Confused about Flovent.....

[momja]

Thanks for your replies. It's comforting to know others are allowing their little ones to use this without seeing side effects. I do believe the Dr. is trying to rule out asthma but I'm so worried about all these tests and the effects they will have on my 15 month old. His regular ped comes back on the 28 of august and I can't wait to see what she thinks of all of this. I'm interested to know if she will want to run another sweat test. Too me it seems that if CF is uncommon in the family wouldn't the child carry more of the uncommon genes? I don't know. I just still know that something is up and not right.

I've used the inhaler two days in a row on him and so far I'm noticing more coughing (although I think he has more mucous lately). Does asthma involve a lot of mucous?
Again thanks for all your replies and support. Although we don't have a CF diagnosis this is the only site that's close to what my son's symptoms are.
Again thank you all.

 

[momja]

Thanks for your replies. It's comforting to know others are allowing their little ones to use this without seeing side effects. I do believe the Dr. is trying to rule out asthma but I'm so worried about all these tests and the effects they will have on my 15 month old. His regular ped comes back on the 28 of august and I can't wait to see what she thinks of all of this. I'm interested to know if she will want to run another sweat test. Too me it seems that if CF is uncommon in the family wouldn't the child carry more of the uncommon genes? I don't know. I just still know that something is up and not right.

I've used the inhaler two days in a row on him and so far I'm noticing more coughing (although I think he has more mucous lately). Does asthma involve a lot of mucous?
Again thanks for all your replies and support. Although we don't have a CF diagnosis this is the only site that's close to what my son's symptoms are.
Again thank you all.

 

[momja]

Thanks for your replies. It's comforting to know others are allowing their little ones to use this without seeing side effects. I do believe the Dr. is trying to rule out asthma but I'm so worried about all these tests and the effects they will have on my 15 month old. His regular ped comes back on the 28 of august and I can't wait to see what she thinks of all of this. I'm interested to know if she will want to run another sweat test. Too me it seems that if CF is uncommon in the family wouldn't the child carry more of the uncommon genes? I don't know. I just still know that something is up and not right.

I've used the inhaler two days in a row on him and so far I'm noticing more coughing (although I think he has more mucous lately). Does asthma involve a lot of mucous?
Again thanks for all your replies and support. Although we don't have a CF diagnosis this is the only site that's close to what my son's symptoms are.
Again thank you all.

 

[momja]

Thanks for your replies. It's comforting to know others are allowing their little ones to use this without seeing side effects. I do believe the Dr. is trying to rule out asthma but I'm so worried about all these tests and the effects they will have on my 15 month old. His regular ped comes back on the 28 of august and I can't wait to see what she thinks of all of this. I'm interested to know if she will want to run another sweat test. Too me it seems that if CF is uncommon in the family wouldn't the child carry more of the uncommon genes? I don't know. I just still know that something is up and not right.

I've used the inhaler two days in a row on him and so far I'm noticing more coughing (although I think he has more mucous lately). Does asthma involve a lot of mucous?
Again thanks for all your replies and support. Although we don't have a CF diagnosis this is the only site that's close to what my son's symptoms are.
Again thank you all.

 

[momja]

Thanks for your replies. It's comforting to know others are allowing their little ones to use this without seeing side effects. I do believe the Dr. is trying to rule out asthma but I'm so worried about all these tests and the effects they will have on my 15 month old. His regular ped comes back on the 28 of august and I can't wait to see what she thinks of all of this. I'm interested to know if she will want to run another sweat test. Too me it seems that if CF is uncommon in the family wouldn't the child carry more of the uncommon genes? I don't know. I just still know that something is up and not right.

I've used the inhaler two days in a row on him and so far I'm noticing more coughing (although I think he has more mucous lately). Does asthma involve a lot of mucous?
Again thanks for all your replies and support. Although we don't have a CF diagnosis this is the only site that's close to what my son's symptoms are.
Again thank you all.

