You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
I am so confused!
- Thread starter nmcspadd
- Start date
M
Mommafirst
Guest
It sure sounds like CF to me. My daughter, who is MOSTLY pancreatic sufficient but falling into the insufficient range, takes the same things: creon, prevacid and albuterol. We use the albuterol daily, not as needed. And we also neb pulmozyme. But gosh, it sounds like your doc does think this is CF if the care list is the same. KWIM?
I think you are doing a great job advocating for your child, you are clearly well informed here. I would be surprised if your dd doesn't have 2 genes, but they may likely be one or two more rare (not on that 97 panel) because some of the more obscure ones seem to result in more normal sweat scores.
Ultimately, you deserve answers and your daughter deserves the best care. I hope you get those answers. YOu may want to start her on a regular CPT regimine (airway clearance) it may help her to do better in terms of daily breathing and future infections.
I think you are doing a great job advocating for your child, you are clearly well informed here. I would be surprised if your dd doesn't have 2 genes, but they may likely be one or two more rare (not on that 97 panel) because some of the more obscure ones seem to result in more normal sweat scores.
Ultimately, you deserve answers and your daughter deserves the best care. I hope you get those answers. YOu may want to start her on a regular CPT regimine (airway clearance) it may help her to do better in terms of daily breathing and future infections.
M
Mommafirst
Guest
It sure sounds like CF to me. My daughter, who is MOSTLY pancreatic sufficient but falling into the insufficient range, takes the same things: creon, prevacid and albuterol. We use the albuterol daily, not as needed. And we also neb pulmozyme. But gosh, it sounds like your doc does think this is CF if the care list is the same. KWIM?
I think you are doing a great job advocating for your child, you are clearly well informed here. I would be surprised if your dd doesn't have 2 genes, but they may likely be one or two more rare (not on that 97 panel) because some of the more obscure ones seem to result in more normal sweat scores.
Ultimately, you deserve answers and your daughter deserves the best care. I hope you get those answers. YOu may want to start her on a regular CPT regimine (airway clearance) it may help her to do better in terms of daily breathing and future infections.
I think you are doing a great job advocating for your child, you are clearly well informed here. I would be surprised if your dd doesn't have 2 genes, but they may likely be one or two more rare (not on that 97 panel) because some of the more obscure ones seem to result in more normal sweat scores.
Ultimately, you deserve answers and your daughter deserves the best care. I hope you get those answers. YOu may want to start her on a regular CPT regimine (airway clearance) it may help her to do better in terms of daily breathing and future infections.
M
Mommafirst
Guest
It sure sounds like CF to me. My daughter, who is MOSTLY pancreatic sufficient but falling into the insufficient range, takes the same things: creon, prevacid and albuterol. We use the albuterol daily, not as needed. And we also neb pulmozyme. But gosh, it sounds like your doc does think this is CF if the care list is the same. KWIM?
I think you are doing a great job advocating for your child, you are clearly well informed here. I would be surprised if your dd doesn't have 2 genes, but they may likely be one or two more rare (not on that 97 panel) because some of the more obscure ones seem to result in more normal sweat scores.
Ultimately, you deserve answers and your daughter deserves the best care. I hope you get those answers. YOu may want to start her on a regular CPT regimine (airway clearance) it may help her to do better in terms of daily breathing and future infections.
I think you are doing a great job advocating for your child, you are clearly well informed here. I would be surprised if your dd doesn't have 2 genes, but they may likely be one or two more rare (not on that 97 panel) because some of the more obscure ones seem to result in more normal sweat scores.
Ultimately, you deserve answers and your daughter deserves the best care. I hope you get those answers. YOu may want to start her on a regular CPT regimine (airway clearance) it may help her to do better in terms of daily breathing and future infections.
M
Mommafirst
Guest
It sure sounds like CF to me. My daughter, who is MOSTLY pancreatic sufficient but falling into the insufficient range, takes the same things: creon, prevacid and albuterol. We use the albuterol daily, not as needed. And we also neb pulmozyme. But gosh, it sounds like your doc does think this is CF if the care list is the same. KWIM?
I think you are doing a great job advocating for your child, you are clearly well informed here. I would be surprised if your dd doesn't have 2 genes, but they may likely be one or two more rare (not on that 97 panel) because some of the more obscure ones seem to result in more normal sweat scores.
Ultimately, you deserve answers and your daughter deserves the best care. I hope you get those answers. YOu may want to start her on a regular CPT regimine (airway clearance) it may help her to do better in terms of daily breathing and future infections.
