what could this be?

bayleesmummy

New member
hi, i have been on here before about mu son... he was constantly having pneumonias and chest infections and does not tolerate feeds well. he is actually getting better with the chest infections for a while now so i am not so sure it could be cf... i was just wondering if anyone could answer this question for me? he has just started smelling like a fish... even straight after i bath him with scented baby wash... its a very strong odour and smells kinda salty but very much like fish but hmmm well... off fish kinda. does anybody know what this could mean? what could it be happening from? is there any other diseases or illnesses that can cause this? i am very concerned about him right now and we just cant seem to get a dx for him. any insight is well appreciated.
 

bayleesmummy

New member
hi, i have been on here before about mu son... he was constantly having pneumonias and chest infections and does not tolerate feeds well. he is actually getting better with the chest infections for a while now so i am not so sure it could be cf... i was just wondering if anyone could answer this question for me? he has just started smelling like a fish... even straight after i bath him with scented baby wash... its a very strong odour and smells kinda salty but very much like fish but hmmm well... off fish kinda. does anybody know what this could mean? what could it be happening from? is there any other diseases or illnesses that can cause this? i am very concerned about him right now and we just cant seem to get a dx for him. any insight is well appreciated.
 

bayleesmummy

New member
hi, i have been on here before about mu son... he was constantly having pneumonias and chest infections and does not tolerate feeds well. he is actually getting better with the chest infections for a while now so i am not so sure it could be cf... i was just wondering if anyone could answer this question for me? he has just started smelling like a fish... even straight after i bath him with scented baby wash... its a very strong odour and smells kinda salty but very much like fish but hmmm well... off fish kinda. does anybody know what this could mean? what could it be happening from? is there any other diseases or illnesses that can cause this? i am very concerned about him right now and we just cant seem to get a dx for him. any insight is well appreciated.
 

bayleesmummy

New member
hi, i have been on here before about mu son... he was constantly having pneumonias and chest infections and does not tolerate feeds well. he is actually getting better with the chest infections for a while now so i am not so sure it could be cf... i was just wondering if anyone could answer this question for me? he has just started smelling like a fish... even straight after i bath him with scented baby wash... its a very strong odour and smells kinda salty but very much like fish but hmmm well... off fish kinda. does anybody know what this could mean? what could it be happening from? is there any other diseases or illnesses that can cause this? i am very concerned about him right now and we just cant seem to get a dx for him. any insight is well appreciated.
 

bayleesmummy

New member
hi, i have been on here before about mu son... he was constantly having pneumonias and chest infections and does not tolerate feeds well. he is actually getting better with the chest infections for a while now so i am not so sure it could be cf... i was just wondering if anyone could answer this question for me? he has just started smelling like a fish... even straight after i bath him with scented baby wash... its a very strong odour and smells kinda salty but very much like fish but hmmm well... off fish kinda. does anybody know what this could mean? what could it be happening from? is there any other diseases or illnesses that can cause this? i am very concerned about him right now and we just cant seem to get a dx for him. any insight is well appreciated.
 

Alyssa

New member
Just because he hasn't had a recent problem with chest/lung infection does not rule out the possibility of CF. I don't understand why your doctor seems to think CF symptoms are only in the lungs.

From what you have posted in the past I still think it is very important that you continue to push for more CF testing to rule out CF -- not just be told "I don't think so" by a doctor -- they need to prove it to you -- it's a dangerous game for them to be playing and it is you and your son who will loose out, not the doctor. CF needs to be treated as CF, your child's health will most likely improve if you could get him the correct diagnosis and treatment.

As for the fishy smell - I'm not sure. My only thoughts are - I know there is some sort of bacteria that women can get (like a yeast infection - in the vagina) which can produce that type of a smell. I suppose it might be possible that a person have that same bacteria in his throat or lungs too??? Purely speculation about that. Also some people have commented that when they are culturing the pseudomonus bacteria in their lungs, there spouse has commented they "have that smell" about them -- don't know if they described it as a fishy smell though.

Regardless of all my guesses -- I really think you should take him in about the smell -- seem like it has to be a bacteria thing somehow .... but also see if you can make any headway into getting more CF testing done -- the GI symptoms and past lung issues really sounds like he could have CF.

Did you notice on one of your previous posts, another woman from Australia posted a phone number for you to call? I think it might have been a CF center --- sure seems like your doctor is not steering you in the right direction yet.
 

