SCARED,need to know more about other kids FEV1#s

[saveferris2009]

1. Get a 2nd opinion from another CF center if you aren't happy with her treatment (I've done it several times and I've always been so happy I did it)

2. Sometimes the GERD med dose is too low - I recently had horrendous night sweats and as it turns as, like Mel mentioned, I had noctural aspiration of gastric juice. I doubled my PPI dose and it went away, literally over night.

3. Have you had allergy testing? Do you have a HEPA filter in her room? Dust might covers on her mattress, pillows? Dust mite treatments on the carpet? Details of all of this on my blog if you want to explore that option

4. my FEV1 is about 95% (very rare though, at my age I admit). Part of it is luck, part of it was extremely aggressive treatment by my peds clinic when I was younger, uber compliant parents, and getting a strong hold on my allergies from the time I was about 8 on.

i know my FEV1 would be 20 or 30 points lower if I didn't treat my allergies


5. Is she on a steroid inhaler (flovent, advair, etc)? those can help a ton

6. look into nebulized cromolyn sodium.

7. Not sure if you've read the Warwick article, but if you haven't, this will give you extra inspiration. His patients live well over a decade longer, on average, than the US average.

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a>

take care

 

[saveferris2009]

1. Get a 2nd opinion from another CF center if you aren't happy with her treatment (I've done it several times and I've always been so happy I did it)

2. Sometimes the GERD med dose is too low - I recently had horrendous night sweats and as it turns as, like Mel mentioned, I had noctural aspiration of gastric juice. I doubled my PPI dose and it went away, literally over night.

3. Have you had allergy testing? Do you have a HEPA filter in her room? Dust might covers on her mattress, pillows? Dust mite treatments on the carpet? Details of all of this on my blog if you want to explore that option

4. my FEV1 is about 95% (very rare though, at my age I admit). Part of it is luck, part of it was extremely aggressive treatment by my peds clinic when I was younger, uber compliant parents, and getting a strong hold on my allergies from the time I was about 8 on.

i know my FEV1 would be 20 or 30 points lower if I didn't treat my allergies


5. Is she on a steroid inhaler (flovent, advair, etc)? those can help a ton

6. look into nebulized cromolyn sodium.

7. Not sure if you've read the Warwick article, but if you haven't, this will give you extra inspiration. His patients live well over a decade longer, on average, than the US average.

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a>

take care

 

[saveferris2009]

1. Get a 2nd opinion from another CF center if you aren't happy with her treatment (I've done it several times and I've always been so happy I did it)

2. Sometimes the GERD med dose is too low - I recently had horrendous night sweats and as it turns as, like Mel mentioned, I had noctural aspiration of gastric juice. I doubled my PPI dose and it went away, literally over night.

3. Have you had allergy testing? Do you have a HEPA filter in her room? Dust might covers on her mattress, pillows? Dust mite treatments on the carpet? Details of all of this on my blog if you want to explore that option

4. my FEV1 is about 95% (very rare though, at my age I admit). Part of it is luck, part of it was extremely aggressive treatment by my peds clinic when I was younger, uber compliant parents, and getting a strong hold on my allergies from the time I was about 8 on.

i know my FEV1 would be 20 or 30 points lower if I didn't treat my allergies


5. Is she on a steroid inhaler (flovent, advair, etc)? those can help a ton

6. look into nebulized cromolyn sodium.

7. Not sure if you've read the Warwick article, but if you haven't, this will give you extra inspiration. His patients live well over a decade longer, on average, than the US average.

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a>

take care

 

[saveferris2009]

1. Get a 2nd opinion from another CF center if you aren't happy with her treatment (I've done it several times and I've always been so happy I did it)

2. Sometimes the GERD med dose is too low - I recently had horrendous night sweats and as it turns as, like Mel mentioned, I had noctural aspiration of gastric juice. I doubled my PPI dose and it went away, literally over night.

