help for a worried mum

boo · Oct 13, 2006

Hello



I'm really sorry to post on a forum designed
for people who already have a diagnosis but I have been struggling
to find information and wondered if you could help. My son (fourth
child) is five months old. I recently took him to our local
paediatrician for his four month check and as usual I was worried
about his general development, compared to my other three. He is
much weaker physically than any of the others were and although
he's five months old, he still looks like a newborn to me. The
doctor was concerned by his gurgly breathing and said that he must
have bronchitis. I pointed out that he always seemed to have
breathed that way and that he was not unwell (no fever, no cough,
etc) so we hadn't been too worried about it. He prescribed
antibiotics, bronchodilators and something else to clear the mucus.
A week later, there was no change at all. The doctor just said to
continue the meds for another week, which we have done. No change
at all. The gurgling continues and to be honest, it has been there
more or less from birth but did not raise concern because the baby
was otherwise well.



He does not appear to have any problems with
digestion although he was hospitalised a week after he was born for
dehydration. His weight is always down on the 5th
percentile but the doctor is not overly concerned by this and has
put this down to the poor start (and dehydration) he experienced in
his early days due to poor feeding.



He sweats a lot more than my other children
ever did. His head absolutely pours with sweat when he cries. I
read a little about CF and about the saltiness of sweat, etc. but
although his sweat appears salty to me I have no idea what
constitutes "salty" sweat since we all have different taste buds
and I always thought everybody's sweat was
salty.



Anyway, CF has been raised as a concern by a
few family members because everyone has always felt there's
something "not quite right" about his health and nobody can quite
pinpoint what it is. As far as I am aware there's no family
history. My paediatrician never seems to listen when I have a
concern. A second opinion would be quite hard to arrange
(we're in Spain and the system is quite hard to negotiate at the
best of times) and I just want to know whether I am worrying over
nothing. I wondered if anyone could shed any light on whether the
constant gurgling (without a cough) is something to worry about and
whether there are other symptoms common in babies that might
suggest (or rule out) CF.



Thanks in advance for your help.



Boo

boo · Oct 13, 2006

Hello



I'm really sorry to post on a forum designed
for people who already have a diagnosis but I have been struggling
to find information and wondered if you could help. My son (fourth
child) is five months old. I recently took him to our local
paediatrician for his four month check and as usual I was worried
about his general development, compared to my other three. He is
much weaker physically than any of the others were and although
he's five months old, he still looks like a newborn to me. The
doctor was concerned by his gurgly breathing and said that he must
have bronchitis. I pointed out that he always seemed to have
breathed that way and that he was not unwell (no fever, no cough,
etc) so we hadn't been too worried about it. He prescribed
antibiotics, bronchodilators and something else to clear the mucus.
A week later, there was no change at all. The doctor just said to
continue the meds for another week, which we have done. No change
at all. The gurgling continues and to be honest, it has been there
more or less from birth but did not raise concern because the baby
was otherwise well.



He does not appear to have any problems with
digestion although he was hospitalised a week after he was born for
dehydration. His weight is always down on the 5th
percentile but the doctor is not overly concerned by this and has
put this down to the poor start (and dehydration) he experienced in
his early days due to poor feeding.



He sweats a lot more than my other children
ever did. His head absolutely pours with sweat when he cries. I
read a little about CF and about the saltiness of sweat, etc. but
although his sweat appears salty to me I have no idea what
constitutes "salty" sweat since we all have different taste buds
and I always thought everybody's sweat was
salty.



Anyway, CF has been raised as a concern by a
few family members because everyone has always felt there's
something "not quite right" about his health and nobody can quite
pinpoint what it is. As far as I am aware there's no family
history. My paediatrician never seems to listen when I have a
concern. A second opinion would be quite hard to arrange
(we're in Spain and the system is quite hard to negotiate at the
best of times) and I just want to know whether I am worrying over
nothing. I wondered if anyone could shed any light on whether the
constant gurgling (without a cough) is something to worry about and
whether there are other symptoms common in babies that might
suggest (or rule out) CF.



Thanks in advance for your help.



Boo

boo · Oct 13, 2006

Hello



I'm really sorry to post on a forum designed
for people who already have a diagnosis but I have been struggling
to find information and wondered if you could help. My son (fourth
child) is five months old. I recently took him to our local
paediatrician for his four month check and as usual I was worried
about his general development, compared to my other three. He is
much weaker physically than any of the others were and although
he's five months old, he still looks like a newborn to me. The
doctor was concerned by his gurgly breathing and said that he must
have bronchitis. I pointed out that he always seemed to have
breathed that way and that he was not unwell (no fever, no cough,
etc) so we hadn't been too worried about it. He prescribed
antibiotics, bronchodilators and something else to clear the mucus.
A week later, there was no change at all. The doctor just said to
continue the meds for another week, which we have done. No change
at all. The gurgling continues and to be honest, it has been there
more or less from birth but did not raise concern because the baby
was otherwise well.



