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

[JORDYSMOM]

Scared and not sure where to go....

Yes, the sweating is common. Night sweats do need to be taken seriously, though. Blood sugar issues can cause this, and diabetes is common in people with CF. Also, it can be an indication that the persons reflux has worsened, and a change in meds needs to be addressed. It's very important to keep reflux under control, because your child could be asperating into her lungs at night. This can cause infection, so check into that for sure.

Having the genetic SCREENING done is a great start, but make sure they order the FULL PANEL. With over 1500 known mutations, you simply cannot rule out CF if you are only checking for 50 to 80.

I'm glad your doc is taking you seriously, and I hope the answers come soon. I know you don't want your child to have CF, but if that is the answer you get, she will be able to receive proper care, and feel better.

Stacey

 

[JORDYSMOM]

Scared and not sure where to go....

Yes, the sweating is common. Night sweats do need to be taken seriously, though. Blood sugar issues can cause this, and diabetes is common in people with CF. Also, it can be an indication that the persons reflux has worsened, and a change in meds needs to be addressed. It's very important to keep reflux under control, because your child could be asperating into her lungs at night. This can cause infection, so check into that for sure.

Having the genetic SCREENING done is a great start, but make sure they order the FULL PANEL. With over 1500 known mutations, you simply cannot rule out CF if you are only checking for 50 to 80.

I'm glad your doc is taking you seriously, and I hope the answers come soon. I know you don't want your child to have CF, but if that is the answer you get, she will be able to receive proper care, and feel better.

Stacey

 

[JORDYSMOM]

Scared and not sure where to go....

Yes, the sweating is common. Night sweats do need to be taken seriously, though. Blood sugar issues can cause this, and diabetes is common in people with CF. Also, it can be an indication that the persons reflux has worsened, and a change in meds needs to be addressed. It's very important to keep reflux under control, because your child could be asperating into her lungs at night. This can cause infection, so check into that for sure.

Having the genetic SCREENING done is a great start, but make sure they order the FULL PANEL. With over 1500 known mutations, you simply cannot rule out CF if you are only checking for 50 to 80.

I'm glad your doc is taking you seriously, and I hope the answers come soon. I know you don't want your child to have CF, but if that is the answer you get, she will be able to receive proper care, and feel better.

Stacey

 

[JORDYSMOM]

Scared and not sure where to go....

Yes, the sweating is common. Night sweats do need to be taken seriously, though. Blood sugar issues can cause this, and diabetes is common in people with CF. Also, it can be an indication that the persons reflux has worsened, and a change in meds needs to be addressed. It's very important to keep reflux under control, because your child could be asperating into her lungs at night. This can cause infection, so check into that for sure.

Having the genetic SCREENING done is a great start, but make sure they order the FULL PANEL. With over 1500 known mutations, you simply cannot rule out CF if you are only checking for 50 to 80.

I'm glad your doc is taking you seriously, and I hope the answers come soon. I know you don't want your child to have CF, but if that is the answer you get, she will be able to receive proper care, and feel better.

Stacey

 

[JORDYSMOM]

Scared and not sure where to go....

Yes, the sweating is common. Night sweats do need to be taken seriously, though. Blood sugar issues can cause this, and diabetes is common in people with CF. Also, it can be an indication that the persons reflux has worsened, and a change in meds needs to be addressed. It's very important to keep reflux under control, because your child could be asperating into her lungs at night. This can cause infection, so check into that for sure.
<br />
<br />Having the genetic SCREENING done is a great start, but make sure they order the FULL PANEL. With over 1500 known mutations, you simply cannot rule out CF if you are only checking for 50 to 80.
<br />
<br />I'm glad your doc is taking you seriously, and I hope the answers come soon. I know you don't want your child to have CF, but if that is the answer you get, she will be able to receive proper care, and feel better.
<br />
<br />Stacey

 

[foreverworshiphim]

Scared and not sure where to go....

