help for a worried mum

[melany]

hi,<br>
<br>
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.<br>
<br>
sincerely melany (mother of 6 month old sarena w/ CF)

 

[Alyssa]

You are completely justified in thinking your child may have CF -- and don't be fooled because nobody in your family has ever had it either -- many people here (myself included) say the same thing -- no family history -- it is not uncommon to know nothing about CF until you are dealing with it.

My only other advice is change doctors if you can -- keep pushing for answers -- CF or not, it sounds like your doctor has been very lax in his approach to keeping/helping your baby healthy. If you are able to change doctors ask for full genetic testing (blood test) for all 1400 gene mutations -- that will give you the best diagnostic information.

 

[Alyssa]

You are completely justified in thinking your child may have CF -- and don't be fooled because nobody in your family has ever had it either -- many people here (myself included) say the same thing -- no family history -- it is not uncommon to know nothing about CF until you are dealing with it.

My only other advice is change doctors if you can -- keep pushing for answers -- CF or not, it sounds like your doctor has been very lax in his approach to keeping/helping your baby healthy. If you are able to change doctors ask for full genetic testing (blood test) for all 1400 gene mutations -- that will give you the best diagnostic information.

 

[Alyssa]

You are completely justified in thinking your child may have CF -- and don't be fooled because nobody in your family has ever had it either -- many people here (myself included) say the same thing -- no family history -- it is not uncommon to know nothing about CF until you are dealing with it.

My only other advice is change doctors if you can -- keep pushing for answers -- CF or not, it sounds like your doctor has been very lax in his approach to keeping/helping your baby healthy. If you are able to change doctors ask for full genetic testing (blood test) for all 1400 gene mutations -- that will give you the best diagnostic information.

 

[boo]

Thank you for your replies<br>
<br>
I was very encouraged to read that the gurgling is uncommon in
babies with CF because every person I seem to talk to about it says
(before I've even mentioned it) "Oh, that sounds like it could
be CF". These are all people who have no personal experience
of CF, so I try not to take their comments too seriously but
it's still very scary when they're all saying the same thing. So
thanks for the reassurance.<br>
<br>
I am so scared about CF that I have been delaying giving him
different solid foods. His poops have been pretty normal so far but
when I started him this week on gluten-free cereal, his poop was
really sour smelling. He's my fourth baby, so I know deep down that
it's 99% sure to be because his stomach is reacting to a new food
after 5 and a half months of milk only, but it doesn't stop me
worrying.  I am petrified of giving him a bigger range of food
in case his poop starts going funny and that makes me worry even
more.<br>
<br>
I have considered reflux because at first it seemed as though he
was always worse after a feed but now I think it's more to do with
the way he's breathing when he's feeding. we've worked out that
he's much worse when he's breathing heavily (if he's been crying or
if we make him laugh or if he's bouncing around on my lap or
something).   <br>
<br>
I haven't made any progress with testing. (sorry, you won't know
I'd been referred for tests unless you read the posting in the
Families section called "Posting from newly diagnosed
forum"). Anyway,  I called the hospital yesterday to see
when they were going to send the appointment and they hadn't even
received the referral/appointment request from my local health
clinic! Two weeks later! The health clinic said they had a
"backlog of appointments to send off". I told them it was
unacceptable to leave a baby with respiratory problems waiting for
any longer than necessary, so they said they would "try to
find his paperwork soon".  I've got another appointment
with the original paediatrician on Monday so I will ask him to give
them a big fat kick up the backside.<br>
<br>
I posted this on the families forum but I think they got bored with
my endless questions so nobody replied!. Do people with CF always
have mucus or is it just there when they get a cold or an infection
of some sort? The doctor said that my baby doesn't have any signs
of an infection so would he still have this mucus knocking around
if it was CF?<br>
<br>
Also, I have always suffered badly with chest infections.
 Started in my teens and has been a problem a few times a year
ever since.  I am never able to cough up anything although I
have one of those gunk-filled coughs that makes people turn around
and stare with their noses turned up. I hang myself upside down,
get my husband to pat me on the back but nothing helps. I always
thought that was pretty normal, when people have a cold, but my
husband said it's never happened to him.  If I am prone to
this kind of problem, is it possible that I have just passed on a
tendency towards this kind of mucus to my son without it having
anything to do with CF? You know, like passing on blue eyes or
small feet?  <br>
<br>
Thanks again for your replies. <br>
<br>