He does not appear to have any problems with
digestion although he was hospitalised a week after he was born for
dehydration. His weight is always down on the 5th
percentile but the doctor is not overly concerned by this and has
put this down to the poor start (and dehydration) he experienced in
his early days due to poor feeding.



He sweats a lot more than my other children
ever did. His head absolutely pours with sweat when he cries. I
read a little about CF and about the saltiness of sweat, etc. but
although his sweat appears salty to me I have no idea what
constitutes "salty" sweat since we all have different taste buds
and I always thought everybody's sweat was
salty.



Anyway, CF has been raised as a concern by a
few family members because everyone has always felt there's
something "not quite right" about his health and nobody can quite
pinpoint what it is. As far as I am aware there's no family
history. My paediatrician never seems to listen when I have a
concern. A second opinion would be quite hard to arrange
(we're in Spain and the system is quite hard to negotiate at the
best of times) and I just want to know whether I am worrying over
nothing. I wondered if anyone could shed any light on whether the
constant gurgling (without a cough) is something to worry about and
whether there are other symptoms common in babies that might
suggest (or rule out) CF.



Thanks in advance for your help.



Boo

dyza · Oct 13, 2006

Hi Boo,
First thing, don't apologise for posting without having had a dx, most here were in your position at one stage, we all know how you are feeling.

The only way to confirm Cf would be a genetics test, this is done using a blood sample. A sweat test could give you some answers but as your boy is only 5 months it may not give an accurate reading.

As for being in Spain I can't really help with how their system works, there are some people here who are in Spain, maybe they can guide you more.

For more people to veiw your questions I would post in the family section, you will recieve a lot more views in that section.

And remember that the majority of users here are in the USA so take the time-difference into account here, the lack of response just now is because they are all in bed

dyza · Oct 13, 2006

Hi Boo,
First thing, don't apologise for posting without having had a dx, most here were in your position at one stage, we all know how you are feeling.

The only way to confirm Cf would be a genetics test, this is done using a blood sample. A sweat test could give you some answers but as your boy is only 5 months it may not give an accurate reading.

As for being in Spain I can't really help with how their system works, there are some people here who are in Spain, maybe they can guide you more.

For more people to veiw your questions I would post in the family section, you will recieve a lot more views in that section.

And remember that the majority of users here are in the USA so take the time-difference into account here, the lack of response just now is because they are all in bed

dyza · Oct 13, 2006

Hi Boo,
First thing, don't apologise for posting without having had a dx, most here were in your position at one stage, we all know how you are feeling.

The only way to confirm Cf would be a genetics test, this is done using a blood sample. A sweat test could give you some answers but as your boy is only 5 months it may not give an accurate reading.

As for being in Spain I can't really help with how their system works, there are some people here who are in Spain, maybe they can guide you more.

For more people to veiw your questions I would post in the family section, you will recieve a lot more views in that section.

And remember that the majority of users here are in the USA so take the time-difference into account here, the lack of response just now is because they are all in bed

folione · Oct 13, 2006

My son was diagnosed by a sweat test at 2 months - his test result was high enough on the scale that there was no doubt about it; some sweat test results can be in a grey area that's inconclusive.

"salty tasting" sweat in CF babies is pretty salty; closer to licking a potato chip than the background level of salt a non-CFer tastes like...but it's hardly scientific so try to get a sweat test at least.

Have you or the dad tested positive for a CF mutation? That might be another way to get the Dr. to decide CF testing is needed for the baby. If you've not been tested maybe it would be worth going down that road if you're being road-blocked by the pediatrician. But you need to know that the standard CF carrier tests only pick up a fraction of the mutations so there are plenty of false negatives (I had a false negative myself). Still, it may be worth a try.

My son had bad digestive issues from birth but at age 3 has had very little lung trouble - everybody with CF is different and especially in babies it can be awhile before typical symptoms show up; there are just so many different CF gene mutations and other factors.

Good luck with getting the testing you need - and don't be shy about being as big a pain in the neck as it takes to get what you want.

folione · Oct 13, 2006

My son was diagnosed by a sweat test at 2 months - his test result was high enough on the scale that there was no doubt about it; some sweat test results can be in a grey area that's inconclusive.

"salty tasting" sweat in CF babies is pretty salty; closer to licking a potato chip than the background level of salt a non-CFer tastes like...but it's hardly scientific so try to get a sweat test at least.

