Confused

[tabacue]

I have been reading the posts here over the last couple weeks and I could really use some advice. I have three boys. My middle son is 4 and has had respiratory issues pretty much since birth. He was hospitalized when he was less than 1 year old with O2 in the 70's. He was hospitalized again in April '09 with respiratory issues. For the first couple years of his life he coughed non-stop until he spit up clear sticky "stuff". With an actual asthma diagnosis and regular breathing treatments, it has improved but not entirely. On top of his respiratory infections he gets every bug possible. In December, he had the flu one week and the next week had pneumonia. Just a few weeks ago, he was on antibiotics for an ear infection but spiked a fever of 102 and had to take Orapred and a Z-pack.

He was recently diagnosed with an Igg deficiency and we are doing allergy testing this week. I metioned to the immunologist that I felt like something was physically wrong with his lungs, but was told that he couldn't do any lung function testing until he was 5.

He is very tall, in the 90% for height. When height and weight are combined the percentage comes down drastically. From the time he was 3-4, he didn't gain any weight not even a pound. He has no greasy stools, but has been somewhat consitpated lately and has abdominal tenderness. Not sure if this is associated.

I really want to ask my doctor about the possibility of CF, but I don't want to look crazy. I am in there with him all the time because of infections or respiratory problems. Newborn screening for CF was not done when he was born.

I am so sorry for the long post and if anyone takes the time to read this I would really appreciate any input. I know that those of you with children have been in a similar place.

 

[tabacue]

I have been reading the posts here over the last couple weeks and I could really use some advice. I have three boys. My middle son is 4 and has had respiratory issues pretty much since birth. He was hospitalized when he was less than 1 year old with O2 in the 70's. He was hospitalized again in April '09 with respiratory issues. For the first couple years of his life he coughed non-stop until he spit up clear sticky "stuff". With an actual asthma diagnosis and regular breathing treatments, it has improved but not entirely. On top of his respiratory infections he gets every bug possible. In December, he had the flu one week and the next week had pneumonia. Just a few weeks ago, he was on antibiotics for an ear infection but spiked a fever of 102 and had to take Orapred and a Z-pack.

He was recently diagnosed with an Igg deficiency and we are doing allergy testing this week. I metioned to the immunologist that I felt like something was physically wrong with his lungs, but was told that he couldn't do any lung function testing until he was 5.

He is very tall, in the 90% for height. When height and weight are combined the percentage comes down drastically. From the time he was 3-4, he didn't gain any weight not even a pound. He has no greasy stools, but has been somewhat consitpated lately and has abdominal tenderness. Not sure if this is associated.

I really want to ask my doctor about the possibility of CF, but I don't want to look crazy. I am in there with him all the time because of infections or respiratory problems. Newborn screening for CF was not done when he was born.

I am so sorry for the long post and if anyone takes the time to read this I would really appreciate any input. I know that those of you with children have been in a similar place.

 

[tabacue]

I have been reading the posts here over the last couple weeks and I could really use some advice. I have three boys. My middle son is 4 and has had respiratory issues pretty much since birth. He was hospitalized when he was less than 1 year old with O2 in the 70's. He was hospitalized again in April '09 with respiratory issues. For the first couple years of his life he coughed non-stop until he spit up clear sticky "stuff". With an actual asthma diagnosis and regular breathing treatments, it has improved but not entirely. On top of his respiratory infections he gets every bug possible. In December, he had the flu one week and the next week had pneumonia. Just a few weeks ago, he was on antibiotics for an ear infection but spiked a fever of 102 and had to take Orapred and a Z-pack.

He was recently diagnosed with an Igg deficiency and we are doing allergy testing this week. I metioned to the immunologist that I felt like something was physically wrong with his lungs, but was told that he couldn't do any lung function testing until he was 5.

He is very tall, in the 90% for height. When height and weight are combined the percentage comes down drastically. From the time he was 3-4, he didn't gain any weight not even a pound. He has no greasy stools, but has been somewhat consitpated lately and has abdominal tenderness. Not sure if this is associated.

I really want to ask my doctor about the possibility of CF, but I don't want to look crazy. I am in there with him all the time because of infections or respiratory problems. Newborn screening for CF was not done when he was born.

I am so sorry for the long post and if anyone takes the time to read this I would really appreciate any input. I know that those of you with children have been in a similar place.

 

[tabacue]

I have been reading the posts here over the last couple weeks and I could really use some advice. I have three boys. My middle son is 4 and has had respiratory issues pretty much since birth. He was hospitalized when he was less than 1 year old with O2 in the 70's. He was hospitalized again in April '09 with respiratory issues. For the first couple years of his life he coughed non-stop until he spit up clear sticky "stuff". With an actual asthma diagnosis and regular breathing treatments, it has improved but not entirely. On top of his respiratory infections he gets every bug possible. In December, he had the flu one week and the next week had pneumonia. Just a few weeks ago, he was on antibiotics for an ear infection but spiked a fever of 102 and had to take Orapred and a Z-pack.

