Scared and not sure where to go....UPDATED 4--5-10 more questions

[tacos99]

Scared and not sure where to go....

I agree with the other posters. My daughter, Shelby, was diagnosed at age 9 after sinus surgery. She had no polyps and was diagnosed with allergic fungal sinusitis initially. A sweat test is always ordered with this diagnosis and CF was discovered.
Shelby had only childhood colds (not many) prior to surgery so this was totally unexpected. I would have the sweat and genetic test even if it is a long drive. Considering what you and your family have been through it would either put your mind at rest if neg or start your daughter on meds that will make her feel much better if positive. Good luck and take care.

 

[tacos99]

Scared and not sure where to go....

I agree with the other posters. My daughter, Shelby, was diagnosed at age 9 after sinus surgery. She had no polyps and was diagnosed with allergic fungal sinusitis initially. A sweat test is always ordered with this diagnosis and CF was discovered.
Shelby had only childhood colds (not many) prior to surgery so this was totally unexpected. I would have the sweat and genetic test even if it is a long drive. Considering what you and your family have been through it would either put your mind at rest if neg or start your daughter on meds that will make her feel much better if positive. Good luck and take care.

 

[tacos99]

Scared and not sure where to go....

I agree with the other posters. My daughter, Shelby, was diagnosed at age 9 after sinus surgery. She had no polyps and was diagnosed with allergic fungal sinusitis initially. A sweat test is always ordered with this diagnosis and CF was discovered.
Shelby had only childhood colds (not many) prior to surgery so this was totally unexpected. I would have the sweat and genetic test even if it is a long drive. Considering what you and your family have been through it would either put your mind at rest if neg or start your daughter on meds that will make her feel much better if positive. Good luck and take care.

 

[tacos99]

Scared and not sure where to go....

I agree with the other posters. My daughter, Shelby, was diagnosed at age 9 after sinus surgery. She had no polyps and was diagnosed with allergic fungal sinusitis initially. A sweat test is always ordered with this diagnosis and CF was discovered.
Shelby had only childhood colds (not many) prior to surgery so this was totally unexpected. I would have the sweat and genetic test even if it is a long drive. Considering what you and your family have been through it would either put your mind at rest if neg or start your daughter on meds that will make her feel much better if positive. Good luck and take care.

 

[tacos99]

Scared and not sure where to go....

I agree with the other posters. My daughter, Shelby, was diagnosed at age 9 after sinus surgery. She had no polyps and was diagnosed with allergic fungal sinusitis initially. A sweat test is always ordered with this diagnosis and CF was discovered.
<br />Shelby had only childhood colds (not many) prior to surgery so this was totally unexpected. I would have the sweat and genetic test even if it is a long drive. Considering what you and your family have been through it would either put your mind at rest if neg or start your daughter on meds that will make her feel much better if positive. Good luck and take care.

 

[JORDYSMOM]

Scared and not sure where to go....

Hi Amanda, and welcome. I'm sorry you are in the position to be searching here for answers, but if this is a great place to find them.

I don't blame you for not wanting to sit back and wait. Since you are 5 hours away from the CF center, I'd ask your ENT to order the full panel genetic blood test, and have it sent to Ambry Genetics. That way, you won't have to worry about a local hospital/clinic messing up the sweat test.

Ask all the questions you need to. Someone here will have the answers. As Tom said, we will be here to support you every step of the way. Please keep us posted.

Stacey

 

[JORDYSMOM]

Scared and not sure where to go....

Hi Amanda, and welcome. I'm sorry you are in the position to be searching here for answers, but if this is a great place to find them.

I don't blame you for not wanting to sit back and wait. Since you are 5 hours away from the CF center, I'd ask your ENT to order the full panel genetic blood test, and have it sent to Ambry Genetics. That way, you won't have to worry about a local hospital/clinic messing up the sweat test.

Ask all the questions you need to. Someone here will have the answers. As Tom said, we will be here to support you every step of the way. Please keep us posted.

Stacey

 

[JORDYSMOM]

Scared and not sure where to go....

Hi Amanda, and welcome. I'm sorry you are in the position to be searching here for answers, but if this is a great place to find them.

I don't blame you for not wanting to sit back and wait. Since you are 5 hours away from the CF center, I'd ask your ENT to order the full panel genetic blood test, and have it sent to Ambry Genetics. That way, you won't have to worry about a local hospital/clinic messing up the sweat test.

Ask all the questions you need to. Someone here will have the answers. As Tom said, we will be here to support you every step of the way. Please keep us posted.

