I wanted to throw one more thing out there... I went and looked in the accredited CF centers and Dr. Peter Hiatt is one of them listed in Houston and he is at TX Childrens. He is so wonderful with the kids and new parents that are scared to death like my husband and I were. Just wanted to let you know. Hope all is well.
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Confused! Son newly diagnosed
- Thread starter mneds
- Start date
Lets deal with the Gene Sequencing. This should only be done thru a CF Center. There are almost 1900 mutations. Very likely yoyr Doctor screened for a small percentage of these. You need a FULL CF GENE SEQUENCING done.
It seems to me, that even if you need to check into a hotel near the Houston CF Center, it is something that you MUST DO.
Good luck
Bill
It seems to me, that even if you need to check into a hotel near the Houston CF Center, it is something that you MUST DO.
Good luck
Bill
Lets deal with the Gene Sequencing. This should only be done thru a CF Center. There are almost 1900 mutations. Very likely yoyr Doctor screened for a small percentage of these. You need a FULL CF GENE SEQUENCING done.
It seems to me, that even if you need to check into a hotel near the Houston CF Center, it is something that you MUST DO.
Good luck
Bill
It seems to me, that even if you need to check into a hotel near the Houston CF Center, it is something that you MUST DO.
Good luck
Bill
Lets deal with the Gene Sequencing. This should only be done thru a CF Center. There are almost 1900 mutations. Very likely yoyr Doctor screened for a small percentage of these. You need a FULL CF GENE SEQUENCING done.
<br />
<br />It seems to me, that even if you need to check into a hotel near the Houston CF Center, it is something that you MUST DO.
<br />
<br />Good luck
<br />Bill
<br />
<br />It seems to me, that even if you need to check into a hotel near the Houston CF Center, it is something that you MUST DO.
<br />
<br />Good luck
<br />Bill
<br>My son is being seen at the Temple Pediatric Clinic in Texas. I was under the impression that they are a recognized CF clinic. How do I find out? I am sure he has this disease as all the research I have done indicates he does even though I am still in denial. Denial or not we are still faithfully doing treatments ordered by his Dr. I was told that he had the full genetic work up thus the reason it took five weeks to get the results. I do not understand how they could not locate the gene. The dietician they have us seeing suggested possible schwachman diamond syndrome, but the only symptom of that he has is pancreatic enzyme dysfunction. He does not have any of the skeletal issues normally associated nor any of the cbc abnormalities. So far no luck on finding a place to do the NPD test. He just had more labs and all are normal. Including the sweat test. He was checked for celiac and chrons disease and these were normal as well. He has also been giving issues to using the neb with the hyper sal 7%. He says it burns bad. Is this normal? Or is he emoting because he does not want to do his treatments? And for those with experience, how often do I change the neb hose, and attachments? It seems like it is taking twice as long to complete the treatments, but the medicine still smokes so I know it is working. Is it something he is doing? Or time to change? The Dr. said if I was still getting smoke from meds it was fine. I have checked the filter and it is good on the neb machine. Any advice would be greatly appreciated.
<br>My son is being seen at the Temple Pediatric Clinic in Texas. I was under the impression that they are a recognized CF clinic. How do I find out? I am sure he has this disease as all the research I have doneindicates he does even though I am still in denial. Denial or not we are still faithfully doing treatments ordered by his Dr. I was told that he had the full genetic work up thus the reason it took five weeks to get the results. I do not understand how they could not locate the gene.The dietician they have us seeing suggested possible schwachman diamond syndrome, but the only symptom of that he has is pancreatic enzyme dysfunction. He does not have any of the skeletal issues normally associated nor any of the cbc abnormalities.So far no luck on finding a place to do the NPD test. He just had more labs and all are normal. Including the sweat test. He was checked for celiac and chrons disease and these were normal as well. He has also been giving issues to using the neb with the hyper sal 7%. He says it burns bad. Is this normal? Or is he emoting because he does not want to do his treatments? And for those with experience, how often do I change the neb hose, and attachments? It seems like it is taking twice as long to complete the treatments, but the medicine still smokes so I know it is working. Is it something he is doing? Or time to change? The Dr. said if I was still getting smoke from meds it was fine. I have checked the filter and it is good on the neb machine. Any advice would be greatly appreciated.
