HI I AM NEW TO THE SITE. BOTH OF MY CHILDREN HAVE JUST BEEN DIAGNOSED IN THE LAST 2 MONTHS. THIS HAS BEEN DEVASTATING TO ALL OF US. MY SON IS 16 AND MY DAUGHTER IS 10. MY SON HAS BEEN HAVING STOMACHE PROBLEMS FOR ABOUT 3-4 YEARS NOW AND THEY DEVELOPED INTO PANCREATITIS LAST SUMMER. WE HAVE BEEN TO 5 DIFFERENT DOCTORS AND FINALLY THE LAST DR. FOUND IT WAS CF. SO THEN I HAD MY DAUGHTER TESTED AND SHE HAS IT TOO! LUCKILY MY SON HAS ONLY HAD PANCREAS PROBLEMS AND HAS ASTHMA BUT HIS LUNG EFFECIENCY IS 115. MY DAUGHTER'S LUNG # IS 74 AND SHE HAS TO GO IN THE HOSPITAL THE FIRST OF THE YEAR. MY SON ALSO HAS PSEUDAMONUS (NOT SURE IF SPELLED RIGHT) AND HE IS TAKING THE TOBI IN THE NEB. AND CIPRO AND ALBUTEROL INHALER AND ADVAIR. THEY ARE BOTH GETTING TIRED OF THE TREATMENTS ALLREADY. I JUST THANK GOD THAT THEY LASTED TILL NOW WITH THE DIAGNOSIS. ALSO I CAN'T BELIEVE HOW EXPENSIVE THE COPAYS ARE ON THE MEDICATION ESPECIALLY THE TOBI.!!!
Newly diagnosed
- Thread starter Rob9874
- Start date
HI I AM NEW TO THE SITE. BOTH OF MY CHILDREN HAVE JUST BEEN DIAGNOSED IN THE LAST 2 MONTHS. THIS HAS BEEN DEVASTATING TO ALL OF US. MY SON IS 16 AND MY DAUGHTER IS 10. MY SON HAS BEEN HAVING STOMACHE PROBLEMS FOR ABOUT 3-4 YEARS NOW AND THEY DEVELOPED INTO PANCREATITIS LAST SUMMER. WE HAVE BEEN TO 5 DIFFERENT DOCTORS AND FINALLY THE LAST DR. FOUND IT WAS CF. SO THEN I HAD MY DAUGHTER TESTED AND SHE HAS IT TOO! LUCKILY MY SON HAS ONLY HAD PANCREAS PROBLEMS AND HAS ASTHMA BUT HIS LUNG EFFECIENCY IS 115. MY DAUGHTER'S LUNG # IS 74 AND SHE HAS TO GO IN THE HOSPITAL THE FIRST OF THE YEAR. MY SON ALSO HAS PSEUDAMONUS (NOT SURE IF SPELLED RIGHT) AND HE IS TAKING THE TOBI IN THE NEB. AND CIPRO AND ALBUTEROL INHALER AND ADVAIR. THEY ARE BOTH GETTING TIRED OF THE TREATMENTS ALLREADY. I JUST THANK GOD THAT THEY LASTED TILL NOW WITH THE DIAGNOSIS. ALSO I CAN'T BELIEVE HOW EXPENSIVE THE COPAYS ARE ON THE MEDICATION ESPECIALLY THE TOBI.!!!
