Guest guest Posted November 11, 2002 Report Share Posted November 11, 2002 Well, I didn't mention the CF suspicion to the allergist. I just didn't fee like it. I already know the issue is being addressed by a very good dr in Cleveland. Did I mention that I am pregnant? 9 weeks. I have been so sick and barely able to even sit up. I just didn't have the strength to discuss much of anything. I just needed to alleviate Caden's symptoms. We go next month for proper testing. Heck, if this allergist don't suspect CF in Caden, my suggestions sure won't amount to much with him, hugh? I mean, he is sitting there looking at his CT telling me about his polyp and mucus in his sinus cavities. Telling me to do nasal washes and putting him back on steroids and possibly 6 weeks of antibiotics! ! I did ask him what could be causing this, since he does not have allergies. He said that was the million dollar question and it is called NON allergic Rhinitis. In other words,,, He don't know and no one does. We go back in 3 weeks to see if he is better and probably repeat the CT to see if things have been eradicated. He said that if he couldn't keep him controlled under steroids and antibiotics, that he would send him to an ENT to sinus surgery. I have been thinking about next years school term. He will have to start Kindergarten in August. What on Earth will I do with him? Do you guys send your kids to school on steroids? Caden is very hyper and eats like crazy on them. It would be nice to think that things will be normal by then, but I don't see it happening. I have told myself that year after. Now, we also have the new baby to worry about. We will be doing all kinds of new born screening with him/her. It includes CF to all metabolic disorders. Results in about 3 days. Well, just wanted to share, Krystena s Caden 4 yrs GAII/testing for CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2002 Report Share Posted November 11, 2002 Krystena, Your circumstances are very similar to what ours were when Josh was diagnosed. From the age 4 to 5 yrs he was hospitalized 3 times with pneumonia. At on point he was even in an oxygen tent. He was tested for allergies, they were negative. He was tested for CF. It was also negative. One more bout with pneumonia and I was a nervous wreck! I wondered how come I couldn't keep my child healthy. I began to think that I was an awful parent. Then they discovered the nasal polyp's and he underwent sinus surgery. When he came out the doctor said that this was the worst case he had seen in a very long time, what should of been a fairly simple surgery was really hard on him. The doctor said he had never removed so much " gunk " from anyones sinuses before. So then we were refered to an allergy specialist. Several thousand dollars later they decided to do another sweat test. The woman who did the test talked to us the whole time, asking about his symtoms, his history. The whole time she was nodding her head with this knowing look on her face. It scared me. We went to the IHOP to wait for the results (we were to call back in an hour). At that point I asked myself for the first time, what exactly is CF. Up until then it was always something that we were ruling out. Never had we considered that he might actually have it. We had no family history that we were aware of. When we called back, they asked us to come back to the hospital. I knew then it was bad. From that point until now I have educated myself about it in every way that I could. That's what puts me here, on this list. I wish you all much luck in finding your answers, dr visit Well, I didn't mention the CF suspicion to the allergist. I just didn't fee like it. I already know the issue is being addressed by a very good dr in Cleveland. Did I mention that I am pregnant? 9 weeks. I have been so sick and barely able to even sit up. I just didn't have the strength to discuss much of anything. I just needed to alleviate Caden's symptoms. We go next month for proper testing. Heck, if this allergist don't suspect CF in Caden, my suggestions sure won't amount to much with him, hugh? I mean, he is sitting there looking at his CT telling me about his polyp and mucus in his sinus cavities. Telling me to do nasal washes and putting him back on steroids and possibly 6 weeks of antibiotics! ! I did ask him what could be causing this, since he does not have allergies. He said that was the million dollar question and it is called NON allergic Rhinitis. In other words,,, He don't know and no one does. We go back in 3 weeks to see if he is better and probably repeat the CT to see if things have been eradicated. He said that if he couldn't keep him controlled under steroids and antibiotics, that he would send him to an ENT to sinus surgery. I have been thinking about next years school term. He will have to start Kindergarten in August. What