I think you are doing a great job advocating for your child, you are clearly well informed here. I would be surprised if your dd doesn't have 2 genes, but they may likely be one or two more rare (not on that 97 panel) because some of the more obscure ones seem to result in more normal sweat scores.
Ultimately, you deserve answers and your daughter deserves the best care. I hope you get those answers. YOu may want to start her on a regular CPT regimine (airway clearance) it may help her to do better in terms of daily breathing and future infections.
M
Mommafirst
Guest
It sure sounds like CF to me. My daughter, who is MOSTLY pancreatic sufficient but falling into the insufficient range, takes the same things: creon, prevacid and albuterol. We use the albuterol daily, not as needed. And we also neb pulmozyme. But gosh, it sounds like your doc does think this is CF if the care list is the same. KWIM?
<br />
<br />I think you are doing a great job advocating for your child, you are clearly well informed here. I would be surprised if your dd doesn't have 2 genes, but they may likely be one or two more rare (not on that 97 panel) because some of the more obscure ones seem to result in more normal sweat scores.
<br />
<br />Ultimately, you deserve answers and your daughter deserves the best care. I hope you get those answers. YOu may want to start her on a regular CPT regimine (airway clearance) it may help her to do better in terms of daily breathing and future infections.
<br />
<br />I think you are doing a great job advocating for your child, you are clearly well informed here. I would be surprised if your dd doesn't have 2 genes, but they may likely be one or two more rare (not on that 97 panel) because some of the more obscure ones seem to result in more normal sweat scores.
<br />
<br />Ultimately, you deserve answers and your daughter deserves the best care. I hope you get those answers. YOu may want to start her on a regular CPT regimine (airway clearance) it may help her to do better in terms of daily breathing and future infections.
While you wait for a diagnosis, the only other thing I do, for my son who does have CF, is give him percussions every morning and every evening, to help loosen and move the mucus out of his lungs. I think any small child would benefit from percussions if they were fighting any kind of lung infection. I think there are video posts that show how to do it... it's pretty straight forward. Maybe you could ask a physiotherapist to show you the method.
Oh... there is supplementation of the fat soluble vitamins as well... A,D, E, and K. You could read up on these vitamins and what foods have them to feed him.
Of course, I also make every attempt to feed my son well, to keep his immune system strong, so he can fight off bacteria and viruses. Almost no refined sugars, very little dairy, lots of veggies, freshly ground flax seed, and probiotics to name a few practices.
Good luck... never back down!
Oh... there is supplementation of the fat soluble vitamins as well... A,D, E, and K. You could read up on these vitamins and what foods have them to feed him.
Of course, I also make every attempt to feed my son well, to keep his immune system strong, so he can fight off bacteria and viruses. Almost no refined sugars, very little dairy, lots of veggies, freshly ground flax seed, and probiotics to name a few practices.
Good luck... never back down!
While you wait for a diagnosis, the only other thing I do, for my son who does have CF, is give him percussions every morning and every evening, to help loosen and move the mucus out of his lungs. I think any small child would benefit from percussions if they were fighting any kind of lung infection. I think there are video posts that show how to do it... it's pretty straight forward. Maybe you could ask a physiotherapist to show you the method.
Oh... there is supplementation of the fat soluble vitamins as well... A,D, E, and K. You could read up on these vitamins and what foods have them to feed him.
Of course, I also make every attempt to feed my son well, to keep his immune system strong, so he can fight off bacteria and viruses. Almost no refined sugars, very little dairy, lots of veggies, freshly ground flax seed, and probiotics to name a few practices.
Good luck... never back down!
Oh... there is supplementation of the fat soluble vitamins as well... A,D, E, and K. You could read up on these vitamins and what foods have them to feed him.
Of course, I also make every attempt to feed my son well, to keep his immune system strong, so he can fight off bacteria and viruses. Almost no refined sugars, very little dairy, lots of veggies, freshly ground flax seed, and probiotics to name a few practices.
Good luck... never back down!
While you wait for a diagnosis, the only other thing I do, for my son who does have CF, is give him percussions every morning and every evening, to help loosen and move the mucus out of his lungs. I think any small child would benefit from percussions if they were fighting any kind of lung infection. I think there are video posts that show how to do it... it's pretty straight forward. Maybe you could ask a physiotherapist to show you the method.
Oh... there is supplementation of the fat soluble vitamins as well... A,D, E, and K. You could read up on these vitamins and what foods have them to feed him.
Of course, I also make every attempt to feed my son well, to keep his immune system strong, so he can fight off bacteria and viruses. Almost no refined sugars, very little dairy, lots of veggies, freshly ground flax seed, and probiotics to name a few practices.
Good luck... never back down!