 

[boo]

Thank you for your replies<br>
<br>
I was very encouraged to read that the gurgling is uncommon in
babies with CF because every person I seem to talk to about it says
(before I've even mentioned it) "Oh, that sounds like it could
be CF". These are all people who have no personal experience
of CF, so I try not to take their comments too seriously but
it's still very scary when they're all saying the same thing. So
thanks for the reassurance.<br>
<br>
I am so scared about CF that I have been delaying giving him
different solid foods. His poops have been pretty normal so far but
when I started him this week on gluten-free cereal, his poop was
really sour smelling. He's my fourth baby, so I know deep down that
it's 99% sure to be because his stomach is reacting to a new food
after 5 and a half months of milk only, but it doesn't stop me
worrying.  I am petrified of giving him a bigger range of food
in case his poop starts going funny and that makes me worry even
more.<br>
<br>
I have considered reflux because at first it seemed as though he
was always worse after a feed but now I think it's more to do with
the way he's breathing when he's feeding. we've worked out that
he's much worse when he's breathing heavily (if he's been crying or
if we make him laugh or if he's bouncing around on my lap or
something).   <br>
<br>
I haven't made any progress with testing. (sorry, you won't know
I'd been referred for tests unless you read the posting in the
Families section called "Posting from newly diagnosed
forum"). Anyway,  I called the hospital yesterday to see
when they were going to send the appointment and they hadn't even
received the referral/appointment request from my local health
clinic! Two weeks later! The health clinic said they had a
"backlog of appointments to send off". I told them it was
unacceptable to leave a baby with respiratory problems waiting for
any longer than necessary, so they said they would "try to
find his paperwork soon".  I've got another appointment
with the original paediatrician on Monday so I will ask him to give
them a big fat kick up the backside.<br>
<br>
I posted this on the families forum but I think they got bored with
my endless questions so nobody replied!. Do people with CF always
have mucus or is it just there when they get a cold or an infection
of some sort? The doctor said that my baby doesn't have any signs
of an infection so would he still have this mucus knocking around
if it was CF?<br>
<br>
Also, I have always suffered badly with chest infections.
 Started in my teens and has been a problem a few times a year
ever since.  I am never able to cough up anything although I
have one of those gunk-filled coughs that makes people turn around
and stare with their noses turned up. I hang myself upside down,
get my husband to pat me on the back but nothing helps. I always
thought that was pretty normal, when people have a cold, but my
husband said it's never happened to him.  If I am prone to
this kind of problem, is it possible that I have just passed on a
tendency towards this kind of mucus to my son without it having
anything to do with CF? You know, like passing on blue eyes or
small feet?  <br>
<br>
Thanks again for your replies. <br>
<br>

 

[boo]

Thank you for your replies<br>
<br>
I was very encouraged to read that the gurgling is uncommon in
babies with CF because every person I seem to talk to about it says
(before I've even mentioned it) "Oh, that sounds like it could
be CF". These are all people who have no personal experience
of CF, so I try not to take their comments too seriously but
it's still very scary when they're all saying the same thing. So
thanks for the reassurance.<br>
<br>
I am so scared about CF that I have been delaying giving him
different solid foods. His poops have been pretty normal so far but
when I started him this week on gluten-free cereal, his poop was
really sour smelling. He's my fourth baby, so I know deep down that
it's 99% sure to be because his stomach is reacting to a new food
after 5 and a half months of milk only, but it doesn't stop me
worrying.  I am petrified of giving him a bigger range of food
in case his poop starts going funny and that makes me worry even
more.<br>
<br>
I have considered reflux because at first it seemed as though he
was always worse after a feed but now I think it's more to do with
the way he's breathing when he's feeding. we've worked out that
he's much worse when he's breathing heavily (if he's been crying or
if we make him laugh or if he's bouncing around on my lap or
something).   <br>
<br>
I haven't made any progress with testing. (sorry, you won't know
I'd been referred for tests unless you read the posting in the
Families section called "Posting from newly diagnosed
forum"). Anyway,  I called the hospital yesterday to see
when they were going to send the appointment and they hadn't even
received the referral/appointment request from my local health
clinic! Two weeks later! The health clinic said they had a
"backlog of appointments to send off". I told them it was
unacceptable to leave a baby with respiratory problems waiting for
any longer than necessary, so they said they would "try to
find his paperwork soon".  I've got another appointment
with the original paediatrician on Monday so I will ask him to give
them a big fat kick up the backside.<br>
<br>
I posted this on the families forum but I think they got bored with
my endless questions so nobody replied!. Do people with CF always
have mucus or is it just there when they get a cold or an infection
of some sort? The doctor said that my baby doesn't have any signs
of an infection so would he still have this mucus knocking around
if it was CF?<br>
<br>
Also, I have always suffered badly with chest infections.
 Started in my teens and has been a problem a few times a year
ever since.  I am never able to cough up anything although I
have one of those gunk-filled coughs that makes people turn around
and stare with their noses turned up. I hang myself upside down,
get my husband to pat me on the back but nothing helps. I always
thought that was pretty normal, when people have a cold, but my
husband said it's never happened to him.  If I am prone to
this kind of problem, is it possible that I have just passed on a
tendency towards this kind of mucus to my son without it having
anything to do with CF? You know, like passing on blue eyes or
small feet?  <br>
<br>
Thanks again for your replies. <br>
<br>

