about to go crazy!!

H

heatherrose415

New member
Thank you ALL SO VERY MUCH!!! You have no idea (actually you probably know all to well) how much these replies mean to me!!

I printed off DOZENS of research to help my argument if there is one with the Dr. And I think after talking to Nicole in PM, we are going to ask to stay at Stanford.

I will let you guys know how it goes!

THANKS!
 
H

heatherrose415

New member
Thank you ALL SO VERY MUCH!!! You have no idea (actually you probably know all to well) how much these replies mean to me!!

I printed off DOZENS of research to help my argument if there is one with the Dr. And I think after talking to Nicole in PM, we are going to ask to stay at Stanford.

I will let you guys know how it goes!

THANKS!
 
H

heatherrose415

New member
we called our GI Dr. and he said that he will set up an appt with the CF clinic at Stanford for a second sweat test and more extensive genetic testing. My husband called and Im guessing that means not the full panel ambry, but we are suppose to be getting a call from the CF clinic, so we will ask then. Im just relieved that we will not be denied at this clinic like we did at UC Davis. Thanks so much for the heads up Nicole!!

I will update you all when I can!!
 
H

heatherrose415

New member
we called our GI Dr. and he said that he will set up an appt with the CF clinic at Stanford for a second sweat test and more extensive genetic testing. My husband called and Im guessing that means not the full panel ambry, but we are suppose to be getting a call from the CF clinic, so we will ask then. Im just relieved that we will not be denied at this clinic like we did at UC Davis. Thanks so much for the heads up Nicole!!

I will update you all when I can!!
 
H

heatherrose415

New member
we called our GI Dr. and he said that he will set up an appt with the CF clinic at Stanford for a second sweat test and more extensive genetic testing. My husband called and Im guessing that means not the full panel ambry, but we are suppose to be getting a call from the CF clinic, so we will ask then. Im just relieved that we will not be denied at this clinic like we did at UC Davis. Thanks so much for the heads up Nicole!!

I will update you all when I can!!
 
S

sweetwhite30

New member
I can add this when my son was admitted to the hospital at 3 weeks old and he was stooling out and losing weight ,they gave him a gi doctor and he was saying no nop this is something we never seen before mind you theyhad 4 c.f. patients there and one in his room until i finally walked up to the c.f doctor in the hospital and told him they are trying to kill my child would you please look at him and see if maybe you could save him...well the gi doctor yelled at me and then his intern yelled more telling me i was a bad parent for thinking my child had something so aweful.So guess what i pushed more and he sweated 102 and ding ding he has c.f ddf508 genes...them GI doctors do not care ,you really need to go face to face with a c.f doctor and tell them your concerns......The GI docs later apologized and told me i guess it was mother intuition and i called him a very ugly name in the end...you are your childs best advocate.......
 
S

sweetwhite30

New member
I can add this when my son was admitted to the hospital at 3 weeks old and he was stooling out and losing weight ,they gave him a gi doctor and he was saying no nop this is something we never seen before mind you theyhad 4 c.f. patients there and one in his room until i finally walked up to the c.f doctor in the hospital and told him they are trying to kill my child would you please look at him and see if maybe you could save him...well the gi doctor yelled at me and then his intern yelled more telling me i was a bad parent for thinking my child had something so aweful.So guess what i pushed more and he sweated 102 and ding ding he has c.f ddf508 genes...them GI doctors do not care ,you really need to go face to face with a c.f doctor and tell them your concerns......The GI docs later apologized and told me i guess it was mother intuition and i called him a very ugly name in the end...you are your childs best advocate.......
 
S

sweetwhite30

New member
I can add this when my son was admitted to the hospital at 3 weeks old and he was stooling out and losing weight ,they gave him a gi doctor and he was saying no nop this is something we never seen before mind you theyhad 4 c.f. patients there and one in his room until i finally walked up to the c.f doctor in the hospital and told him they are trying to kill my child would you please look at him and see if maybe you could save him...well the gi doctor yelled at me and then his intern yelled more telling me i was a bad parent for thinking my child had something so aweful.So guess what i pushed more and he sweated 102 and ding ding he has c.f ddf508 genes...them GI doctors do not care ,you really need to go face to face with a c.f doctor and tell them your concerns......The GI docs later apologized and told me i guess it was mother intuition and i called him a very ugly name in the end...you are your childs best advocate.......
 
E

Edna0312

New member
Hi Heather,

I'm glad you are getting somewhere. Keep up the fight!

I'm excited to say that today we are having the Ambry test done on my 22mo old son!! Thank God!! It's exciting to think that finally now after 4 years, I may start to get some answers!!

I'll let y'all know.

Good luck to you Heather, and God bless,

Edna
 
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Edna0312

New member
Hi Heather,

I'm glad you are getting somewhere. Keep up the fight!

I'm excited to say that today we are having the Ambry test done on my 22mo old son!! Thank God!! It's exciting to think that finally now after 4 years, I may start to get some answers!!

I'll let y'all know.

Good luck to you Heather, and God bless,

Edna
 
E

Edna0312

New member
Hi Heather,

I'm glad you are getting somewhere. Keep up the fight!

I'm excited to say that today we are having the Ambry test done on my 22mo old son!! Thank God!! It's exciting to think that finally now after 4 years, I may start to get some answers!!

I'll let y'all know.

Good luck to you Heather, and God bless,

Edna
 
G

GB91361

New member
Dear Heather Rose

I don't know and can not say if your situation is anything similar to mine, but for me. My child's sweat test was redone and came back as a possibly could be CF. This was the 6th test. When he was finally diagnosed with CF I was already pregnant with my 2nd. child. Thank God for that no matter how hard. But anyway, the dr.s got tired of me. I had no CF noted anywhere in my family history. For some reason on my part. I just knew something wasn't right. Mama's intuition.
Keep on doing what your doing until you get a response to ease your mind. Good luck and my God bless you with being wrong.

P.S. My oldest is now 17 and about to graduate high school. The one I was carrying does have CF. He is also #1 tennis doubles and #1 in their region!
 
G

GB91361

New member
Dear Heather Rose

I don't know and can not say if your situation is anything similar to mine, but for me. My child's sweat test was redone and came back as a possibly could be CF. This was the 6th test. When he was finally diagnosed with CF I was already pregnant with my 2nd. child. Thank God for that no matter how hard. But anyway, the dr.s got tired of me. I had no CF noted anywhere in my family history. For some reason on my part. I just knew something wasn't right. Mama's intuition.
Keep on doing what your doing until you get a response to ease your mind. Good luck and my God bless you with being wrong.

P.S. My oldest is now 17 and about to graduate high school. The one I was carrying does have CF. He is also #1 tennis doubles and #1 in their region!
 
G

GB91361

New member
Dear Heather Rose

I don't know and can not say if your situation is anything similar to mine, but for me. My child's sweat test was redone and came back as a possibly could be CF. This was the 6th test. When he was finally diagnosed with CF I was already pregnant with my 2nd. child. Thank God for that no matter how hard. But anyway, the dr.s got tired of me. I had no CF noted anywhere in my family history. For some reason on my part. I just knew something wasn't right. Mama's intuition.
Keep on doing what your doing until you get a response to ease your mind. Good luck and my God bless you with being wrong.

P.S. My oldest is now 17 and about to graduate high school. The one I was carrying does have CF. He is also #1 tennis doubles and #1 in their region!
 
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