You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Suspected CF-looking for information
- Thread starter fallenarches
- Start date
fallenarches
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i>
Not quite square one. You have eliminated one of the worst possible outcomes.
Good luck,
Bill</end quote></div>
<div><br></div><div>Very true...thanks!</div>
Not quite square one. You have eliminated one of the worst possible outcomes.
Good luck,
Bill</end quote></div>
<div><br></div><div>Very true...thanks!</div>
fallenarches
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i>
Not quite square one. You have eliminated one of the worst possible outcomes.
Good luck,
Bill</end quote>
<br>Very true...thanks!
Not quite square one. You have eliminated one of the worst possible outcomes.
Good luck,
Bill</end quote>
<br>Very true...thanks!
fallenarches
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i>
Not quite square one. You have eliminated one of the worst possible outcomes.
Good luck,
Bill</end quote>
<br>Very true...thanks!
Not quite square one. You have eliminated one of the worst possible outcomes.
Good luck,
Bill</end quote>
<br>Very true...thanks!
S
Swallowtail66
Guest
<P>Make sure you ask for a full map of the CFTR gene and not just a genetic screener. My kids and I have stuff that was never on the screener. That cost 6 years of treatment because when we did screening, I showed completely clean of any CF genetic issues. Ambry Genetics in California did our genetic work. </P>
<P> </P>
<P>From one mother to another...Knowing is better than not knowing. Not knowing does not change the reality and if she has CF issues, she needs better medical care than the regular care. Stay tough and fight for what she needs. </P>
<P> </P>
<P>From one mother to another...Knowing is better than not knowing. Not knowing does not change the reality and if she has CF issues, she needs better medical care than the regular care. Stay tough and fight for what she needs. </P>
S
Swallowtail66
Guest
<P>Make sure you ask for a full map of the CFTR gene and not just a genetic screener. My kids and I have stuff that was never on the screener. That cost 6 years of treatment because when we did screening, I showed completely clean of any CF genetic issues. Ambry Genetics in California did our genetic work. </P>
<P></P>
<P>From one mother to another...Knowing is better than not knowing. Not knowing does not change the reality and if she has CF issues, she needs better medical care than the regular care. Stay tough and fight for what she needs. </P>
<P></P>
<P>From one mother to another...Knowing is better than not knowing. Not knowing does not change the reality and if she has CF issues, she needs better medical care than the regular care. Stay tough and fight for what she needs. </P>
S
Swallowtail66
Guest
<P><BR>Make sure you ask for a full map of the CFTR gene and not just a genetic screener. My kids and I have stuff that was never on the screener. That cost 6 years of treatment because when we did screening, I showed completely clean of any CF genetic issues. Ambry Genetics in California did our genetic work. </P>
<P></P>
<P>From one mother to another...Knowing is better than not knowing. Not knowing does not change the reality and if she has CF issues, she needs better medical care than the regular care. Stay tough and fight for what she needs. </P>
<P></P>
<P>From one mother to another...Knowing is better than not knowing. Not knowing does not change the reality and if she has CF issues, she needs better medical care than the regular care. Stay tough and fight for what she needs. </P>
S
Swallowtail66
Guest
My oldest daughter was completely normal weight when she was diagnosed. My youngest was seriously underweight. We are all different and there are no hard and fast rules. Even a sweat test that is not positive can still belong to someone with CF.
S
Swallowtail66
Guest
My oldest daughter was completely normal weight when she was diagnosed. My youngest was seriously underweight. We are all different and there are no hard and fast rules. Even a sweat test that is not positive can still belong to someone with CF.
S
Swallowtail66
Guest
<BR>My oldest daughter was completely normal weight when she was diagnosed. My youngest was seriously underweight. We are all different and there are no hard and fast rules. Even a sweat test that is not positive can still belong to someone with CF.
fallenarches
New member
Just thought I would update...not much of an update, DD is having sinus surgery next week. They will culture the junk then as well. The ENT, for now, is calling it "CF like symptoms without having CF". At her pre-op appointment we are going to have blood taken for hypo gammaglobulinemia. Basically that is low immune system and happens in varying degrees--if people remember the movie "The Boy in the Plastic Bubble" his was a severe form of this but more mild cases just present with a lot of ear infections, strep throat, not responding well to antibiotics, etc. We are also going to check her for ciliary dysfunction syndrome, which has very similar symptoms as CF. She has a cousin that has ciliacs and I have unexplained hearing loss so maybe?? I still can't decide if we should push for the CF generic tests. Other then her polyps, everything else comes back normal.
