At my wits end....

worriedmom · May 16, 2008

I feel like I am truly at my wits end. I don't know what to do...I have posted before but it has been a while for I have tried to take some of your advise and not drive myself any crazier than usual. We have been running on a hamster wheel or so it feels for well over a year now trying to get a diagnosis for our 4 year old little girl for which every doc we come in contact with mentions the possibility of CF. She has a multiple of symptoms of which could be CF ranging from gallstones, constipation, chronic sinusitis, chronic cough, hx of pneumonia with a pleural effusion, several bouts of rsv, floating stools...just to name a few. Problem seems to be the doctors don't know how to order this Ambry Amplified panel. They keep ordering the 100 gene panel and then we have to wait..and pray they reorder it correctly and they don't. Today I just recieved a letter in the mail from her GI doc that the hospital was unsuccessful in performing the test and it now needs to be oredered by a Pulmonologist or genetesist. We have had the previous ones ordered by her Primary and GI(twice). She has also has had sweat test 4 to be exact...two negative. one borderline and one inconclusive. But I know how they can be since half of the things I've read say they sometimes don't matter. I'm tired of the waiting and don't know what else to do...we are seeing a new Pulmo on 6/13(that's being squeezed in)LOL! witha phone call from her GI doc pushing us through. We were told only a Pulmo or gentics doc can order Ambry...does anyone know if that is true? That is what we were told by our Gi doc today. I know that this is long winded and I'm sorry for I just feel like I am at my wits end. Just had to vent thanks for listening! Melissa

worriedmom · May 16, 2008

I feel like I am truly at my wits end. I don't know what to do...I have posted before but it has been a while for I have tried to take some of your advise and not drive myself any crazier than usual. We have been running on a hamster wheel or so it feels for well over a year now trying to get a diagnosis for our 4 year old little girl for which every doc we come in contact with mentions the possibility of CF. She has a multiple of symptoms of which could be CF ranging from gallstones, constipation, chronic sinusitis, chronic cough, hx of pneumonia with a pleural effusion, several bouts of rsv, floating stools...just to name a few. Problem seems to be the doctors don't know how to order this Ambry Amplified panel. They keep ordering the 100 gene panel and then we have to wait..and pray they reorder it correctly and they don't. Today I just recieved a letter in the mail from her GI doc that the hospital was unsuccessful in performing the test and it now needs to be oredered by a Pulmonologist or genetesist. We have had the previous ones ordered by her Primary and GI(twice). She has also has had sweat test 4 to be exact...two negative. one borderline and one inconclusive. But I know how they can be since half of the things I've read say they sometimes don't matter. I'm tired of the waiting and don't know what else to do...we are seeing a new Pulmo on 6/13(that's being squeezed in)LOL! witha phone call from her GI doc pushing us through. We were told only a Pulmo or gentics doc can order Ambry...does anyone know if that is true? That is what we were told by our Gi doc today. I know that this is long winded and I'm sorry for I just feel like I am at my wits end. Just had to vent thanks for listening! Melissa

worriedmom · May 16, 2008

I feel like I am truly at my wits end. I don't know what to do...I have posted before but it has been a while for I have tried to take some of your advise and not drive myself any crazier than usual. We have been running on a hamster wheel or so it feels for well over a year now trying to get a diagnosis for our 4 year old little girl for which every doc we come in contact with mentions the possibility of CF. She has a multiple of symptoms of which could be CF ranging from gallstones, constipation, chronic sinusitis, chronic cough, hx of pneumonia with a pleural effusion, several bouts of rsv, floating stools...just to name a few. Problem seems to be the doctors don't know how to order this Ambry Amplified panel. They keep ordering the 100 gene panel and then we have to wait..and pray they reorder it correctly and they don't. Today I just recieved a letter in the mail from her GI doc that the hospital was unsuccessful in performing the test and it now needs to be oredered by a Pulmonologist or genetesist. We have had the previous ones ordered by her Primary and GI(twice). She has also has had sweat test 4 to be exact...two negative. one borderline and one inconclusive. But I know how they can be since half of the things I've read say they sometimes don't matter. I'm tired of the waiting and don't know what else to do...we are seeing a new Pulmo on 6/13(that's being squeezed in)LOL! witha phone call from her GI doc pushing us through. We were told only a Pulmo or gentics doc can order Ambry...does anyone know if that is true? That is what we were told by our Gi doc today. I know that this is long winded and I'm sorry for I just feel like I am at my wits end. Just had to vent thanks for listening! Melissa