Alyssa

New member
Just because he hasn't had a recent problem with chest/lung infection does not rule out the possibility of CF. I don't understand why your doctor seems to think CF symptoms are only in the lungs.

From what you have posted in the past I still think it is very important that you continue to push for more CF testing to rule out CF -- not just be told "I don't think so" by a doctor -- they need to prove it to you -- it's a dangerous game for them to be playing and it is you and your son who will loose out, not the doctor. CF needs to be treated as CF, your child's health will most likely improve if you could get him the correct diagnosis and treatment.

As for the fishy smell - I'm not sure. My only thoughts are - I know there is some sort of bacteria that women can get (like a yeast infection - in the vagina) which can produce that type of a smell. I suppose it might be possible that a person have that same bacteria in his throat or lungs too??? Purely speculation about that. Also some people have commented that when they are culturing the pseudomonus bacteria in their lungs, there spouse has commented they "have that smell" about them -- don't know if they described it as a fishy smell though.

Regardless of all my guesses -- I really think you should take him in about the smell -- seem like it has to be a bacteria thing somehow .... but also see if you can make any headway into getting more CF testing done -- the GI symptoms and past lung issues really sounds like he could have CF.

Did you notice on one of your previous posts, another woman from Australia posted a phone number for you to call? I think it might have been a CF center --- sure seems like your doctor is not steering you in the right direction yet.
 

Alyssa

New member
Just because he hasn't had a recent problem with chest/lung infection does not rule out the possibility of CF. I don't understand why your doctor seems to think CF symptoms are only in the lungs.

From what you have posted in the past I still think it is very important that you continue to push for more CF testing to rule out CF -- not just be told "I don't think so" by a doctor -- they need to prove it to you -- it's a dangerous game for them to be playing and it is you and your son who will loose out, not the doctor. CF needs to be treated as CF, your child's health will most likely improve if you could get him the correct diagnosis and treatment.

As for the fishy smell - I'm not sure. My only thoughts are - I know there is some sort of bacteria that women can get (like a yeast infection - in the vagina) which can produce that type of a smell. I suppose it might be possible that a person have that same bacteria in his throat or lungs too??? Purely speculation about that. Also some people have commented that when they are culturing the pseudomonus bacteria in their lungs, there spouse has commented they "have that smell" about them -- don't know if they described it as a fishy smell though.

Regardless of all my guesses -- I really think you should take him in about the smell -- seem like it has to be a bacteria thing somehow .... but also see if you can make any headway into getting more CF testing done -- the GI symptoms and past lung issues really sounds like he could have CF.

Did you notice on one of your previous posts, another woman from Australia posted a phone number for you to call? I think it might have been a CF center --- sure seems like your doctor is not steering you in the right direction yet.
 

Alyssa

New member
Just because he hasn't had a recent problem with chest/lung infection does not rule out the possibility of CF. I don't understand why your doctor seems to think CF symptoms are only in the lungs.

From what you have posted in the past I still think it is very important that you continue to push for more CF testing to rule out CF -- not just be told "I don't think so" by a doctor -- they need to prove it to you -- it's a dangerous game for them to be playing and it is you and your son who will loose out, not the doctor. CF needs to be treated as CF, your child's health will most likely improve if you could get him the correct diagnosis and treatment.

As for the fishy smell - I'm not sure. My only thoughts are - I know there is some sort of bacteria that women can get (like a yeast infection - in the vagina) which can produce that type of a smell. I suppose it might be possible that a person have that same bacteria in his throat or lungs too??? Purely speculation about that. Also some people have commented that when they are culturing the pseudomonus bacteria in their lungs, there spouse has commented they "have that smell" about them -- don't know if they described it as a fishy smell though.

Regardless of all my guesses -- I really think you should take him in about the smell -- seem like it has to be a bacteria thing somehow .... but also see if you can make any headway into getting more CF testing done -- the GI symptoms and past lung issues really sounds like he could have CF.

Did you notice on one of your previous posts, another woman from Australia posted a phone number for you to call? I think it might have been a CF center --- sure seems like your doctor is not steering you in the right direction yet.
 

Alyssa

New member
Just because he hasn't had a recent problem with chest/lung infection does not rule out the possibility of CF. I don't understand why your doctor seems to think CF symptoms are only in the lungs.