fallenarches
New member
Just thought I would update...not much of an update, DD is having sinus surgery next week. They will culture the junk then as well. The ENT, for now, is calling it "CF like symptoms without having CF". At her pre-op appointment we are going to have blood taken for hypo gammaglobulinemia. Basically that is low immune system and happens in varying degrees--if people remember the movie "The Boy in the Plastic Bubble" his was a severe form of this but more mild cases just present with a lot of ear infections, strep throat, not responding well to antibiotics, etc. We are also going to check her for ciliary dysfunction syndrome, which has very similar symptoms as CF. She has a cousin that has ciliacs and I have unexplained hearing loss so maybe?? I still can't decide if we should push for the CF generic tests. Other then her polyps, everything else comes back normal.
fallenarches
New member
Just thought I would update...not much of an update, DD is having sinus surgery next week. They will culture the junk then as well. The ENT, for now, is calling it "CF like symptoms without having CF". At her pre-op appointment we are going to have blood taken for hypo gammaglobulinemia. Basically that is low immune system and happens in varying degrees--if people remember the movie "The Boy in the Plastic Bubble" his was a severe form of this but more mild cases just present with a lot of ear infections, strep throat, not responding well to antibiotics, etc. We are also going to check her for ciliary dysfunction syndrome, which has very similar symptoms as CF. She has a cousin that has ciliacs and I have unexplained hearing loss so maybe?? I still can't decide if we should push for the CF generic tests. Other then her polyps, everything else comes back normal.
I just wanted to let you know that you are not alone in the diagnostic limbo. Christmas Eve will be a full year since CF was suggested (for the 3rd time in her life) and we still have no definate diagnosis for my daughter. You are not alone. I would ask for the full genetic testing.
As for Primary Ciliary Dyskinesia it does have many similarities and www.pcdfoundation.org has great information. We also tested my daughter's immune system and it check out as they forward and backward. We tested for primary immune definciencies as well as did a titer test by giving her the Pneumovax vaccine for many pneumonia strains and then checking after a specific about of time the quantity of titers she had developed. We also checked allergies and my daughter has none.
She does have nasal polyps and chronic sinusitus for which she had surgery in October. She had scarring on chest CT and obstructive airway disease with PFTs. She does have 1 known Cf gene. She had 1 poistive nasal potential difference test and one negative for CF. She has a double ear infeciton now with a ruptured ear drum and is on her 3rd antibiotic.
Bottom line her lungs were spared from this current infection because she is using a mucus clearance vest and inhaling hypertonic saline. She is treated for CF and although not healthy is much healthier with the treatment then without.
I have learned a lot from the supportive people on this forum and credit to them, in addition to her CF doctors, with the current improvement in her health.
Best wishes, you are a great advocate for your daughter.
As for Primary Ciliary Dyskinesia it does have many similarities and www.pcdfoundation.org has great information. We also tested my daughter's immune system and it check out as they forward and backward. We tested for primary immune definciencies as well as did a titer test by giving her the Pneumovax vaccine for many pneumonia strains and then checking after a specific about of time the quantity of titers she had developed. We also checked allergies and my daughter has none.
She does have nasal polyps and chronic sinusitus for which she had surgery in October. She had scarring on chest CT and obstructive airway disease with PFTs. She does have 1 known Cf gene. She had 1 poistive nasal potential difference test and one negative for CF. She has a double ear infeciton now with a ruptured ear drum and is on her 3rd antibiotic.
Bottom line her lungs were spared from this current infection because she is using a mucus clearance vest and inhaling hypertonic saline. She is treated for CF and although not healthy is much healthier with the treatment then without.
I have learned a lot from the supportive people on this forum and credit to them, in addition to her CF doctors, with the current improvement in her health.
Best wishes, you are a great advocate for your daughter.
I just wanted to let you know that you are not alone in the diagnostic limbo. Christmas Eve will be a full year since CF was suggested (for the 3rd time in her life) and we still have no definate diagnosis for my daughter. You are not alone. I would ask for the full genetic testing.
As for Primary Ciliary Dyskinesia it does have many similarities and www.pcdfoundation.org has great information. We also tested my daughter's immune system and it check out as they forward and backward. We tested for primary immune definciencies as well as did a titer test by giving her the Pneumovax vaccine for many pneumonia strains and then checking after a specific about of time the quantity of titers she had developed. We also checked allergies and my daughter has none.
She does have nasal polyps and chronic sinusitus for which she had surgery in October. She had scarring on chest CT and obstructive airway disease with PFTs. She does have 1 known Cf gene. She had 1 poistive nasal potential difference test and one negative for CF. She has a double ear infeciton now with a ruptured ear drum and is on her 3rd antibiotic.
Bottom line her lungs were spared from this current infection because she is using a mucus clearance vest and inhaling hypertonic saline. She is treated for CF and although not healthy is much healthier with the treatment then without.
I have learned a lot from the supportive people on this forum and credit to them, in addition to her CF doctors, with the current improvement in her health.
Best wishes, you are a great advocate for your daughter.
