Help 9 yr old son very athletic can this be right?

[rbecerra]

I was sick to my stomach logging on to this website somehow if felt like conceding to something that I am not sure I want to accept. I mean that with the sincerest feelings, not to hurt anyone. Can anyone help me this has been such unfamiliar territory I'm not even sure we are on the right track.
Our son is 9 years old incredibly talented little athlete great student very rounded kid. Last winter he got very sick with what we thought was the flu going around...on the third or fourth day he broke out in a rash both my husband and I knew something odd was going on, we took him into the doctor and they admitted to the hospital. Long story short they transported him to Children's Hospital in Omaha NE and took them a couple of days many tests IV fluids and antibiotics to realise he had a staph infection that had gotten into the blood and turned toxic, they needed to find the source of the infection and by luck on the 4th or 5th day swabbed his nose and realised it was from his sinuses. We got this fantastic Infectious Dis doc and then a great ENT who ended up doing a sinus surgery to clear the sinuses. He got better we went home and did great this June i noticed he was getting stuffy nosed again, took him back to the ENT who did a head cat scan, and noticed that those sinus ducts comp blocked again. He treated that and then wanted us to go to a childrens allergist...the allergist found by tests that he is extremley allergic to mold. However he was concerned about a polyp in the nose and wanted to do a sweat test..(this is at Childrens Hosp) he also needed Joel to get Pneumonia shot as his antigens or bodies (excuse my inability to remember all the right terms) to pneumonia were not reacting correctly in the immune system. Anyway he re tested the blood this week to see if he has reacted to the pnuemonia shot (no result on this yet) and did the sweat test, it came back at 38, before he did the test he said he was 99.9% sure that Joel did not have CF but he needed to be thorough ...we left feeling good! Joel needed to be on Claritin, Nasacort and Singulair and was in a holding pattern..I barely got back to work about 5 or so hours later and the doc was on the phone saying his sweat test was abnormal that he had conferred with the CF doctors and he wants Joel back tomm morning to do the blood test for genetics and to help diagnose if he has CF.... I was completly caught off guard...Joel has struggled his entire life with sinus infections etc...but never really anything with the lungs...i know i'm jumping the gun but can this be??? can this relatively extremly active kid be a likely candidate for CF...denial over the weekend so far has seemed to keep me at bay from complete panic...is there anyone out there that has a child like Joel????? and can share with me Thanks Rachel

 

[rbecerra]

I was sick to my stomach logging on to this website somehow if felt like conceding to something that I am not sure I want to accept. I mean that with the sincerest feelings, not to hurt anyone. Can anyone help me this has been such unfamiliar territory I'm not even sure we are on the right track.
Our son is 9 years old incredibly talented little athlete great student very rounded kid. Last winter he got very sick with what we thought was the flu going around...on the third or fourth day he broke out in a rash both my husband and I knew something odd was going on, we took him into the doctor and they admitted to the hospital. Long story short they transported him to Children's Hospital in Omaha NE and took them a couple of days many tests IV fluids and antibiotics to realise he had a staph infection that had gotten into the blood and turned toxic, they needed to find the source of the infection and by luck on the 4th or 5th day swabbed his nose and realised it was from his sinuses. We got this fantastic Infectious Dis doc and then a great ENT who ended up doing a sinus surgery to clear the sinuses. He got better we went home and did great this June i noticed he was getting stuffy nosed again, took him back to the ENT who did a head cat scan, and noticed that those sinus ducts comp blocked again. He treated that and then wanted us to go to a childrens allergist...the allergist found by tests that he is extremley allergic to mold. However he was concerned about a polyp in the nose and wanted to do a sweat test..(this is at Childrens Hosp) he also needed Joel to get Pneumonia shot as his antigens or bodies (excuse my inability to remember all the right terms) to pneumonia were not reacting correctly in the immune system. Anyway he re tested the blood this week to see if he has reacted to the pnuemonia shot (no result on this yet) and did the sweat test, it came back at 38, before he did the test he said he was 99.9% sure that Joel did not have CF but he needed to be thorough ...we left feeling good! Joel needed to be on Claritin, Nasacort and Singulair and was in a holding pattern..I barely got back to work about 5 or so hours later and the doc was on the phone saying his sweat test was abnormal that he had conferred with the CF doctors and he wants Joel back tomm morning to do the blood test for genetics and to help diagnose if he has CF.... I was completly caught off guard...Joel has struggled his entire life with sinus infections etc...but never really anything with the lungs...i know i'm jumping the gun but can this be??? can this relatively extremly active kid be a likely candidate for CF...denial over the weekend so far has seemed to keep me at bay from complete panic...is there anyone out there that has a child like Joel????? and can share with me Thanks Rachel

