posting from "newly diagnosed" forum

boo · Oct 14, 2006

posting from "newly diagnosed

Thank you all for your replies. I am due to go back to the doctor
in three days. I am hoping that he will investigate further once he
sees that the second round of antibiotics and other meds has made
no difference. Hopefully I won't have to push too hard.
He seems to blame everything on this early period of
dehydration but now that I think back, although my son was feeding
pretty poorly, he WAS feeding and it now strikes me as odd that he
got so dehydrated in the first place. This has never been
investigated. Is there a link with dehydration in babies
and CF? 
 
With regard to his sweat, it IS salty (stings my tongue at times)
but my 18month old (my comparison) doesn't tend to sweat as much
and his head doesn't taste of anything at all, so it's hard to
tell. I think I will stop licking the poor kid's head now and just
wait and see what the doctor says! 
 
His poop appears normal to me. Maybe once a week he'll pass one
that's very oily and curdled but the rest of the time it's
clay-coloured and not too smelly at all. I'm not as
worried about his digestion as his breathing. 
 
Once again, thank you all for you replies. It has made me much more
determined to make sure the doctor looks into what's causing his
symptoms. I will keep you all posted either way. 
 
Boo

boo · Oct 16, 2006

posting from "newly diagnosed

An update and some further questions... 
 
We saw the paediatrician again today. We happened to have an
appointment when my baby was breathing REALLY noisily so the doctor
needed NO convincing to take my concerns seriously. He said
the meds should really have cleared the mucus and asked about my
family history. I told him there was a history of premature
deaths on my mother's side (early adulthood) but that they were all
listed as TB or pneumonia. I asked him if he was thinking
about CF and he said yes, your son probably has CF...but don't
worry! 
 
He made a referral to the local hospital for tests and said I
should get an appointment in the next two months. Hopefully
it won't be that long. 
 
So, I'm sorry to be so demanding but here are a few more
questions: 
 
Is a family history of TB relevant? The relatives all died many
years ago (in the 1930s and 1940s). 
 
Do babies with CF often present with unusual postures? My baby
sleeps in a very twisted way with his head thrown back and I
wondered whether this could be his way of breathing more
clearly? 
 
Do babies with CF have more trouble breathing when they are laying
down/sitting up...is there any difference with positioning? My
baby's breathing is MUCH more laboured when he is upright.
 
 
Regardless of the diagnosis, I'm not happy with my baby having
difficulty breathing for the next two months. Is there anything
that I can do to help him breathe a little bit easier and clear
some of the mucus he's got? I have a medication for this
(Terbasmin Expectorate) but he's already been taking this for two
weeks and it doesn't seem to help. 
 
Thank you in advance for any
help.

boo · Oct 16, 2006

posting from "newly diagnosed

An update and some further questions... 
 
We saw the paediatrician again today. We happened to have an
appointment when my baby was breathing REALLY noisily so the doctor
needed NO convincing to take my concerns seriously. He said
the meds should really have cleared the mucus and asked about my
family history. I told him there was a history of premature
deaths on my mother's side (early adulthood) but that they were all
listed as TB or pneumonia. I asked him if he was thinking
about CF and he said yes, your son probably has CF...but don't
worry! 
 
He made a referral to the local hospital for tests and said I
should get an appointment in the next two months. Hopefully
it won't be that long. 
 
So, I'm sorry to be so demanding but here are a few more
questions: 
 
Is a family history of TB relevant? The relatives all died many
years ago (in the 1930s and 1940s). 
 
Do babies with CF often present with unusual postures? My baby
sleeps in a very twisted way with his head thrown back and I
wondered whether this could be his way of breathing more
clearly? 
 
Do babies with CF have more trouble breathing when they are laying
down/sitting up...is there any difference with positioning? My
baby's breathing is MUCH more laboured when he is upright.
 
 
Regardless of the diagnosis, I'm not happy with my baby having
difficulty breathing for the next two months. Is there anything
that I can do to help him breathe a little bit easier and clear
some of the mucus he's got? I have a medication for this
(Terbasmin Expectorate) but he's already been taking this for two
weeks and it doesn't seem to help. 
 
Thank you in advance for any
help.

boo · Oct 16, 2006

posting from "newly diagnosed

An update and some further questions... 
 
We saw the paediatrician again today. We happened to have an
appointment when my baby was breathing REALLY noisily so the doctor
needed NO convincing to take my concerns seriously. He said
the meds should really have cleared the mucus and asked about my
family history. I told him there was a history of premature
deaths on my mother's side (early adulthood) but that they were all
listed as TB or pneumonia. I asked him if he was thinking
about CF and he said yes, your son probably has CF...but don't
worry! 
 
