I'm confused

W

worriedmom

Guest
Thank you soo much for all your input. I will keep pushing for the Ambry and if it means starting from scratch ALL over again, I will. All the inforamtion does help..we have to go back to see them in a month. They wanted to try a plan of treatment for my daughter to rule out some other things. I will comply and give it a little bit of time a couple weeks or so then I will say we tried it your way now lets try it mine. Thank you all you are truly wonderful people...I learn from this site every time I hop on. You are all so knowledgable even more so than some of the docs we've seen. Thank you, Melissa
 
W

worriedmom

Guest
Thank you soo much for all your input. I will keep pushing for the Ambry and if it means starting from scratch ALL over again, I will. All the inforamtion does help..we have to go back to see them in a month. They wanted to try a plan of treatment for my daughter to rule out some other things. I will comply and give it a little bit of time a couple weeks or so then I will say we tried it your way now lets try it mine. Thank you all you are truly wonderful people...I learn from this site every time I hop on. You are all so knowledgable even more so than some of the docs we've seen. Thank you, Melissa
 
W

worriedmom

Guest
Thank you soo much for all your input. I will keep pushing for the Ambry and if it means starting from scratch ALL over again, I will. All the inforamtion does help..we have to go back to see them in a month. They wanted to try a plan of treatment for my daughter to rule out some other things. I will comply and give it a little bit of time a couple weeks or so then I will say we tried it your way now lets try it mine. Thank you all you are truly wonderful people...I learn from this site every time I hop on. You are all so knowledgable even more so than some of the docs we've seen. Thank you, Melissa
 
W

worriedmom

Guest
Thank you soo much for all your input. I will keep pushing for the Ambry and if it means starting from scratch ALL over again, I will. All the inforamtion does help..we have to go back to see them in a month. They wanted to try a plan of treatment for my daughter to rule out some other things. I will comply and give it a little bit of time a couple weeks or so then I will say we tried it your way now lets try it mine. Thank you all you are truly wonderful people...I learn from this site every time I hop on. You are all so knowledgable even more so than some of the docs we've seen. Thank you, Melissa
 
W

worriedmom

Guest
Thank you soo much for all your input. I will keep pushing for the Ambry and if it means starting from scratch ALL over again, I will. All the inforamtion does help..we have to go back to see them in a month. They wanted to try a plan of treatment for my daughter to rule out some other things. I will comply and give it a little bit of time a couple weeks or so then I will say we tried it your way now lets try it mine. Thank you all you are truly wonderful people...I learn from this site every time I hop on. You are all so knowledgable even more so than some of the docs we've seen. Thank you, Melissa
 
B

bittyhorse23

New member
I say go to a defferent hospital. You mentioned CHOP so I am assuming you live around Philadelphia. (I go to Penn Presby for my CF clinic) Try St Christopher's. They are an excellent hospital as well. I went there for a few years when my DR was there.

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

bittyhorse23

New member
I say go to a defferent hospital. You mentioned CHOP so I am assuming you live around Philadelphia. (I go to Penn Presby for my CF clinic) Try St Christopher's. They are an excellent hospital as well. I went there for a few years when my DR was there.

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

bittyhorse23

New member
I say go to a defferent hospital. You mentioned CHOP so I am assuming you live around Philadelphia. (I go to Penn Presby for my CF clinic) Try St Christopher's. They are an excellent hospital as well. I went there for a few years when my DR was there.

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

bittyhorse23

New member
I say go to a defferent hospital. You mentioned CHOP so I am assuming you live around Philadelphia. (I go to Penn Presby for my CF clinic) Try St Christopher's. They are an excellent hospital as well. I went there for a few years when my DR was there.

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

bittyhorse23

New member
I say go to a defferent hospital. You mentioned CHOP so I am assuming you live around Philadelphia. (I go to Penn Presby for my CF clinic) Try St Christopher's. They are an excellent hospital as well. I went there for a few years when my DR was there.
<br />
<br /><img src="i/expressions/heart.gif" border="0">
 
W

worriedmom

Guest
Thank you..I will look into that. We live in NJ so any reputable hospital is 1-2 and a half hours away, so I will see. Thank you I wasn't aware of St. Christopher's, I'm sure it can't be that much farther. Melissa
 
W

worriedmom

Guest
Thank you..I will look into that. We live in NJ so any reputable hospital is 1-2 and a half hours away, so I will see. Thank you I wasn't aware of St. Christopher's, I'm sure it can't be that much farther. Melissa
 
