Results are In

M

MaeFlower

New member
Today we found out our daughter does not have Cystic Fibrosis.

Grateful and relieved about the results, we still stand in limbo land. She has several unresolved health issues and has pneumonia for what is the 6th time since her birth (she's only 8 months).

Our next step with our sweet girl is undergoing Immunological testing to see if that may be the cause for her continued pneumonias and infections.

I want to say THANK YOU! The support from this site has been incredibly amazing, as well as the wisdom and knowledge that you all have shared. Although my daughter does not have CF, I can relate to your struggles and pains of watching your child(ren) endure so many procedures and treatments. Our lives are consumed with doctors appointments, hospital visits, iv's, CPT, feeding tubes and most importantly lots and lots of hugs, kisses and love to our little one(s). You are ALL an inspiration to me; parents and children alike!

I will keep this site and the people that are a part of it in my prayers. God Bless you all.
 
M

MaeFlower

New member
Today we found out our daughter does not have Cystic Fibrosis.

Grateful and relieved about the results, we still stand in limbo land. She has several unresolved health issues and has pneumonia for what is the 6th time since her birth (she's only 8 months).

Our next step with our sweet girl is undergoing Immunological testing to see if that may be the cause for her continued pneumonias and infections.

I want to say THANK YOU! The support from this site has been incredibly amazing, as well as the wisdom and knowledge that you all have shared. Although my daughter does not have CF, I can relate to your struggles and pains of watching your child(ren) endure so many procedures and treatments. Our lives are consumed with doctors appointments, hospital visits, iv's, CPT, feeding tubes and most importantly lots and lots of hugs, kisses and love to our little one(s). You are ALL an inspiration to me; parents and children alike!

I will keep this site and the people that are a part of it in my prayers. God Bless you all.
 
M

MaeFlower

New member
Today we found out our daughter does not have Cystic Fibrosis.
<br />
<br />Grateful and relieved about the results, we still stand in limbo land. She has several unresolved health issues and has pneumonia for what is the 6th time since her birth (she's only 8 months).
<br />
<br />Our next step with our sweet girl is undergoing Immunological testing to see if that may be the cause for her continued pneumonias and infections.
<br />
<br />I want to say THANK YOU! The support from this site has been incredibly amazing, as well as the wisdom and knowledge that you all have shared. Although my daughter does not have CF, I can relate to your struggles and pains of watching your child(ren) endure so many procedures and treatments. Our lives are consumed with doctors appointments, hospital visits, iv's, CPT, feeding tubes and most importantly lots and lots of hugs, kisses and love to our little one(s). You are ALL an inspiration to me; parents and children alike!
<br />
<br />I will keep this site and the people that are a part of it in my prayers. God Bless you all.
<br />
<br />
<br />
 
M

Mommafirst

Guest
Good news, Julie -- I hope you get some answers, asap.
 
M

Mommafirst

Guest
Good news, Julie -- I hope you get some answers, asap.
 
M

Mommafirst

Guest
Good news, Julie -- I hope you get some answers, asap.
 
L

LouLou

New member
What does she culture when she gets pneumonia? What test did she test borderline too and what test was she "negative" too?

I hope you find answers it just sounds so much like cf...feeding tubes and pneumonia. She's certainly got the symptoms..what more do they want for a diagnosis? Does she have any mutations found in gene sequencing?
 
L

LouLou

New member
What does she culture when she gets pneumonia? What test did she test borderline too and what test was she "negative" too?

I hope you find answers it just sounds so much like cf...feeding tubes and pneumonia. She's certainly got the symptoms..what more do they want for a diagnosis? Does she have any mutations found in gene sequencing?
 
L

LouLou

New member
What does she culture when she gets pneumonia? What test did she test borderline too and what test was she "negative" too?
<br />
<br />I hope you find answers it just sounds so much like cf...feeding tubes and pneumonia. She's certainly got the symptoms..what more do they want for a diagnosis? Does she have any mutations found in gene sequencing?
 
M

MaeFlower

New member
Lauren,

She cultured Moraxella Cattarhalis & H. Flu, she's only had one bronc & that's what it showed. She had one sweat test that was 44 and the next, a month later that was 10. There were no mutations found in the CFTR gene. Ambry did the Amplified & Deletions/Duplications panel.

I think the one thing that is stumping them is the fact that she is consistently gaining weight and has been for about 4 months. She's on Lansoprazole 1/2 tsp twice daily, Baclofen .27ml 3 times daily. She's on a 24 calorie Neocate formula through her g-tube and gets 750ml over the course of 16hrs through her feeding tube. It runs all night...so of course I wonder if that is why she is gaining so well. However, she is sick about every 2-3 weeks. It starts as a runny nose(sometimes) & then settles into her lungs, she did have one recent hospitalization & I was told it was because she had a nasty ear infection, stomach virus & puss on her throat.

Whew...that's just a fraction of what she's been through in 6 months...
 
M

MaeFlower

New member
Lauren,

She cultured Moraxella Cattarhalis & H. Flu, she's only had one bronc & that's what it showed. She had one sweat test that was 44 and the next, a month later that was 10. There were no mutations found in the CFTR gene. Ambry did the Amplified & Deletions/Duplications panel.

I think the one thing that is stumping them is the fact that she is consistently gaining weight and has been for about 4 months. She's on Lansoprazole 1/2 tsp twice daily, Baclofen .27ml 3 times daily. She's on a 24 calorie Neocate formula through her g-tube and gets 750ml over the course of 16hrs through her feeding tube. It runs all night...so of course I wonder if that is why she is gaining so well. However, she is sick about every 2-3 weeks. It starts as a runny nose(sometimes) & then settles into her lungs, she did have one recent hospitalization & I was told it was because she had a nasty ear infection, stomach virus & puss on her throat.

Whew...that's just a fraction of what she's been through in 6 months...
 
M

MaeFlower

New member
Lauren,
<br />
<br />She cultured Moraxella Cattarhalis & H. Flu, she's only had one bronc & that's what it showed. She had one sweat test that was 44 and the next, a month later that was 10. There were no mutations found in the CFTR gene. Ambry did the Amplified & Deletions/Duplications panel.
<br />
<br />I think the one thing that is stumping them is the fact that she is consistently gaining weight and has been for about 4 months. She's on Lansoprazole 1/2 tsp twice daily, Baclofen .27ml 3 times daily. She's on a 24 calorie Neocate formula through her g-tube and gets 750ml over the course of 16hrs through her feeding tube. It runs all night...so of course I wonder if that is why she is gaining so well. However, she is sick about every 2-3 weeks. It starts as a runny nose(sometimes) & then settles into her lungs, she did have one recent hospitalization & I was told it was because she had a nasty ear infection, stomach virus & puss on her throat.
<br />
<br />Whew...that's just a fraction of what she's been through in 6 months...
<br />
 
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