3. Have you had allergy testing? Do you have a HEPA filter in her room? Dust might covers on her mattress, pillows? Dust mite treatments on the carpet? Details of all of this on my blog if you want to explore that option

4. my FEV1 is about 95% (very rare though, at my age I admit). Part of it is luck, part of it was extremely aggressive treatment by my peds clinic when I was younger, uber compliant parents, and getting a strong hold on my allergies from the time I was about 8 on.

i know my FEV1 would be 20 or 30 points lower if I didn't treat my allergies


5. Is she on a steroid inhaler (flovent, advair, etc)? those can help a ton

6. look into nebulized cromolyn sodium.

7. Not sure if you've read the Warwick article, but if you haven't, this will give you extra inspiration. His patients live well over a decade longer, on average, than the US average.

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a>

take care

 

[saveferris2009]

1. Get a 2nd opinion from another CF center if you aren't happy with her treatment (I've done it several times and I've always been so happy I did it)
<br />
<br />2. Sometimes the GERD med dose is too low - I recently had horrendous night sweats and as it turns as, like Mel mentioned, I had noctural aspiration of gastric juice. I doubled my PPI dose and it went away, literally over night.
<br />
<br />3. Have you had allergy testing? Do you have a HEPA filter in her room? Dust might covers on her mattress, pillows? Dust mite treatments on the carpet? Details of all of this on my blog if you want to explore that option
<br />
<br />4. my FEV1 is about 95% (very rare though, at my age I admit). Part of it is luck, part of it was extremely aggressive treatment by my peds clinic when I was younger, uber compliant parents, and getting a strong hold on my allergies from the time I was about 8 on.
<br />
<br />i know my FEV1 would be 20 or 30 points lower if I didn't treat my allergies
<br />
<br />
<br />5. Is she on a steroid inhaler (flovent, advair, etc)? those can help a ton
<br />
<br />6. look into nebulized cromolyn sodium.
<br />
<br />7. Not sure if you've read the Warwick article, but if you haven't, this will give you extra inspiration. His patients live well over a decade longer, on average, than the US average.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a><br />
<br />
<br />take care

 

[MaksNana]

Hello Jennifer,
Your sweetpea21, fits you perfectly..Thankyou for sharing your info with me.I'm so sorry you have had a rough bump the pass 4 years....When you said you don't have any useful advice,,,just saying something is very nice,and helps alot....So thankyou,,and I'll keep you in my prayers and close to my heart.I'm so glad your PFT's are cimbing back up ( I know you said slowly)...
A great person to chat with and goofy, and will surely keep your hopes up is "jazzysmom", Melissa...She really cares about evreyone...

Hey Melissa,
Speaking about 'flies on poop', thankyou for responding...
About the cookie thing,,,I was talking about that maybe I should have her eat in front of them ,,,to show the doctors how bad it is when she eats(choking).Her mucous is so bad that she'll choke on icecream..All this started was about the same time her PFT'S started dropping..I don't know if this is normal for her to gag so much when she's trying to eat or not??
Do you mind me asking if you have a girl or a boy,, and what age is your child? Thankyou,, for sharing your PFT'S with me,,,,,and you are amazing!!

Hi saveferris2009,
Thankyou,for all the info,,I will check out your website..
She is now an advair,,,which I think that is helping because we have a peak flow meter at home because of her asthma,and it can tell us if she needs more xopenex..I have noticed that her peak flow has increased since she has been on th advair. I know it's not like doing the PFT'S, but I'm hoping it will bring them up..
I am one of those clean crazy's, and I know I'm not superwomen (I learned the hard way),but I try my BEST..
I've not heard of the cromolyn,,well I've heard of it, but never have been told what it was for,, they did start the hypertonic saline also.We have not had her allergy tested,, which I don't know why they havn't especially because of all her sinus problems and infections..
I havn't heard of having the carpet treated for dust mites,I will check into that...When I had my house I had all hardwood floors,,, I hate having carpet,,because I know it's better to not have it,,but now I'm leasing and there's only so much I can do...On house filters,, I change every 2 weeks with the best ones I can find...
I used to have one of those big hepa machines for years and it finally gave out. I hadn't been able to afford another one...
One thing you mentioned was about you having night sweats..Makailyn will be soaked in sweat within 10 mins of her sleeping,,,I assumed this was normal,,but I guess it's not..I'v told the doctors before and they acted like,Ok,daa..I think I will bring it up again to them..
It's great your numbers are so good,,,,I'm looking forward into looking into the web info,,,,thankyou again,Karla