He made a referral to the local hospital for tests and said I
should get an appointment in the next two months. Hopefully
it won't be that long. 
 
So, I'm sorry to be so demanding but here are a few more
questions: 
 
Is a family history of TB relevant? The relatives all died many
years ago (in the 1930s and 1940s). 
 
Do babies with CF often present with unusual postures? My baby
sleeps in a very twisted way with his head thrown back and I
wondered whether this could be his way of breathing more
clearly? 
 
Do babies with CF have more trouble breathing when they are laying
down/sitting up...is there any difference with positioning? My
baby's breathing is MUCH more laboured when he is upright.
 
 
Regardless of the diagnosis, I'm not happy with my baby having
difficulty breathing for the next two months. Is there anything
that I can do to help him breathe a little bit easier and clear
some of the mucus he's got? I have a medication for this
(Terbasmin Expectorate) but he's already been taking this for two
weeks and it doesn't seem to help. 
 
Thank you in advance for any
help.

JazzysMom · Oct 16, 2006

posting from "newly diagnosed

I personally am not aware of TB connections, but then I have no family history know. However; my Dads brother died at an early age in the early 1900's of Pneumonia. Could have been CF or TB who knows? As to the different postions. Just think of when you are sick. When I have a headcold I can breath better if my head is in certain positions allowing the nasal passages to open. The same goes with the lungs & breathing. To answer your ???....yes positions can mean something. As to how many infants/newborns display what your child does I dont know. Someone else with young children might have input tho....please keep us updated. I am glad they took you seriously. It is sad when we want our children to be "sick" so the doctor sees what we do.

JazzysMom · Oct 16, 2006

posting from "newly diagnosed

I personally am not aware of TB connections, but then I have no family history know. However; my Dads brother died at an early age in the early 1900's of Pneumonia. Could have been CF or TB who knows? As to the different postions. Just think of when you are sick. When I have a headcold I can breath better if my head is in certain positions allowing the nasal passages to open. The same goes with the lungs & breathing. To answer your ???....yes positions can mean something. As to how many infants/newborns display what your child does I dont know. Someone else with young children might have input tho....please keep us updated. I am glad they took you seriously. It is sad when we want our children to be "sick" so the doctor sees what we do.

JazzysMom · Oct 16, 2006

posting from "newly diagnosed

I personally am not aware of TB connections, but then I have no family history know. However; my Dads brother died at an early age in the early 1900's of Pneumonia. Could have been CF or TB who knows? As to the different postions. Just think of when you are sick. When I have a headcold I can breath better if my head is in certain positions allowing the nasal passages to open. The same goes with the lungs & breathing. To answer your ???....yes positions can mean something. As to how many infants/newborns display what your child does I dont know. Someone else with young children might have input tho....please keep us updated. I am glad they took you seriously. It is sad when we want our children to be "sick" so the doctor sees what we do.

LisaV · Oct 16, 2006

posting from "newly diagnosed

The old TB deaths are relavent only in the sense that they are showing death from lung disease at a time when they didn't have the tools to do proper lung disease diagnosis (couldn't really tell one thing from another). My husband's family shows young deaths from TB and from asthma -- but who knew? and who knows?

There was an awful lot of TB actually around then so that's another reason why it is hard to say.

Good that you have good docs to work with tho.

LisaV · Oct 16, 2006

posting from "newly diagnosed

The old TB deaths are relavent only in the sense that they are showing death from lung disease at a time when they didn't have the tools to do proper lung disease diagnosis (couldn't really tell one thing from another). My husband's family shows young deaths from TB and from asthma -- but who knew? and who knows?

There was an awful lot of TB actually around then so that's another reason why it is hard to say.

Good that you have good docs to work with tho.

LisaV · Oct 16, 2006

posting from "newly diagnosed

The old TB deaths are relavent only in the sense that they are showing death from lung disease at a time when they didn't have the tools to do proper lung disease diagnosis (couldn't really tell one thing from another). My husband's family shows young deaths from TB and from asthma -- but who knew? and who knows?

There was an awful lot of TB actually around then so that's another reason why it is hard to say.

Good that you have good docs to work with tho.

CFHockeyMom · Oct 16, 2006

posting from "newly diagnosed

<div class="FTQUOTE"><begin quote>Is a family history of TB relevant? The relatives all died many years ago (in the 1930s and 1940s).</end quote></div>

It's difficult to say. CF wasn't labeled as such until the 1930's and I don't believe CF was an official diagnosis until the 50's so you wouldn't see that necessarily as a cause of death. It's my understanding that many CF deaths were eroneously labeled as complications arising from pneumonia.