Well unfortunately her doc only ordered the basic screening because she thinks it would show up if she really has CF. We go to a new ENT in Denver at the beginning of May so I am going to call the CF clinic again and see if they will go ahead and schedule the sweat test. Thank you again for the information!

 

[foreverworshiphim]

Scared and not sure where to go....

Well unfortunately her doc only ordered the basic screening because she thinks it would show up if she really has CF. We go to a new ENT in Denver at the beginning of May so I am going to call the CF clinic again and see if they will go ahead and schedule the sweat test. Thank you again for the information!

 

[foreverworshiphim]

Scared and not sure where to go....

Well unfortunately her doc only ordered the basic screening because she thinks it would show up if she really has CF. We go to a new ENT in Denver at the beginning of May so I am going to call the CF clinic again and see if they will go ahead and schedule the sweat test. Thank you again for the information!

 

[foreverworshiphim]

Scared and not sure where to go....

Well unfortunately her doc only ordered the basic screening because she thinks it would show up if she really has CF. We go to a new ENT in Denver at the beginning of May so I am going to call the CF clinic again and see if they will go ahead and schedule the sweat test. Thank you again for the information!

 

[foreverworshiphim]

Scared and not sure where to go....

Well unfortunately her doc only ordered the basic screening because she thinks it would show up if she really has CF. We go to a new ENT in Denver at the beginning of May so I am going to call the CF clinic again and see if they will go ahead and schedule the sweat test. Thank you again for the information!

 

[JORDYSMOM]

Scared and not sure where to go....UPDATED 4-2-10

Well, this is my opinion only, but there are over 1500 mutations, and only testing for 32 of them seems inadequate. I know you are a very long way from a certified CF center, but I think I'd make an appt. given your child's symptoms. Can you get the pulmo to order the Ambry Ampliphied test? You can get the instructions from Steven Keiles in the families section. The Ambry Genetics thread is tacked at the top of that forum.

Waiting is hard, and I know you are scared. I wish I'd had this site when we were going through this. I'd have known better what to ask, and what to demand of my son's doctors. Keep pushing that pulmo, and advocating for your child.

Stacey

 

[JORDYSMOM]

Scared and not sure where to go....UPDATED 4-2-10

Well, this is my opinion only, but there are over 1500 mutations, and only testing for 32 of them seems inadequate. I know you are a very long way from a certified CF center, but I think I'd make an appt. given your child's symptoms. Can you get the pulmo to order the Ambry Ampliphied test? You can get the instructions from Steven Keiles in the families section. The Ambry Genetics thread is tacked at the top of that forum.

Waiting is hard, and I know you are scared. I wish I'd had this site when we were going through this. I'd have known better what to ask, and what to demand of my son's doctors. Keep pushing that pulmo, and advocating for your child.

Stacey

 

[JORDYSMOM]

Scared and not sure where to go....UPDATED 4-2-10

Well, this is my opinion only, but there are over 1500 mutations, and only testing for 32 of them seems inadequate. I know you are a very long way from a certified CF center, but I think I'd make an appt. given your child's symptoms. Can you get the pulmo to order the Ambry Ampliphied test? You can get the instructions from Steven Keiles in the families section. The Ambry Genetics thread is tacked at the top of that forum.

Waiting is hard, and I know you are scared. I wish I'd had this site when we were going through this. I'd have known better what to ask, and what to demand of my son's doctors. Keep pushing that pulmo, and advocating for your child.

Stacey

 

[JORDYSMOM]

Scared and not sure where to go....UPDATED 4-2-10

Well, this is my opinion only, but there are over 1500 mutations, and only testing for 32 of them seems inadequate. I know you are a very long way from a certified CF center, but I think I'd make an appt. given your child's symptoms. Can you get the pulmo to order the Ambry Ampliphied test? You can get the instructions from Steven Keiles in the families section. The Ambry Genetics thread is tacked at the top of that forum.