Stacey

 

[JORDYSMOM]

Scared and not sure where to go....

Hi Amanda, and welcome. I'm sorry you are in the position to be searching here for answers, but if this is a great place to find them.

I don't blame you for not wanting to sit back and wait. Since you are 5 hours away from the CF center, I'd ask your ENT to order the full panel genetic blood test, and have it sent to Ambry Genetics. That way, you won't have to worry about a local hospital/clinic messing up the sweat test.

Ask all the questions you need to. Someone here will have the answers. As Tom said, we will be here to support you every step of the way. Please keep us posted.

Stacey

 

[JORDYSMOM]

Scared and not sure where to go....

Hi Amanda, and welcome. I'm sorry you are in the position to be searching here for answers, but if this is a great place to find them.
<br />
<br />I don't blame you for not wanting to sit back and wait. Since you are 5 hours away from the CF center, I'd ask your ENT to order the full panel genetic blood test, and have it sent to Ambry Genetics. That way, you won't have to worry about a local hospital/clinic messing up the sweat test.
<br />
<br />Ask all the questions you need to. Someone here will have the answers. As Tom said, we will be here to support you every step of the way. Please keep us posted.
<br />
<br />Stacey

 

[foreverworshiphim]

Scared and not sure where to go....

Thank you all so very much. I talked to my daughter's pulmonary doc today and she went ahead and ordered the genetic screening test which I am hoping entails everything that would be needed to get the right answers. I was told it would be 2wks before we know anything though. I also talked to the CF clinic in Denver and they told me to go ahead with the blood test and then go from there. I will keep in touch and let you know what we find out. I do have a couple of questions though. Do both parents have to have the recessive gene for the child to end up with it? Also has anyone experienced their child waking up in drenched with sweat and smelling like a dead fish? That is the best thing I can come up with to describe the smell. She has been at the same weight now for almost 2 years but does not seem like she has failure to thrive....which I was asked about. Sorry if my posts are scattered but my brain is pretty overwhelmed still and I am dreading the next two weeks to wait it out.
Thank you for the quick responses to my post yesterday!

 

[foreverworshiphim]

Scared and not sure where to go....

Thank you all so very much. I talked to my daughter's pulmonary doc today and she went ahead and ordered the genetic screening test which I am hoping entails everything that would be needed to get the right answers. I was told it would be 2wks before we know anything though. I also talked to the CF clinic in Denver and they told me to go ahead with the blood test and then go from there. I will keep in touch and let you know what we find out. I do have a couple of questions though. Do both parents have to have the recessive gene for the child to end up with it? Also has anyone experienced their child waking up in drenched with sweat and smelling like a dead fish? That is the best thing I can come up with to describe the smell. She has been at the same weight now for almost 2 years but does not seem like she has failure to thrive....which I was asked about. Sorry if my posts are scattered but my brain is pretty overwhelmed still and I am dreading the next two weeks to wait it out.
Thank you for the quick responses to my post yesterday!

 

[foreverworshiphim]

Scared and not sure where to go....

Thank you all so very much. I talked to my daughter's pulmonary doc today and she went ahead and ordered the genetic screening test which I am hoping entails everything that would be needed to get the right answers. I was told it would be 2wks before we know anything though. I also talked to the CF clinic in Denver and they told me to go ahead with the blood test and then go from there. I will keep in touch and let you know what we find out. I do have a couple of questions though. Do both parents have to have the recessive gene for the child to end up with it? Also has anyone experienced their child waking up in drenched with sweat and smelling like a dead fish? That is the best thing I can come up with to describe the smell. She has been at the same weight now for almost 2 years but does not seem like she has failure to thrive....which I was asked about. Sorry if my posts are scattered but my brain is pretty overwhelmed still and I am dreading the next two weeks to wait it out.
Thank you for the quick responses to my post yesterday!

 

[foreverworshiphim]

Scared and not sure where to go....

Thank you all so very much. I talked to my daughter's pulmonary doc today and she went ahead and ordered the genetic screening test which I am hoping entails everything that would be needed to get the right answers. I was told it would be 2wks before we know anything though. I also talked to the CF clinic in Denver and they told me to go ahead with the blood test and then go from there. I will keep in touch and let you know what we find out. I do have a couple of questions though. Do both parents have to have the recessive gene for the child to end up with it? Also has anyone experienced their child waking up in drenched with sweat and smelling like a dead fish? That is the best thing I can come up with to describe the smell. She has been at the same weight now for almost 2 years but does not seem like she has failure to thrive....which I was asked about. Sorry if my posts are scattered but my brain is pretty overwhelmed still and I am dreading the next two weeks to wait it out.
Thank you for the quick responses to my post yesterday!