 

[rbecerra]

I was sick to my stomach logging on to this website somehow if felt like conceding to something that I am not sure I want to accept. I mean that with the sincerest feelings, not to hurt anyone. Can anyone help me this has been such unfamiliar territory I'm not even sure we are on the right track.
Our son is 9 years old incredibly talented little athlete great student very rounded kid. Last winter he got very sick with what we thought was the flu going around...on the third or fourth day he broke out in a rash both my husband and I knew something odd was going on, we took him into the doctor and they admitted to the hospital. Long story short they transported him to Children's Hospital in Omaha NE and took them a couple of days many tests IV fluids and antibiotics to realise he had a staph infection that had gotten into the blood and turned toxic, they needed to find the source of the infection and by luck on the 4th or 5th day swabbed his nose and realised it was from his sinuses. We got this fantastic Infectious Dis doc and then a great ENT who ended up doing a sinus surgery to clear the sinuses. He got better we went home and did great this June i noticed he was getting stuffy nosed again, took him back to the ENT who did a head cat scan, and noticed that those sinus ducts comp blocked again. He treated that and then wanted us to go to a childrens allergist...the allergist found by tests that he is extremley allergic to mold. However he was concerned about a polyp in the nose and wanted to do a sweat test..(this is at Childrens Hosp) he also needed Joel to get Pneumonia shot as his antigens or bodies (excuse my inability to remember all the right terms) to pneumonia were not reacting correctly in the immune system. Anyway he re tested the blood this week to see if he has reacted to the pnuemonia shot (no result on this yet) and did the sweat test, it came back at 38, before he did the test he said he was 99.9% sure that Joel did not have CF but he needed to be thorough ...we left feeling good! Joel needed to be on Claritin, Nasacort and Singulair and was in a holding pattern..I barely got back to work about 5 or so hours later and the doc was on the phone saying his sweat test was abnormal that he had conferred with the CF doctors and he wants Joel back tomm morning to do the blood test for genetics and to help diagnose if he has CF.... I was completly caught off guard...Joel has struggled his entire life with sinus infections etc...but never really anything with the lungs...i know i'm jumping the gun but can this be??? can this relatively extremly active kid be a likely candidate for CF...denial over the weekend so far has seemed to keep me at bay from complete panic...is there anyone out there that has a child like Joel????? and can share with me Thanks Rachel

 

[rbecerra]

I was sick to my stomach logging on to this website somehow if felt like conceding to something that I am not sure I want to accept. I mean that with the sincerest feelings, not to hurt anyone. Can anyone help me this has been such unfamiliar territory I'm not even sure we are on the right track.
Our son is 9 years old incredibly talented little athlete great student very rounded kid. Last winter he got very sick with what we thought was the flu going around...on the third or fourth day he broke out in a rash both my husband and I knew something odd was going on, we took him into the doctor and they admitted to the hospital. Long story short they transported him to Children's Hospital in Omaha NE and took them a couple of days many tests IV fluids and antibiotics to realise he had a staph infection that had gotten into the blood and turned toxic, they needed to find the source of the infection and by luck on the 4th or 5th day swabbed his nose and realised it was from his sinuses. We got this fantastic Infectious Dis doc and then a great ENT who ended up doing a sinus surgery to clear the sinuses. He got better we went home and did great this June i noticed he was getting stuffy nosed again, took him back to the ENT who did a head cat scan, and noticed that those sinus ducts comp blocked again. He treated that and then wanted us to go to a childrens allergist...the allergist found by tests that he is extremley allergic to mold. However he was concerned about a polyp in the nose and wanted to do a sweat test..(this is at Childrens Hosp) he also needed Joel to get Pneumonia shot as his antigens or bodies (excuse my inability to remember all the right terms) to pneumonia were not reacting correctly in the immune system. Anyway he re tested the blood this week to see if he has reacted to the pnuemonia shot (no result on this yet) and did the sweat test, it came back at 38, before he did the test he said he was 99.9% sure that Joel did not have CF but he needed to be thorough ...we left feeling good! Joel needed to be on Claritin, Nasacort and Singulair and was in a holding pattern..I barely got back to work about 5 or so hours later and the doc was on the phone saying his sweat test was abnormal that he had conferred with the CF doctors and he wants Joel back tomm morning to do the blood test for genetics and to help diagnose if he has CF.... I was completly caught off guard...Joel has struggled his entire life with sinus infections etc...but never really anything with the lungs...i know i'm jumping the gun but can this be??? can this relatively extremly active kid be a likely candidate for CF...denial over the weekend so far has seemed to keep me at bay from complete panic...is there anyone out there that has a child like Joel????? and can share with me Thanks Rachel