on Earth will I do with him? Do you guys send your kids to school on steroids? Caden is very hyper and eats like crazy on them. It would be nice to think that things will be normal by then, but I don't see it happening. I have told myself that year after. Now, we also have the new baby to worry about. We will be doing all kinds of new born screening with him/her. It includes CF to all metabolic disorders. Results in about 3 days. Well, just wanted to share, Krystena s Caden 4 yrs GAII/testing for CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2002 Report Share Posted November 11, 2002 Krystena, Your circumstances are very similar to what ours were when Josh was diagnosed. From the age 4 to 5 yrs he was hospitalized 3 times with pneumonia. At on point he was even in an oxygen tent. He was tested for allergies, they were negative. He was tested for CF. It was also negative. One more bout with pneumonia and I was a nervous wreck! I wondered how come I couldn't keep my child healthy. I began to think that I was an awful parent. Then they discovered the nasal polyp's and he underwent sinus surgery. When he came out the doctor said that this was the worst case he had seen in a very long time, what should of been a fairly simple surgery was really hard on him. The doctor said he had never removed so much " gunk " from anyones sinuses before. So then we were refered to an allergy specialist. Several thousand dollars later they decided to do another sweat test. The woman who did the test talked to us the whole time, asking about his symtoms, his history. The whole time she was nodding her head with this knowing look on her face. It scared me. We went to the IHOP to wait for the results (we were to call back in an hour). At that point I asked myself for the first time, what exactly is CF. Up until then it was always something that we were ruling out. Never had we considered that he might actually have it. We had no family history that we were aware of. When we called back, they asked us to come back to the hospital. I knew then it was bad. From that point until now I have educated myself about it in every way that I could. That's what puts me here, on this list. I wish you all much luck in finding your answers, dr visit Well, I didn't mention the CF suspicion to the allergist. I just didn't fee like it. I already know the issue is being addressed by a very good dr in Cleveland. Did I mention that I am pregnant? 9 weeks. I have been so sick and barely able to even sit up. I just didn't have the strength to discuss much of anything. I just needed to alleviate Caden's symptoms. We go next month for proper testing. Heck, if this allergist don't suspect CF in Caden, my suggestions sure won't amount to much with him, hugh? I mean, he is sitting there looking at his CT telling me about his polyp and mucus in his sinus cavities. Telling me to do nasal washes and putting him back on steroids and possibly 6 weeks of antibiotics! ! I did ask him what could be causing this, since he does not have allergies. He said that was the million dollar question and it is called NON allergic Rhinitis. In other words,,, He don't know and no one does. We go back in 3 weeks to see if he is better and probably repeat the CT to see if things have been eradicated. He said that if he couldn't keep him controlled under steroids and antibiotics, that he would send him to an ENT to sinus surgery. I have been thinking about next years school term. He will have to start Kindergarten in August. What on Earth will I do with him? Do you guys send your kids to school on steroids? Caden is very hyper and eats like crazy on them. It would be nice to think that things will be normal by then, but I don't see it happening. I have told myself that year after. Now, we also have the new baby to worry about. We will be doing all kinds of new born screening with him/her. It includes CF to all metabolic disorders. Results in about 3 days. Well, just wanted to share, Krystena s Caden 4 yrs GAII/testing for CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2002 Report Share Posted November 11, 2002 Krystena, Your circumstances are very similar to what ours were when Josh was diagnosed. From the age 4 to 5 yrs he was hospitalized 3 times with pneumonia. At on point he was even in an oxygen tent. He was tested for allergies, they were negative. He was tested for CF. It was also negative. One more bout with pneumonia and I was a nervous wreck! I wondered how come I couldn't keep my child healthy. I began to think that I was an awful parent. Then they discovered the nasal polyp's and he underwent sinus surgery. When he came out the doctor said that this was the worst case he had seen in a very long time, what should of been a fairly simple surgery was really hard on him. The doctor said he had never removed so much " gunk " from