 

[MaksNana]

Hello Jennifer,
Your sweetpea21, fits you perfectly..Thankyou for sharing your info with me.I'm so sorry you have had a rough bump the pass 4 years....When you said you don't have any useful advice,,,just saying something is very nice,and helps alot....So thankyou,,and I'll keep you in my prayers and close to my heart.I'm so glad your PFT's are cimbing back up ( I know you said slowly)...
A great person to chat with and goofy, and will surely keep your hopes up is "jazzysmom", Melissa...She really cares about evreyone...

Hey Melissa,
Speaking about 'flies on poop', thankyou for responding...
About the cookie thing,,,I was talking about that maybe I should have her eat in front of them ,,,to show the doctors how bad it is when she eats(choking).Her mucous is so bad that she'll choke on icecream..All this started was about the same time her PFT'S started dropping..I don't know if this is normal for her to gag so much when she's trying to eat or not??
Do you mind me asking if you have a girl or a boy,, and what age is your child? Thankyou,, for sharing your PFT'S with me,,,,,and you are amazing!!

Hi saveferris2009,
Thankyou,for all the info,,I will check out your website..
She is now an advair,,,which I think that is helping because we have a peak flow meter at home because of her asthma,and it can tell us if she needs more xopenex..I have noticed that her peak flow has increased since she has been on th advair. I know it's not like doing the PFT'S, but I'm hoping it will bring them up..
I am one of those clean crazy's, and I know I'm not superwomen (I learned the hard way),but I try my BEST..
I've not heard of the cromolyn,,well I've heard of it, but never have been told what it was for,, they did start the hypertonic saline also.We have not had her allergy tested,, which I don't know why they havn't especially because of all her sinus problems and infections..
I havn't heard of having the carpet treated for dust mites,I will check into that...When I had my house I had all hardwood floors,,, I hate having carpet,,because I know it's better to not have it,,but now I'm leasing and there's only so much I can do...On house filters,, I change every 2 weeks with the best ones I can find...
I used to have one of those big hepa machines for years and it finally gave out. I hadn't been able to afford another one...
One thing you mentioned was about you having night sweats..Makailyn will be soaked in sweat within 10 mins of her sleeping,,,I assumed this was normal,,but I guess it's not..I'v told the doctors before and they acted like,Ok,daa..I think I will bring it up again to them..
It's great your numbers are so good,,,,I'm looking forward into looking into the web info,,,,thankyou again,Karla

 

[MaksNana]

Hello Jennifer,
Your sweetpea21, fits you perfectly..Thankyou for sharing your info with me.I'm so sorry you have had a rough bump the pass 4 years....When you said you don't have any useful advice,,,just saying something is very nice,and helps alot....So thankyou,,and I'll keep you in my prayers and close to my heart.I'm so glad your PFT's are cimbing back up ( I know you said slowly)...
A great person to chat with and goofy, and will surely keep your hopes up is "jazzysmom", Melissa...She really cares about evreyone...

Hey Melissa,
Speaking about 'flies on poop', thankyou for responding...
About the cookie thing,,,I was talking about that maybe I should have her eat in front of them ,,,to show the doctors how bad it is when she eats(choking).Her mucous is so bad that she'll choke on icecream..All this started was about the same time her PFT'S started dropping..I don't know if this is normal for her to gag so much when she's trying to eat or not??
Do you mind me asking if you have a girl or a boy,, and what age is your child? Thankyou,, for sharing your PFT'S with me,,,,,and you are amazing!!

