heatherrose415
New member
wow that sounds so much better! I hope its closer to 1-2 wks. not 2 months.
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18 month old possible CF, question?
- Thread starter heatherrose415
- Start date
heatherrose415
New member
wow that sounds so much better! I hope its closer to 1-2 wks. not 2 months.
The length of time depends on what they find it the first stages of testing. If it is a more rare gene or they need to do a broader search it takes longer. Take a look at Ambry Genetics site to understand better:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygen.com/ts/ts_cf.htm">http://www.ambrygen.com/ts/ts_cf.htm</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygen.com/ts/ts_cf.htm">http://www.ambrygen.com/ts/ts_cf.htm</a>
The length of time depends on what they find it the first stages of testing. If it is a more rare gene or they need to do a broader search it takes longer. Take a look at Ambry Genetics site to understand better:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygen.com/ts/ts_cf.htm">http://www.ambrygen.com/ts/ts_cf.htm</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygen.com/ts/ts_cf.htm">http://www.ambrygen.com/ts/ts_cf.htm</a>
The length of time depends on what they find it the first stages of testing. If it is a more rare gene or they need to do a broader search it takes longer. Take a look at Ambry Genetics site to understand better:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygen.com/ts/ts_cf.htm">http://www.ambrygen.com/ts/ts_cf.htm</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygen.com/ts/ts_cf.htm">http://www.ambrygen.com/ts/ts_cf.htm</a>
I just love this forum!! I think I have gotten better information here than from most of my doctors!!
Thank you all for the concern for me and my daughter as she went through the EGD and Colonoscopy yesterday. She did fine. Colonoscopy looked good so now we are just waiting the 2 weeks for the pancreatic function tests. We did have one scary moment: when they injected the "propofol" anesthesia in her IV to put her to sleep she stopped breathing and they had to bag her for a few minutes. That was before I left the room and had me torn up a bit. But, she really did fine.
Heather, I'm not sure of the exact numbers of all my kids sweat tests, but they were very negative. Seems like 12-20 on either side. I think my daughter had a 30 on one side, but like 18 on the other.
They too have been tested for celiac disease, also Schwaccman Diamond Syndrome, and had complete allergy work-ups that came back negative.
One more question, have any of you noticed an increased sensitivity, allergy, or adverse reactions to antibiotics in your CFers??
I have read about a possible increase in adverse reaction to penicillin-type antibiotics in patients with CF.
My son has had mild allergic reactions to Rocephin, Zithromax, and Biaxin. He also had a strange Central Nervous System reaction to Augmentin. This is driving me crazy, because now the next time he has pneumonia, they will have to do IV antibiotics. And he's not even 2 yet. I know I should count my blessings that none of his pneumonias have put him in the hospital yet, but I still am frustrated that we are losing antibiotic options.
Edna
Thank you all for the concern for me and my daughter as she went through the EGD and Colonoscopy yesterday. She did fine. Colonoscopy looked good so now we are just waiting the 2 weeks for the pancreatic function tests. We did have one scary moment: when they injected the "propofol" anesthesia in her IV to put her to sleep she stopped breathing and they had to bag her for a few minutes. That was before I left the room and had me torn up a bit. But, she really did fine.
Heather, I'm not sure of the exact numbers of all my kids sweat tests, but they were very negative. Seems like 12-20 on either side. I think my daughter had a 30 on one side, but like 18 on the other.
They too have been tested for celiac disease, also Schwaccman Diamond Syndrome, and had complete allergy work-ups that came back negative.
One more question, have any of you noticed an increased sensitivity, allergy, or adverse reactions to antibiotics in your CFers??
I have read about a possible increase in adverse reaction to penicillin-type antibiotics in patients with CF.
My son has had mild allergic reactions to Rocephin, Zithromax, and Biaxin. He also had a strange Central Nervous System reaction to Augmentin. This is driving me crazy, because now the next time he has pneumonia, they will have to do IV antibiotics. And he's not even 2 yet. I know I should count my blessings that none of his pneumonias have put him in the hospital yet, but I still am frustrated that we are losing antibiotic options.
Edna
I just love this forum!! I think I have gotten better information here than from most of my doctors!!
Thank you all for the concern for me and my daughter as she went through the EGD and Colonoscopy yesterday. She did fine. Colonoscopy looked good so now we are just waiting the 2 weeks for the pancreatic function tests. We did have one scary moment: when they injected the "propofol" anesthesia in her IV to put her to sleep she stopped breathing and they had to bag her for a few minutes. That was before I left the room and had me torn up a bit. But, she really did fine.