Oh... there is supplementation of the fat soluble vitamins as well... A,D, E, and K. You could read up on these vitamins and what foods have them to feed him.
Of course, I also make every attempt to feed my son well, to keep his immune system strong, so he can fight off bacteria and viruses. Almost no refined sugars, very little dairy, lots of veggies, freshly ground flax seed, and probiotics to name a few practices.
Good luck... never back down!
While you wait for a diagnosis, the only other thing I do, for my son who does have CF, is give him percussions every morning and every evening, to help loosen and move the mucus out of his lungs. I think any small child would benefit from percussions if they were fighting any kind of lung infection. I think there are video posts that show how to do it... it's pretty straight forward. Maybe you could ask a physiotherapist to show you the method.
Oh... there is supplementation of the fat soluble vitamins as well... A,D, E, and K. You could read up on these vitamins and what foods have them to feed him.
Of course, I also make every attempt to feed my son well, to keep his immune system strong, so he can fight off bacteria and viruses. Almost no refined sugars, very little dairy, lots of veggies, freshly ground flax seed, and probiotics to name a few practices.
Good luck... never back down!
Oh... there is supplementation of the fat soluble vitamins as well... A,D, E, and K. You could read up on these vitamins and what foods have them to feed him.
Of course, I also make every attempt to feed my son well, to keep his immune system strong, so he can fight off bacteria and viruses. Almost no refined sugars, very little dairy, lots of veggies, freshly ground flax seed, and probiotics to name a few practices.
Good luck... never back down!
While you wait for a diagnosis, the only other thing I do, for my son who does have CF, is give him percussions every morning and every evening, to help loosen and move the mucus out of his lungs. I think any small child would benefit from percussions if they were fighting any kind of lung infection. I think there are video posts that show how to do it... it's pretty straight forward. Maybe you could ask a physiotherapist to show you the method.
Oh... there is supplementation of the fat soluble vitamins as well... A,D, E, and K. You could read up on these vitamins and what foods have them to feed him.
Of course, I also make every attempt to feed my son well, to keep his immune system strong, so he can fight off bacteria and viruses. Almost no refined sugars, very little dairy, lots of veggies, freshly ground flax seed, and probiotics to name a few practices.
Good luck... never back down!
Oh... there is supplementation of the fat soluble vitamins as well... A,D, E, and K. You could read up on these vitamins and what foods have them to feed him.
Of course, I also make every attempt to feed my son well, to keep his immune system strong, so he can fight off bacteria and viruses. Almost no refined sugars, very little dairy, lots of veggies, freshly ground flax seed, and probiotics to name a few practices.
Good luck... never back down!
Hi Nadine. Welcome to the site. I'm glad your doc is doing the dna test. I would push for the full panel though. There are over 1500 known CF mutations, so testing for only 97 of them is just not adequate in my opinion. Sweat tests can give false negatives, and there are many members here who have very low sweat test scores, but have two gene mutations.
Please keep us posted on what you find out.
Stacey
Please keep us posted on what you find out.
Stacey
Hi Nadine. Welcome to the site. I'm glad your doc is doing the dna test. I would push for the full panel though. There are over 1500 known CF mutations, so testing for only 97 of them is just not adequate in my opinion. Sweat tests can give false negatives, and there are many members here who have very low sweat test scores, but have two gene mutations.
Please keep us posted on what you find out.
Stacey
Please keep us posted on what you find out.
Stacey
Hi Nadine. Welcome to the site. I'm glad your doc is doing the dna test. I would push for the full panel though. There are over 1500 known CF mutations, so testing for only 97 of them is just not adequate in my opinion. Sweat tests can give false negatives, and there are many members here who have very low sweat test scores, but have two gene mutations.
Please keep us posted on what you find out.
Stacey
Please keep us posted on what you find out.
Stacey
Hi Nadine. Welcome to the site. I'm glad your doc is doing the dna test. I would push for the full panel though. There are over 1500 known CF mutations, so testing for only 97 of them is just not adequate in my opinion. Sweat tests can give false negatives, and there are many members here who have very low sweat test scores, but have two gene mutations.
Please keep us posted on what you find out.
Stacey
Please keep us posted on what you find out.
Stacey
Hi Nadine. Welcome to the site. I'm glad your doc is doing the dna test. I would push for the full panel though. There are over 1500 known CF mutations, so testing for only 97 of them is just not adequate in my opinion. Sweat tests can give false negatives, and there are many members here who have very low sweat test scores, but have two gene mutations.
<br />
<br />Please keep us posted on what you find out.
<br />
<br />Stacey
<br />
<br />Please keep us posted on what you find out.
<br />
<br />Stacey