Symtoms of CF or something else???

[MommaKas]

Okay, so we are new to the whole CF thing. Although Kaitlyn has had symptoms all her life, she wasn't diagnosed until August 2010 just a few months before her 11th birthday. Her very first appt with the pulmonologist they hospitalized her on the spot due to her PFT's. To make a long story short, since September first and including her hospitialization, she has had 8 or 9 rounds of antibiotics for sinus, throat, chest infections etc. She is currently on tobi as her last culture was positive for pseudomonas. This is her first time on Tobi. She has been fighting the infection for over 2 months and she had 2 rounds of antibiotics before finding it was pseudomonas, and then they had her do another round plus the tobi. I know fatigue can be part of that, but she is having nausea, fatigue, excessive thirst, dizziness, her heart starts pounding for no reason. She had similar symptoms before the tobi, but they had gone away for over a month or two. Now they are back... She saw a cardiologist back around October, and they said her heart was fine, but now her primary says we have to go back to the cardiologist... Am I overworrying this, is it something anyone else has experienced with the CF meds??? We see her pulmonologist tomorrow, but I have a feeling he's going to tell me to talk to the cardiologist too... and what about all the other symptoms?

 

[MommaKas]

Okay, so we are new to the whole CF thing. Although Kaitlyn has had symptoms all her life, she wasn't diagnosed until August 2010 just a few months before her 11th birthday. Her very first appt with the pulmonologist they hospitalized her on the spot due to her PFT's. To make a long story short, since September first and including her hospitialization, she has had 8 or 9 rounds of antibiotics for sinus, throat, chest infections etc. She is currently on tobi as her last culture was positive for pseudomonas. This is her first time on Tobi. She has been fighting the infection for over 2 months and she had 2 rounds of antibiotics before finding it was pseudomonas, and then they had her do another round plus the tobi. I know fatigue can be part of that, but she is having nausea, fatigue, excessive thirst, dizziness, her heart starts pounding for no reason. She had similar symptoms before the tobi, but they had gone away for over a month or two. Now they are back... She saw a cardiologist back around October, and they said her heart was fine, but now her primary says we have to go back to the cardiologist... Am I overworrying this, is it something anyone else has experienced with the CF meds??? We see her pulmonologist tomorrow, but I have a feeling he's going to tell me to talk to the cardiologist too... and what about all the other symptoms?

 

[MommaKas]

Okay, so we are new to the whole CF thing. Although Kaitlyn has had symptoms all her life, she wasn't diagnosed until August 2010 just a few months before her 11th birthday. Her very first appt with the pulmonologist they hospitalized her on the spot due to her PFT's. To make a long story short, since September first and including her hospitialization, she has had 8 or 9 rounds of antibiotics for sinus, throat, chest infections etc. She is currently on tobi as her last culture was positive for pseudomonas. This is her first time on Tobi. She has been fighting the infection for over 2 months and she had 2 rounds of antibiotics before finding it was pseudomonas, and then they had her do another round plus the tobi. I know fatigue can be part of that, but she is having nausea, fatigue, excessive thirst, dizziness, her heart starts pounding for no reason. She had similar symptoms before the tobi, but they had gone away for over a month or two. Now they are back... She saw a cardiologist back around October, and they said her heart was fine, but now her primary says we have to go back to the cardiologist... Am I overworrying this, is it something anyone else has experienced with the CF meds??? We see her pulmonologist tomorrow, but I have a feeling he's going to tell me to talk to the cardiologist too... and what about all the other symptoms?

 

[edan]

Hi. Is she on albuterol or xopanex? My daughter starts having "heart beeping" problems (her words) if she is on more than 2+ doses of albuterol per day for an extended period of time and it continues for up to a week after we switch tO xopanex. Our cardiologist friend says the residual affect happens because the heart gets into a sort of habit from the albuterol. We found out about her cf last may and she is now four. If your daughter wasn't having the heart pounding pre- cf meds, then I would start investigating there (IMO).

 

[edan]

Hi. Is she on albuterol or xopanex? My daughter starts having "heart beeping" problems (her words) if she is on more than 2+ doses of albuterol per day for an extended period of time and it continues for up to a week after we switch tO xopanex. Our cardiologist friend says the residual affect happens because the heart gets into a sort of habit from the albuterol. We found out about her cf last may and she is now four. If your daughter wasn't having the heart pounding pre- cf meds, then I would start investigating there (IMO).

 

[edan]

Hi. Is she on albuterol or xopanex? My daughter starts having "heart beeping" problems (her words) if she is on more than 2+ doses of albuterol per day for an extended period of time and it continues for up to a week after we switch tO xopanex. Our cardiologist friend says the residual affect happens because the heart gets into a sort of habit from the albuterol. We found out about her cf last may and she is now four. If your daughter wasn't having the heart pounding pre- cf meds, then I would start investigating there (IMO).

 

[Crayonlove92]

When I had excessive thirst and dizziness it was because of CFRD or Cystic Fibrosis Related Diabetes and I was just getting sick all the time from unknowingly having it. Hopefully that isn't it though in her case. Best of luck to your daughter, I will pray for her <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Crayonlove92]

When I had excessive thirst and dizziness it was because of CFRD or Cystic Fibrosis Related Diabetes and I was just getting sick all the time from unknowingly having it. Hopefully that isn't it though in her case. Best of luck to your daughter, I will pray for her <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Crayonlove92]

When I had excessive thirst and dizziness it was because of CFRD or Cystic Fibrosis Related Diabetes and I was just getting sick all the time from unknowingly having it. Hopefully that isn't it though in her case. Best of luck to your daughter, I will pray for her <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Beccamom]

My daughter age 11 has many of those symptoms: thirst, stomach pain, fatigue, dizziness. She tested positive for low cortisol. Her pulmonologist feels that this could be because she has been on high dose inhaled steriods and periodic oral steroids. The endocrinologist tested her today for Addison's Disease which would be completely unrelated to CF.

 

[Beccamom]

My daughter age 11 has many of those symptoms: thirst, stomach pain, fatigue, dizziness. She tested positive for low cortisol. Her pulmonologist feels that this could be because she has been on high dose inhaled steriods and periodic oral steroids. The endocrinologist tested her today for Addison's Disease which would be completely unrelated to CF.

 

[Beccamom]

My daughter age 11 has many of those symptoms: thirst, stomach pain, fatigue, dizziness. She tested positive for low cortisol. Her pulmonologist feels that this could be because she has been on high dose inhaled steriods and periodic oral steroids. The endocrinologist tested her today for Addison's Disease which would be completely unrelated to CF.