W

worriedmom

Guest
Thank you..I will look into that. We live in NJ so any reputable hospital is 1-2 and a half hours away, so I will see. Thank you I wasn't aware of St. Christopher's, I'm sure it can't be that much farther. Melissa
 
W

worriedmom

Guest
Thank you..I will look into that. We live in NJ so any reputable hospital is 1-2 and a half hours away, so I will see. Thank you I wasn't aware of St. Christopher's, I'm sure it can't be that much farther. Melissa
 
W

worriedmom

Guest
Thank you..I will look into that. We live in NJ so any reputable hospital is 1-2 and a half hours away, so I will see. Thank you I wasn't aware of St. Christopher's, I'm sure it can't be that much farther. Melissa
 
J

jaazavala

New member
What I did and suggest that you do to is call ambry and get the test kit. It is free and they will send it to you within a few days. Take it with you whenever you go to ANY doctors. All they have to do is check a few boxes and sign there name. My baby's pediatrician wanted to wait for her to see the pulmonologist to do genetic testing but her apt wasnt going to be for 3 months. I just couldent wait that long so I had my doctor test me. I explaind everything to her and she even had me fill out the papers (there were only 2). I had her do the ambry amplified so that i would be positive if I was a carrier or not. I know that this will not give her a diaganosis but if I am not even a carrier that we can at least rule it out. That is if I'm not a carrier of one of the rare genes that have not been identified yet.

Good luck and dont give up untill you are 100% satisfied with your childs care.
 
J

jaazavala

New member
What I did and suggest that you do to is call ambry and get the test kit. It is free and they will send it to you within a few days. Take it with you whenever you go to ANY doctors. All they have to do is check a few boxes and sign there name. My baby's pediatrician wanted to wait for her to see the pulmonologist to do genetic testing but her apt wasnt going to be for 3 months. I just couldent wait that long so I had my doctor test me. I explaind everything to her and she even had me fill out the papers (there were only 2). I had her do the ambry amplified so that i would be positive if I was a carrier or not. I know that this will not give her a diaganosis but if I am not even a carrier that we can at least rule it out. That is if I'm not a carrier of one of the rare genes that have not been identified yet.

Good luck and dont give up untill you are 100% satisfied with your childs care.
 
J

jaazavala

New member
What I did and suggest that you do to is call ambry and get the test kit. It is free and they will send it to you within a few days. Take it with you whenever you go to ANY doctors. All they have to do is check a few boxes and sign there name. My baby's pediatrician wanted to wait for her to see the pulmonologist to do genetic testing but her apt wasnt going to be for 3 months. I just couldent wait that long so I had my doctor test me. I explaind everything to her and she even had me fill out the papers (there were only 2). I had her do the ambry amplified so that i would be positive if I was a carrier or not. I know that this will not give her a diaganosis but if I am not even a carrier that we can at least rule it out. That is if I'm not a carrier of one of the rare genes that have not been identified yet.

Good luck and dont give up untill you are 100% satisfied with your childs care.
 
J

jaazavala

New member
What I did and suggest that you do to is call ambry and get the test kit. It is free and they will send it to you within a few days. Take it with you whenever you go to ANY doctors. All they have to do is check a few boxes and sign there name. My baby's pediatrician wanted to wait for her to see the pulmonologist to do genetic testing but her apt wasnt going to be for 3 months. I just couldent wait that long so I had my doctor test me. I explaind everything to her and she even had me fill out the papers (there were only 2). I had her do the ambry amplified so that i would be positive if I was a carrier or not. I know that this will not give her a diaganosis but if I am not even a carrier that we can at least rule it out. That is if I'm not a carrier of one of the rare genes that have not been identified yet.

Good luck and dont give up untill you are 100% satisfied with your childs care.
 
J

jaazavala

New member
What I did and suggest that you do to is call ambry and get the test kit. It is free and they will send it to you within a few days. Take it with you whenever you go to ANY doctors. All they have to do is check a few boxes and sign there name. My baby's pediatrician wanted to wait for her to see the pulmonologist to do genetic testing but her apt wasnt going to be for 3 months. I just couldent wait that long so I had my doctor test me. I explaind everything to her and she even had me fill out the papers (there were only 2). I had her do the ambry amplified so that i would be positive if I was a carrier or not. I know that this will not give her a diaganosis but if I am not even a carrier that we can at least rule it out. That is if I'm not a carrier of one of the rare genes that have not been identified yet.
<br />
<br />Good luck and dont give up untill you are 100% satisfied with your childs care.
 
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