Since CF is a relatively new (by medical standards) diagnosis, it isn't unusual to not have a known family history. A lot of Peds make the mistake of dismissing concerns because there is no family history. That's exactly what happened to us.

I wouldn't wait the two months. Contact the CFF and maybe they can help you locate a qualified clinic in Spain. The sooner you can get a diagnosis, the sooner you can start treatment. Also know that a sweat test can be misleading. Positive is positive but negative doesn't always mean negative. Insist on a blood test as well.

CFHockeyMom · Oct 16, 2006

posting from "newly diagnosed

<div class="FTQUOTE"><begin quote>Is a family history of TB relevant? The relatives all died many years ago (in the 1930s and 1940s).</end quote></div>

It's difficult to say. CF wasn't labeled as such until the 1930's and I don't believe CF was an official diagnosis until the 50's so you wouldn't see that necessarily as a cause of death. It's my understanding that many CF deaths were eroneously labeled as complications arising from pneumonia.

Since CF is a relatively new (by medical standards) diagnosis, it isn't unusual to not have a known family history. A lot of Peds make the mistake of dismissing concerns because there is no family history. That's exactly what happened to us.

I wouldn't wait the two months. Contact the CFF and maybe they can help you locate a qualified clinic in Spain. The sooner you can get a diagnosis, the sooner you can start treatment. Also know that a sweat test can be misleading. Positive is positive but negative doesn't always mean negative. Insist on a blood test as well.

CFHockeyMom · Oct 16, 2006

posting from "newly diagnosed

<div class="FTQUOTE"><begin quote>Is a family history of TB relevant? The relatives all died many years ago (in the 1930s and 1940s).</end quote></div>

It's difficult to say. CF wasn't labeled as such until the 1930's and I don't believe CF was an official diagnosis until the 50's so you wouldn't see that necessarily as a cause of death. It's my understanding that many CF deaths were eroneously labeled as complications arising from pneumonia.

Since CF is a relatively new (by medical standards) diagnosis, it isn't unusual to not have a known family history. A lot of Peds make the mistake of dismissing concerns because there is no family history. That's exactly what happened to us.

I wouldn't wait the two months. Contact the CFF and maybe they can help you locate a qualified clinic in Spain. The sooner you can get a diagnosis, the sooner you can start treatment. Also know that a sweat test can be misleading. Positive is positive but negative doesn't always mean negative. Insist on a blood test as well.

boo · Oct 18, 2006

posting from "newly diagnosed

Hi again. I'm really sorry to keep on posting and asking so many
questions. I really thought I would be able to stop worrying for a
while having secured the referral for a sweat test (which I
recognize we're very lucky to have secured so quickly, having read
some of your stories). But I find myself unable to think about
anything else. My family history search has drawn blanks (and quite
defensive reactions from some quarters) although my mother has
uncovered one uncle who died of an unknown cause but who had
"water on his lungs from the war". And my
grandmother's sister, who was a "very sickly" (no further
details) child and died in her early twenties during childbirth.
My family have all raised more concerns about MY health in
relation to CF than about any past family history. I have
always suffered from severe chest infections and have for as long
as I can remember never been able to breath through my right
nostril (always thought that was the shape of my nose) but am now
wondering whether this could be a polyp (never even heard of one
until I found this site). These things are just part of me
and I'm perfectly happy not to know why but they now have me
feeling that they have a bearing on my son's health and have made
me much more scared about the sweat test. 
 
I have a few more questions... 
 
With no other signs of infection/cold why else could my baby be
breathing like this? It is almost constant gurgling while he's
awake but he seems to be OK when he's
asleep. 

 
We may have to wait some time for any tests to be done. In
the meantime, if the baby continues to be "well" (he's
very alert and happy) can the mucus alone be doing him any harm? If
so, how can I help him get rid of it? 
 
Thank you so much for taking the time to read my ranting and my
concerns. And especially thank you in advance for any replies. 
 