 

[rbecerra]

I was sick to my stomach logging on to this website somehow if felt like conceding to something that I am not sure I want to accept. I mean that with the sincerest feelings, not to hurt anyone. Can anyone help me this has been such unfamiliar territory I'm not even sure we are on the right track.
<br />Our son is 9 years old incredibly talented little athlete great student very rounded kid. Last winter he got very sick with what we thought was the flu going around...on the third or fourth day he broke out in a rash both my husband and I knew something odd was going on, we took him into the doctor and they admitted to the hospital. Long story short they transported him to Children's Hospital in Omaha NE and took them a couple of days many tests IV fluids and antibiotics to realise he had a staph infection that had gotten into the blood and turned toxic, they needed to find the source of the infection and by luck on the 4th or 5th day swabbed his nose and realised it was from his sinuses. We got this fantastic Infectious Dis doc and then a great ENT who ended up doing a sinus surgery to clear the sinuses. He got better we went home and did great this June i noticed he was getting stuffy nosed again, took him back to the ENT who did a head cat scan, and noticed that those sinus ducts comp blocked again. He treated that and then wanted us to go to a childrens allergist...the allergist found by tests that he is extremley allergic to mold. However he was concerned about a polyp in the nose and wanted to do a sweat test..(this is at Childrens Hosp) he also needed Joel to get Pneumonia shot as his antigens or bodies (excuse my inability to remember all the right terms) to pneumonia were not reacting correctly in the immune system. Anyway he re tested the blood this week to see if he has reacted to the pnuemonia shot (no result on this yet) and did the sweat test, it came back at 38, before he did the test he said he was 99.9% sure that Joel did not have CF but he needed to be thorough ...we left feeling good! Joel needed to be on Claritin, Nasacort and Singulair and was in a holding pattern..I barely got back to work about 5 or so hours later and the doc was on the phone saying his sweat test was abnormal that he had conferred with the CF doctors and he wants Joel back tomm morning to do the blood test for genetics and to help diagnose if he has CF.... I was completly caught off guard...Joel has struggled his entire life with sinus infections etc...but never really anything with the lungs...i know i'm jumping the gun but can this be??? can this relatively extremly active kid be a likely candidate for CF...denial over the weekend so far has seemed to keep me at bay from complete panic...is there anyone out there that has a child like Joel????? and can share with me Thanks Rachel

 

[JazzysMom]

I am sorry to say that it could be CF just from the sinuses. He might not fall into the normal characteristics of CF in other aspects, but I know a few CFers that have mainly sinuse issues.

As to him being atheletic. I was athletic in school. I was on the Cross Country Team in school, as older I played softball & volleyball.

Having CF doesnt automatically take you out of atheletics unless you are very severe from the get go.....AND it most certainly wont if you have a natural gift for it.

You should be thankful that you have doctors that are persuing the genetic testing. IF nothing else to rule it out.


I am sorry that you had to find us, but if it turns out he does have CF then we are here to listen!

HUGS

 

[JazzysMom]

I am sorry to say that it could be CF just from the sinuses. He might not fall into the normal characteristics of CF in other aspects, but I know a few CFers that have mainly sinuse issues.

As to him being atheletic. I was athletic in school. I was on the Cross Country Team in school, as older I played softball & volleyball.

Having CF doesnt automatically take you out of atheletics unless you are very severe from the get go.....AND it most certainly wont if you have a natural gift for it.

You should be thankful that you have doctors that are persuing the genetic testing. IF nothing else to rule it out.


I am sorry that you had to find us, but if it turns out he does have CF then we are here to listen!

HUGS

 

[JazzysMom]

I am sorry to say that it could be CF just from the sinuses. He might not fall into the normal characteristics of CF in other aspects, but I know a few CFers that have mainly sinuse issues.

As to him being atheletic. I was athletic in school. I was on the Cross Country Team in school, as older I played softball & volleyball.

Having CF doesnt automatically take you out of atheletics unless you are very severe from the get go.....AND it most certainly wont if you have a natural gift for it.

You should be thankful that you have doctors that are persuing the genetic testing. IF nothing else to rule it out.


I am sorry that you had to find us, but if it turns out he does have CF then we are here to listen!

HUGS

 

[JazzysMom]

I am sorry to say that it could be CF just from the sinuses. He might not fall into the normal characteristics of CF in other aspects, but I know a few CFers that have mainly sinuse issues.

As to him being atheletic. I was athletic in school. I was on the Cross Country Team in school, as older I played softball & volleyball.

