so confused after clinic appointment

[AleksandraKaczynska]

Hi, \for a long time I didn't trust our doctors and I would cheque Joanna's health wirh anonther doctor - from a diffrenet clinic - and also I did a few phone calls to other doctors who are part of cf organisations in our country (I'm from Poland).
<br />It helped me to understand more and feel confortable.
<br />I also learned to ask questions and doubt everything. If the doctor doesn't like it I just tell him that the health of my child is most important to me and I need to understand! - they never questioned this.
<br />I heard also that children in UK don't have to do inhaltions every day - just when they are sick - but they all live near the sea in a warm climate. I never heard of not doing CPT in children.
<br />I also confront what the doctors say with what parents say on forums like this.
<br />If Jaoona got sick I would not wait also.
<br />
<br />

 

[Lilliansmom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i>




What did the doctor say when you asked about the atypical?? I really don't think there is a good answer. If your kids have genetic CF plus they have GI and Lung issues, then its CF and should be following the CFF recommended preventative therapies. Further, if their infections are not responding well to oral antibiotic, they can be causing permanent scarring issues and should be treated with IV antibiotics.


.</end quote></div>


He said that they were terming it atypical b/c despite having two mutations from the ambry test they both continue to have negative sweat tests, and despite having numerous respitory infections neither one has cultured anything. Also, since Lilly needed TPN for 2 years since the enzymes did not help enough.

I honestly do not know what to think. My cousins son has the same doctor, and has been doing CPT for years, since he was a baby. He is 18 now. I do trust the doctor, it just seems like it is very different from what everyone else's kids are doing.

They both had lung CT scans over the summer, which showed slight scarring in their right lungs - DS more so than DD, but the doctor said it was minimal, and did not concern him.

 

[Lilliansmom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i>




What did the doctor say when you asked about the atypical?? I really don't think there is a good answer. If your kids have genetic CF plus they have GI and Lung issues, then its CF and should be following the CFF recommended preventative therapies. Further, if their infections are not responding well to oral antibiotic, they can be causing permanent scarring issues and should be treated with IV antibiotics.


.</end quote>


He said that they were terming it atypical b/c despite having two mutations from the ambry test they both continue to have negative sweat tests, and despite having numerous respitory infections neither one has cultured anything. Also, since Lilly needed TPN for 2 years since the enzymes did not help enough.

I honestly do not know what to think. My cousins son has the same doctor, and has been doing CPT for years, since he was a baby. He is 18 now. I do trust the doctor, it just seems like it is very different from what everyone else's kids are doing.

They both had lung CT scans over the summer, which showed slight scarring in their right lungs - DS more so than DD, but the doctor said it was minimal, and did not concern him.

 

[Lilliansmom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i>
<br />
<br />
<br />
<br />
<br />What did the doctor say when you asked about the atypical?? I really don't think there is a good answer. If your kids have genetic CF plus they have GI and Lung issues, then its CF and should be following the CFF recommended preventative therapies. Further, if their infections are not responding well to oral antibiotic, they can be causing permanent scarring issues and should be treated with IV antibiotics.
<br />
<br />
<br />.</end quote>
<br />
<br />
<br />He said that they were terming it atypical b/c despite having two mutations from the ambry test they both continue to have negative sweat tests, and despite having numerous respitory infections neither one has cultured anything. Also, since Lilly needed TPN for 2 years since the enzymes did not help enough.
<br />
<br />I honestly do not know what to think. My cousins son has the same doctor, and has been doing CPT for years, since he was a baby. He is 18 now. I do trust the doctor, it just seems like it is very different from what everyone else's kids are doing.
<br />
<br />They both had lung CT scans over the summer, which showed slight scarring in their right lungs - DS more so than DD, but the doctor said it was minimal, and did not concern him.
<br />

 

[Lilliansmom]

Thanks everyone. While I do trust their doctor, I am going to call back and talk to him again, and see if I can also talk to another doctor in the clinic.

 

[Lilliansmom]

Thanks everyone. While I do trust their doctor, I am going to call back and talk to him again, and see if I can also talk to another doctor in the clinic.

 

[Lilliansmom]

Thanks everyone. While I do trust their doctor, I am going to call back and talk to him again, and see if I can also talk to another doctor in the clinic.

 

[mamaScarlett]

I never ever like to bash or even question a doctor when reading someone else's post.
But when I read that they are not requiring you to do chest pt yet-my jaw was on the floor.
If she's considered healthy enough at this point to not need chest pt, then why is she having a bronch?
Its great the she's not culturing anything yet. Chest pt will keep it that way for as long as possible.
I think you're right in calling back the doctor and talking to a 2nd one as well. Moms have instinct-if there's something unresolved inside you then you are right to act on it.