As for Primary Ciliary Dyskinesia it does have many similarities and www.pcdfoundation.org has great information. We also tested my daughter's immune system and it check out as they forward and backward. We tested for primary immune definciencies as well as did a titer test by giving her the Pneumovax vaccine for many pneumonia strains and then checking after a specific about of time the quantity of titers she had developed. We also checked allergies and my daughter has none.
She does have nasal polyps and chronic sinusitus for which she had surgery in October. She had scarring on chest CT and obstructive airway disease with PFTs. She does have 1 known Cf gene. She had 1 poistive nasal potential difference test and one negative for CF. She has a double ear infeciton now with a ruptured ear drum and is on her 3rd antibiotic.
Bottom line her lungs were spared from this current infection because she is using a mucus clearance vest and inhaling hypertonic saline. She is treated for CF and although not healthy is much healthier with the treatment then without.
I have learned a lot from the supportive people on this forum and credit to them, in addition to her CF doctors, with the current improvement in her health.
Best wishes, you are a great advocate for your daughter.
I just wanted to let you know that you are not alone in the diagnostic limbo. Christmas Eve will be a full year since CF was suggested (for the 3rd time in her life) and we still have no definate diagnosis for my daughter. You are not alone. I would ask for the full genetic testing.
As for Primary Ciliary Dyskinesia it does have many similarities and www.pcdfoundation.org has great information. We also tested my daughter's immune system and it check out as they forward and backward. We tested for primary immune definciencies as well as did a titer test by giving her the Pneumovax vaccine for many pneumonia strains and then checking after a specific about of time the quantity of titers she had developed. We also checked allergies and my daughter has none.
She does have nasal polyps and chronic sinusitus for which she had surgery in October. She had scarring on chest CT and obstructive airway disease with PFTs. She does have 1 known Cf gene. She had 1 poistive nasal potential difference test and one negative for CF. She has a double ear infeciton now with a ruptured ear drum and is on her 3rd antibiotic.
Bottom line her lungs were spared from this current infection because she is using a mucus clearance vest and inhaling hypertonic saline. She is treated for CF and although not healthy is much healthier with the treatment then without.
I have learned a lot from the supportive people on this forum and credit to them, in addition to her CF doctors, with the current improvement in her health.
Best wishes, you are a great advocate for your daughter.
As for Primary Ciliary Dyskinesia it does have many similarities and www.pcdfoundation.org has great information. We also tested my daughter's immune system and it check out as they forward and backward. We tested for primary immune definciencies as well as did a titer test by giving her the Pneumovax vaccine for many pneumonia strains and then checking after a specific about of time the quantity of titers she had developed. We also checked allergies and my daughter has none.
She does have nasal polyps and chronic sinusitus for which she had surgery in October. She had scarring on chest CT and obstructive airway disease with PFTs. She does have 1 known Cf gene. She had 1 poistive nasal potential difference test and one negative for CF. She has a double ear infeciton now with a ruptured ear drum and is on her 3rd antibiotic.
Bottom line her lungs were spared from this current infection because she is using a mucus clearance vest and inhaling hypertonic saline. She is treated for CF and although not healthy is much healthier with the treatment then without.
I have learned a lot from the supportive people on this forum and credit to them, in addition to her CF doctors, with the current improvement in her health.
Best wishes, you are a great advocate for your daughter.
fallenarches
New member
DD had her sinus surgery yesterday. The ENT said there was a lot more gunk up there then he anticipated and the surgery was a lot harder then he thought it was going to be. The surgery took 2 1/2 hours. He said there were a lot of polyps, more then they saw on the CT scan too. She is resting comfortably. They took cultures and were doing a biopsy to check for cilliary dysfunction, see what was growing up there and took blood to check for the immune deficiency. The ENT said that it "looked" like major allergy issues, but her allergy tests were all negative, the blood tests, scratch tests and injection tests so if it is an allergy it's to something not very common.
fallenarches
New member
DD had her sinus surgery yesterday. The ENT said there was a lot more gunk up there then he anticipated and the surgery was a lot harder then he thought it was going to be. The surgery took 2 1/2 hours. He said there were a lot of polyps, more then they saw on the CT scan too. She is resting comfortably. They took cultures and were doing a biopsy to check for cilliary dysfunction, see what was growing up there and took blood to check for the immune deficiency. The ENT said that it "looked" like major allergy issues, but her allergy tests were all negative, the blood tests, scratch tests and injection tests so if it is an allergy it's to something not very common.
fallenarches
New member
I just heard from her primary dr. She has a low subclass Ig_ . Not sure which subclass it is yet--forgot to ask. They are going to refer her to an infectious disease specialist for follow-up. At least we have some reason for all of this now. Thanks to everyone for their support!
fallenarches
New member
I just heard from her primary dr. She has a low subclass Ig_ . Not sure which subclass it is yet--forgot to ask. They are going to refer her to an infectious disease specialist for follow-up. At least we have some reason for all of this now. Thanks to everyone for their support!