He was recently diagnosed with an Igg deficiency and we are doing allergy testing this week. I metioned to the immunologist that I felt like something was physically wrong with his lungs, but was told that he couldn't do any lung function testing until he was 5.

He is very tall, in the 90% for height. When height and weight are combined the percentage comes down drastically. From the time he was 3-4, he didn't gain any weight not even a pound. He has no greasy stools, but has been somewhat consitpated lately and has abdominal tenderness. Not sure if this is associated.

I really want to ask my doctor about the possibility of CF, but I don't want to look crazy. I am in there with him all the time because of infections or respiratory problems. Newborn screening for CF was not done when he was born.

I am so sorry for the long post and if anyone takes the time to read this I would really appreciate any input. I know that those of you with children have been in a similar place.

 

[tabacue]

I have been reading the posts here over the last couple weeks and I could really use some advice. I have three boys. My middle son is 4 and has had respiratory issues pretty much since birth. He was hospitalized when he was less than 1 year old with O2 in the 70's. He was hospitalized again in April '09 with respiratory issues. For the first couple years of his life he coughed non-stop until he spit up clear sticky "stuff". With an actual asthma diagnosis and regular breathing treatments, it has improved but not entirely. On top of his respiratory infections he gets every bug possible. In December, he had the flu one week and the next week had pneumonia. Just a few weeks ago, he was on antibiotics for an ear infection but spiked a fever of 102 and had to take Orapred and a Z-pack.
<br />
<br />He was recently diagnosed with an Igg deficiency and we are doing allergy testing this week. I metioned to the immunologist that I felt like something was physically wrong with his lungs, but was told that he couldn't do any lung function testing until he was 5.
<br />
<br />He is very tall, in the 90% for height. When height and weight are combined the percentage comes down drastically. From the time he was 3-4, he didn't gain any weight not even a pound. He has no greasy stools, but has been somewhat consitpated lately and has abdominal tenderness. Not sure if this is associated.
<br />
<br />I really want to ask my doctor about the possibility of CF, but I don't want to look crazy. I am in there with him all the time because of infections or respiratory problems. Newborn screening for CF was not done when he was born.
<br />
<br />I am so sorry for the long post and if anyone takes the time to read this I would really appreciate any input. I know that those of you with children have been in a similar place.

 

[cliffdye]

i wasnt diagnosed until i was 16 and i led a very active lifestyle. they will first take a sweat chloride test to see if the sodium in his sweat is high enough to dna test him for the cf genes but i lived in a small town and ran across the same things as him. some of the asthma meds are the same as the cf ones suach as the brochiadialotors... well let me know if you have any more questions i might be able to help with

 

[cliffdye]

i wasnt diagnosed until i was 16 and i led a very active lifestyle. they will first take a sweat chloride test to see if the sodium in his sweat is high enough to dna test him for the cf genes but i lived in a small town and ran across the same things as him. some of the asthma meds are the same as the cf ones suach as the brochiadialotors... well let me know if you have any more questions i might be able to help with

 

[cliffdye]

i wasnt diagnosed until i was 16 and i led a very active lifestyle. they will first take a sweat chloride test to see if the sodium in his sweat is high enough to dna test him for the cf genes but i lived in a small town and ran across the same things as him. some of the asthma meds are the same as the cf ones suach as the brochiadialotors... well let me know if you have any more questions i might be able to help with

 

[cliffdye]

i wasnt diagnosed until i was 16 and i led a very active lifestyle. they will first take a sweat chloride test to see if the sodium in his sweat is high enough to dna test him for the cf genes but i lived in a small town and ran across the same things as him. some of the asthma meds are the same as the cf ones suach as the brochiadialotors... well let me know if you have any more questions i might be able to help with

 

[cliffdye]

i wasnt diagnosed until i was 16 and i led a very active lifestyle. they will first take a sweat chloride test to see if the sodium in his sweat is high enough to dna test him for the cf genes but i lived in a small town and ran across the same things as him. some of the asthma meds are the same as the cf ones suach as the brochiadialotors... well let me know if you have any more questions i might be able to help with

 

[Ratatosk]

IMO, don't worry about looking crazy in terms of asking your doctor about CF. There's obviously something wrong with your child and you want to get to the bottom of it. You're paying $ for the doctor's appointment... You could phrase it in terms of "to rule out CF" if it makes you more comfortable.

 

[Ratatosk]

IMO, don't worry about looking crazy in terms of asking your doctor about CF. There's obviously something wrong with your child and you want to get to the bottom of it. You're paying $ for the doctor's appointment... You could phrase it in terms of "to rule out CF" if it makes you more comfortable.

 

[Ratatosk]

IMO, don't worry about looking crazy in terms of asking your doctor about CF. There's obviously something wrong with your child and you want to get to the bottom of it. You're paying $ for the doctor's appointment... You could phrase it in terms of "to rule out CF" if it makes you more comfortable.