 

[Alyssa]

re: question do people with CF always have mucus hanging around or is that only with a cold -- the answer is yes and yes -- depends on the person, but generally speaking yes, people with CF usually have mucus in the lungs and they are coughing to get rid of it (along with using medications and therapies). It is also quite common that they only get extra mucus during/after a cold, when and infection settles in. It is also common to have no mucus/lung issues when you are younger -- things do progress as you get older.

Is that something that you could have just passed on and it is not CF -- well sure, anything is possible, but then if she does have CF, that makes you a carrier and you could also have carrier symptoms. On the other hand my husband also coughs up junk during a cold and I never do -- for what it's worth I did ask my husbands doctor if that was normal (for a non CF person to cough up junk during a cold) and he said yes it is.

How is that for a bunch of answers that lead in circles

 

[Alyssa]

re: question do people with CF always have mucus hanging around or is that only with a cold -- the answer is yes and yes -- depends on the person, but generally speaking yes, people with CF usually have mucus in the lungs and they are coughing to get rid of it (along with using medications and therapies). It is also quite common that they only get extra mucus during/after a cold, when and infection settles in. It is also common to have no mucus/lung issues when you are younger -- things do progress as you get older.

Is that something that you could have just passed on and it is not CF -- well sure, anything is possible, but then if she does have CF, that makes you a carrier and you could also have carrier symptoms. On the other hand my husband also coughs up junk during a cold and I never do -- for what it's worth I did ask my husbands doctor if that was normal (for a non CF person to cough up junk during a cold) and he said yes it is.

How is that for a bunch of answers that lead in circles

 

[Alyssa]

re: question do people with CF always have mucus hanging around or is that only with a cold -- the answer is yes and yes -- depends on the person, but generally speaking yes, people with CF usually have mucus in the lungs and they are coughing to get rid of it (along with using medications and therapies). It is also quite common that they only get extra mucus during/after a cold, when and infection settles in. It is also common to have no mucus/lung issues when you are younger -- things do progress as you get older.

Is that something that you could have just passed on and it is not CF -- well sure, anything is possible, but then if she does have CF, that makes you a carrier and you could also have carrier symptoms. On the other hand my husband also coughs up junk during a cold and I never do -- for what it's worth I did ask my husbands doctor if that was normal (for a non CF person to cough up junk during a cold) and he said yes it is.

How is that for a bunch of answers that lead in circles

 

[caymancf]

I am new to the forum and have been following your letters. I totaly understand what you are going through! My first son was always little for his age. Because my husband isnt tall, his doctor kept telling me that was the reason for his slow growth. It took me 6 years to finally get a dx. All of my sons problems have been digestive. I cant tell you anything about lung probs.
My only advice is; as scary as it might be to think about cf, fight with all you have to get the doctors to listen to your concerns. YOU are the mother, and no-one knows your child like you do. I am also the mother of 4(3 boys and 1 girl) My oldest son is the only one with cf and some of the doctors I went to told me that I had first time mother jitters!
With all my heart, I wish you the best and hope that you get a dx soon. At least to know yes or no and put you on the right track!
God Bless
Tiffany

