<span class="postbody">Hi all my son was addmitted for 1st lot of 2wk iv's and a broncHe has boarderline sweat tests and 1gene found upto now if there is even another. hes been treated for asthma since a baby.The 2 weeks went well got a lot of stuff out started nebs and physio which is helping him loads all new to us as we have always just treated him for asthma!Anyway the bronc found that he had a lot of stuff stuck down there in his lungs and that his middle right lobe was narrow...Since the 2wks we have a much healthier happy 9yr old boy but my only problem is we have no offical diagnosis of anything yet they said his lungs are bad, he has the problem of the syptomatic carrier with the thick mucas and also asthma, then throw in the narrow lobe he struggles more he looks happy n normal on the outside but I worry about his lungs even more now, he is on antibotics 3 times a week, 2 inhalers, montelukast and nebs and physio twice a day he also has excema, rhinsitus and hayfever which affects his cough all summer! I would really like to know peoples thoughts on this and if there is anything i should be asking or doing?I have been told there is no name for my son's condition unless they find another gene or things change to get a CF diagnosis I should mention his is big in height and weight for his age!Thank you
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my son is just out of hospital
- Thread starter katie4byz
- Start date
<span class="postbody">Hi all my son was addmitted for 1st lot of 2wk iv's and a broncHe has boarderline sweat tests and 1gene found upto now if there is even another. hes been treated for asthma since a baby.The 2 weeks went well got a lot of stuff out started nebs and physio which is helping him loads all new to us as we have always just treated him for asthma!Anyway the bronc found that he had a lot of stuff stuck down there in his lungs and that his middle right lobe was narrow...Since the 2wks we have a much healthier happy 9yr old boy but my only problem is we have no offical diagnosis of anything yet they said his lungs are bad, he has the problem of the syptomatic carrier with the thick mucas and also asthma, then throw in the narrow lobe he struggles more he looks happy n normal on the outside but I worry about his lungs even more now, he is on antibotics 3 times a week, 2 inhalers, montelukast and nebs and physio twice a day he also has excema, rhinsitus and hayfever which affects his cough all summer! I would really like to know peoples thoughts on this and if there is anything i should be asking or doing?I have been told there is no name for my son's condition unless they find another gene or things change to get a CF diagnosis I should mention his is big in height and weight for his age!Thank you
I think you'll find that the physio will help tremendously, so keep doing that at LEAST twice a day to keep his lungs clear. We actually do it 3 times a day, more if DS is sick. DS was recently put on a steroid nasal spray as he had a lot of inflammation to the point he couldn't breath out of his left nostril. We also do sinus rinses to clear the stuff out of his nose -- saline kit with a bottle like neil med brand.
I think you'll find that the physio will help tremendously, so keep doing that at LEAST twice a day to keep his lungs clear. We actually do it 3 times a day, more if DS is sick. DS was recently put on a steroid nasal spray as he had a lot of inflammation to the point he couldn't breath out of his left nostril. We also do sinus rinses to clear the stuff out of his nose -- saline kit with a bottle like neil med brand.
Yh the physio is helping loads and with everything else hes doing a lot better <img src="i/expressions/face-icon-small-smile.gif" border="0">
I did ask how many but all they said was they did the most common first and now they are doing the extended version so I asked again how many as in a number and they said they don't know the exact number
I did ask how many but all they said was they did the most common first and now they are doing the extended version so I asked again how many as in a number and they said they don't know the exact number
Yh the physio is helping loads and with everything else hes doing a lot better <img src="i/expressions/face-icon-small-smile.gif" border="0">
I did ask how many but all they said was they did the most common first and now they are doing the extended version so I asked again how many as in a number and they said they don't know the exact number
I did ask how many but all they said was they did the most common first and now they are doing the extended version so I asked again how many as in a number and they said they don't know the exact number
When I was first tested in 1993 there were 250 KNOWN mutations. Today there are more than 1800 known mutations.
You need a FULL CF SEQUENCING. More important, you need to have son seen at a APPROVED CF CENTER by an CF SPECIALIST. You don't need to be seen by someone who does not know how many known mutations exist.
Bill
You need a FULL CF SEQUENCING. More important, you need to have son seen at a APPROVED CF CENTER by an CF SPECIALIST. You don't need to be seen by someone who does not know how many known mutations exist.
Bill
When I was first tested in 1993 there were 250 KNOWN mutations. Today there are more than 1800 known mutations.
You need a FULL CF SEQUENCING. More important, you need to have son seen at a APPROVED CF CENTER by an CF SPECIALIST. You don't need to be seen by someone who does not know how many known mutations exist.
Bill
You need a FULL CF SEQUENCING. More important, you need to have son seen at a APPROVED CF CENTER by an CF SPECIALIST. You don't need to be seen by someone who does not know how many known mutations exist.
Bill
At the top right hand side of this forum you will find, FIND A CF CENTER. At least call and get a second opinion.
We are not talking about a head cold here so I have no clue what you mean when you say "don't want it to affect him for the worse."
If he were my son he would already be in a CF CENTER and seeing a CF SPECIALIST.
Bill
We are not talking about a head cold here so I have no clue what you mean when you say "don't want it to affect him for the worse."
If he were my son he would already be in a CF CENTER and seeing a CF SPECIALIST.
Bill
At the top right hand side of this forum you will find, FIND A CF CENTER. At least call and get a second opinion.
We are not talking about a head cold here so I have no clue what you mean when you say "don't want it to affect him for the worse."
If he were my son he would already be in a CF CENTER and seeing a CF SPECIALIST.
Bill
We are not talking about a head cold here so I have no clue what you mean when you say "don't want it to affect him for the worse."
If he were my son he would already be in a CF CENTER and seeing a CF SPECIALIST.
Bill
We are in the same situation, so I just wanted to let you know that you are not alone. My daughter is 12 and was mis-diagnosed with asthma. She has 1 mutation. Her FEV1 increased from 55% to over 100% after IV antibiotics, vest, hypertonic saline and taking her slowly off her asthma meds. Has your son had a sinus CT. My daughter's sinuses were impacted and she had nasal polyps. She had sinus surger.
Keep advocating for your child.
Keep advocating for your child.
We are in the same situation, so I just wanted to let you know that you are not alone. My daughter is 12 and was mis-diagnosed with asthma. She has 1 mutation. Her FEV1 increased from 55% to over 100% after IV antibiotics, vest, hypertonic saline and taking her slowly off her asthma meds. Has your son had a sinus CT. My daughter's sinuses were impacted and she had nasal polyps. She had sinus surger.
Keep advocating for your child.
Keep advocating for your child.