Heather, I'm not sure of the exact numbers of all my kids sweat tests, but they were very negative. Seems like 12-20 on either side. I think my daughter had a 30 on one side, but like 18 on the other.
They too have been tested for celiac disease, also Schwaccman Diamond Syndrome, and had complete allergy work-ups that came back negative.
One more question, have any of you noticed an increased sensitivity, allergy, or adverse reactions to antibiotics in your CFers??
I have read about a possible increase in adverse reaction to penicillin-type antibiotics in patients with CF.
My son has had mild allergic reactions to Rocephin, Zithromax, and Biaxin. He also had a strange Central Nervous System reaction to Augmentin. This is driving me crazy, because now the next time he has pneumonia, they will have to do IV antibiotics. And he's not even 2 yet. I know I should count my blessings that none of his pneumonias have put him in the hospital yet, but I still am frustrated that we are losing antibiotic options.
Edna
Thank you all for the concern for me and my daughter as she went through the EGD and Colonoscopy yesterday. She did fine. Colonoscopy looked good so now we are just waiting the 2 weeks for the pancreatic function tests. We did have one scary moment: when they injected the "propofol" anesthesia in her IV to put her to sleep she stopped breathing and they had to bag her for a few minutes. That was before I left the room and had me torn up a bit. But, she really did fine.
Heather, I'm not sure of the exact numbers of all my kids sweat tests, but they were very negative. Seems like 12-20 on either side. I think my daughter had a 30 on one side, but like 18 on the other.
They too have been tested for celiac disease, also Schwaccman Diamond Syndrome, and had complete allergy work-ups that came back negative.
One more question, have any of you noticed an increased sensitivity, allergy, or adverse reactions to antibiotics in your CFers??
I have read about a possible increase in adverse reaction to penicillin-type antibiotics in patients with CF.
My son has had mild allergic reactions to Rocephin, Zithromax, and Biaxin. He also had a strange Central Nervous System reaction to Augmentin. This is driving me crazy, because now the next time he has pneumonia, they will have to do IV antibiotics. And he's not even 2 yet. I know I should count my blessings that none of his pneumonias have put him in the hospital yet, but I still am frustrated that we are losing antibiotic options.
Edna
I just love this forum!! I think I have gotten better information here than from most of my doctors!!
Thank you all for the concern for me and my daughter as she went through the EGD and Colonoscopy yesterday. She did fine. Colonoscopy looked good so now we are just waiting the 2 weeks for the pancreatic function tests. We did have one scary moment: when they injected the "propofol" anesthesia in her IV to put her to sleep she stopped breathing and they had to bag her for a few minutes. That was before I left the room and had me torn up a bit. But, she really did fine.
Heather, I'm not sure of the exact numbers of all my kids sweat tests, but they were very negative. Seems like 12-20 on either side. I think my daughter had a 30 on one side, but like 18 on the other.
They too have been tested for celiac disease, also Schwaccman Diamond Syndrome, and had complete allergy work-ups that came back negative.
One more question, have any of you noticed an increased sensitivity, allergy, or adverse reactions to antibiotics in your CFers??
I have read about a possible increase in adverse reaction to penicillin-type antibiotics in patients with CF.
My son has had mild allergic reactions to Rocephin, Zithromax, and Biaxin. He also had a strange Central Nervous System reaction to Augmentin. This is driving me crazy, because now the next time he has pneumonia, they will have to do IV antibiotics. And he's not even 2 yet. I know I should count my blessings that none of his pneumonias have put him in the hospital yet, but I still am frustrated that we are losing antibiotic options.
Edna
Thank you all for the concern for me and my daughter as she went through the EGD and Colonoscopy yesterday. She did fine. Colonoscopy looked good so now we are just waiting the 2 weeks for the pancreatic function tests. We did have one scary moment: when they injected the "propofol" anesthesia in her IV to put her to sleep she stopped breathing and they had to bag her for a few minutes. That was before I left the room and had me torn up a bit. But, she really did fine.
Heather, I'm not sure of the exact numbers of all my kids sweat tests, but they were very negative. Seems like 12-20 on either side. I think my daughter had a 30 on one side, but like 18 on the other.