Having CF doesnt automatically take you out of atheletics unless you are very severe from the get go.....AND it most certainly wont if you have a natural gift for it.

You should be thankful that you have doctors that are persuing the genetic testing. IF nothing else to rule it out.


I am sorry that you had to find us, but if it turns out he does have CF then we are here to listen!

HUGS

 

[JazzysMom]

I am sorry to say that it could be CF just from the sinuses. He might not fall into the normal characteristics of CF in other aspects, but I know a few CFers that have mainly sinuse issues.
<br />
<br />As to him being atheletic. I was athletic in school. I was on the Cross Country Team in school, as older I played softball & volleyball.
<br />
<br />Having CF doesnt automatically take you out of atheletics unless you are very severe from the get go.....AND it most certainly wont if you have a natural gift for it.
<br />
<br />You should be thankful that you have doctors that are persuing the genetic testing. IF nothing else to rule it out.
<br />
<br />
<br />I am sorry that you had to find us, but if it turns out he does have CF then we are here to listen!
<br />
<br />HUGS

 

[rbecerra]

Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">Does the testing take a long time ??

 

[rbecerra]

Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">Does the testing take a long time ??

 

[rbecerra]

Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">Does the testing take a long time ??

 

[rbecerra]

Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">Does the testing take a long time ??

 

[rbecerra]

Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">Does the testing take a long time ??

 

[lwhermes]

Rachel - I know exactly how you feel. It was 46 days ago that my 9 year old daughter, Celeste, was diagnosed with CF. Celeste has been a very healthy little girl. Played pre-select soccer, plays golf, goes on 10 mile bike rides, swims, plays guitar, is an A student, who even got a Perfect Attendance award at school one year! My husband and I were numb with shock when we got the results. We couldn't believe it was possible and wondered if there was some kind of mistake! It makes my stomach hurt again, just hearing your story, because it sounds so similar to our own.

It took us two years to get to this diagnosis, but I won't bore you with all the details about how we got to this point. Two weeks after her diagnosis, we got all of the test results back. The ones that told us that she was a Double Delta F508, she had a pseudomonas infection in her lungs and that she was suffering from malabsorption. Celeste had to be hospitalized for two weeks to treat the pseudomonas. She also started the enzymes while in the hospital and started her inhaled meds and respiratory therapy treatments. She wound up missing the first three days of school, but she is back in school and hasn't missed a beat. She hasn't returned to soccer, though. She was already thinking about focusing on golf and now perhaps tennis, too!

We just went to our first CF clinic visit. Celeste's Pulmonary Function test wasn't as high as it was when we left the hospital, but she is doing very well. We did have a moment after the social worker spoke with us, where Celeste started shutting down and eventually started crying for the first time since all of the treatments and medications began. She was able to verbalize that she was angry and frustrated with it all. It broke our hearts and we were all crying together there for a while. Yes, it is all still very new to us, but we are managing and moving forward one day at a time.

 

[lwhermes]

Rachel - I know exactly how you feel. It was 46 days ago that my 9 year old daughter, Celeste, was diagnosed with CF. Celeste has been a very healthy little girl. Played pre-select soccer, plays golf, goes on 10 mile bike rides, swims, plays guitar, is an A student, who even got a Perfect Attendance award at school one year! My husband and I were numb with shock when we got the results. We couldn't believe it was possible and wondered if there was some kind of mistake! It makes my stomach hurt again, just hearing your story, because it sounds so similar to our own.

It took us two years to get to this diagnosis, but I won't bore you with all the details about how we got to this point. Two weeks after her diagnosis, we got all of the test results back. The ones that told us that she was a Double Delta F508, she had a pseudomonas infection in her lungs and that she was suffering from malabsorption. Celeste had to be hospitalized for two weeks to treat the pseudomonas. She also started the enzymes while in the hospital and started her inhaled meds and respiratory therapy treatments. She wound up missing the first three days of school, but she is back in school and hasn't missed a beat. She hasn't returned to soccer, though. She was already thinking about focusing on golf and now perhaps tennis, too!

We just went to our first CF clinic visit. Celeste's Pulmonary Function test wasn't as high as it was when we left the hospital, but she is doing very well. We did have a moment after the social worker spoke with us, where Celeste started shutting down and eventually started crying for the first time since all of the treatments and medications began. She was able to verbalize that she was angry and frustrated with it all. It broke our hearts and we were all crying together there for a while. Yes, it is all still very new to us, but we are managing and moving forward one day at a time.

