I'm confused

[valigirl21]

I was in a similar boat as you, although my son is much older, at the time 7. The sweat test was done, 42, so again, 43, and again, 43. The Genzyme test came back neg, so the GI and I were ready to move on. The pulm doc rained on that parade real quick. Then the full Ambry also came back neg and we started looking for other causes. Phone call from the consulting pulm (a CF spec, by the way)to tell us she believes my son's mutations are yet to be discovered. Dx: cystic fibrosis w/ unknown mutations. IMHO I'd definately go for the full panel.

 

[valigirl21]

I was in a similar boat as you, although my son is much older, at the time 7. The sweat test was done, 42, so again, 43, and again, 43. The Genzyme test came back neg, so the GI and I were ready to move on. The pulm doc rained on that parade real quick. Then the full Ambry also came back neg and we started looking for other causes. Phone call from the consulting pulm (a CF spec, by the way)to tell us she believes my son's mutations are yet to be discovered. Dx: cystic fibrosis w/ unknown mutations. IMHO I'd definately go for the full panel.

 

[valigirl21]

I was in a similar boat as you, although my son is much older, at the time 7. The sweat test was done, 42, so again, 43, and again, 43. The Genzyme test came back neg, so the GI and I were ready to move on. The pulm doc rained on that parade real quick. Then the full Ambry also came back neg and we started looking for other causes. Phone call from the consulting pulm (a CF spec, by the way)to tell us she believes my son's mutations are yet to be discovered. Dx: cystic fibrosis w/ unknown mutations. IMHO I'd definately go for the full panel.

 

[valigirl21]

I was in a similar boat as you, although my son is much older, at the time 7. The sweat test was done, 42, so again, 43, and again, 43. The Genzyme test came back neg, so the GI and I were ready to move on. The pulm doc rained on that parade real quick. Then the full Ambry also came back neg and we started looking for other causes. Phone call from the consulting pulm (a CF spec, by the way)to tell us she believes my son's mutations are yet to be discovered. Dx: cystic fibrosis w/ unknown mutations. IMHO I'd definately go for the full panel.

 

[valigirl21]

I was in a similar boat as you, although my son is much older, at the time 7. The sweat test was done, 42, so again, 43, and again, 43. The Genzyme test came back neg, so the GI and I were ready to move on. The pulm doc rained on that parade real quick. Then the full Ambry also came back neg and we started looking for other causes. Phone call from the consulting pulm (a CF spec, by the way)to tell us she believes my son's mutations are yet to be discovered. Dx: cystic fibrosis w/ unknown mutations. IMHO I'd definately go for the full panel.

 

[shoot4parr]

i was wondering if you went to childrens in philadelphia or pittsburg? we are going to philadelphia and i was thinking the care was pretty good. i thought barb the nurse was great, please let me know how st. chrisptopher's works out. it is not far from CHOP (philadelphia) there also Dupont hospital in Delaware which may not be far. we were considering going there as well just to see what it is like. hope everything works out for you. stayt strong it does get easier especially when you have all these wonderful people to talk to.
jenn

 

[shoot4parr]

i was wondering if you went to childrens in philadelphia or pittsburg? we are going to philadelphia and i was thinking the care was pretty good. i thought barb the nurse was great, please let me know how st. chrisptopher's works out. it is not far from CHOP (philadelphia) there also Dupont hospital in Delaware which may not be far. we were considering going there as well just to see what it is like. hope everything works out for you. stayt strong it does get easier especially when you have all these wonderful people to talk to.
jenn

 

[shoot4parr]

i was wondering if you went to childrens in philadelphia or pittsburg? we are going to philadelphia and i was thinking the care was pretty good. i thought barb the nurse was great, please let me know how st. chrisptopher's works out. it is not far from CHOP (philadelphia) there also Dupont hospital in Delaware which may not be far. we were considering going there as well just to see what it is like. hope everything works out for you. stayt strong it does get easier especially when you have all these wonderful people to talk to.
jenn

 

[shoot4parr]

i was wondering if you went to childrens in philadelphia or pittsburg? we are going to philadelphia and i was thinking the care was pretty good. i thought barb the nurse was great, please let me know how st. chrisptopher's works out. it is not far from CHOP (philadelphia) there also Dupont hospital in Delaware which may not be far. we were considering going there as well just to see what it is like. hope everything works out for you. stayt strong it does get easier especially when you have all these wonderful people to talk to.
jenn

 

[shoot4parr]

i was wondering if you went to childrens in philadelphia or pittsburg? we are going to philadelphia and i was thinking the care was pretty good. i thought barb the nurse was great, please let me know how st. chrisptopher's works out. it is not far from CHOP (philadelphia) there also Dupont hospital in Delaware which may not be far. we were considering going there as well just to see what it is like. hope everything works out for you. stayt strong it does get easier especially when you have all these wonderful people to talk to.
<br />jenn