 

[mamaScarlett]

I never ever like to bash or even question a doctor when reading someone else's post.
But when I read that they are not requiring you to do chest pt yet-my jaw was on the floor.
If she's considered healthy enough at this point to not need chest pt, then why is she having a bronch?
Its great the she's not culturing anything yet. Chest pt will keep it that way for as long as possible.
I think you're right in calling back the doctor and talking to a 2nd one as well. Moms have instinct-if there's something unresolved inside you then you are right to act on it.

 

[mamaScarlett]

I never ever like to bash or even question a doctor when reading someone else's post.
<br />But when I read that they are not requiring you to do chest pt yet-my jaw was on the floor.
<br />If she's considered healthy enough at this point to not need chest pt, then why is she having a bronch?
<br />Its great the she's not culturing anything yet. Chest pt will keep it that way for as long as possible.
<br />I think you're right in calling back the doctor and talking to a 2nd one as well. Moms have instinct-if there's something unresolved inside you then you are right to act on it.

 

[TonyaH]

If the only reason they are calling their CF atypical is because of negative sweat tests you need to seek a second opinion. Two mutations = CF.

Seriously? Drs. still think this way? UGH!

I could name 10 people right off the bat who tested negative on their sweat test, yet have CF....and that's without giving it much thought.

Your genetic results trump your sweat test results. Good for you for knowing this and advocating for your children!

 

[TonyaH]

If the only reason they are calling their CF atypical is because of negative sweat tests you need to seek a second opinion. Two mutations = CF.

Seriously? Drs. still think this way? UGH!

I could name 10 people right off the bat who tested negative on their sweat test, yet have CF....and that's without giving it much thought.

Your genetic results trump your sweat test results. Good for you for knowing this and advocating for your children!

 

[TonyaH]

If the only reason they are calling their CF atypical is because of negative sweat tests you need to seek a second opinion. Two mutations = CF.
<br />
<br />Seriously? Drs. still think this way? UGH!
<br />
<br />I could name 10 people right off the bat who tested negative on their sweat test, yet have CF....and that's without giving it much thought.
<br />
<br />Your genetic results trump your sweat test results. Good for you for knowing this and advocating for your children!
<br />
<br />
<br />

 

[mamaScarlett]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TonyaH</b></i>

If the only reason they are calling their CF atypical is because of negative sweat tests you need to seek a second opinion. Two mutations = CF.



Seriously? Drs. still think this way? UGH!



I could name 10 people right off the bat who tested negative on their sweat test, yet have CF....and that's without giving it much thought.



Your genetic results trump your sweat test results. Good for you for knowing this and advocating for your children!</end quote></div>

i was thinking the same thing

 

[mamaScarlett]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TonyaH</b></i>

If the only reason they are calling their CF atypical is because of negative sweat tests you need to seek a second opinion. Two mutations = CF.



Seriously? Drs. still think this way? UGH!



I could name 10 people right off the bat who tested negative on their sweat test, yet have CF....and that's without giving it much thought.



Your genetic results trump your sweat test results. Good for you for knowing this and advocating for your children!</end quote>

i was thinking the same thing

 

[mamaScarlett]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TonyaH</b></i>
<br />
<br />If the only reason they are calling their CF atypical is because of negative sweat tests you need to seek a second opinion. Two mutations = CF.
<br />
<br />
<br />
<br />Seriously? Drs. still think this way? UGH!
<br />
<br />
<br />
<br />I could name 10 people right off the bat who tested negative on their sweat test, yet have CF....and that's without giving it much thought.
<br />
<br />
<br />
<br />Your genetic results trump your sweat test results. Good for you for knowing this and advocating for your children!</end quote>
<br />
<br />i was thinking the same thing

 

[hmw]

This scares me... this is EXACTLY why the whole 'atypical' label upsets me so much.

Your children have 2 mutations and very strong symptoms associated with CF. I cannot believe that the fact they have had neg sweat tests is interfering with them being prescribed appropriate treatment. Even liking their current doctor... I would run, not walk... to another center for a 2nd opinion.

 

[hmw]

This scares me... this is EXACTLY why the whole 'atypical' label upsets me so much.

Your children have 2 mutations and very strong symptoms associated with CF. I cannot believe that the fact they have had neg sweat tests is interfering with them being prescribed appropriate treatment. Even liking their current doctor... I would run, not walk... to another center for a 2nd opinion.

 

[hmw]

This scares me... this is EXACTLY why the whole 'atypical' label upsets me so much.
<br />
<br />Your children have 2 mutations and very strong symptoms associated with CF. I cannot believe that the fact they have had neg sweat tests is interfering with them being prescribed appropriate treatment. Even liking their current doctor... I would run, not walk... to another center for a 2nd opinion.
<br />
<br />

 

[JORDYSMOM]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lilliansmom</b></i>

My cousins son has the same doctor, and has been doing CPT for years, since he was a baby. He is 18 now. I do trust the doctor, it just seems like it is very different from what everyone else's kids are doing.</end quote></div>

This is exactly why the "atypical" label worries me. It's hard to understand why a doctor would treat patients so differently.

Stacey