 

[Alyssa]

uncommon in the family or an uncommon genes means absolutely nothing. The genes are recessive, and if two parents happen to be carriers and they both give off the CF gene to the pregnancy rather than the normal gene, the baby will have both CF genes. Each pregnancy has a one in four chance of that happening. I don't know how many carriers are out there (I'm sure the number is pretty high), but it is safe to say that many many people report no family history and no prior knowledge of being a carrier. There are over 1500 genes that cause CF, if a person has 2 of them they have CF (must get one from each parent - just like all gene pairs)

Your son is showing symptoms of CF, he should have a full genetic test to test for <b>all</b> CF genes. Keep pushing.

I do not know for sure about the mucus - asthma question.... I guess, based on what my daughter's initial (incorrect diagnosis) of asthma with productive cough, it must be possible for some people to have that only - problem is, in her case they were wrong. If your doctor is trying to rule out asthma, don't forget that it is possible to have both asthma and CF. <b>Also</b> allergies should be taken into account, a lot of people suffer some additional symptoms that compound and or mask CF symptoms because of allergic reaction to airborne stuff like pollen, pets & mold.

You are not alone, many mothers here know in their gut somethings not right - keep bugging your doctors until you get some answers.

 

[Alyssa]

uncommon in the family or an uncommon genes means absolutely nothing. The genes are recessive, and if two parents happen to be carriers and they both give off the CF gene to the pregnancy rather than the normal gene, the baby will have both CF genes. Each pregnancy has a one in four chance of that happening. I don't know how many carriers are out there (I'm sure the number is pretty high), but it is safe to say that many many people report no family history and no prior knowledge of being a carrier. There are over 1500 genes that cause CF, if a person has 2 of them they have CF (must get one from each parent - just like all gene pairs)

Your son is showing symptoms of CF, he should have a full genetic test to test for <b>all</b> CF genes. Keep pushing.

I do not know for sure about the mucus - asthma question.... I guess, based on what my daughter's initial (incorrect diagnosis) of asthma with productive cough, it must be possible for some people to have that only - problem is, in her case they were wrong. If your doctor is trying to rule out asthma, don't forget that it is possible to have both asthma and CF. <b>Also</b> allergies should be taken into account, a lot of people suffer some additional symptoms that compound and or mask CF symptoms because of allergic reaction to airborne stuff like pollen, pets & mold.

You are not alone, many mothers here know in their gut somethings not right - keep bugging your doctors until you get some answers.

 

[Alyssa]

uncommon in the family or an uncommon genes means absolutely nothing. The genes are recessive, and if two parents happen to be carriers and they both give off the CF gene to the pregnancy rather than the normal gene, the baby will have both CF genes. Each pregnancy has a one in four chance of that happening. I don't know how many carriers are out there (I'm sure the number is pretty high), but it is safe to say that many many people report no family history and no prior knowledge of being a carrier. There are over 1500 genes that cause CF, if a person has 2 of them they have CF (must get one from each parent - just like all gene pairs)

Your son is showing symptoms of CF, he should have a full genetic test to test for <b>all</b> CF genes. Keep pushing.

I do not know for sure about the mucus - asthma question.... I guess, based on what my daughter's initial (incorrect diagnosis) of asthma with productive cough, it must be possible for some people to have that only - problem is, in her case they were wrong. If your doctor is trying to rule out asthma, don't forget that it is possible to have both asthma and CF. <b>Also</b> allergies should be taken into account, a lot of people suffer some additional symptoms that compound and or mask CF symptoms because of allergic reaction to airborne stuff like pollen, pets & mold.

You are not alone, many mothers here know in their gut somethings not right - keep bugging your doctors until you get some answers.

