew was diagnosed at age 4 a few weeks after my infant daughter was diagnosed. He never had pnuemonia either. Hope you find some answers soon.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
You can find the closet cf center to you by going to :
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>
My nephew was diagnosed at age 4 a few weeks after my infant daughter was diagnosed. He never had pnuemonia either. Hope you find some answers soon.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
You can find the closet cf center to you by going to :
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a><br />
<br />My nephew was diagnosed at age 4 a few weeks after my infant daughter was diagnosed. He never had pnuemonia either. Hope you find some answers soon.
<br />Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
M

Mommafirst

Guest
You need a new doctor at a CFF accredited CF center. I am soooo sorry you are getting such a run around. It absolutely sounds like this could be CF. I'm very sorry to hear this.
 
M

Mommafirst

Guest
You need a new doctor at a CFF accredited CF center. I am soooo sorry you are getting such a run around. It absolutely sounds like this could be CF. I'm very sorry to hear this.
 
M

Mommafirst

Guest
You need a new doctor at a CFF accredited CF center. I am soooo sorry you are getting such a run around. It absolutely sounds like this could be CF. I'm very sorry to hear this.
 
M

Mommafirst

Guest
You need a new doctor at a CFF accredited CF center. I am soooo sorry you are getting such a run around. It absolutely sounds like this could be CF. I'm very sorry to hear this.
 
M

Mommafirst

Guest
You need a new doctor at a CFF accredited CF center. I am soooo sorry you are getting such a run around. It absolutely sounds like this could be CF. I'm very sorry to hear this.
 
R

Ratatosk

Administrator
Staff member
Minneapolis Children's IS an accreditted CF facility. Was where DS had a normal 32 on his sweat test and had his surgery to repair his bowel obstruction caused by meconium illeus. Does sound like you're getting the run around -- heard from another parent of a cfer whose son has a very rare mutation and wasn't very pleased with their CF department. Would probably be best to check out U of MN instead.
 
R

Ratatosk

Administrator
Staff member
Minneapolis Children's IS an accreditted CF facility. Was where DS had a normal 32 on his sweat test and had his surgery to repair his bowel obstruction caused by meconium illeus. Does sound like you're getting the run around -- heard from another parent of a cfer whose son has a very rare mutation and wasn't very pleased with their CF department. Would probably be best to check out U of MN instead.
 
R

Ratatosk

Administrator
Staff member
Minneapolis Children's IS an accreditted CF facility. Was where DS had a normal 32 on his sweat test and had his surgery to repair his bowel obstruction caused by meconium illeus. Does sound like you're getting the run around -- heard from another parent of a cfer whose son has a very rare mutation and wasn't very pleased with their CF department. Would probably be best to check out U of MN instead.
 
R

Ratatosk

Administrator
Staff member
Minneapolis Children's IS an accreditted CF facility. Was where DS had a normal 32 on his sweat test and had his surgery to repair his bowel obstruction caused by meconium illeus. Does sound like you're getting the run around -- heard from another parent of a cfer whose son has a very rare mutation and wasn't very pleased with their CF department. Would probably be best to check out U of MN instead.
 
R

Ratatosk

Administrator
Staff member
Minneapolis Children's IS an accreditted CF facility. Was where DS had a normal 32 on his sweat test and had his surgery to repair his bowel obstruction caused by meconium illeus. Does sound like you're getting the run around -- heard from another parent of a cfer whose son has a very rare mutation and wasn't very pleased with their CF department. Would probably be best to check out U of MN instead.
 
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