Have you or the dad tested positive for a CF mutation? That might be another way to get the Dr. to decide CF testing is needed for the baby. If you've not been tested maybe it would be worth going down that road if you're being road-blocked by the pediatrician. But you need to know that the standard CF carrier tests only pick up a fraction of the mutations so there are plenty of false negatives (I had a false negative myself). Still, it may be worth a try.

My son had bad digestive issues from birth but at age 3 has had very little lung trouble - everybody with CF is different and especially in babies it can be awhile before typical symptoms show up; there are just so many different CF gene mutations and other factors.

Good luck with getting the testing you need - and don't be shy about being as big a pain in the neck as it takes to get what you want.

folione · Oct 13, 2006

My son was diagnosed by a sweat test at 2 months - his test result was high enough on the scale that there was no doubt about it; some sweat test results can be in a grey area that's inconclusive.

"salty tasting" sweat in CF babies is pretty salty; closer to licking a potato chip than the background level of salt a non-CFer tastes like...but it's hardly scientific so try to get a sweat test at least.

Have you or the dad tested positive for a CF mutation? That might be another way to get the Dr. to decide CF testing is needed for the baby. If you've not been tested maybe it would be worth going down that road if you're being road-blocked by the pediatrician. But you need to know that the standard CF carrier tests only pick up a fraction of the mutations so there are plenty of false negatives (I had a false negative myself). Still, it may be worth a try.

My son had bad digestive issues from birth but at age 3 has had very little lung trouble - everybody with CF is different and especially in babies it can be awhile before typical symptoms show up; there are just so many different CF gene mutations and other factors.

Good luck with getting the testing you need - and don't be shy about being as big a pain in the neck as it takes to get what you want.

norcotrent · Oct 13, 2006

Boo,

First let me say, I hope you can get some answers soon. I'm not sure about Spain but in the US, we have a saying. " The squeeky wheel gets the grease "
Meaning, if you make enough noise, usually you will get what you want. I'm refering to additional testing or a second opinion. Also, I'd like to reiterate what Craig told you. Post this in the Family Forum for more replies.

Best Regards,

Trent

norcotrent · Oct 13, 2006

Boo,

First let me say, I hope you can get some answers soon. I'm not sure about Spain but in the US, we have a saying. " The squeeky wheel gets the grease "
Meaning, if you make enough noise, usually you will get what you want. I'm refering to additional testing or a second opinion. Also, I'd like to reiterate what Craig told you. Post this in the Family Forum for more replies.

Best Regards,

Trent

norcotrent · Oct 13, 2006

Boo,

First let me say, I hope you can get some answers soon. I'm not sure about Spain but in the US, we have a saying. " The squeeky wheel gets the grease "
Meaning, if you make enough noise, usually you will get what you want. I'm refering to additional testing or a second opinion. Also, I'd like to reiterate what Craig told you. Post this in the Family Forum for more replies.

Best Regards,

Trent

lemonstolemonade · Oct 13, 2006

When I "licked" my infant, her sweat burned my tongue it
was so salty. I, too, have a problem with the subjective nature of
our descriptions of symptoms. How greasy is greasy? How salty is
salty? How frequent is frequent? Perceptions are so hard to
overcome until you explain what you see and then see what they
actually mean.

Good luck with everything. You have come to the right place.
Everyone on here has something to contribute.

lemonstolemonade · Oct 13, 2006

When I "licked" my infant, her sweat burned my tongue it
was so salty. I, too, have a problem with the subjective nature of
our descriptions of symptoms. How greasy is greasy? How salty is
salty? How frequent is frequent? Perceptions are so hard to
overcome until you explain what you see and then see what they
actually mean.

Good luck with everything. You have come to the right place.
Everyone on here has something to contribute.

lemonstolemonade · Oct 13, 2006

When I "licked" my infant, her sweat burned my tongue it
was so salty. I, too, have a problem with the subjective nature of
our descriptions of symptoms. How greasy is greasy? How salty is
salty? How frequent is frequent? Perceptions are so hard to
overcome until you explain what you see and then see what they
actually mean.

Good luck with everything. You have come to the right place.
Everyone on here has something to contribute.

JazzysMom · Oct 13, 2006

This is my 3rd attempt to respond so please forgive me if it sounds short. I agree with pushing for the testing. Things have changed (from my experience & observation ~ not all medical society agrees) from the standard CF way of dx. Many people have gotten late diagnoses because they didnt fall into the "typical" guideliness. If he is tested & its Negative....great. If he is tested & its Positive then he gets earlier treatment. BTW as far as the antibiotics & bronchdialators that were prescribed. IF he does have CF.....we tend to have certain "bugs" & if those antibiotics are meant to treat them then its a waste. In addition the bronchodialators will help open up the airways, but in a CFer the mucous is extra thick & we use additional methods in getting that up & out. I wouldnt settle for anything less then a sweat test & even then push for the genetic testing. Good Luck & please keep us updated one way or the other!