Waiting is hard, and I know you are scared. I wish I'd had this site when we were going through this. I'd have known better what to ask, and what to demand of my son's doctors. Keep pushing that pulmo, and advocating for your child.

Stacey

 

[JORDYSMOM]

Scared and not sure where to go....UPDATED 4-2-10

Well, this is my opinion only, but there are over 1500 mutations, and only testing for 32 of them seems inadequate. I know you are a very long way from a certified CF center, but I think I'd make an appt. given your child's symptoms. Can you get the pulmo to order the Ambry Ampliphied test? You can get the instructions from Steven Keiles in the families section. The Ambry Genetics thread is tacked at the top of that forum.
<br />
<br />Waiting is hard, and I know you are scared. I wish I'd had this site when we were going through this. I'd have known better what to ask, and what to demand of my son's doctors. Keep pushing that pulmo, and advocating for your child.
<br />
<br />Stacey

 

[foreverworshiphim]

Scared and not sure where to go....UPDATED 4-2-10

Thank you Stacey very much! When we go to Denver she is actually having her sweat test at the certified CF clinic but I am going to go with your advice and push for the Ambry to be ordered. I hate how these doctors who you have trusted with your kids for years can make you feel crazy for asking them to check your kids out. She tried to convince me not to do the full panel because of the cost and that made me upset because there is no price that can be put on my sweet baby girl's life! Thank you for the encouragement to push for more!! I am very thankful for this site because I would be going nuts without it.
I will keep updating ya!

Thank you again,
Amanda

 

[foreverworshiphim]

Scared and not sure where to go....UPDATED 4-2-10

Thank you Stacey very much! When we go to Denver she is actually having her sweat test at the certified CF clinic but I am going to go with your advice and push for the Ambry to be ordered. I hate how these doctors who you have trusted with your kids for years can make you feel crazy for asking them to check your kids out. She tried to convince me not to do the full panel because of the cost and that made me upset because there is no price that can be put on my sweet baby girl's life! Thank you for the encouragement to push for more!! I am very thankful for this site because I would be going nuts without it.
I will keep updating ya!

Thank you again,
Amanda

 

[foreverworshiphim]

Scared and not sure where to go....UPDATED 4-2-10

Thank you Stacey very much! When we go to Denver she is actually having her sweat test at the certified CF clinic but I am going to go with your advice and push for the Ambry to be ordered. I hate how these doctors who you have trusted with your kids for years can make you feel crazy for asking them to check your kids out. She tried to convince me not to do the full panel because of the cost and that made me upset because there is no price that can be put on my sweet baby girl's life! Thank you for the encouragement to push for more!! I am very thankful for this site because I would be going nuts without it.
I will keep updating ya!

Thank you again,
Amanda

 

[foreverworshiphim]

Scared and not sure where to go....UPDATED 4-2-10

Thank you Stacey very much! When we go to Denver she is actually having her sweat test at the certified CF clinic but I am going to go with your advice and push for the Ambry to be ordered. I hate how these doctors who you have trusted with your kids for years can make you feel crazy for asking them to check your kids out. She tried to convince me not to do the full panel because of the cost and that made me upset because there is no price that can be put on my sweet baby girl's life! Thank you for the encouragement to push for more!! I am very thankful for this site because I would be going nuts without it.
I will keep updating ya!

Thank you again,
Amanda

 

[foreverworshiphim]

Scared and not sure where to go....UPDATED 4-2-10

Thank you Stacey very much! When we go to Denver she is actually having her sweat test at the certified CF clinic but I am going to go with your advice and push for the Ambry to be ordered. I hate how these doctors who you have trusted with your kids for years can make you feel crazy for asking them to check your kids out. She tried to convince me not to do the full panel because of the cost and that made me upset because there is no price that can be put on my sweet baby girl's life! Thank you for the encouragement to push for more!! I am very thankful for this site because I would be going nuts without it.
<br />I will keep updating ya!
<br />
<br />Thank you again,
<br />Amanda