 

[Alyssa]

uncommon in the family or an uncommon genes means absolutely nothing. The genes are recessive, and if two parents happen to be carriers and they both give off the CF gene to the pregnancy rather than the normal gene, the baby will have both CF genes. Each pregnancy has a one in four chance of that happening. I don't know how many carriers are out there (I'm sure the number is pretty high), but it is safe to say that many many people report no family history and no prior knowledge of being a carrier. There are over 1500 genes that cause CF, if a person has 2 of them they have CF (must get one from each parent - just like all gene pairs)

Your son is showing symptoms of CF, he should have a full genetic test to test for <b>all</b> CF genes. Keep pushing.

I do not know for sure about the mucus - asthma question.... I guess, based on what my daughter's initial (incorrect diagnosis) of asthma with productive cough, it must be possible for some people to have that only - problem is, in her case they were wrong. If your doctor is trying to rule out asthma, don't forget that it is possible to have both asthma and CF. <b>Also</b> allergies should be taken into account, a lot of people suffer some additional symptoms that compound and or mask CF symptoms because of allergic reaction to airborne stuff like pollen, pets & mold.

You are not alone, many mothers here know in their gut somethings not right - keep bugging your doctors until you get some answers.

 

[Alyssa]

uncommon in the family or an uncommon genes means absolutely nothing. The genes are recessive, and if two parents happen to be carriers and they both give off the CF gene to the pregnancy rather than the normal gene, the baby will have both CF genes. Each pregnancy has a one in four chance of that happening. I don't know how many carriers are out there (I'm sure the number is pretty high), but it is safe to say that many many people report no family history and no prior knowledge of being a carrier. There are over 1500 genes that cause CF, if a person has 2 of them they have CF (must get one from each parent - just like all gene pairs)

Your son is showing symptoms of CF, he should have a full genetic test to test for <b>all</b> CF genes. Keep pushing.

I do not know for sure about the mucus - asthma question.... I guess, based on what my daughter's initial (incorrect diagnosis) of asthma with productive cough, it must be possible for some people to have that only - problem is, in her case they were wrong. If your doctor is trying to rule out asthma, don't forget that it is possible to have both asthma and CF. <b>Also</b> allergies should be taken into account, a lot of people suffer some additional symptoms that compound and or mask CF symptoms because of allergic reaction to airborne stuff like pollen, pets & mold.

You are not alone, many mothers here know in their gut somethings not right - keep bugging your doctors until you get some answers.

 

[momja]

Thanks so much for all your replies. My DH and I finally agreed to getting a second opinion. There's just too much going on for too long with no answers.

We are going to someone who specializes in preventative medicine with peds.
We started to feel like they (His Dr and clinic) were running all the wrong tests just because our ins. covers them. I stressed the full panel and they wouldn't do it. Now here we are still no answers. Only that my son doesn't have one of the 70 common mutations. I don't know if he has CF but it seems to me he has something, or something isn't working right with his digestive system.

He eats a lot and his stomach bulges and he throws up, this isn't common but has happened a couple times in the last 2 months. We have him on high fat/cal diet and he continues to drop off the chart. Now as you can see from the title he is using an inhaler at night for a chronic cough. Do all these pieces make one puzzle complete or is there a couple of different things causing all of this....

Any input appreciated.

 

[momja]

Thanks so much for all your replies. My DH and I finally agreed to getting a second opinion. There's just too much going on for too long with no answers.

We are going to someone who specializes in preventative medicine with peds.
We started to feel like they (His Dr and clinic) were running all the wrong tests just because our ins. covers them. I stressed the full panel and they wouldn't do it. Now here we are still no answers. Only that my son doesn't have one of the 70 common mutations. I don't know if he has CF but it seems to me he has something, or something isn't working right with his digestive system.

He eats a lot and his stomach bulges and he throws up, this isn't common but has happened a couple times in the last 2 months. We have him on high fat/cal diet and he continues to drop off the chart. Now as you can see from the title he is using an inhaler at night for a chronic cough. Do all these pieces make one puzzle complete or is there a couple of different things causing all of this....

Any input appreciated.