Hi saveferris2009,
Thankyou,for all the info,,I will check out your website..
She is now an advair,,,which I think that is helping because we have a peak flow meter at home because of her asthma,and it can tell us if she needs more xopenex..I have noticed that her peak flow has increased since she has been on th advair. I know it's not like doing the PFT'S, but I'm hoping it will bring them up..
I am one of those clean crazy's, and I know I'm not superwomen (I learned the hard way),but I try my BEST..
I've not heard of the cromolyn,,well I've heard of it, but never have been told what it was for,, they did start the hypertonic saline also.We have not had her allergy tested,, which I don't know why they havn't especially because of all her sinus problems and infections..
I havn't heard of having the carpet treated for dust mites,I will check into that...When I had my house I had all hardwood floors,,, I hate having carpet,,because I know it's better to not have it,,but now I'm leasing and there's only so much I can do...On house filters,, I change every 2 weeks with the best ones I can find...
I used to have one of those big hepa machines for years and it finally gave out. I hadn't been able to afford another one...
One thing you mentioned was about you having night sweats..Makailyn will be soaked in sweat within 10 mins of her sleeping,,,I assumed this was normal,,but I guess it's not..I'v told the doctors before and they acted like,Ok,daa..I think I will bring it up again to them..
It's great your numbers are so good,,,,I'm looking forward into looking into the web info,,,,thankyou again,Karla

 

[MaksNana]

Hello Jennifer,
Your sweetpea21, fits you perfectly..Thankyou for sharing your info with me.I'm so sorry you have had a rough bump the pass 4 years....When you said you don't have any useful advice,,,just saying something is very nice,and helps alot....So thankyou,,and I'll keep you in my prayers and close to my heart.I'm so glad your PFT's are cimbing back up ( I know you said slowly)...
A great person to chat with and goofy, and will surely keep your hopes up is "jazzysmom", Melissa...She really cares about evreyone...

Hey Melissa,
Speaking about 'flies on poop', thankyou for responding...
About the cookie thing,,,I was talking about that maybe I should have her eat in front of them ,,,to show the doctors how bad it is when she eats(choking).Her mucous is so bad that she'll choke on icecream..All this started was about the same time her PFT'S started dropping..I don't know if this is normal for her to gag so much when she's trying to eat or not??
Do you mind me asking if you have a girl or a boy,, and what age is your child? Thankyou,, for sharing your PFT'S with me,,,,,and you are amazing!!

Hi saveferris2009,
Thankyou,for all the info,,I will check out your website..
She is now an advair,,,which I think that is helping because we have a peak flow meter at home because of her asthma,and it can tell us if she needs more xopenex..I have noticed that her peak flow has increased since she has been on th advair. I know it's not like doing the PFT'S, but I'm hoping it will bring them up..
I am one of those clean crazy's, and I know I'm not superwomen (I learned the hard way),but I try my BEST..
I've not heard of the cromolyn,,well I've heard of it, but never have been told what it was for,, they did start the hypertonic saline also.We have not had her allergy tested,, which I don't know why they havn't especially because of all her sinus problems and infections..
I havn't heard of having the carpet treated for dust mites,I will check into that...When I had my house I had all hardwood floors,,, I hate having carpet,,because I know it's better to not have it,,but now I'm leasing and there's only so much I can do...On house filters,, I change every 2 weeks with the best ones I can find...
I used to have one of those big hepa machines for years and it finally gave out. I hadn't been able to afford another one...
One thing you mentioned was about you having night sweats..Makailyn will be soaked in sweat within 10 mins of her sleeping,,,I assumed this was normal,,but I guess it's not..I'v told the doctors before and they acted like,Ok,daa..I think I will bring it up again to them..
It's great your numbers are so good,,,,I'm looking forward into looking into the web info,,,,thankyou again,Karla

 

[MaksNana]

