symptomatic carrier or cf or nerotic mom?

[jbrandonAW]

She was 6 months old when she had her sweat test -does that matter?
<br />
<br />She only ever had that ONE culture and it was a throat culture done in the ER -who knows if I can even get record of it.
<br />
<br />And she hasn't seen anyone other than the peds at the base hospital. As for FTT they just kept saying it was my breastfeeding and just kept and eye on her weight. Her last appointment the dr said that b/c her height was good (62%) that he wasn't really concerned anymore. BUT her weight is only at the 17% and that is getting a 350 ensure plus everyday and a high cal diet.
<br />
<br />I am really going to put some pressure on the doctor tomorrow.

 

[Ratatosk]

Before age 1, sweat tests aren't always accurate. DS' was a normal 32 and at the time he wasn't very salty, but blood tests showed he had CF. Today, I'm sure if he had a sweat test it'd be high because he's very salty <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

Before age 1, sweat tests aren't always accurate. DS' was a normal 32 and at the time he wasn't very salty, but blood tests showed he had CF. Today, I'm sure if he had a sweat test it'd be high because he's very salty <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

Before age 1, sweat tests aren't always accurate. DS' was a normal 32 and at the time he wasn't very salty, but blood tests showed he had CF. Today, I'm sure if he had a sweat test it'd be high because he's very salty <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

With her height and weight what they are, her BMI is very low... about 13.8 and only in the 1% for her age. That is cause for concern- just being 'tall' isn't sign of adequate nutrition or healthy growth, as you already know with a lifetime of dealing with the digestive issues involved w/CF. Especially since you are making a point of supplementing and giving her a high-calorie diet, this is especially worrisome.

I would want repeated cultures (and have them taken care of where they know what they are doing with them.) Her persistent cough would make me wonder if she's colonized with staph.

 

[hmw]

With her height and weight what they are, her BMI is very low... about 13.8 and only in the 1% for her age. That is cause for concern- just being 'tall' isn't sign of adequate nutrition or healthy growth, as you already know with a lifetime of dealing with the digestive issues involved w/CF. Especially since you are making a point of supplementing and giving her a high-calorie diet, this is especially worrisome.

I would want repeated cultures (and have them taken care of where they know what they are doing with them.) Her persistent cough would make me wonder if she's colonized with staph.

 

[hmw]

With her height and weight what they are, her BMI is very low... about 13.8 and only in the 1% for her age. That is cause for concern- just being 'tall' isn't sign of adequate nutrition or healthy growth, as you already know with a lifetime of dealing with the digestive issues involved w/CF. Especially since you are making a point of supplementing and giving her a high-calorie diet, this is especially worrisome.
<br />
<br />I would want repeated cultures (and have them taken care of where they know what they are doing with them.) Her persistent cough would make me wonder if she's colonized with staph.

 

[mamaScarlett]

you know what, as a mom I always tell myself-if this is going to give me peace of mind, then its worth it. (yes, even if it is $1,000....but push to get covered what you can)
it sounds like you aren't really going to get rest until you do this.
there's a good chance that she does NOT have cf...and either way you need that info. bc assuming she doesn't, you need to know why she is coughing alot.
i've succumbed to the fact that being a mom means you are and always will be part of the neurotic club.
but there's an old mom saying....better be safe than sorry.
if i were you-i'd talk to the cf office, pull for coverage for the full ambry and scrounge around for the rest of the $ and just do it.
(ps...you're a good mommy.)

 

[mamaScarlett]

you know what, as a mom I always tell myself-if this is going to give me peace of mind, then its worth it. (yes, even if it is $1,000....but push to get covered what you can)
it sounds like you aren't really going to get rest until you do this.
there's a good chance that she does NOT have cf...and either way you need that info. bc assuming she doesn't, you need to know why she is coughing alot.
i've succumbed to the fact that being a mom means you are and always will be part of the neurotic club.
but there's an old mom saying....better be safe than sorry.
if i were you-i'd talk to the cf office, pull for coverage for the full ambry and scrounge around for the rest of the $ and just do it.
(ps...you're a good mommy.)

 

[mamaScarlett]

you know what, as a mom I always tell myself-if this is going to give me peace of mind, then its worth it. (yes, even if it is $1,000....but push to get covered what you can)
<br />it sounds like you aren't really going to get rest until you do this.
<br />there's a good chance that she does NOT have cf...and either way you need that info. bc assuming she doesn't, you need to know why she is coughing alot.
<br />i've succumbed to the fact that being a mom means you are and always will be part of the neurotic club.
<br />but there's an old mom saying....better be safe than sorry.
<br />if i were you-i'd talk to the cf office, pull for coverage for the full ambry and scrounge around for the rest of the $ and just do it.
<br />(ps...you're a good mommy.)