anyones sinuses before. So then we were refered to an allergy specialist. Several thousand dollars later they decided to do another sweat test. The woman who did the test talked to us the whole time, asking about his symtoms, his history. The whole time she was nodding her head with this knowing look on her face. It scared me. We went to the IHOP to wait for the results (we were to call back in an hour). At that point I asked myself for the first time, what exactly is CF. Up until then it was always something that we were ruling out. Never had we considered that he might actually have it. We had no family history that we were aware of. When we called back, they asked us to come back to the hospital. I knew then it was bad. From that point until now I have educated myself about it in every way that I could. That's what puts me here, on this list. I wish you all much luck in finding your answers, dr visit Well, I didn't mention the CF suspicion to the allergist. I just didn't fee like it. I already know the issue is being addressed by a very good dr in Cleveland. Did I mention that I am pregnant? 9 weeks. I have been so sick and barely able to even sit up. I just didn't have the strength to discuss much of anything. I just needed to alleviate Caden's symptoms. We go next month for proper testing. Heck, if this allergist don't suspect CF in Caden, my suggestions sure won't amount to much with him, hugh? I mean, he is sitting there looking at his CT telling me about his polyp and mucus in his sinus cavities. Telling me to do nasal washes and putting him back on steroids and possibly 6 weeks of antibiotics! ! I did ask him what could be causing this, since he does not have allergies. He said that was the million dollar question and it is called NON allergic Rhinitis. In other words,,, He don't know and no one does. We go back in 3 weeks to see if he is better and probably repeat the CT to see if things have been eradicated. He said that if he couldn't keep him controlled under steroids and antibiotics, that he would send him to an ENT to sinus surgery. I have been thinking about next years school term. He will have to start Kindergarten in August. What on Earth will I do with him? Do you guys send your kids to school on steroids? Caden is very hyper and eats like crazy on them. It would be nice to think that things will be normal by then, but I don't see it happening. I have told myself that year after. Now, we also have the new baby to worry about. We will be doing all kinds of new born screening with him/her. It includes CF to all metabolic disorders. Results in about 3 days. Well, just wanted to share, Krystena s Caden 4 yrs GAII/testing for CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Krystena, Congratulations on your pregnancy. I hope it goes well and that the baby doesn't have Cf. Hope you feel better soon. (Australia) Re: dr visit Congratulations on your pregnancy! Gale > Well, > > I didn't mention the CF suspicion to the allergist. > > I just didn't fee like it. I already know the issue is being addressed by a very good dr in Cleveland. > Did I mention that I am pregnant? 9 weeks. I have been so sick and barely able to even sit up. I just didn't have the strength to discuss much of anything. I just needed to alleviate Caden's symptoms. We go next month for proper testing. Heck, if this allergist don't suspect CF in Caden, my suggestions sure won't amount to much with him, hugh? > I mean, he is sitting there looking at his CT telling me about his polyp and mucus in his sinus cavities. Telling me to do nasal washes and putting him back on steroids and possibly 6 weeks of antibiotics! ! > I did ask him what could be causing this, since he does not have allergies. He said that was the million dollar question and it is called NON allergic Rhinitis. In other words,,, He don't know and no one does. > We go back in 3 weeks to see if he is better and probably repeat the CT to see if things have been eradicated. He said that if he couldn't keep him controlled under steroids and antibiotics, that he would send him to an ENT to sinus surgery. > I have been thinking about next years school term. He will have to start Kindergarten in August. What on Earth will I do with him? Do you guys send your kids to school on steroids? Caden is very hyper and eats like crazy on them. > It would be nice to think that things will be normal by then, but I don't see it happening. I have told myself that year after. > Now, we also have the new baby to worry about. > We will be doing all kinds of new born screening with him/her. It includes CF to all metabolic disorders. Results in about 3 days. > > Well, just wanted to share, > Krystena s > Caden 4 yrs GAII/testing for CF > > > > Quote Link to comment Share on other sites More sharing options...
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