Hello Jennifer,
<br />Your sweetpea21, fits you perfectly..Thankyou for sharing your info with me.I'm so sorry you have had a rough bump the pass 4 years....When you said you don't have any useful advice,,,just saying something is very nice,and helps alot....So thankyou,,and I'll keep you in my prayers and close to my heart.I'm so glad your PFT's are cimbing back up ( I know you said slowly)...
<br />A great person to chat with and goofy, and will surely keep your hopes up is "jazzysmom", Melissa...She really cares about evreyone...
<br />
<br />Hey Melissa,
<br />Speaking about 'flies on poop', thankyou for responding...
<br />About the cookie thing,,,I was talking about that maybe I should have her eat in front of them ,,,to show the doctors how bad it is when she eats(choking).Her mucous is so bad that she'll choke on icecream..All this started was about the same time her PFT'S started dropping..I don't know if this is normal for her to gag so much when she's trying to eat or not??
<br />Do you mind me asking if you have a girl or a boy,, and what age is your child? Thankyou,, for sharing your PFT'S with me,,,,,and you are amazing!!
<br />
<br />Hi saveferris2009,
<br />Thankyou,for all the info,,I will check out your website..
<br />She is now an advair,,,which I think that is helping because we have a peak flow meter at home because of her asthma,and it can tell us if she needs more xopenex..I have noticed that her peak flow has increased since she has been on th advair. I know it's not like doing the PFT'S, but I'm hoping it will bring them up..
<br />I am one of those clean crazy's, and I know I'm not superwomen (I learned the hard way),but I try my BEST..
<br />I've not heard of the cromolyn,,well I've heard of it, but never have been told what it was for,, they did start the hypertonic saline also.We have not had her allergy tested,, which I don't know why they havn't especially because of all her sinus problems and infections..
<br />I havn't heard of having the carpet treated for dust mites,I will check into that...When I had my house I had all hardwood floors,,, I hate having carpet,,because I know it's better to not have it,,but now I'm leasing and there's only so much I can do...On house filters,, I change every 2 weeks with the best ones I can find...
<br />I used to have one of those big hepa machines for years and it finally gave out. I hadn't been able to afford another one...
<br />One thing you mentioned was about you having night sweats..Makailyn will be soaked in sweat within 10 mins of her sleeping,,,I assumed this was normal,,but I guess it's not..I'v told the doctors before and they acted like,Ok,daa..I think I will bring it up again to them..
<br />It's great your numbers are so good,,,,I'm looking forward into looking into the web info,,,,thankyou again,Karla
<br />

 

[ReneeP]

Hi Karla,

So sorry for all you are going through. I went through a similar experience with my daughter a couple of years ago. She got sick and her PFT's dropped considerably. Her entire PFT's dropped, but, like in your situation, the largest drop was in the small airways. Kaitlyn's went down to 18% at one point. (small airways, not FEV1).

Anyhow, it was a long story and I don't know how to link you to it, but you can read my post if you search for it. It was titled "Need help dealing with all this" and was dated 12/18/07. Also, be sure to read the update I posted in February as it shows the unexpected improvement she had.

Best wishes to you and your family!

 

[ReneeP]

Hi Karla,

So sorry for all you are going through. I went through a similar experience with my daughter a couple of years ago. She got sick and her PFT's dropped considerably. Her entire PFT's dropped, but, like in your situation, the largest drop was in the small airways. Kaitlyn's went down to 18% at one point. (small airways, not FEV1).

Anyhow, it was a long story and I don't know how to link you to it, but you can read my post if you search for it. It was titled "Need help dealing with all this" and was dated 12/18/07. Also, be sure to read the update I posted in February as it shows the unexpected improvement she had.

Best wishes to you and your family!

 

[ReneeP]

Hi Karla,

So sorry for all you are going through. I went through a similar experience with my daughter a couple of years ago. She got sick and her PFT's dropped considerably. Her entire PFT's dropped, but, like in your situation, the largest drop was in the small airways. Kaitlyn's went down to 18% at one point. (small airways, not FEV1).

Anyhow, it was a long story and I don't know how to link you to it, but you can read my post if you search for it. It was titled "Need help dealing with all this" and was dated 12/18/07. Also, be sure to read the update I posted in February as it shows the unexpected improvement she had.

Best wishes to you and your family!

 

[ReneeP]

Hi Karla,

So sorry for all you are going through. I went through a similar experience with my daughter a couple of years ago. She got sick and her PFT's dropped considerably. Her entire PFT's dropped, but, like in your situation, the largest drop was in the small airways. Kaitlyn's went down to 18% at one point. (small airways, not FEV1).