<p><br>My son is being seen at the Temple Pediatric Clinic in Texas. I was under the impression that they are a recognized CF clinic. How do I find out? I am sure he has this disease as all the research I have doneindicates he does even though I am still in denial. Denial or not we are still faithfully doing treatments ordered by his Dr. <p><p>I was told that he had the full genetic work up thus the reason it took five weeks to get the results. I do not understand how they could not locate the gene.<p><p>The dietician they have us seeing suggested possible schwachman diamond syndrome, but the only symptom of that he has is pancreatic enzyme dysfunction. He does not have any of the skeletal issues normally associated nor any of the cbc abnormalities.<p><p>So far no luck on finding a place to do the NPD test. He just had more labs and all are normal. Including the sweat test. He was checked for celiac and chrons disease and these were normal as well. <p><p>He has also been giving issues to using the neb with the hyper sal 7%. He says it burns bad. Is this normal? Or is he emoting because he does not want to do his treatments? And for those with experience, how often do I change the neb hose, and attachments? It seems like it is taking twice as long to complete the treatments, but the medicine still smokes so I know it is working. Is it something he is doing? Or time to change? The Dr. said if I was still getting smoke from meds it was fine. I have checked the filter and it is good on the neb machine. Any advice would be greatly appreciated.
<br>My son is being seen at the Temple Pediatric Clinic in Texas. I was under the impression that they are a recognized CF clinic. How do I find out? I am sure he has this disease as all the research I have done indicates he does even though I am still in denial. Denial or not we are still faithfully doing treatments ordered by his Dr. I was told that he had the full genetic work up thus the reason it took five weeks to get the results. I do not understand how they could not locate the gene. The dietician they have us seeing suggested possible schwachman diamond syndrome, but the only symptom of that he has is pancreatic enzyme dysfunction. He does not have any of the skeletal issues normally associated nor any of the cbc abnormalities. So far no luck on finding a place to do the NPD test. He just had more labs and all are normal. Including the sweat test. He was checked for celiac and chrons disease and these were normal as well. He has also been giving issues to using the neb with the hyper sal 7%. He says it burns bad. Is this normal? Or is he emoting because he does not want to do his treatments? And for those with experience, how often do I change the neb hose, and attachments? It seems like it is taking twice as long to complete the treatments, but the medicine still smokes so I know it is working. Is it something he is doing? Or time to change? The Dr. said if I was still getting smoke from meds it was fine. I have checked the filter and it is good on the neb machine. Any advice would be greatly appreciated.
<br>My son is being seen at the Temple Pediatric Clinic in Texas. I was under the impression that they are a recognized CF clinic. How do I find out? I am sure he has this disease as all the research I have doneindicates he does even though I am still in denial. Denial or not we are still faithfully doing treatments ordered by his Dr. I was told that he had the full genetic work up thus the reason it took five weeks to get the results. I do not understand how they could not locate the gene.The dietician they have us seeing suggested possible schwachman diamond syndrome, but the only symptom of that he has is pancreatic enzyme dysfunction. He does not have any of the skeletal issues normally associated nor any of the cbc abnormalities.So far no luck on finding a place to do the NPD test. He just had more labs and all are normal. Including the sweat test. He was checked for celiac and chrons disease and these were normal as well. He has also been giving issues to using the neb with the hyper sal 7%. He says it burns bad. Is this normal? Or is he emoting because he does not want to do his treatments? And for those with experience, how often do I change the neb hose, and attachments? It seems like it is taking twice as long to complete the treatments, but the medicine still smokes so I know it is working. Is it something he is doing? Or time to change? The Dr. said if I was still getting smoke from meds it was fine. I have checked the filter and it is good on the neb machine. Any advice would be greatly appreciated.
<p><br>My son is being seen at the Temple Pediatric Clinic in Texas. I was under the impression that they are a recognized CF clinic. How do I find out? I am sure he has this disease as all the research I have doneindicates he does even though I am still in denial. Denial or not we are still faithfully doing treatments ordered by his Dr. <p><p>I was told that he had the full genetic work up thus the reason it took five weeks to get the results. I do not understand how they could not locate the gene.<p><p>The dietician they have us seeing suggested possible schwachman diamond syndrome, but the only symptom of that he has is pancreatic enzyme dysfunction. He does not have any of the skeletal issues normally associated nor any of the cbc abnormalities.<p><p>So far no luck on finding a place to do the NPD test. He just had more labs and all are normal. Including the sweat test. He was checked for celiac and chrons disease and these were normal as well. <p><p>He has also been giving issues to using the neb with the hyper sal 7%. He says it burns bad. Is this normal? Or is he emoting because he does not want to do his treatments? And for those with experience, how often do I change the neb hose, and attachments? It seems like it is taking twice as long to complete the treatments, but the medicine still smokes so I know it is working. Is it something he is doing? Or time to change? The Dr. said if I was still getting smoke from meds it was fine. I have checked the filter and it is good on the neb machine. Any advice would be greatly appreciated.