 

[caymancf]

I am new to the forum and have been following your letters. I totaly understand what you are going through! My first son was always little for his age. Because my husband isnt tall, his doctor kept telling me that was the reason for his slow growth. It took me 6 years to finally get a dx. All of my sons problems have been digestive. I cant tell you anything about lung probs.
My only advice is; as scary as it might be to think about cf, fight with all you have to get the doctors to listen to your concerns. YOU are the mother, and no-one knows your child like you do. I am also the mother of 4(3 boys and 1 girl) My oldest son is the only one with cf and some of the doctors I went to told me that I had first time mother jitters!
With all my heart, I wish you the best and hope that you get a dx soon. At least to know yes or no and put you on the right track!
God Bless
Tiffany

 

[caymancf]

I am new to the forum and have been following your letters. I totaly understand what you are going through! My first son was always little for his age. Because my husband isnt tall, his doctor kept telling me that was the reason for his slow growth. It took me 6 years to finally get a dx. All of my sons problems have been digestive. I cant tell you anything about lung probs.
My only advice is; as scary as it might be to think about cf, fight with all you have to get the doctors to listen to your concerns. YOU are the mother, and no-one knows your child like you do. I am also the mother of 4(3 boys and 1 girl) My oldest son is the only one with cf and some of the doctors I went to told me that I had first time mother jitters!
With all my heart, I wish you the best and hope that you get a dx soon. At least to know yes or no and put you on the right track!
God Bless
Tiffany

 

[sweetwhite30]

<img src="i/expressions/light.gif" border="0"> My son was very small at birth and i only gained 8 pds with him and after he was born he lost 7 ounces and the next day he lost 4 more ounces and then the third day he lost 5 more ounces and i kept telling them something was wrong with this child he was not right something was wrong and they said nope just take him home so i did just that. for 5 weeks running back and forth to the peds and uncomfortable with their excuses what was wrong with him they nearly almost killed him none the less follow your instincts never wait push them to test the childi nearly lost my sweet angel but i got a lawyer in volved and he was finally given proper medical care and tests .... their excuse was they did not believe a white women and a black male could have a c.f positive child and this was in south florida at joe dimaggio childrens hospital in hollywood ,florida. I was yelled at by the g.I doctor tewlling me what did i want my son to be sick every time i mentioned test him for c.f. so thats why it is always good to fight these doctors that act like god and they know sqat. it is all presuptions and their believes that run their clouded decisions. So please get your child tested the earlier the better and my sons got his proper treatment and meds on his 5 week of life after all we have endured and got hot seated for has paid off ,he is a heathy c.f child and a special angel in the lifes he touches..So never back done to the doctors if your instincts says something is wrong and your unhappy go seek a opion of a specialist or flat out take your chuild to the er and tell them your doctor meds are not working and he is not hearing what you have to say. they will admit your child and run tests and you will have peace of mind in the end. It could be c.f or it could be your child needs a heart doctor but i am sure it is one of the 2.

 

[sweetwhite30]

<img src="i/expressions/light.gif" border="0"> My son was very small at birth and i only gained 8 pds with him and after he was born he lost 7 ounces and the next day he lost 4 more ounces and then the third day he lost 5 more ounces and i kept telling them something was wrong with this child he was not right something was wrong and they said nope just take him home so i did just that. for 5 weeks running back and forth to the peds and uncomfortable with their excuses what was wrong with him they nearly almost killed him none the less follow your instincts never wait push them to test the childi nearly lost my sweet angel but i got a lawyer in volved and he was finally given proper medical care and tests .... their excuse was they did not believe a white women and a black male could have a c.f positive child and this was in south florida at joe dimaggio childrens hospital in hollywood ,florida. I was yelled at by the g.I doctor tewlling me what did i want my son to be sick every time i mentioned test him for c.f. so thats why it is always good to fight these doctors that act like god and they know sqat. it is all presuptions and their believes that run their clouded decisions. So please get your child tested the earlier the better and my sons got his proper treatment and meds on his 5 week of life after all we have endured and got hot seated for has paid off ,he is a heathy c.f child and a special angel in the lifes he touches..So never back done to the doctors if your instincts says something is wrong and your unhappy go seek a opion of a specialist or flat out take your chuild to the er and tell them your doctor meds are not working and he is not hearing what you have to say. they will admit your child and run tests and you will have peace of mind in the end. It could be c.f or it could be your child needs a heart doctor but i am sure it is one of the 2.