Boo

boo · Oct 18, 2006

posting from "newly diagnosed

Hi again. I'm really sorry to keep on posting and asking so many
questions. I really thought I would be able to stop worrying for a
while having secured the referral for a sweat test (which I
recognize we're very lucky to have secured so quickly, having read
some of your stories). But I find myself unable to think about
anything else. My family history search has drawn blanks (and quite
defensive reactions from some quarters) although my mother has
uncovered one uncle who died of an unknown cause but who had
"water on his lungs from the war". And my
grandmother's sister, who was a "very sickly" (no further
details) child and died in her early twenties during childbirth.
My family have all raised more concerns about MY health in
relation to CF than about any past family history. I have
always suffered from severe chest infections and have for as long
as I can remember never been able to breath through my right
nostril (always thought that was the shape of my nose) but am now
wondering whether this could be a polyp (never even heard of one
until I found this site). These things are just part of me
and I'm perfectly happy not to know why but they now have me
feeling that they have a bearing on my son's health and have made
me much more scared about the sweat test. 
 
I have a few more questions... 
 
With no other signs of infection/cold why else could my baby be
breathing like this? It is almost constant gurgling while he's
awake but he seems to be OK when he's
asleep. 

 
We may have to wait some time for any tests to be done. In
the meantime, if the baby continues to be "well" (he's
very alert and happy) can the mucus alone be doing him any harm? If
so, how can I help him get rid of it? 
 
Thank you so much for taking the time to read my ranting and my
concerns. And especially thank you in advance for any replies. 
 
Boo

boo · Oct 18, 2006

posting from "newly diagnosed

Hi again. I'm really sorry to keep on posting and asking so many
questions. I really thought I would be able to stop worrying for a
while having secured the referral for a sweat test (which I
recognize we're very lucky to have secured so quickly, having read
some of your stories). But I find myself unable to think about
anything else. My family history search has drawn blanks (and quite
defensive reactions from some quarters) although my mother has
uncovered one uncle who died of an unknown cause but who had
"water on his lungs from the war". And my
grandmother's sister, who was a "very sickly" (no further
details) child and died in her early twenties during childbirth.
My family have all raised more concerns about MY health in
relation to CF than about any past family history. I have
always suffered from severe chest infections and have for as long
as I can remember never been able to breath through my right
nostril (always thought that was the shape of my nose) but am now
wondering whether this could be a polyp (never even heard of one
until I found this site). These things are just part of me
and I'm perfectly happy not to know why but they now have me
feeling that they have a bearing on my son's health and have made
me much more scared about the sweat test. 
 
I have a few more questions... 
 
With no other signs of infection/cold why else could my baby be
breathing like this? It is almost constant gurgling while he's
awake but he seems to be OK when he's
asleep. 

 
We may have to wait some time for any tests to be done. In
the meantime, if the baby continues to be "well" (he's
very alert and happy) can the mucus alone be doing him any harm? If
so, how can I help him get rid of it? 
 
Thank you so much for taking the time to read my ranting and my
concerns. And especially thank you in advance for any replies. 
 
Boo

Ratatosk · Oct 18, 2006

posting from "newly diagnosed

I would push for genetic blood testing. DS was diagnosed shortly after he was born due to meconium illeus; however, he had a normal sweat test.

Ratatosk · Oct 18, 2006

posting from "newly diagnosed

I would push for genetic blood testing. DS was diagnosed shortly after he was born due to meconium illeus; however, he had a normal sweat test.

Ratatosk · Oct 18, 2006

posting from "newly diagnosed

I would push for genetic blood testing. DS was diagnosed shortly after he was born due to meconium illeus; however, he had a normal sweat test.

coltsfan715 · Oct 18, 2006

posting from "newly diagnosed

Yes the mucus alone can be doing harm to his lungs. He may seem healthy but if it is untreated and he is culturing some type of bacteria - I am thinking Psuedomonas then there is the likelihood that there is being some damage done to his lungs.

I would maybe ask the doctor if there is something he could prescribe to help with his breathing until you are able to get the test done and get the results. If he truly thinks your son had CF and he thinks that the meds may help him there is no real reason he can't give you something to help now. There are many people that get meds that seem to be used more commonly for CF patients before they get a confirmed diagnosis.

Bottom line it is great that they are getting him tested, but it is not necessary for him to have difficulty breathing for 2 months or more while you wait for the testing and the results.

As for your concerns about your health. It is possible you have a polyp yes - I personally have a polyp but do not have major issues with nasal blockage on most days. I also have a deviated septum and that tends to cause me more breathing difficulties than the polyp I have. Basically I am saying that polyps are possible but there may be something else too - like a deviated septum that is causing the breathing difficulty in the one nostril. If you are overly concerned about it I would ask for yourself to be tested once you get your sons results back or maybe talk to your doc about the nasal issues. If they see a polyp then you have your answer to the polyp question - but again it may be something else.

Hope things move along quickly and things get better for your little one soon.

Take Care,
Lindsey

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