HI I AM NEW TO THE SITE. BOTH OF MY CHILDREN HAVE JUST BEEN DIAGNOSED IN THE LAST 2 MONTHS. THIS HAS BEEN DEVASTATING TO ALL OF US. MY SON IS 16 AND MY DAUGHTER IS 10. MY SON HAS BEEN HAVING STOMACHE PROBLEMS FOR ABOUT 3-4 YEARS NOW AND THEY DEVELOPED INTO PANCREATITIS LAST SUMMER. WE HAVE BEEN TO 5 DIFFERENT DOCTORS AND FINALLY THE LAST DR. FOUND IT WAS CF. SO THEN I HAD MY DAUGHTER TESTED AND SHE HAS IT TOO! LUCKILY MY SON HAS ONLY HAD PANCREAS PROBLEMS AND HAS ASTHMA BUT HIS LUNG EFFECIENCY IS 115. MY DAUGHTER'S LUNG # IS 74 AND SHE HAS TO GO IN THE HOSPITAL THE FIRST OF THE YEAR. MY SON ALSO HAS PSEUDAMONUS (NOT SURE IF SPELLED RIGHT) AND HE IS TAKING THE TOBI IN THE NEB. AND CIPRO AND ALBUTEROL INHALER AND ADVAIR. THEY ARE BOTH GETTING TIRED OF THE TREATMENTS ALLREADY. I JUST THANK GOD THAT THEY LASTED TILL NOW WITH THE DIAGNOSIS. ALSO I CAN'T BELIEVE HOW EXPENSIVE THE COPAYS ARE ON THE MEDICATION ESPECIALLY THE TOBI.!!!
Sweetness81
New member
Hi Rob,
I was diagnosed at 19 months old, so I have known nothing else but cf problems. If you are diagnosed don't worry too much. Yes this disease is fatal, but there are many programs and resources helping us live longer and at least a little more comfortable every year. You are never alone in this battle. We are all here for you and are here to do our best to answer any questions that you may have.
God bless,
Sweetness81, 25, mother of 5yr . daughter. cf, P.T.S.D, heart defect (ebsteins anomaly), IBS, migraines, Sciatica, chronic sinusitis.
I was diagnosed at 19 months old, so I have known nothing else but cf problems. If you are diagnosed don't worry too much. Yes this disease is fatal, but there are many programs and resources helping us live longer and at least a little more comfortable every year. You are never alone in this battle. We are all here for you and are here to do our best to answer any questions that you may have.
God bless,
Sweetness81, 25, mother of 5yr . daughter. cf, P.T.S.D, heart defect (ebsteins anomaly), IBS, migraines, Sciatica, chronic sinusitis.
Sweetness81
New member
Hi Rob,
I was diagnosed at 19 months old, so I have known nothing else but cf problems. If you are diagnosed don't worry too much. Yes this disease is fatal, but there are many programs and resources helping us live longer and at least a little more comfortable every year. You are never alone in this battle. We are all here for you and are here to do our best to answer any questions that you may have.
God bless,
Sweetness81, 25, mother of 5yr . daughter. cf, P.T.S.D, heart defect (ebsteins anomaly), IBS, migraines, Sciatica, chronic sinusitis.
I was diagnosed at 19 months old, so I have known nothing else but cf problems. If you are diagnosed don't worry too much. Yes this disease is fatal, but there are many programs and resources helping us live longer and at least a little more comfortable every year. You are never alone in this battle. We are all here for you and are here to do our best to answer any questions that you may have.
God bless,
Sweetness81, 25, mother of 5yr . daughter. cf, P.T.S.D, heart defect (ebsteins anomaly), IBS, migraines, Sciatica, chronic sinusitis.
Sweetness81
New member
Hi Rob,
I was diagnosed at 19 months old, so I have known nothing else but cf problems. If you are diagnosed don't worry too much. Yes this disease is fatal, but there are many programs and resources helping us live longer and at least a little more comfortable every year. You are never alone in this battle. We are all here for you and are here to do our best to answer any questions that you may have.
God bless,
Sweetness81, 25, mother of 5yr . daughter. cf, P.T.S.D, heart defect (ebsteins anomaly), IBS, migraines, Sciatica, chronic sinusitis.
I was diagnosed at 19 months old, so I have known nothing else but cf problems. If you are diagnosed don't worry too much. Yes this disease is fatal, but there are many programs and resources helping us live longer and at least a little more comfortable every year. You are never alone in this battle. We are all here for you and are here to do our best to answer any questions that you may have.