They too have been tested for celiac disease, also Schwaccman Diamond Syndrome, and had complete allergy work-ups that came back negative.
One more question, have any of you noticed an increased sensitivity, allergy, or adverse reactions to antibiotics in your CFers??
I have read about a possible increase in adverse reaction to penicillin-type antibiotics in patients with CF.
My son has had mild allergic reactions to Rocephin, Zithromax, and Biaxin. He also had a strange Central Nervous System reaction to Augmentin. This is driving me crazy, because now the next time he has pneumonia, they will have to do IV antibiotics. And he's not even 2 yet. I know I should count my blessings that none of his pneumonias have put him in the hospital yet, but I still am frustrated that we are losing antibiotic options.
Edna
gilkstagirl
New member
hi my name is ashlee im 14 and i can answer some questions u have cause i have had it since i was born and after u get used to taking care of some one like me then its not all that bad ummmmm..... if ur child is loosing wait like non stop i would say that either the pancreas dont work or its a symtom of cf caus i have cf and my pancreas doesnt work also i take creon wich the doctor prescribes but any ways yea if u have any questions just email me cause i know more than most people think and i also have it so its easier for me to answer than for some one who doesnt have it and also my mom tells me alot and i read many many books!!! but u can contact me at lil_harleydavidsongilkey13@hotmail.com , but contact me soon i love to answer questions for any one
gilkstagirl
New member
hi my name is ashlee im 14 and i can answer some questions u have cause i have had it since i was born and after u get used to taking care of some one like me then its not all that bad ummmmm..... if ur child is loosing wait like non stop i would say that either the pancreas dont work or its a symtom of cf caus i have cf and my pancreas doesnt work also i take creon wich the doctor prescribes but any ways yea if u have any questions just email me cause i know more than most people think and i also have it so its easier for me to answer than for some one who doesnt have it and also my mom tells me alot and i read many many books!!! but u can contact me at lil_harleydavidsongilkey13@hotmail.com , but contact me soon i love to answer questions for any one
gilkstagirl
New member
hi my name is ashlee im 14 and i can answer some questions u have cause i have had it since i was born and after u get used to taking care of some one like me then its not all that bad ummmmm..... if ur child is loosing wait like non stop i would say that either the pancreas dont work or its a symtom of cf caus i have cf and my pancreas doesnt work also i take creon wich the doctor prescribes but any ways yea if u have any questions just email me cause i know more than most people think and i also have it so its easier for me to answer than for some one who doesnt have it and also my mom tells me alot and i read many many books!!! but u can contact me at lil_harleydavidsongilkey13@hotmail.com , but contact me soon i love to answer questions for any one
thefrogprincess
New member
Whatever happens make sure that the genetic testing gets done through Ambry Genetics, they will do a full panel screening of all known CF mutations, they are the only lab that will.
As far as having CF in your family, my brother and I were the first diagnosed in mine. Not having a history of it doesn't mean anything. I've practiaclly had to brow beat my husband to believe me on that one and get his carrier screening done so we can decide about kids.
As far as having CF in your family, my brother and I were the first diagnosed in mine. Not having a history of it doesn't mean anything. I've practiaclly had to brow beat my husband to believe me on that one and get his carrier screening done so we can decide about kids.
thefrogprincess
New member
Whatever happens make sure that the genetic testing gets done through Ambry Genetics, they will do a full panel screening of all known CF mutations, they are the only lab that will.
As far as having CF in your family, my brother and I were the first diagnosed in mine. Not having a history of it doesn't mean anything. I've practiaclly had to brow beat my husband to believe me on that one and get his carrier screening done so we can decide about kids.
As far as having CF in your family, my brother and I were the first diagnosed in mine. Not having a history of it doesn't mean anything. I've practiaclly had to brow beat my husband to believe me on that one and get his carrier screening done so we can decide about kids.
thefrogprincess
New member
Whatever happens make sure that the genetic testing gets done through Ambry Genetics, they will do a full panel screening of all known CF mutations, they are the only lab that will.
As far as having CF in your family, my brother and I were the first diagnosed in mine. Not having a history of it doesn't mean anything. I've practiaclly had to brow beat my husband to believe me on that one and get his carrier screening done so we can decide about kids.
As far as having CF in your family, my brother and I were the first diagnosed in mine. Not having a history of it doesn't mean anything. I've practiaclly had to brow beat my husband to believe me on that one and get his carrier screening done so we can decide about kids.