Can this be it?

M

momtozoe

New member
Hi all....I'm new on here and I don't know if I belong here yet. My 14 month old daughter has been sick for quite a while now and we are still testing to see what it could be. the ped thought it was celiac for a few months but the tests came back neg...

so here it is....

she is 14 months, she was born at 37 weeks with thick mucus which tooks 4 days of nicu (oxygen, antibiotics and all) to clear.
since then, she almost ALWAYS has mucus somewhere...we have gone through sooo many saline bottles it's just ridiculous.
she had her first bronchiolitis at 5 months of age. so far, she was hospitalized 4 times for that (one with RSV)
she is still coughing although not that much (but you can still here the mucus when she coughs)
no pneumonia though..just viral bronchiolitis...seems like she can't catch a regular cold without it going down to her bronchi
she has been diagnosted asthmatic and is treated with inhalors and liquid steroids in acute phases

also, since she has been eating solid foods, she has been having gaz, frequent abdominal pain that would wake her up every half hour(less frequent nowadays), a distended abdomen and very loose stools (I don't thing they look greasy)...also abundant but just one or two per day.
she has not gained any weight since she was 9 months (she dropped from 97th to 70th percentile) she is obviously not too tin or anything yet but I'm afraid it will happen if she doesn't start gaining weight. her height is right on track though.

sooooo.....we are getting the sweat test done but I don't know when (waiting list at local children's hospital)
oh and I forgot to say we have no cf in the family.

what's you opinion on this?
thanks
 
M

momtozoe

New member
Hi all....I'm new on here and I don't know if I belong here yet. My 14 month old daughter has been sick for quite a while now and we are still testing to see what it could be. the ped thought it was celiac for a few months but the tests came back neg...

so here it is....

she is 14 months, she was born at 37 weeks with thick mucus which tooks 4 days of nicu (oxygen, antibiotics and all) to clear.
since then, she almost ALWAYS has mucus somewhere...we have gone through sooo many saline bottles it's just ridiculous.
she had her first bronchiolitis at 5 months of age. so far, she was hospitalized 4 times for that (one with RSV)
she is still coughing although not that much (but you can still here the mucus when she coughs)
no pneumonia though..just viral bronchiolitis...seems like she can't catch a regular cold without it going down to her bronchi
she has been diagnosted asthmatic and is treated with inhalors and liquid steroids in acute phases

also, since she has been eating solid foods, she has been having gaz, frequent abdominal pain that would wake her up every half hour(less frequent nowadays), a distended abdomen and very loose stools (I don't thing they look greasy)...also abundant but just one or two per day.
she has not gained any weight since she was 9 months (she dropped from 97th to 70th percentile) she is obviously not too tin or anything yet but I'm afraid it will happen if she doesn't start gaining weight. her height is right on track though.

sooooo.....we are getting the sweat test done but I don't know when (waiting list at local children's hospital)
oh and I forgot to say we have no cf in the family.

what's you opinion on this?
thanks
 
M

momtozoe

New member
Hi all....I'm new on here and I don't know if I belong here yet. My 14 month old daughter has been sick for quite a while now and we are still testing to see what it could be. the ped thought it was celiac for a few months but the tests came back neg...

so here it is....

she is 14 months, she was born at 37 weeks with thick mucus which tooks 4 days of nicu (oxygen, antibiotics and all) to clear.
since then, she almost ALWAYS has mucus somewhere...we have gone through sooo many saline bottles it's just ridiculous.
she had her first bronchiolitis at 5 months of age. so far, she was hospitalized 4 times for that (one with RSV)
she is still coughing although not that much (but you can still here the mucus when she coughs)
no pneumonia though..just viral bronchiolitis...seems like she can't catch a regular cold without it going down to her bronchi
she has been diagnosted asthmatic and is treated with inhalors and liquid steroids in acute phases

also, since she has been eating solid foods, she has been having gaz, frequent abdominal pain that would wake her up every half hour(less frequent nowadays), a distended abdomen and very loose stools (I don't thing they look greasy)...also abundant but just one or two per day.
she has not gained any weight since she was 9 months (she dropped from 97th to 70th percentile) she is obviously not too tin or anything yet but I'm afraid it will happen if she doesn't start gaining weight. her height is right on track though.

sooooo.....we are getting the sweat test done but I don't know when (waiting list at local children's hospital)
oh and I forgot to say we have no cf in the family.

