Aidan's CF Check-UP

[mneville]

Aidan had his check up today. We go every two months b/c I am neurotic and want to catch any bacteria as early as possible. He is two years old, over 35 pounds and has recently gotten through two nasty bacterial viruses with no lung involvement which is great! He is a Double Delta.

I asked the doc about putting him on Azithromycin to prevent PA (Warwick mentioned that he might try doing that with some of his young patients) but our doc was not for it. He said not until they are already colonized with PA? I also asked about cord blood? Has anyone heard anything about cord blood being helpful in the cure for CF? We will hopefully find the funds to bank our unborn baby's cord blood in the hopes of something good?

They are always shocked when I say Aidan does the VEST an hour a day. It seems as if he is one of their only patients who do it this often. But I can only imagine that this helps him? Thin the mucous therefore less bacteria collects??

Megan

 

[mneville]

Aidan had his check up today. We go every two months b/c I am neurotic and want to catch any bacteria as early as possible. He is two years old, over 35 pounds and has recently gotten through two nasty bacterial viruses with no lung involvement which is great! He is a Double Delta.

I asked the doc about putting him on Azithromycin to prevent PA (Warwick mentioned that he might try doing that with some of his young patients) but our doc was not for it. He said not until they are already colonized with PA? I also asked about cord blood? Has anyone heard anything about cord blood being helpful in the cure for CF? We will hopefully find the funds to bank our unborn baby's cord blood in the hopes of something good?

They are always shocked when I say Aidan does the VEST an hour a day. It seems as if he is one of their only patients who do it this often. But I can only imagine that this helps him? Thin the mucous therefore less bacteria collects??

Megan

 

[mneville]

Aidan had his check up today. We go every two months b/c I am neurotic and want to catch any bacteria as early as possible. He is two years old, over 35 pounds and has recently gotten through two nasty bacterial viruses with no lung involvement which is great! He is a Double Delta.

I asked the doc about putting him on Azithromycin to prevent PA (Warwick mentioned that he might try doing that with some of his young patients) but our doc was not for it. He said not until they are already colonized with PA? I also asked about cord blood? Has anyone heard anything about cord blood being helpful in the cure for CF? We will hopefully find the funds to bank our unborn baby's cord blood in the hopes of something good?

They are always shocked when I say Aidan does the VEST an hour a day. It seems as if he is one of their only patients who do it this often. But I can only imagine that this helps him? Thin the mucous therefore less bacteria collects??

Megan

 

[NoExcuses]

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


I asked the doc about putting him on Azithromycin to prevent PA (Warwick mentioned that he might try doing that with some of his young patients) but our doc was not for it. He said not until they are already colonized with PA? I also asked about cord blood? Has anyone heard anything about cord blood being helpful in the cure for CF? We will hopefully find the funds to bank our unborn baby's cord blood in the hopes of something good?

</end quote></div>

Zithro doesn't prevent PA..... it reduces inflammation primary and secondarily prevents PA colonies from communicating with each other.....

did Warwick tell you this in person?

your doc sounds like he knows what he is talking about

 

[NoExcuses]

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


I asked the doc about putting him on Azithromycin to prevent PA (Warwick mentioned that he might try doing that with some of his young patients) but our doc was not for it. He said not until they are already colonized with PA? I also asked about cord blood? Has anyone heard anything about cord blood being helpful in the cure for CF? We will hopefully find the funds to bank our unborn baby's cord blood in the hopes of something good?

</end quote></div>

Zithro doesn't prevent PA..... it reduces inflammation primary and secondarily prevents PA colonies from communicating with each other.....

did Warwick tell you this in person?

your doc sounds like he knows what he is talking about

 

[NoExcuses]

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


I asked the doc about putting him on Azithromycin to prevent PA (Warwick mentioned that he might try doing that with some of his young patients) but our doc was not for it. He said not until they are already colonized with PA? I also asked about cord blood? Has anyone heard anything about cord blood being helpful in the cure for CF? We will hopefully find the funds to bank our unborn baby's cord blood in the hopes of something good?

</end quote></div>

Zithro doesn't prevent PA..... it reduces inflammation primary and secondarily prevents PA colonies from communicating with each other.....

did Warwick tell you this in person?

your doc sounds like he knows what he is talking about

 

[mneville]

We went to Warwick in July and he told us it was something he was seriously considering. Wasn't sure if it would work but was hopeful about it. You know how he likes to experiment....

Any ideas about cord blood and its possible usefulness with CF?

Megan

 

[mneville]

We went to Warwick in July and he told us it was something he was seriously considering. Wasn't sure if it would work but was hopeful about it. You know how he likes to experiment....

Any ideas about cord blood and its possible usefulness with CF?

Megan

 

[mneville]

We went to Warwick in July and he told us it was something he was seriously considering. Wasn't sure if it would work but was hopeful about it. You know how he likes to experiment....

Any ideas about cord blood and its possible usefulness with CF?

Megan

 

[AidansMom]

Hi Megan,

I've asked the same questions to the Doc's at the CF Clinic In Seattle (I think they're great!) regarding cord blood, and they pretty much told me that it would be useless and gave me some explanation about how studies using gene therapy have not been promising so far. I was so shocked that they wouldn't have said something more like... "well you never know what's to come in the near future regarding gene therapy, we'd advise it just to be on the safe side". You would think that you'd be covering all the bases by banking the CB, so i was quite shocked at the "no" response.

I would be curious to know if anyone has heard otherwise.

 

[AidansMom]

Hi Megan,

I've asked the same questions to the Doc's at the CF Clinic In Seattle (I think they're great!) regarding cord blood, and they pretty much told me that it would be useless and gave me some explanation about how studies using gene therapy have not been promising so far. I was so shocked that they wouldn't have said something more like... "well you never know what's to come in the near future regarding gene therapy, we'd advise it just to be on the safe side". You would think that you'd be covering all the bases by banking the CB, so i was quite shocked at the "no" response.

I would be curious to know if anyone has heard otherwise.

 

[AidansMom]

Hi Megan,

I've asked the same questions to the Doc's at the CF Clinic In Seattle (I think they're great!) regarding cord blood, and they pretty much told me that it would be useless and gave me some explanation about how studies using gene therapy have not been promising so far. I was so shocked that they wouldn't have said something more like... "well you never know what's to come in the near future regarding gene therapy, we'd advise it just to be on the safe side". You would think that you'd be covering all the bases by banking the CB, so i was quite shocked at the "no" response.

I would be curious to know if anyone has heard otherwise.

 

[ktsmom]

Katy is on Azithromycin 3 days a week, and our doc explained it the same way Amy did.

Yay for Aidan's good checkup, and way to go on his weight! Katy is only 35 pounds now. The weight gain is not something I've focused very hard on yet. Her VEST prescribed time is 40 minutes a day.

 

[ktsmom]

Katy is on Azithromycin 3 days a week, and our doc explained it the same way Amy did.

Yay for Aidan's good checkup, and way to go on his weight! Katy is only 35 pounds now. The weight gain is not something I've focused very hard on yet. Her VEST prescribed time is 40 minutes a day.

 

[ktsmom]

Katy is on Azithromycin 3 days a week, and our doc explained it the same way Amy did.

Yay for Aidan's good checkup, and way to go on his weight! Katy is only 35 pounds now. The weight gain is not something I've focused very hard on yet. Her VEST prescribed time is 40 minutes a day.