 

[momja]

Thanks so much for all your replies. My DH and I finally agreed to getting a second opinion. There's just too much going on for too long with no answers.

We are going to someone who specializes in preventative medicine with peds.
We started to feel like they (His Dr and clinic) were running all the wrong tests just because our ins. covers them. I stressed the full panel and they wouldn't do it. Now here we are still no answers. Only that my son doesn't have one of the 70 common mutations. I don't know if he has CF but it seems to me he has something, or something isn't working right with his digestive system.

He eats a lot and his stomach bulges and he throws up, this isn't common but has happened a couple times in the last 2 months. We have him on high fat/cal diet and he continues to drop off the chart. Now as you can see from the title he is using an inhaler at night for a chronic cough. Do all these pieces make one puzzle complete or is there a couple of different things causing all of this....

Any input appreciated.

 

[momja]

Thanks so much for all your replies. My DH and I finally agreed to getting a second opinion. There's just too much going on for too long with no answers.

We are going to someone who specializes in preventative medicine with peds.
We started to feel like they (His Dr and clinic) were running all the wrong tests just because our ins. covers them. I stressed the full panel and they wouldn't do it. Now here we are still no answers. Only that my son doesn't have one of the 70 common mutations. I don't know if he has CF but it seems to me he has something, or something isn't working right with his digestive system.

He eats a lot and his stomach bulges and he throws up, this isn't common but has happened a couple times in the last 2 months. We have him on high fat/cal diet and he continues to drop off the chart. Now as you can see from the title he is using an inhaler at night for a chronic cough. Do all these pieces make one puzzle complete or is there a couple of different things causing all of this....

Any input appreciated.

 

[momja]

Thanks so much for all your replies. My DH and I finally agreed to getting a second opinion. There's just too much going on for too long with no answers.

We are going to someone who specializes in preventative medicine with peds.
We started to feel like they (His Dr and clinic) were running all the wrong tests just because our ins. covers them. I stressed the full panel and they wouldn't do it. Now here we are still no answers. Only that my son doesn't have one of the 70 common mutations. I don't know if he has CF but it seems to me he has something, or something isn't working right with his digestive system.

He eats a lot and his stomach bulges and he throws up, this isn't common but has happened a couple times in the last 2 months. We have him on high fat/cal diet and he continues to drop off the chart. Now as you can see from the title he is using an inhaler at night for a chronic cough. Do all these pieces make one puzzle complete or is there a couple of different things causing all of this....

Any input appreciated.

 

[Alyssa]

Well, the short answer is weight gain issues with high fat/calorie diet and lung problems sound like very classic CF problems.

Fact is that there are over 1,500 CF genes -- they tested for 70, common sense tells you that it is very possible to have missed two when they didn't even test for over 1,430 of them!!! Post a question to the Ambry guy on this site -- he can explain it better, but to my knowledge there are only about 2 or 3 genes that are very "common" all the other 1500 just hit out there.... I think that the only one that is present something like 60% of the time is the Delta F508, but other than that there isn't a line up of "most common genes" so my point is, don't let someone tell you that because they tested for 70 of them it's full proof -- it most certainly is not.

Yes, it is also possible to have several different things going on at the same time, but his CF like symptoms should certainly raise a few eyebrows, I would think.

You could spend a long time checking out other things, such as allergies (food and airborne), asthma, immune disorders, celiac disease, etc but when we have the technology to rule out 1500 gene possibilities for CF why not use it? All these other possibilities can be checked out too, but it just makes sense to me to know for sure you are not dealing with CF first.

 

[Alyssa]

Well, the short answer is weight gain issues with high fat/calorie diet and lung problems sound like very classic CF problems.