what's you opinion on this?
thanks
 
M

momtozoe

New member
Hi all....I'm new on here and I don't know if I belong here yet. My 14 month old daughter has been sick for quite a while now and we are still testing to see what it could be. the ped thought it was celiac for a few months but the tests came back neg...

so here it is....

she is 14 months, she was born at 37 weeks with thick mucus which tooks 4 days of nicu (oxygen, antibiotics and all) to clear.
since then, she almost ALWAYS has mucus somewhere...we have gone through sooo many saline bottles it's just ridiculous.
she had her first bronchiolitis at 5 months of age. so far, she was hospitalized 4 times for that (one with RSV)
she is still coughing although not that much (but you can still here the mucus when she coughs)
no pneumonia though..just viral bronchiolitis...seems like she can't catch a regular cold without it going down to her bronchi
she has been diagnosted asthmatic and is treated with inhalors and liquid steroids in acute phases

also, since she has been eating solid foods, she has been having gaz, frequent abdominal pain that would wake her up every half hour(less frequent nowadays), a distended abdomen and very loose stools (I don't thing they look greasy)...also abundant but just one or two per day.
she has not gained any weight since she was 9 months (she dropped from 97th to 70th percentile) she is obviously not too tin or anything yet but I'm afraid it will happen if she doesn't start gaining weight. her height is right on track though.

sooooo.....we are getting the sweat test done but I don't know when (waiting list at local children's hospital)
oh and I forgot to say we have no cf in the family.

what's you opinion on this?
thanks
 
M

momtozoe

New member
Hi all....I'm new on here and I don't know if I belong here yet. My 14 month old daughter has been sick for quite a while now and we are still testing to see what it could be. the ped thought it was celiac for a few months but the tests came back neg...
<br />
<br />so here it is....
<br />
<br />she is 14 months, she was born at 37 weeks with thick mucus which tooks 4 days of nicu (oxygen, antibiotics and all) to clear.
<br />since then, she almost ALWAYS has mucus somewhere...we have gone through sooo many saline bottles it's just ridiculous.
<br />she had her first bronchiolitis at 5 months of age. so far, she was hospitalized 4 times for that (one with RSV)
<br />she is still coughing although not that much (but you can still here the mucus when she coughs)
<br />no pneumonia though..just viral bronchiolitis...seems like she can't catch a regular cold without it going down to her bronchi
<br />she has been diagnosted asthmatic and is treated with inhalors and liquid steroids in acute phases
<br />
<br />also, since she has been eating solid foods, she has been having gaz, frequent abdominal pain that would wake her up every half hour(less frequent nowadays), a distended abdomen and very loose stools (I don't thing they look greasy)...also abundant but just one or two per day.
<br />she has not gained any weight since she was 9 months (she dropped from 97th to 70th percentile) she is obviously not too tin or anything yet but I'm afraid it will happen if she doesn't start gaining weight. her height is right on track though.
<br />
<br />sooooo.....we are getting the sweat test done but I don't know when (waiting list at local children's hospital)
<br />oh and I forgot to say we have no cf in the family.
<br />
<br />what's you opinion on this?
<br />thanks
 
J

JazzysMom

New member
Your description sounds like some classic symptoms of CF. It is great that the sweat test is being done, BUT it is not as reliable as once thought.

Once you get the results & dont accept negative, borderline or positive....ask for the #, I would suggest you persue genetic testing also. Just for the record we have a few members that had low or borderline sweat tests, but genetic testing came up with 2 mutations to confirm CF.

Also a large % of CF diagnosis dont have a know family history including mine.

Let us know what happens or if you have more ??? please ask!
 
J

JazzysMom

New member
Your description sounds like some classic symptoms of CF. It is great that the sweat test is being done, BUT it is not as reliable as once thought.

Once you get the results & dont accept negative, borderline or positive....ask for the #, I would suggest you persue genetic testing also. Just for the record we have a few members that had low or borderline sweat tests, but genetic testing came up with 2 mutations to confirm CF.

Also a large % of CF diagnosis dont have a know family history including mine.

Let us know what happens or if you have more ??? please ask!
 
J

JazzysMom

New member
Your description sounds like some classic symptoms of CF. It is great that the sweat test is being done, BUT it is not as reliable as once thought.

Once you get the results & dont accept negative, borderline or positive....ask for the #, I would suggest you persue genetic testing also. Just for the record we have a few members that had low or borderline sweat tests, but genetic testing came up with 2 mutations to confirm CF.

Also a large % of CF diagnosis dont have a know family history including mine.

Let us know what happens or if you have more ??? please ask!
 