Anyhow, it was a long story and I don't know how to link you to it, but you can read my post if you search for it. It was titled "Need help dealing with all this" and was dated 12/18/07. Also, be sure to read the update I posted in February as it shows the unexpected improvement she had.

Best wishes to you and your family!

 

[ReneeP]

Hi Karla,
<br />
<br />So sorry for all you are going through. I went through a similar experience with my daughter a couple of years ago. She got sick and her PFT's dropped considerably. Her entire PFT's dropped, but, like in your situation, the largest drop was in the small airways. Kaitlyn's went down to 18% at one point. (small airways, not FEV1).
<br />
<br />Anyhow, it was a long story and I don't know how to link you to it, but you can read my post if you search for it. It was titled "Need help dealing with all this" and was dated 12/18/07. Also, be sure to read the update I posted in February as it shows the unexpected improvement she had.
<br />
<br />Best wishes to you and your family!

 

[JazzysMom]

Karla...

I have an 11 year old daughter who is now taller then me, wears a bigger shoe size then me & fits into most of my clothes already <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Regarding the cookie....I "kind of" understand the choking type thing except I wouldnt call it choking. Whenever I eat ANYTHING I have to wet it down before I swallow it. My husband says I am like a raccoon because they do that. I dont like peanut butter or "dry" things normally for this reason. Just wondering if she is experiencing the same sensation. Does she wet her food? If not maybe have her drink something when she takes a bite of cookie etc & just see if it makes a difference.

I am kind of guessing here, but it popped into my head!

 

[JazzysMom]

Karla...

I have an 11 year old daughter who is now taller then me, wears a bigger shoe size then me & fits into most of my clothes already <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Regarding the cookie....I "kind of" understand the choking type thing except I wouldnt call it choking. Whenever I eat ANYTHING I have to wet it down before I swallow it. My husband says I am like a raccoon because they do that. I dont like peanut butter or "dry" things normally for this reason. Just wondering if she is experiencing the same sensation. Does she wet her food? If not maybe have her drink something when she takes a bite of cookie etc & just see if it makes a difference.

I am kind of guessing here, but it popped into my head!

 

[JazzysMom]

Karla...

I have an 11 year old daughter who is now taller then me, wears a bigger shoe size then me & fits into most of my clothes already <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Regarding the cookie....I "kind of" understand the choking type thing except I wouldnt call it choking. Whenever I eat ANYTHING I have to wet it down before I swallow it. My husband says I am like a raccoon because they do that. I dont like peanut butter or "dry" things normally for this reason. Just wondering if she is experiencing the same sensation. Does she wet her food? If not maybe have her drink something when she takes a bite of cookie etc & just see if it makes a difference.

I am kind of guessing here, but it popped into my head!

 

[JazzysMom]

Karla...

I have an 11 year old daughter who is now taller then me, wears a bigger shoe size then me & fits into most of my clothes already <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Regarding the cookie....I "kind of" understand the choking type thing except I wouldnt call it choking. Whenever I eat ANYTHING I have to wet it down before I swallow it. My husband says I am like a raccoon because they do that. I dont like peanut butter or "dry" things normally for this reason. Just wondering if she is experiencing the same sensation. Does she wet her food? If not maybe have her drink something when she takes a bite of cookie etc & just see if it makes a difference.

I am kind of guessing here, but it popped into my head!

 

[JazzysMom]

Karla...
<br />
<br />I have an 11 year old daughter who is now taller then me, wears a bigger shoe size then me & fits into most of my clothes already <img src="i/expressions/face-icon-small-tongue.gif" border="0">
<br />
<br />Regarding the cookie....I "kind of" understand the choking type thing except I wouldnt call it choking. Whenever I eat ANYTHING I have to wet it down before I swallow it. My husband says I am like a raccoon because they do that. I dont like peanut butter or "dry" things normally for this reason. Just wondering if she is experiencing the same sensation. Does she wet her food? If not maybe have her drink something when she takes a bite of cookie etc & just see if it makes a difference.
<br />
<br />I am kind of guessing here, but it popped into my head!