worriedmom · May 16, 2008

I feel like I am truly at my wits end. I don't know what to do...I have posted before but it has been a while for I have tried to take some of your advise and not drive myself any crazier than usual. We have been running on a hamster wheel or so it feels for well over a year now trying to get a diagnosis for our 4 year old little girl for which every doc we come in contact with mentions the possibility of CF. She has a multiple of symptoms of which could be CF ranging from gallstones, constipation, chronic sinusitis, chronic cough, hx of pneumonia with a pleural effusion, several bouts of rsv, floating stools...just to name a few. Problem seems to be the doctors don't know how to order this Ambry Amplified panel. They keep ordering the 100 gene panel and then we have to wait..and pray they reorder it correctly and they don't. Today I just recieved a letter in the mail from her GI doc that the hospital was unsuccessful in performing the test and it now needs to be oredered by a Pulmonologist or genetesist. We have had the previous ones ordered by her Primary and GI(twice). She has also has had sweat test 4 to be exact...two negative. one borderline and one inconclusive. But I know how they can be since half of the things I've read say they sometimes don't matter. I'm tired of the waiting and don't know what else to do...we are seeing a new Pulmo on 6/13(that's being squeezed in)LOL! witha phone call from her GI doc pushing us through. We were told only a Pulmo or gentics doc can order Ambry...does anyone know if that is true? That is what we were told by our Gi doc today. I know that this is long winded and I'm sorry for I just feel like I am at my wits end. Just had to vent thanks for listening! Melissa

worriedmom · May 16, 2008

I feel like I am truly at my wits end. I don't know what to do...I have posted before but it has been a while for I have tried to take some of your advise and not drive myself any crazier than usual. We have been running on a hamster wheel or so it feels for well over a year now trying to get a diagnosis for our 4 year old little girl for which every doc we come in contact with mentions the possibility of CF. She has a multiple of symptoms of which could be CF ranging from gallstones, constipation, chronic sinusitis, chronic cough, hx of pneumonia with a pleural effusion, several bouts of rsv, floating stools...just to name a few. Problem seems to be the doctors don't know how to order this Ambry Amplified panel. They keep ordering the 100 gene panel and then we have to wait..and pray they reorder it correctly and they don't. Today I just recieved a letter in the mail from her GI doc that the hospital was unsuccessful in performing the test and it now needs to be oredered by a Pulmonologist or genetesist. We have had the previous ones ordered by her Primary and GI(twice). She has also has had sweat test 4 to be exact...two negative. one borderline and one inconclusive. But I know how they can be since half of the things I've read say they sometimes don't matter. I'm tired of the waiting and don't know what else to do...we are seeing a new Pulmo on 6/13(that's being squeezed in)LOL! witha phone call from her GI doc pushing us through. We were told only a Pulmo or gentics doc can order Ambry...does anyone know if that is true? That is what we were told by our Gi doc today. I know that this is long winded and I'm sorry for I just feel like I am at my wits end. Just had to vent thanks for listening! Melissa

ktsmom · May 16, 2008

I will quickly answer your question regarding the full panel. You can get the requisition form at AmbryGenetics.com

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygenetics.com/reports/F0408-02-011-PTM-22%20_General%20Test%20Requisition%20Form_.pdf
">http://www.ambrygenetics.com/r...quisition%20Form_.pdf
</a>
I think any doc can order it. You request the extent of the test you are ordering on the 2nd page. The blood sample goes in a standrard lavender tube. The advantage to calling and requesting the "kit" from Ambry (which we have done before) is that they send it in a nice box with a return envelope.

I can see why you feel like you are on a hamster wheel. Someone somewhere isn't doing their job correctly. But you are - keep trying and good luck with everything!

ktsmom · May 16, 2008

I will quickly answer your question regarding the full panel. You can get the requisition form at AmbryGenetics.com

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygenetics.com/reports/F0408-02-011-PTM-22%20_General%20Test%20Requisition%20Form_.pdf
">http://www.ambrygenetics.com/r...quisition%20Form_.pdf
</a>
I think any doc can order it. You request the extent of the test you are ordering on the 2nd page. The blood sample goes in a standrard lavender tube. The advantage to calling and requesting the "kit" from Ambry (which we have done before) is that they send it in a nice box with a return envelope.

I can see why you feel like you are on a hamster wheel. Someone somewhere isn't doing their job correctly. But you are - keep trying and good luck with everything!

ktsmom · May 16, 2008

I will quickly answer your question regarding the full panel. You can get the requisition form at AmbryGenetics.com

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygenetics.com/reports/F0408-02-011-PTM-22%20_General%20Test%20Requisition%20Form_.pdf
">http://www.ambrygenetics.com/r...quisition%20Form_.pdf
</a>
I think any doc can order it. You request the extent of the test you are ordering on the 2nd page. The blood sample goes in a standrard lavender tube. The advantage to calling and requesting the "kit" from Ambry (which we have done before) is that they send it in a nice box with a return envelope.

I can see why you feel like you are on a hamster wheel. Someone somewhere isn't doing their job correctly. But you are - keep trying and good luck with everything!

ktsmom · May 16, 2008

I will quickly answer your question regarding the full panel. You can get the requisition form at AmbryGenetics.com

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygenetics.com/reports/F0408-02-011-PTM-22%20_General%20Test%20Requisition%20Form_.pdf
">http://www.ambrygenetics.com/r...quisition%20Form_.pdf
</a>
I think any doc can order it. You request the extent of the test you are ordering on the 2nd page. The blood sample goes in a standrard lavender tube. The advantage to calling and requesting the "kit" from Ambry (which we have done before) is that they send it in a nice box with a return envelope.