God bless,
Sweetness81, 25, mother of 5yr . daughter. cf, P.T.S.D, heart defect (ebsteins anomaly), IBS, migraines, Sciatica, chronic sinusitis.
Aug19dw,
Welcome to the site -- might I suggest you start your own new topic and introduce yourself again because this was a post from last April that Rob started -- you can start your own, since what you are posting about is your own story -- you deserve the spot light. And, (not that I mind, but) many people think that all capitals is like shouting.... so just regular type might also be a good idea
Sorry to hear about your kids diagnosis's and having to do all the treatments-- I do know what it is like to test one kid, then have the other one test positive too -- the same thing happened to us.
Some kids do have trouble adjusting to all the medications if they haven't had to do them their whole lives.
It sounds like your kids are getting the top notch treatments -- Tobi, Cipro, Advair & Albuteral.... all very normal stuff for everyone here!
Hope to see your post again.... more people will see it and reply to you. Also if you have more questions the family section seems to get looked at and responded to more often than the newly diagnosed (I don't know why, just is)
.
Welcome to the site -- might I suggest you start your own new topic and introduce yourself again because this was a post from last April that Rob started -- you can start your own, since what you are posting about is your own story -- you deserve the spot light. And, (not that I mind, but) many people think that all capitals is like shouting.... so just regular type might also be a good idea
Sorry to hear about your kids diagnosis's and having to do all the treatments-- I do know what it is like to test one kid, then have the other one test positive too -- the same thing happened to us.
Some kids do have trouble adjusting to all the medications if they haven't had to do them their whole lives.
It sounds like your kids are getting the top notch treatments -- Tobi, Cipro, Advair & Albuteral.... all very normal stuff for everyone here!
Hope to see your post again.... more people will see it and reply to you. Also if you have more questions the family section seems to get looked at and responded to more often than the newly diagnosed (I don't know why, just is)
.
Aug19dw,
Welcome to the site -- might I suggest you start your own new topic and introduce yourself again because this was a post from last April that Rob started -- you can start your own, since what you are posting about is your own story -- you deserve the spot light. And, (not that I mind, but) many people think that all capitals is like shouting.... so just regular type might also be a good idea
Sorry to hear about your kids diagnosis's and having to do all the treatments-- I do know what it is like to test one kid, then have the other one test positive too -- the same thing happened to us.
Some kids do have trouble adjusting to all the medications if they haven't had to do them their whole lives.
It sounds like your kids are getting the top notch treatments -- Tobi, Cipro, Advair & Albuteral.... all very normal stuff for everyone here!
Hope to see your post again.... more people will see it and reply to you. Also if you have more questions the family section seems to get looked at and responded to more often than the newly diagnosed (I don't know why, just is)
.
Welcome to the site -- might I suggest you start your own new topic and introduce yourself again because this was a post from last April that Rob started -- you can start your own, since what you are posting about is your own story -- you deserve the spot light. And, (not that I mind, but) many people think that all capitals is like shouting.... so just regular type might also be a good idea
Sorry to hear about your kids diagnosis's and having to do all the treatments-- I do know what it is like to test one kid, then have the other one test positive too -- the same thing happened to us.
Some kids do have trouble adjusting to all the medications if they haven't had to do them their whole lives.
It sounds like your kids are getting the top notch treatments -- Tobi, Cipro, Advair & Albuteral.... all very normal stuff for everyone here!
Hope to see your post again.... more people will see it and reply to you. Also if you have more questions the family section seems to get looked at and responded to more often than the newly diagnosed (I don't know why, just is)
.
Aug19dw,
Welcome to the site -- might I suggest you start your own new topic and introduce yourself again because this was a post from last April that Rob started -- you can start your own, since what you are posting about is your own story -- you deserve the spot light. And, (not that I mind, but) many people think that all capitals is like shouting.... so just regular type might also be a good idea
Sorry to hear about your kids diagnosis's and having to do all the treatments-- I do know what it is like to test one kid, then have the other one test positive too -- the same thing happened to us.