Fact is that there are over 1,500 CF genes -- they tested for 70, common sense tells you that it is very possible to have missed two when they didn't even test for over 1,430 of them!!! Post a question to the Ambry guy on this site -- he can explain it better, but to my knowledge there are only about 2 or 3 genes that are very "common" all the other 1500 just hit out there.... I think that the only one that is present something like 60% of the time is the Delta F508, but other than that there isn't a line up of "most common genes" so my point is, don't let someone tell you that because they tested for 70 of them it's full proof -- it most certainly is not.

Yes, it is also possible to have several different things going on at the same time, but his CF like symptoms should certainly raise a few eyebrows, I would think.

You could spend a long time checking out other things, such as allergies (food and airborne), asthma, immune disorders, celiac disease, etc but when we have the technology to rule out 1500 gene possibilities for CF why not use it? All these other possibilities can be checked out too, but it just makes sense to me to know for sure you are not dealing with CF first.

 

[Alyssa]

Well, the short answer is weight gain issues with high fat/calorie diet and lung problems sound like very classic CF problems.

Fact is that there are over 1,500 CF genes -- they tested for 70, common sense tells you that it is very possible to have missed two when they didn't even test for over 1,430 of them!!! Post a question to the Ambry guy on this site -- he can explain it better, but to my knowledge there are only about 2 or 3 genes that are very "common" all the other 1500 just hit out there.... I think that the only one that is present something like 60% of the time is the Delta F508, but other than that there isn't a line up of "most common genes" so my point is, don't let someone tell you that because they tested for 70 of them it's full proof -- it most certainly is not.

Yes, it is also possible to have several different things going on at the same time, but his CF like symptoms should certainly raise a few eyebrows, I would think.

You could spend a long time checking out other things, such as allergies (food and airborne), asthma, immune disorders, celiac disease, etc but when we have the technology to rule out 1500 gene possibilities for CF why not use it? All these other possibilities can be checked out too, but it just makes sense to me to know for sure you are not dealing with CF first.

 

[Alyssa]

Well, the short answer is weight gain issues with high fat/calorie diet and lung problems sound like very classic CF problems.

Fact is that there are over 1,500 CF genes -- they tested for 70, common sense tells you that it is very possible to have missed two when they didn't even test for over 1,430 of them!!! Post a question to the Ambry guy on this site -- he can explain it better, but to my knowledge there are only about 2 or 3 genes that are very "common" all the other 1500 just hit out there.... I think that the only one that is present something like 60% of the time is the Delta F508, but other than that there isn't a line up of "most common genes" so my point is, don't let someone tell you that because they tested for 70 of them it's full proof -- it most certainly is not.

Yes, it is also possible to have several different things going on at the same time, but his CF like symptoms should certainly raise a few eyebrows, I would think.

You could spend a long time checking out other things, such as allergies (food and airborne), asthma, immune disorders, celiac disease, etc but when we have the technology to rule out 1500 gene possibilities for CF why not use it? All these other possibilities can be checked out too, but it just makes sense to me to know for sure you are not dealing with CF first.

 

[Alyssa]

Well, the short answer is weight gain issues with high fat/calorie diet and lung problems sound like very classic CF problems.

Fact is that there are over 1,500 CF genes -- they tested for 70, common sense tells you that it is very possible to have missed two when they didn't even test for over 1,430 of them!!! Post a question to the Ambry guy on this site -- he can explain it better, but to my knowledge there are only about 2 or 3 genes that are very "common" all the other 1500 just hit out there.... I think that the only one that is present something like 60% of the time is the Delta F508, but other than that there isn't a line up of "most common genes" so my point is, don't let someone tell you that because they tested for 70 of them it's full proof -- it most certainly is not.

Yes, it is also possible to have several different things going on at the same time, but his CF like symptoms should certainly raise a few eyebrows, I would think.

You could spend a long time checking out other things, such as allergies (food and airborne), asthma, immune disorders, celiac disease, etc but when we have the technology to rule out 1500 gene possibilities for CF why not use it? All these other possibilities can be checked out too, but it just makes sense to me to know for sure you are not dealing with CF first.