 

[Ratatosk]

IMO, don't worry about looking crazy in terms of asking your doctor about CF. There's obviously something wrong with your child and you want to get to the bottom of it. You're paying $ for the doctor's appointment... You could phrase it in terms of "to rule out CF" if it makes you more comfortable.

 

[Ratatosk]

IMO, don't worry about looking crazy in terms of asking your doctor about CF. There's obviously something wrong with your child and you want to get to the bottom of it. You're paying $ for the doctor's appointment... You could phrase it in terms of "to rule out CF" if it makes you more comfortable.

 

[JORDYSMOM]

Hi & welcome. If you feel there is more to your son's issues than asthma & allergies, then get him tested. Usually that parental instinct isn't far off the track.

Who cares if the doc thinks you're crazy?! This is your child, and nobody else is going to advocate for him. If your insurance does not require a referral, just find a certified CF center in your area, and make an appt. If you need the referral, ask your doc. If the doc refuses, make sure that is noted in your child's chart, and find another doc to get the referral from.

My son wasn't dx until he was 15 yrs. old. He mainly had respiratory issues, and we were given the asthma & allergies routine as well. I'm not saying he doesn't have allergies & asthma, he does, but he also has CF, and it makes a huge difference to have a diagnosis.

If you have anymore questions, just post them. You can also send me a private message if you want. I'll be happy to try & answer any questions or concerns.

Keep us posted.

Stacey

 

[JORDYSMOM]

Hi & welcome. If you feel there is more to your son's issues than asthma & allergies, then get him tested. Usually that parental instinct isn't far off the track.

Who cares if the doc thinks you're crazy?! This is your child, and nobody else is going to advocate for him. If your insurance does not require a referral, just find a certified CF center in your area, and make an appt. If you need the referral, ask your doc. If the doc refuses, make sure that is noted in your child's chart, and find another doc to get the referral from.

My son wasn't dx until he was 15 yrs. old. He mainly had respiratory issues, and we were given the asthma & allergies routine as well. I'm not saying he doesn't have allergies & asthma, he does, but he also has CF, and it makes a huge difference to have a diagnosis.

If you have anymore questions, just post them. You can also send me a private message if you want. I'll be happy to try & answer any questions or concerns.

Keep us posted.

Stacey

 

[JORDYSMOM]

Hi & welcome. If you feel there is more to your son's issues than asthma & allergies, then get him tested. Usually that parental instinct isn't far off the track.

Who cares if the doc thinks you're crazy?! This is your child, and nobody else is going to advocate for him. If your insurance does not require a referral, just find a certified CF center in your area, and make an appt. If you need the referral, ask your doc. If the doc refuses, make sure that is noted in your child's chart, and find another doc to get the referral from.

My son wasn't dx until he was 15 yrs. old. He mainly had respiratory issues, and we were given the asthma & allergies routine as well. I'm not saying he doesn't have allergies & asthma, he does, but he also has CF, and it makes a huge difference to have a diagnosis.

If you have anymore questions, just post them. You can also send me a private message if you want. I'll be happy to try & answer any questions or concerns.

Keep us posted.

Stacey

 

[JORDYSMOM]

Hi & welcome. If you feel there is more to your son's issues than asthma & allergies, then get him tested. Usually that parental instinct isn't far off the track.

Who cares if the doc thinks you're crazy?! This is your child, and nobody else is going to advocate for him. If your insurance does not require a referral, just find a certified CF center in your area, and make an appt. If you need the referral, ask your doc. If the doc refuses, make sure that is noted in your child's chart, and find another doc to get the referral from.

My son wasn't dx until he was 15 yrs. old. He mainly had respiratory issues, and we were given the asthma & allergies routine as well. I'm not saying he doesn't have allergies & asthma, he does, but he also has CF, and it makes a huge difference to have a diagnosis.

If you have anymore questions, just post them. You can also send me a private message if you want. I'll be happy to try & answer any questions or concerns.

Keep us posted.

Stacey

 

[JORDYSMOM]

Hi & welcome. If you feel there is more to your son's issues than asthma & allergies, then get him tested. Usually that parental instinct isn't far off the track.
<br />
<br />Who cares if the doc thinks you're crazy?! This is your child, and nobody else is going to advocate for him. If your insurance does not require a referral, just find a certified CF center in your area, and make an appt. If you need the referral, ask your doc. If the doc refuses, make sure that is noted in your child's chart, and find another doc to get the referral from.
<br />
<br />My son wasn't dx until he was 15 yrs. old. He mainly had respiratory issues, and we were given the asthma & allergies routine as well. I'm not saying he doesn't have allergies & asthma, he does, but he also has CF, and it makes a huge difference to have a diagnosis.
<br />
<br />If you have anymore questions, just post them. You can also send me a private message if you want. I'll be happy to try & answer any questions or concerns.
<br />
<br />Keep us posted.
<br />
<br />Stacey