 

[lwhermes]

Rachel - I know exactly how you feel. It was 46 days ago that my 9 year old daughter, Celeste, was diagnosed with CF. Celeste has been a very healthy little girl. Played pre-select soccer, plays golf, goes on 10 mile bike rides, swims, plays guitar, is an A student, who even got a Perfect Attendance award at school one year! My husband and I were numb with shock when we got the results. We couldn't believe it was possible and wondered if there was some kind of mistake! It makes my stomach hurt again, just hearing your story, because it sounds so similar to our own.

It took us two years to get to this diagnosis, but I won't bore you with all the details about how we got to this point. Two weeks after her diagnosis, we got all of the test results back. The ones that told us that she was a Double Delta F508, she had a pseudomonas infection in her lungs and that she was suffering from malabsorption. Celeste had to be hospitalized for two weeks to treat the pseudomonas. She also started the enzymes while in the hospital and started her inhaled meds and respiratory therapy treatments. She wound up missing the first three days of school, but she is back in school and hasn't missed a beat. She hasn't returned to soccer, though. She was already thinking about focusing on golf and now perhaps tennis, too!

We just went to our first CF clinic visit. Celeste's Pulmonary Function test wasn't as high as it was when we left the hospital, but she is doing very well. We did have a moment after the social worker spoke with us, where Celeste started shutting down and eventually started crying for the first time since all of the treatments and medications began. She was able to verbalize that she was angry and frustrated with it all. It broke our hearts and we were all crying together there for a while. Yes, it is all still very new to us, but we are managing and moving forward one day at a time.

 

[lwhermes]

Rachel - I know exactly how you feel. It was 46 days ago that my 9 year old daughter, Celeste, was diagnosed with CF. Celeste has been a very healthy little girl. Played pre-select soccer, plays golf, goes on 10 mile bike rides, swims, plays guitar, is an A student, who even got a Perfect Attendance award at school one year! My husband and I were numb with shock when we got the results. We couldn't believe it was possible and wondered if there was some kind of mistake! It makes my stomach hurt again, just hearing your story, because it sounds so similar to our own.

It took us two years to get to this diagnosis, but I won't bore you with all the details about how we got to this point. Two weeks after her diagnosis, we got all of the test results back. The ones that told us that she was a Double Delta F508, she had a pseudomonas infection in her lungs and that she was suffering from malabsorption. Celeste had to be hospitalized for two weeks to treat the pseudomonas. She also started the enzymes while in the hospital and started her inhaled meds and respiratory therapy treatments. She wound up missing the first three days of school, but she is back in school and hasn't missed a beat. She hasn't returned to soccer, though. She was already thinking about focusing on golf and now perhaps tennis, too!

We just went to our first CF clinic visit. Celeste's Pulmonary Function test wasn't as high as it was when we left the hospital, but she is doing very well. We did have a moment after the social worker spoke with us, where Celeste started shutting down and eventually started crying for the first time since all of the treatments and medications began. She was able to verbalize that she was angry and frustrated with it all. It broke our hearts and we were all crying together there for a while. Yes, it is all still very new to us, but we are managing and moving forward one day at a time.

 

[lwhermes]

Rachel - I know exactly how you feel. It was 46 days ago that my 9 year old daughter, Celeste, was diagnosed with CF. Celeste has been a very healthy little girl. Played pre-select soccer, plays golf, goes on 10 mile bike rides, swims, plays guitar, is an A student, who even got a Perfect Attendance award at school one year! My husband and I were numb with shock when we got the results. We couldn't believe it was possible and wondered if there was some kind of mistake! It makes my stomach hurt again, just hearing your story, because it sounds so similar to our own.
<br />
<br />It took us two years to get to this diagnosis, but I won't bore you with all the details about how we got to this point. Two weeks after her diagnosis, we got all of the test results back. The ones that told us that she was a Double Delta F508, she had a pseudomonas infection in her lungs and that she was suffering from malabsorption. Celeste had to be hospitalized for two weeks to treat the pseudomonas. She also started the enzymes while in the hospital and started her inhaled meds and respiratory therapy treatments. She wound up missing the first three days of school, but she is back in school and hasn't missed a beat. She hasn't returned to soccer, though. She was already thinking about focusing on golf and now perhaps tennis, too!
<br />
<br />We just went to our first CF clinic visit. Celeste's Pulmonary Function test wasn't as high as it was when we left the hospital, but she is doing very well. We did have a moment after the social worker spoke with us, where Celeste started shutting down and eventually started crying for the first time since all of the treatments and medications began. She was able to verbalize that she was angry and frustrated with it all. It broke our hearts and we were all crying together there for a while. Yes, it is all still very new to us, but we are managing and moving forward one day at a time.