JazzysMom · Oct 13, 2006

This is my 3rd attempt to respond so please forgive me if it sounds short. I agree with pushing for the testing. Things have changed (from my experience & observation ~ not all medical society agrees) from the standard CF way of dx. Many people have gotten late diagnoses because they didnt fall into the "typical" guideliness. If he is tested & its Negative....great. If he is tested & its Positive then he gets earlier treatment. BTW as far as the antibiotics & bronchdialators that were prescribed. IF he does have CF.....we tend to have certain "bugs" & if those antibiotics are meant to treat them then its a waste. In addition the bronchodialators will help open up the airways, but in a CFer the mucous is extra thick & we use additional methods in getting that up & out. I wouldnt settle for anything less then a sweat test & even then push for the genetic testing. Good Luck & please keep us updated one way or the other!

JazzysMom · Oct 13, 2006

This is my 3rd attempt to respond so please forgive me if it sounds short. I agree with pushing for the testing. Things have changed (from my experience & observation ~ not all medical society agrees) from the standard CF way of dx. Many people have gotten late diagnoses because they didnt fall into the "typical" guideliness. If he is tested & its Negative....great. If he is tested & its Positive then he gets earlier treatment. BTW as far as the antibiotics & bronchdialators that were prescribed. IF he does have CF.....we tend to have certain "bugs" & if those antibiotics are meant to treat them then its a waste. In addition the bronchodialators will help open up the airways, but in a CFer the mucous is extra thick & we use additional methods in getting that up & out. I wouldnt settle for anything less then a sweat test & even then push for the genetic testing. Good Luck & please keep us updated one way or the other!

melany · Oct 27, 2006

hi, 
 
it is never to early to be diagnosed with CF. actually the earlier
the better. a babies growth in the first two years of life is so
important especially in a baby with CF. if diagnosed early and put
on the correct meds, than the baby has a better chance of remaining
healthy longer. you may need to get a second opinion no
matter how hard it may be, remember this is your baby and if you do
not like the decisions your babies pediatrician is making you can
get answers somewhere else and dont stop until you know what is
going on. another thing dehydration is common in CF people because
of the amount of salt lost in their sweat. if your worried about
the amount of sweat lost try giving him a little bit of salt in his
formula. it will replace the extra salt lost and help prevent
dehydration. and if your baby does not have CF im pretty sure it
wont harm him. the constant gurgling i think is uncommon in babied
with CF but im not sure my doctors told me lung problems dont
usually develop until 8-10 years of age. the gurgling might be acid
reflux. my daughter has refux and sometimes she sounds congested
but its not constant. all i can say is push for that test my
daughter was 5 lbs 5 ozs when she was tested and i was told that it
couldnt be done until 6 lbs, but she sweat enough for them and it
came back positive. if you have anymore questions or concerns my
e-mail is geebs09@yahoo. take care of you and your baby. 
 
sincerely melany (mother of 6 month old sarena w/ CF)

melany · Oct 27, 2006

hi, 
 
it is never to early to be diagnosed with CF. actually the earlier
the better. a babies growth in the first two years of life is so
important especially in a baby with CF. if diagnosed early and put
on the correct meds, than the baby has a better chance of remaining
healthy longer. you may need to get a second opinion no
matter how hard it may be, remember this is your baby and if you do
not like the decisions your babies pediatrician is making you can
get answers somewhere else and dont stop until you know what is
going on. another thing dehydration is common in CF people because
of the amount of salt lost in their sweat. if your worried about
the amount of sweat lost try giving him a little bit of salt in his
formula. it will replace the extra salt lost and help prevent
dehydration. and if your baby does not have CF im pretty sure it
wont harm him. the constant gurgling i think is uncommon in babied
with CF but im not sure my doctors told me lung problems dont
usually develop until 8-10 years of age. the gurgling might be acid
reflux. my daughter has refux and sometimes she sounds congested
but its not constant. all i can say is push for that test my
daughter was 5 lbs 5 ozs when she was tested and i was told that it
couldnt be done until 6 lbs, but she sweat enough for them and it
came back positive. if you have anymore questions or concerns my
e-mail is geebs09@yahoo. take care of you and your baby. 
 
sincerely melany (mother of 6 month old sarena w/ CF)

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