 

[foreverworshiphim]

Scared and not sure where to go....

Thank you all so very much. I talked to my daughter's pulmonary doc today and she went ahead and ordered the genetic screening test which I am hoping entails everything that would be needed to get the right answers. I was told it would be 2wks before we know anything though. I also talked to the CF clinic in Denver and they told me to go ahead with the blood test and then go from there. I will keep in touch and let you know what we find out. I do have a couple of questions though. Do both parents have to have the recessive gene for the child to end up with it? Also has anyone experienced their child waking up in drenched with sweat and smelling like a dead fish? That is the best thing I can come up with to describe the smell. She has been at the same weight now for almost 2 years but does not seem like she has failure to thrive....which I was asked about. Sorry if my posts are scattered but my brain is pretty overwhelmed still and I am dreading the next two weeks to wait it out.
<br />Thank you for the quick responses to my post yesterday!

 

[sdelorenzo]

Scared and not sure where to go....

Sorry to hear about all you have been through and are going through now. Yes, waking up drenching with sweat can be a sign of cf. My son does this. I have to keep the air conditioner pretty low for my two and make sure there are no covers on him. Denver is a great cf Center. We live in Texas and traveled their to meet with Dr. Accurso for a second opinion. Yes, both parents have to carry a recessive gene for a child to have cf. Also know that generally the first genetic test ordered is one that only tests for about 80 of the most common cf genes. There are about 1500-2000 cf genes now identified. Those people who tend to have milder symptoms and are older like your daughter tend to have less common cf genes. So more genetic testing might need to be done in order to get an accurate result.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 no cf

 

[sdelorenzo]

Scared and not sure where to go....

Sorry to hear about all you have been through and are going through now. Yes, waking up drenching with sweat can be a sign of cf. My son does this. I have to keep the air conditioner pretty low for my two and make sure there are no covers on him. Denver is a great cf Center. We live in Texas and traveled their to meet with Dr. Accurso for a second opinion. Yes, both parents have to carry a recessive gene for a child to have cf. Also know that generally the first genetic test ordered is one that only tests for about 80 of the most common cf genes. There are about 1500-2000 cf genes now identified. Those people who tend to have milder symptoms and are older like your daughter tend to have less common cf genes. So more genetic testing might need to be done in order to get an accurate result.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 no cf

 

[sdelorenzo]

Scared and not sure where to go....

Sorry to hear about all you have been through and are going through now. Yes, waking up drenching with sweat can be a sign of cf. My son does this. I have to keep the air conditioner pretty low for my two and make sure there are no covers on him. Denver is a great cf Center. We live in Texas and traveled their to meet with Dr. Accurso for a second opinion. Yes, both parents have to carry a recessive gene for a child to have cf. Also know that generally the first genetic test ordered is one that only tests for about 80 of the most common cf genes. There are about 1500-2000 cf genes now identified. Those people who tend to have milder symptoms and are older like your daughter tend to have less common cf genes. So more genetic testing might need to be done in order to get an accurate result.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 no cf

 

[sdelorenzo]

Scared and not sure where to go....

Sorry to hear about all you have been through and are going through now. Yes, waking up drenching with sweat can be a sign of cf. My son does this. I have to keep the air conditioner pretty low for my two and make sure there are no covers on him. Denver is a great cf Center. We live in Texas and traveled their to meet with Dr. Accurso for a second opinion. Yes, both parents have to carry a recessive gene for a child to have cf. Also know that generally the first genetic test ordered is one that only tests for about 80 of the most common cf genes. There are about 1500-2000 cf genes now identified. Those people who tend to have milder symptoms and are older like your daughter tend to have less common cf genes. So more genetic testing might need to be done in order to get an accurate result.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 no cf

 

[sdelorenzo]

Scared and not sure where to go....

Sorry to hear about all you have been through and are going through now. Yes, waking up drenching with sweat can be a sign of cf. My son does this. I have to keep the air conditioner pretty low for my two and make sure there are no covers on him. Denver is a great cf Center. We live in Texas and traveled their to meet with Dr. Accurso for a second opinion. Yes, both parents have to carry a recessive gene for a child to have cf. Also know that generally the first genetic test ordered is one that only tests for about 80 of the most common cf genes. There are about 1500-2000 cf genes now identified. Those people who tend to have milder symptoms and are older like your daughter tend to have less common cf genes. So more genetic testing might need to be done in order to get an accurate result.
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 1 no cf