<br>My son is being seen at the Temple Pediatric Clinic in Texas. I was under the impression that they are a recognized CF clinic. How do I find out? I am sure he has this disease as all the research I have done indicates he does even though I am still in denial. Denial or not we are still faithfully doing treatments ordered by his Dr. I was told that he had the full genetic work up thus the reason it took five weeks to get the results. I do not understand how they could not locate the gene. The dietician they have us seeing suggested possible schwachman diamond syndrome, but the only symptom of that he has is pancreatic enzyme dysfunction. He does not have any of the skeletal issues normally associated nor any of the cbc abnormalities. So far no luck on finding a place to do the NPD test. He just had more labs and all are normal. Including the sweat test. He was checked for celiac and chrons disease and these were normal as well. He has also been giving issues to using the neb with the hyper sal 7%. He says it burns bad. Is this normal? Or is he emoting because he does not want to do his treatments? And for those with experience, how often do I change the neb hose, and attachments? It seems like it is taking twice as long to complete the treatments, but the medicine still smokes so I know it is working. Is it something he is doing? Or time to change? The Dr. said if I was still getting smoke from meds it was fine. I have checked the filter and it is good on the neb machine. Any advice would be greatly appreciated.
<br>My son is being seen at the Temple Pediatric Clinic in Texas. I was under the impression that they are a recognized CF clinic. How do I find out? I am sure he has this disease as all the research I have doneindicates he does even though I am still in denial. Denial or not we are still faithfully doing treatments ordered by his Dr. I was told that he had the full genetic work up thus the reason it took five weeks to get the results. I do not understand how they could not locate the gene.The dietician they have us seeing suggested possible schwachman diamond syndrome, but the only symptom of that he has is pancreatic enzyme dysfunction. He does not have any of the skeletal issues normally associated nor any of the cbc abnormalities.So far no luck on finding a place to do the NPD test. He just had more labs and all are normal. Including the sweat test. He was checked for celiac and chrons disease and these were normal as well. He has also been giving issues to using the neb with the hyper sal 7%. He says it burns bad. Is this normal? Or is he emoting because he does not want to do his treatments? And for those with experience, how often do I change the neb hose, and attachments? It seems like it is taking twice as long to complete the treatments, but the medicine still smokes so I know it is working. Is it something he is doing? Or time to change? The Dr. said if I was still getting smoke from meds it was fine. I have checked the filter and it is good on the neb machine. Any advice would be greatly appreciated.
<p><br>My son is being seen at the Temple Pediatric Clinic in Texas. I was under the impression that they are a recognized CF clinic. How do I find out? I am sure he has this disease as all the research I have doneindicates he does even though I am still in denial. Denial or not we are still faithfully doing treatments ordered by his Dr. <p><p>I was told that he had the full genetic work up thus the reason it took five weeks to get the results. I do not understand how they could not locate the gene.<p><p>The dietician they have us seeing suggested possible schwachman diamond syndrome, but the only symptom of that he has is pancreatic enzyme dysfunction. He does not have any of the skeletal issues normally associated nor any of the cbc abnormalities.<p><p>So far no luck on finding a place to do the NPD test. He just had more labs and all are normal. Including the sweat test. He was checked for celiac and chrons disease and these were normal as well. <p><p>He has also been giving issues to using the neb with the hyper sal 7%. He says it burns bad. Is this normal? Or is he emoting because he does not want to do his treatments? And for those with experience, how often do I change the neb hose, and attachments? It seems like it is taking twice as long to complete the treatments, but the medicine still smokes so I know it is working. Is it something he is doing? Or time to change? The Dr. said if I was still getting smoke from meds it was fine. I have checked the filter and it is good on the neb machine. Any advice would be greatly appreciated.
<br>What is the difference between panel and seqencing test? I am so CONFUSED! Does it take both to locate the gene? Is one better than the other? I am emailing the CF clinic immediately to try and find out exactly, but wanted more info. prior. Thanks for everyone's help so far. I would be going crazy if I had not found this site!
<br>What is the difference between panel and seqencing test? I am so CONFUSED! Does it take both to locate the gene? Is one better than the other? I am emailing the CF clinic immediately to try and find out exactly, but wanted more info. prior. Thanks for everyone's help so far. I would be going crazy if I had not found this site!
<p><br>What is the difference between panel and seqencing test? I am so CONFUSED! Does it take both to locate the gene? Is one better than the other? I am emailing the CF clinic immediately to try and find out exactly, but wanted more info. prior. <p>Thanks for everyone's help so far. I would be going crazy if I had not found this site!