From what you have posted in the past I still think it is very important that you continue to push for more CF testing to rule out CF -- not just be told "I don't think so" by a doctor -- they need to prove it to you -- it's a dangerous game for them to be playing and it is you and your son who will loose out, not the doctor. CF needs to be treated as CF, your child's health will most likely improve if you could get him the correct diagnosis and treatment.

As for the fishy smell - I'm not sure. My only thoughts are - I know there is some sort of bacteria that women can get (like a yeast infection - in the vagina) which can produce that type of a smell. I suppose it might be possible that a person have that same bacteria in his throat or lungs too??? Purely speculation about that. Also some people have commented that when they are culturing the pseudomonus bacteria in their lungs, there spouse has commented they "have that smell" about them -- don't know if they described it as a fishy smell though.

Regardless of all my guesses -- I really think you should take him in about the smell -- seem like it has to be a bacteria thing somehow .... but also see if you can make any headway into getting more CF testing done -- the GI symptoms and past lung issues really sounds like he could have CF.

Did you notice on one of your previous posts, another woman from Australia posted a phone number for you to call? I think it might have been a CF center --- sure seems like your doctor is not steering you in the right direction yet.
 

bayleesmummy

New member
hi, thank you so much for your answer... i do realise he could still have cf but the drs wont listen they just think its severe reflux causing the respiratory illnesses and the gut issues... i did see the phone number but havent actually called it... i will though... i guess i had better ask the pead about it today when i take him in... i am just so over all this medical hoo haa and want my little boy to be healthy. he is getting the nissen fundoplication done for his vomiting and apneas soon and also getting a gastrostomy tube put in... thank you and i will update after i see pead today.
 

bayleesmummy

New member
hi, thank you so much for your answer... i do realise he could still have cf but the drs wont listen they just think its severe reflux causing the respiratory illnesses and the gut issues... i did see the phone number but havent actually called it... i will though... i guess i had better ask the pead about it today when i take him in... i am just so over all this medical hoo haa and want my little boy to be healthy. he is getting the nissen fundoplication done for his vomiting and apneas soon and also getting a gastrostomy tube put in... thank you and i will update after i see pead today.
 

bayleesmummy

New member
hi, thank you so much for your answer... i do realise he could still have cf but the drs wont listen they just think its severe reflux causing the respiratory illnesses and the gut issues... i did see the phone number but havent actually called it... i will though... i guess i had better ask the pead about it today when i take him in... i am just so over all this medical hoo haa and want my little boy to be healthy. he is getting the nissen fundoplication done for his vomiting and apneas soon and also getting a gastrostomy tube put in... thank you and i will update after i see pead today.
 

bayleesmummy

New member
hi, thank you so much for your answer... i do realise he could still have cf but the drs wont listen they just think its severe reflux causing the respiratory illnesses and the gut issues... i did see the phone number but havent actually called it... i will though... i guess i had better ask the pead about it today when i take him in... i am just so over all this medical hoo haa and want my little boy to be healthy. he is getting the nissen fundoplication done for his vomiting and apneas soon and also getting a gastrostomy tube put in... thank you and i will update after i see pead today.
 

bayleesmummy

New member
hi, thank you so much for your answer... i do realise he could still have cf but the drs wont listen they just think its severe reflux causing the respiratory illnesses and the gut issues... i did see the phone number but havent actually called it... i will though... i guess i had better ask the pead about it today when i take him in... i am just so over all this medical hoo haa and want my little boy to be healthy. he is getting the nissen fundoplication done for his vomiting and apneas soon and also getting a gastrostomy tube put in... thank you and i will update after i see pead today.
 

Skye

New member
Just FYI, children with CF tend to have salty skin. Something to do with the chloride exchange, I am not real sure. You had mentioned a salty smell though. Thought you should know that.
 

Skye

New member
Just FYI, children with CF tend to have salty skin. Something to do with the chloride exchange, I am not real sure. You had mentioned a salty smell though. Thought you should know that.
 

Skye

New member
Just FYI, children with CF tend to have salty skin. Something to do with the chloride exchange, I am not real sure. You had mentioned a salty smell though. Thought you should know that.
 

Skye

New member
Just FYI, children with CF tend to have salty skin. Something to do with the chloride exchange, I am not real sure. You had mentioned a salty smell though. Thought you should know that.
 

Skye

New member
Just FYI, children with CF tend to have salty skin. Something to do with the chloride exchange, I am not real sure. You had mentioned a salty smell though. Thought you should know that.
 
Top