How often are your regularly-scheduled clinic visits?

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SarahProcter

Guest
thanks everyone, it's really interesting to me to see what is normal for folks in different centers, etc.

I noticed a couple people mentioned geneticists - we've never seen one, other than at a prenatal screening session where they told us our kid wouldn't have CF (don't get me started!). What role does the geneticist play?
 
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SarahProcter

Guest
thanks everyone, it's really interesting to me to see what is normal for folks in different centers, etc.

I noticed a couple people mentioned geneticists - we've never seen one, other than at a prenatal screening session where they told us our kid wouldn't have CF (don't get me started!). What role does the geneticist play?
 
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SarahProcter

Guest
thanks everyone, it's really interesting to me to see what is normal for folks in different centers, etc.

I noticed a couple people mentioned geneticists - we've never seen one, other than at a prenatal screening session where they told us our kid wouldn't have CF (don't get me started!). What role does the geneticist play?
 
S

SarahProcter

Guest
thanks everyone, it's really interesting to me to see what is normal for folks in different centers, etc.

I noticed a couple people mentioned geneticists - we've never seen one, other than at a prenatal screening session where they told us our kid wouldn't have CF (don't get me started!). What role does the geneticist play?
 
S

SarahProcter

Guest
thanks everyone, it's really interesting to me to see what is normal for folks in different centers, etc.
<br />
<br />I noticed a couple people mentioned geneticists - we've never seen one, other than at a prenatal screening session where they told us our kid wouldn't have CF (don't get me started!). What role does the geneticist play?
 
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ymikhale

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



I noticed a couple people mentioned geneticists - we've never seen one, other than at a prenatal screening session where they told us our kid wouldn't have CF (don't get me started!). What role does the geneticist play?</end quote></div>

I went to see one once and was very disappointed. I asked him tons of questions about the articles I read and the new meds in the pipeline. He wrote them all down and said that he would get back to me. A month later I received a letter from him saying that my second child had a 25% chance of having CF and if I planned another pregnancy I should get in touch with him. I mean HELLO, that was not the purpose of my visit with him!!!

So my conclusion was that his role is to help you if you decide to have another child, he is not a good source for current research etc.
 
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ymikhale

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



I noticed a couple people mentioned geneticists - we've never seen one, other than at a prenatal screening session where they told us our kid wouldn't have CF (don't get me started!). What role does the geneticist play?</end quote></div>

I went to see one once and was very disappointed. I asked him tons of questions about the articles I read and the new meds in the pipeline. He wrote them all down and said that he would get back to me. A month later I received a letter from him saying that my second child had a 25% chance of having CF and if I planned another pregnancy I should get in touch with him. I mean HELLO, that was not the purpose of my visit with him!!!

So my conclusion was that his role is to help you if you decide to have another child, he is not a good source for current research etc.
 
Y

ymikhale

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



I noticed a couple people mentioned geneticists - we've never seen one, other than at a prenatal screening session where they told us our kid wouldn't have CF (don't get me started!). What role does the geneticist play?</end quote></div>

I went to see one once and was very disappointed. I asked him tons of questions about the articles I read and the new meds in the pipeline. He wrote them all down and said that he would get back to me. A month later I received a letter from him saying that my second child had a 25% chance of having CF and if I planned another pregnancy I should get in touch with him. I mean HELLO, that was not the purpose of my visit with him!!!

So my conclusion was that his role is to help you if you decide to have another child, he is not a good source for current research etc.
 
Y

ymikhale

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



I noticed a couple people mentioned geneticists - we've never seen one, other than at a prenatal screening session where they told us our kid wouldn't have CF (don't get me started!). What role does the geneticist play?</end quote>

I went to see one once and was very disappointed. I asked him tons of questions about the articles I read and the new meds in the pipeline. He wrote them all down and said that he would get back to me. A month later I received a letter from him saying that my second child had a 25% chance of having CF and if I planned another pregnancy I should get in touch with him. I mean HELLO, that was not the purpose of my visit with him!!!

So my conclusion was that his role is to help you if you decide to have another child, he is not a good source for current research etc.
 
Y

ymikhale

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SarahProcter</b></i>
<br />
<br />
<br />
<br />I noticed a couple people mentioned geneticists - we've never seen one, other than at a prenatal screening session where they told us our kid wouldn't have CF (don't get me started!). What role does the geneticist play?</end quote>
<br />
<br />I went to see one once and was very disappointed. I asked him tons of questions about the articles I read and the new meds in the pipeline. He wrote them all down and said that he would get back to me. A month later I received a letter from him saying that my second child had a 25% chance of having CF and if I planned another pregnancy I should get in touch with him. I mean HELLO, that was not the purpose of my visit with him!!!
<br />
<br />So my conclusion was that his role is to help you if you decide to have another child, he is not a good source for current research etc.
<br />
 
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babyluke

New member
We saw a geneticist too right after Luke was diagnosed and had a similiar experience as the poster above. The doctor was very nice and did give us some general information about the genetic aspect of CF and the info. in regards to future pregnancies but nothing really specific to Luke. We have not seen her since.
 
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babyluke

New member
We saw a geneticist too right after Luke was diagnosed and had a similiar experience as the poster above. The doctor was very nice and did give us some general information about the genetic aspect of CF and the info. in regards to future pregnancies but nothing really specific to Luke. We have not seen her since.
 
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babyluke

New member
We saw a geneticist too right after Luke was diagnosed and had a similiar experience as the poster above. The doctor was very nice and did give us some general information about the genetic aspect of CF and the info. in regards to future pregnancies but nothing really specific to Luke. We have not seen her since.
 
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babyluke

New member
We saw a geneticist too right after Luke was diagnosed and had a similiar experience as the poster above. The doctor was very nice and did give us some general information about the genetic aspect of CF and the info. in regards to future pregnancies but nothing really specific to Luke. We have not seen her since.
 
B

babyluke

New member
We saw a geneticist too right after Luke was diagnosed and had a similiar experience as the poster above. The doctor was very nice and did give us some general information about the genetic aspect of CF and the info. in regards to future pregnancies but nothing really specific to Luke. We have not seen her since.
 
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Stillgoing

New member
The first year at this clinic it was every three months. Last year it was every two months with Lauren being hospitalized, culturing PA, Stenotrophomonas and other weird stuff. At her visit last week they said we didn't have to come back for 3-4 months (I picked 4).
 
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Stillgoing

New member
The first year at this clinic it was every three months. Last year it was every two months with Lauren being hospitalized, culturing PA, Stenotrophomonas and other weird stuff. At her visit last week they said we didn't have to come back for 3-4 months (I picked 4).
 
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Stillgoing

New member
The first year at this clinic it was every three months. Last year it was every two months with Lauren being hospitalized, culturing PA, Stenotrophomonas and other weird stuff. At her visit last week they said we didn't have to come back for 3-4 months (I picked 4).
 
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Stillgoing

New member
The first year at this clinic it was every three months. Last year it was every two months with Lauren being hospitalized, culturing PA, Stenotrophomonas and other weird stuff. At her visit last week they said we didn't have to come back for 3-4 months (I picked 4).
 
S

Stillgoing

New member
The first year at this clinic it was every three months. Last year it was every two months with Lauren being hospitalized, culturing PA, Stenotrophomonas and other weird stuff. At her visit last week they said we didn't have to come back for 3-4 months (I picked 4).
 
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