 

[ehtansky21]

ambry is great about excepting payments also and they actually gave us a discount for our low income. So if your insurance only picks up part of the expense they would probably put you on a payment plan that is doable.
I would do it, if I were in your situation. And I would do nothing less then Ambry!!!
Update us with how the appointment went today, when you get time<img src="i/expressions/face-icon-small-smile.gif" border="0">

blessings,
missa

 

[ehtansky21]

ambry is great about excepting payments also and they actually gave us a discount for our low income. So if your insurance only picks up part of the expense they would probably put you on a payment plan that is doable.
I would do it, if I were in your situation. And I would do nothing less then Ambry!!!
Update us with how the appointment went today, when you get time<img src="i/expressions/face-icon-small-smile.gif" border="0">

blessings,
missa

 

[ehtansky21]

ambry is great about excepting payments also and they actually gave us a discount for our low income. So if your insurance only picks up part of the expense they would probably put you on a payment plan that is doable.
<br />I would do it, if I were in your situation. And I would do nothing less then Ambry!!!
<br />Update us with how the appointment went today, when you get time<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />blessings,
<br />missa

 

[JORDYSMOM]

Jessica, I'm so glad your daughter is being tested. I know how much tougher it is when it's your child going through things. Just remember that whatever comes, you have experience, and you will do fine.

I'll be praying.

Stacey

 

[JORDYSMOM]

Jessica, I'm so glad your daughter is being tested. I know how much tougher it is when it's your child going through things. Just remember that whatever comes, you have experience, and you will do fine.

I'll be praying.

Stacey

 

[JORDYSMOM]

Jessica, I'm so glad your daughter is being tested. I know how much tougher it is when it's your child going through things. Just remember that whatever comes, you have experience, and you will do fine.
<br />
<br />I'll be praying.
<br />
<br />Stacey

 

[LouLou]

Good going Jessica! Now, try not to worry because stress in you can cause illness. THe testing isn't going to change a thing. It will just gain you more power in the fight about cf if she has cf. Even if not, it will gain you power by giving you answers. If she does have cf. You are suited to be the best mom to her she could have. Now stay on this testing. Set a goal to have it completed no longer than end of the month so it doesn't drag on.

Also, I am under the understanding that culturing MRSA (even in infanthood) does not make it more likely that her lungs are compromised by cf. PA is another story though. That is why PA culturing is considered a symptom of cf while MRSA is not. Also, once having a lung infection by MRSA she should be regularly cultured because it is likely that all chest colds will have to be treated with a MRSA abx (this is Isaac's case). If you have a reference for that statement I'm questioning I'd love to see it. 70% of the population cultures MRSA. Do you?

 

[LouLou]

Good going Jessica! Now, try not to worry because stress in you can cause illness. THe testing isn't going to change a thing. It will just gain you more power in the fight about cf if she has cf. Even if not, it will gain you power by giving you answers. If she does have cf. You are suited to be the best mom to her she could have. Now stay on this testing. Set a goal to have it completed no longer than end of the month so it doesn't drag on.

Also, I am under the understanding that culturing MRSA (even in infanthood) does not make it more likely that her lungs are compromised by cf. PA is another story though. That is why PA culturing is considered a symptom of cf while MRSA is not. Also, once having a lung infection by MRSA she should be regularly cultured because it is likely that all chest colds will have to be treated with a MRSA abx (this is Isaac's case). If you have a reference for that statement I'm questioning I'd love to see it. 70% of the population cultures MRSA. Do you?

 

[LouLou]

Good going Jessica! Now, try not to worry because stress in you can cause illness. THe testing isn't going to change a thing. It will just gain you more power in the fight about cf if she has cf. Even if not, it will gain you power by giving you answers. If she does have cf. You are suited to be the best mom to her she could have. Now stay on this testing. Set a goal to have it completed no longer than end of the month so it doesn't drag on.
<br />
<br />Also, I am under the understanding that culturing MRSA (even in infanthood) does not make it more likely that her lungs are compromised by cf. PA is another story though. That is why PA culturing is considered a symptom of cf while MRSA is not. Also, once having a lung infection by MRSA she should be regularly cultured because it is likely that all chest colds will have to be treated with a MRSA abx (this is Isaac's case). If you have a reference for that statement I'm questioning I'd love to see it. 70% of the population cultures MRSA. Do you?

 

[jbrandonAW]

Well 70% culture it in the sinuses. (from what I was told) but its pretty rare for someone without an immune issue to actually have pnuemonia b/c of it. I have only every cultured and been treated for mrsa 3 times, the first time being around 16 yrs old. I honestly don't really know...but Ill bring it up to my dr.