Some kids do have trouble adjusting to all the medications if they haven't had to do them their whole lives.
It sounds like your kids are getting the top notch treatments -- Tobi, Cipro, Advair & Albuteral.... all very normal stuff for everyone here!
Hope to see your post again.... more people will see it and reply to you. Also if you have more questions the family section seems to get looked at and responded to more often than the newly diagnosed (I don't know why, just is)
.
Welcome to the site -- might I suggest you start your own new topic and introduce yourself again because this was a post from last April that Rob started -- you can start your own, since what you are posting about is your own story -- you deserve the spot light. And, (not that I mind, but) many people think that all capitals is like shouting.... so just regular type might also be a good idea
Sorry to hear about your kids diagnosis's and having to do all the treatments-- I do know what it is like to test one kid, then have the other one test positive too -- the same thing happened to us.
Some kids do have trouble adjusting to all the medications if they haven't had to do them their whole lives.
It sounds like your kids are getting the top notch treatments -- Tobi, Cipro, Advair & Albuteral.... all very normal stuff for everyone here!
Hope to see your post again.... more people will see it and reply to you. Also if you have more questions the family section seems to get looked at and responded to more often than the newly diagnosed (I don't know why, just is)
.
mariebaguette
New member
I want to kill your doctor. What an ignorant moron! Of course you do have CF, you have 2 mutations! Of course both of your parents are carriers, and your family should be informed and hopefully tested for CF. See a CF specialist ASAP. Chances are you only have CBAVD without any other symptom, but you should get checked it out by someone who is a specialist. Most doctors don't know much about CF, it is a shame. To their defense, research has really exploded in the field in the last 15 years... If you have questions, do not hesitate to contact me directly at marie-baguette at hotmail dot com. You can also check my blog <a target=_blank class=ftalternatingbarlinklarge href="http://canwemake3.blogspot.com/,">http://canwemake3.blogspot.com/,</a> I have posted lots of info on atypical CF because my husband was diagnosed with it. I am not pregnant after 3 cycles of IVF. Good luck with everything.
mariebaguette
New member
I want to kill your doctor. What an ignorant moron! Of course you do have CF, you have 2 mutations! Of course both of your parents are carriers, and your family should be informed and hopefully tested for CF. See a CF specialist ASAP. Chances are you only have CBAVD without any other symptom, but you should get checked it out by someone who is a specialist. Most doctors don't know much about CF, it is a shame. To their defense, research has really exploded in the field in the last 15 years... If you have questions, do not hesitate to contact me directly at marie-baguette at hotmail dot com. You can also check my blog <a target=_blank class=ftalternatingbarlinklarge href="http://canwemake3.blogspot.com/,">http://canwemake3.blogspot.com/,</a> I have posted lots of info on atypical CF because my husband was diagnosed with it. I am not pregnant after 3 cycles of IVF. Good luck with everything.
mariebaguette
New member
I want to kill your doctor. What an ignorant moron! Of course you do have CF, you have 2 mutations! Of course both of your parents are carriers, and your family should be informed and hopefully tested for CF. See a CF specialist ASAP. Chances are you only have CBAVD without any other symptom, but you should get checked it out by someone who is a specialist. Most doctors don't know much about CF, it is a shame. To their defense, research has really exploded in the field in the last 15 years... If you have questions, do not hesitate to contact me directly at marie-baguette at hotmail dot com. You can also check my blog <a target=_blank class=ftalternatingbarlinklarge href="http://canwemake3.blogspot.com/,">http://canwemake3.blogspot.com/,</a> I have posted lots of info on atypical CF because my husband was diagnosed with it. I am not pregnant after 3 cycles of IVF. Good luck with everything.