 

[sweetwhite30]

<img src="i/expressions/light.gif" border="0"> My son was very small at birth and i only gained 8 pds with him and after he was born he lost 7 ounces and the next day he lost 4 more ounces and then the third day he lost 5 more ounces and i kept telling them something was wrong with this child he was not right something was wrong and they said nope just take him home so i did just that. for 5 weeks running back and forth to the peds and uncomfortable with their excuses what was wrong with him they nearly almost killed him none the less follow your instincts never wait push them to test the childi nearly lost my sweet angel but i got a lawyer in volved and he was finally given proper medical care and tests .... their excuse was they did not believe a white women and a black male could have a c.f positive child and this was in south florida at joe dimaggio childrens hospital in hollywood ,florida. I was yelled at by the g.I doctor tewlling me what did i want my son to be sick every time i mentioned test him for c.f. so thats why it is always good to fight these doctors that act like god and they know sqat. it is all presuptions and their believes that run their clouded decisions. So please get your child tested the earlier the better and my sons got his proper treatment and meds on his 5 week of life after all we have endured and got hot seated for has paid off ,he is a heathy c.f child and a special angel in the lifes he touches..So never back done to the doctors if your instincts says something is wrong and your unhappy go seek a opion of a specialist or flat out take your chuild to the er and tell them your doctor meds are not working and he is not hearing what you have to say. they will admit your child and run tests and you will have peace of mind in the end. It could be c.f or it could be your child needs a heart doctor but i am sure it is one of the 2.

 

[biz]

hi Boo i found out my baby had cf when he was less then a week old. after speaking the childrens hospital that day we were up there the next for a sweat test which i was told is the most accurate test to prove someone has CF. please i beg you have your child tested he is only five months old and you would want to get the treatment asap. i do not want to frighten you by saying this but that caugh he has always had (if he has cf) has already done damage to his lungs. and his weight should not be that low even if he doesnt have cf. if he does there is thick mucas around it and it doesnt absord fat. please get him tested skip the peditrition and contact your childrens hospital to have him tested. good luck and i truly hope he is free od cf. you will feel better when you get a result either way.

mother/9 monthsonw/cf

 

[biz]

hi Boo i found out my baby had cf when he was less then a week old. after speaking the childrens hospital that day we were up there the next for a sweat test which i was told is the most accurate test to prove someone has CF. please i beg you have your child tested he is only five months old and you would want to get the treatment asap. i do not want to frighten you by saying this but that caugh he has always had (if he has cf) has already done damage to his lungs. and his weight should not be that low even if he doesnt have cf. if he does there is thick mucas around it and it doesnt absord fat. please get him tested skip the peditrition and contact your childrens hospital to have him tested. good luck and i truly hope he is free od cf. you will feel better when you get a result either way.

mother/9 monthsonw/cf

 

[biz]

hi Boo i found out my baby had cf when he was less then a week old. after speaking the childrens hospital that day we were up there the next for a sweat test which i was told is the most accurate test to prove someone has CF. please i beg you have your child tested he is only five months old and you would want to get the treatment asap. i do not want to frighten you by saying this but that caugh he has always had (if he has cf) has already done damage to his lungs. and his weight should not be that low even if he doesnt have cf. if he does there is thick mucas around it and it doesnt absord fat. please get him tested skip the peditrition and contact your childrens hospital to have him tested. good luck and i truly hope he is free od cf. you will feel better when you get a result either way.

mother/9 monthsonw/cf

 

[Angel868]

Listen I am 20 with cystic fibrosis and female. I read about CF the symptoms, what causes it, and I know a lot about it besides having it. The crackling does worry me. Listen to the baby's chest and see if you hear crackling and wheezing. That means there could be mucous that clogs the airways. That is one symptom!!! If the baby seems like she eats well and does not gain wait and has a pot belly. That means she is not digesting food properly. Thats another sign. Taste the sweat on the baby and then your own(ewwe); that will at least let you know if hers tastes any different than yours. Than taste salt. Then youll know. Take her for a genetic test and sweat test ask the doctor about it. let me know