J

JazzysMom

New member
Your description sounds like some classic symptoms of CF. It is great that the sweat test is being done, BUT it is not as reliable as once thought.

Once you get the results & dont accept negative, borderline or positive....ask for the #, I would suggest you persue genetic testing also. Just for the record we have a few members that had low or borderline sweat tests, but genetic testing came up with 2 mutations to confirm CF.

Also a large % of CF diagnosis dont have a know family history including mine.

Let us know what happens or if you have more ??? please ask!
 
J

JazzysMom

New member
Your description sounds like some classic symptoms of CF. It is great that the sweat test is being done, BUT it is not as reliable as once thought.
<br />
<br />Once you get the results & dont accept negative, borderline or positive....ask for the #, I would suggest you persue genetic testing also. Just for the record we have a few members that had low or borderline sweat tests, but genetic testing came up with 2 mutations to confirm CF.
<br />
<br />Also a large % of CF diagnosis dont have a know family history including mine.
<br />
<br />Let us know what happens or if you have more ??? please ask!
 
M

momtozoe

New member
here in canada, they don't do genetic tests unless you have a family history.
mabye I can send a sample of some sort to a US lab?
 
M

momtozoe

New member
here in canada, they don't do genetic tests unless you have a family history.
mabye I can send a sample of some sort to a US lab?
 
M

momtozoe

New member
here in canada, they don't do genetic tests unless you have a family history.
mabye I can send a sample of some sort to a US lab?
 
M

momtozoe

New member
here in canada, they don't do genetic tests unless you have a family history.
mabye I can send a sample of some sort to a US lab?
 
M

momtozoe

New member
here in canada, they don't do genetic tests unless you have a family history.
<br />mabye I can send a sample of some sort to a US lab?
 
V

valigirl21

Guest
Not that I hope your daughter has CF, but a-typical CF like my son has presents much that way. He had a borderline sweat chloride (43), no MI, lots of respiritory infections, dx w/ asthma at age 1 (our ped wouldn't dx before age 1), lots of hosp., and if you beleive the tests RSV 5 times in 1 1/2, and no known genetic mutations. He is PI and FTT. You've come to the right spot if your girl does indeed have CF. And Melissa's right, that Sweat test doesn't mean what it used to, so don't take no for an answer. Welcome to the site!
 
V

valigirl21

Guest
Not that I hope your daughter has CF, but a-typical CF like my son has presents much that way. He had a borderline sweat chloride (43), no MI, lots of respiritory infections, dx w/ asthma at age 1 (our ped wouldn't dx before age 1), lots of hosp., and if you beleive the tests RSV 5 times in 1 1/2, and no known genetic mutations. He is PI and FTT. You've come to the right spot if your girl does indeed have CF. And Melissa's right, that Sweat test doesn't mean what it used to, so don't take no for an answer. Welcome to the site!
 
V

valigirl21

Guest
Not that I hope your daughter has CF, but a-typical CF like my son has presents much that way. He had a borderline sweat chloride (43), no MI, lots of respiritory infections, dx w/ asthma at age 1 (our ped wouldn't dx before age 1), lots of hosp., and if you beleive the tests RSV 5 times in 1 1/2, and no known genetic mutations. He is PI and FTT. You've come to the right spot if your girl does indeed have CF. And Melissa's right, that Sweat test doesn't mean what it used to, so don't take no for an answer. Welcome to the site!
 
V

valigirl21

Guest
Not that I hope your daughter has CF, but a-typical CF like my son has presents much that way. He had a borderline sweat chloride (43), no MI, lots of respiritory infections, dx w/ asthma at age 1 (our ped wouldn't dx before age 1), lots of hosp., and if you beleive the tests RSV 5 times in 1 1/2, and no known genetic mutations. He is PI and FTT. You've come to the right spot if your girl does indeed have CF. And Melissa's right, that Sweat test doesn't mean what it used to, so don't take no for an answer. Welcome to the site!
 
V

valigirl21

Guest
Not that I hope your daughter has CF, but a-typical CF like my son has presents much that way. He had a borderline sweat chloride (43), no MI, lots of respiritory infections, dx w/ asthma at age 1 (our ped wouldn't dx before age 1), lots of hosp., and if you beleive the tests RSV 5 times in 1 1/2, and no known genetic mutations. He is PI and FTT. You've come to the right spot if your girl does indeed have CF. And Melissa's right, that Sweat test doesn't mean what it used to, so don't take no for an answer. Welcome to the site!
 
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