I can see why you feel like you are on a hamster wheel. Someone somewhere isn't doing their job correctly. But you are - keep trying and good luck with everything!

ktsmom · May 16, 2008

I will quickly answer your question regarding the full panel. You can get the requisition form at AmbryGenetics.com
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygenetics.com/reports/F0408-02-011-PTM-22%20_General%20Test%20Requisition%20Form_.pdf
">http://www.ambrygenetics.com/r...quisition%20Form_.pdf
</a> 
 I think any doc can order it. You request the extent of the test you are ordering on the 2nd page. The blood sample goes in a standrard lavender tube. The advantage to calling and requesting the "kit" from Ambry (which we have done before) is that they send it in a nice box with a return envelope.
 
 I can see why you feel like you are on a hamster wheel. Someone somewhere isn't doing their job correctly. But you are - keep trying and good luck with everything!

Mommafirst · May 16, 2008

Hi Melissa -- I am so sorry you are continuing to get the runaround. What you need is to get your daughter to a CFF accredited CF center immediately (do not pass go, do not collect $100 LOL ). A CF center that knows what it is doing would not make an error in ordering the right test. Our CF center made room to see us the next day after my daughter had a borderline sweat. They ordered the panel first, because its cheaper that way, and eventually ordered the Ambry test. All in all the whole process was less than a 3 month ordeal. It was impossible at the time, but nothing compared to a year of getting the runaround.

I hope you get this figured out and some help for your daughter!!!

Mommafirst · May 16, 2008

Hi Melissa -- I am so sorry you are continuing to get the runaround. What you need is to get your daughter to a CFF accredited CF center immediately (do not pass go, do not collect $100 LOL ). A CF center that knows what it is doing would not make an error in ordering the right test. Our CF center made room to see us the next day after my daughter had a borderline sweat. They ordered the panel first, because its cheaper that way, and eventually ordered the Ambry test. All in all the whole process was less than a 3 month ordeal. It was impossible at the time, but nothing compared to a year of getting the runaround.

I hope you get this figured out and some help for your daughter!!!

Mommafirst · May 16, 2008

Hi Melissa -- I am so sorry you are continuing to get the runaround. What you need is to get your daughter to a CFF accredited CF center immediately (do not pass go, do not collect $100 LOL ). A CF center that knows what it is doing would not make an error in ordering the right test. Our CF center made room to see us the next day after my daughter had a borderline sweat. They ordered the panel first, because its cheaper that way, and eventually ordered the Ambry test. All in all the whole process was less than a 3 month ordeal. It was impossible at the time, but nothing compared to a year of getting the runaround.

I hope you get this figured out and some help for your daughter!!!

Mommafirst · May 16, 2008

Hi Melissa -- I am so sorry you are continuing to get the runaround. What you need is to get your daughter to a CFF accredited CF center immediately (do not pass go, do not collect $100 LOL ). A CF center that knows what it is doing would not make an error in ordering the right test. Our CF center made room to see us the next day after my daughter had a borderline sweat. They ordered the panel first, because its cheaper that way, and eventually ordered the Ambry test. All in all the whole process was less than a 3 month ordeal. It was impossible at the time, but nothing compared to a year of getting the runaround.

I hope you get this figured out and some help for your daughter!!!

Mommafirst · May 16, 2008

Hi Melissa -- I am so sorry you are continuing to get the runaround. What you need is to get your daughter to a CFF accredited CF center immediately (do not pass go, do not collect $100 LOL ). A CF center that knows what it is doing would not make an error in ordering the right test. Our CF center made room to see us the next day after my daughter had a borderline sweat. They ordered the panel first, because its cheaper that way, and eventually ordered the Ambry test. All in all the whole process was less than a 3 month ordeal. It was impossible at the time, but nothing compared to a year of getting the runaround.
 
 I hope you get this figured out and some help for your daughter!!!

sdelorenzo · May 16, 2008

You can find the closet cff care center by going to:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>
What a frustrating situation you are in!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · May 16, 2008

You can find the closet cff care center by going to:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>
What a frustrating situation you are in!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · May 16, 2008

You can find the closet cff care center by going to:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>
What a frustrating situation you are in!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · May 16, 2008

You can find the closet cff care center by going to:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>
What a frustrating situation you are in!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · May 16, 2008

You can find the closet cff care center by going to:
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a> 
 What a frustrating situation you are in!
 Sharon, mom of Sophia, 6 and Jack, 4 both with cf

At my wits end....

worriedmom

Guest

worriedmom

Guest

worriedmom

Guest

worriedmom

Guest

worriedmom

Guest

ktsmom

New member

ktsmom

New member

ktsmom

New member

ktsmom

New member

ktsmom

New member

Mommafirst

Guest

Mommafirst

Guest

Mommafirst

Guest

Mommafirst

Guest

Mommafirst

Guest

sdelorenzo

Guest

sdelorenzo

Guest

sdelorenzo

Guest

sdelorenzo

Guest

sdelorenzo

Guest