need answers and prayers

[cookihappy]

Hi my dgt was sitting on the couch a few wks ago then started to scream in pain we called 911 her lung had collapsed for no apparent reason (she is or was 6 she's 7 know) she was put into picu for 5 days then her lung finally started to reinflate they did not do a chest tube or broncoscopy they wanted to wait they did see something on all the cat scans but when her lung was finally inflated it disappeared she has been in and out of the hospital 3x since her sweat test the first was 30 the 2nd was 31 she is on all sorts of nebulizer treatments which gives her horrible headaches the next step is genetic testing what is the point of this can't they just start treatment and vitamins she suffers from severe stomach cramps this is all new to me she has always been very healthy except bad colds every other week she has very dark circles under her eyes and is very thin any advise or questions I should ask the dr tomorrow would be very very helpful

Cooki

 

[cookihappy]

Hi my dgt was sitting on the couch a few wks ago then started to scream in pain we called 911 her lung had collapsed for no apparent reason (she is or was 6 she's 7 know) she was put into picu for 5 days then her lung finally started to reinflate they did not do a chest tube or broncoscopy they wanted to wait they did see something on all the cat scans but when her lung was finally inflated it disappeared she has been in and out of the hospital 3x since her sweat test the first was 30 the 2nd was 31 she is on all sorts of nebulizer treatments which gives her horrible headaches the next step is genetic testing what is the point of this can't they just start treatment and vitamins she suffers from severe stomach cramps this is all new to me she has always been very healthy except bad colds every other week she has very dark circles under her eyes and is very thin any advise or questions I should ask the dr tomorrow would be very very helpful

Cooki

 

[cookihappy]

Hi my dgt was sitting on the couch a few wks ago then started to scream in pain we called 911 her lung had collapsed for no apparent reason (she is or was 6 she's 7 know) she was put into picu for 5 days then her lung finally started to reinflate they did not do a chest tube or broncoscopy they wanted to wait they did see something on all the cat scans but when her lung was finally inflated it disappeared she has been in and out of the hospital 3x since her sweat test the first was 30 the 2nd was 31 she is on all sorts of nebulizer treatments which gives her horrible headaches the next step is genetic testing what is the point of this can't they just start treatment and vitamins she suffers from severe stomach cramps this is all new to me she has always been very healthy except bad colds every other week she has very dark circles under her eyes and is very thin any advise or questions I should ask the dr tomorrow would be very very helpful

Cooki

 

[ktsmom]

Good grief Cooki you must be terrified. I am so sorry you are going through a possible CF diagnosis in this way.

The genetic testing definitely needs to be done. But - I see no reason why they can't start her right away on pancreatic enzymes at least, even if just for a trial period, to see if it helps her stomach cramps.

What medications is she nebulizing? What kind of doc are you going to see tomorrow? Be sure to tell him/her of the side effects you are describing.

The very good news here is that your daughter will feel and do SO MUCH BETTER once she is receiving the treatment she needs. I will pray for you and think of you tomorrow.

The answers will be thrown at you quickly but it will take some time for you to process it all. Focus for now on reading and understanding the treatments for the specific symptoms your daughter is showing. There is time later for all of the 'what ifs'.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Good grief Cooki you must be terrified. I am so sorry you are going through a possible CF diagnosis in this way.

The genetic testing definitely needs to be done. But - I see no reason why they can't start her right away on pancreatic enzymes at least, even if just for a trial period, to see if it helps her stomach cramps.

What medications is she nebulizing? What kind of doc are you going to see tomorrow? Be sure to tell him/her of the side effects you are describing.

The very good news here is that your daughter will feel and do SO MUCH BETTER once she is receiving the treatment she needs. I will pray for you and think of you tomorrow.

The answers will be thrown at you quickly but it will take some time for you to process it all. Focus for now on reading and understanding the treatments for the specific symptoms your daughter is showing. There is time later for all of the 'what ifs'.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Good grief Cooki you must be terrified. I am so sorry you are going through a possible CF diagnosis in this way.

The genetic testing definitely needs to be done. But - I see no reason why they can't start her right away on pancreatic enzymes at least, even if just for a trial period, to see if it helps her stomach cramps.

What medications is she nebulizing? What kind of doc are you going to see tomorrow? Be sure to tell him/her of the side effects you are describing.

The very good news here is that your daughter will feel and do SO MUCH BETTER once she is receiving the treatment she needs. I will pray for you and think of you tomorrow.

The answers will be thrown at you quickly but it will take some time for you to process it all. Focus for now on reading and understanding the treatments for the specific symptoms your daughter is showing. There is time later for all of the 'what ifs'.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[anonymous]

<img src="i/expressions/face-icon-small-confused.gif" border="0">Hello there my name is tammy. I am a single mother of two children who have cystic fibrosis and I would like to get in touch and find out a little more about your daughter. My email address is angellv79@hotmail.com

 

[anonymous]

<img src="i/expressions/face-icon-small-confused.gif" border="0">Hello there my name is tammy. I am a single mother of two children who have cystic fibrosis and I would like to get in touch and find out a little more about your daughter. My email address is angellv79@hotmail.com

 

[anonymous]

<img src="i/expressions/face-icon-small-confused.gif" border="0">Hello there my name is tammy. I am a single mother of two children who have cystic fibrosis and I would like to get in touch and find out a little more about your daughter. My email address is angellv79@hotmail.com

 

[anonymous]

I am still mad as hell and i'm stressed. I will never forget the day my kids were diagnosed with this devastating disease. This is to hard to handle. I need someone to talk to and i need a little prayer. angellv79@hotmail.com <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[anonymous]

I am still mad as hell and i'm stressed. I will never forget the day my kids were diagnosed with this devastating disease. This is to hard to handle. I need someone to talk to and i need a little prayer. angellv79@hotmail.com <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[anonymous]

I am still mad as hell and i'm stressed. I will never forget the day my kids were diagnosed with this devastating disease. This is to hard to handle. I need someone to talk to and i need a little prayer. angellv79@hotmail.com <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Alessia2dance]

Dear anonomous, I'm sorry to hear what ur going through. My husband and i are trying to have a baby, I have cf myself and still can't imagine what your going through so I'll try to give you the best advise I can. I know how hard it must to be to watch your children go through such an axperience as cf, keep in mind that even though sometimes they may seem week when they're sick just know that your kids are stronger than you know. Try not to have anger in your heart, it may help give your kids a happier outlook on things. I hope I wasn't too forward.

 

[Alessia2dance]

Dear anonomous, I'm sorry to hear what ur going through. My husband and i are trying to have a baby, I have cf myself and still can't imagine what your going through so I'll try to give you the best advise I can. I know how hard it must to be to watch your children go through such an axperience as cf, keep in mind that even though sometimes they may seem week when they're sick just know that your kids are stronger than you know. Try not to have anger in your heart, it may help give your kids a happier outlook on things. I hope I wasn't too forward.

 

[Alessia2dance]

Dear anonomous, I'm sorry to hear what ur going through. My husband and i are trying to have a baby, I have cf myself and still can't imagine what your going through so I'll try to give you the best advise I can. I know how hard it must to be to watch your children go through such an axperience as cf, keep in mind that even though sometimes they may seem week when they're sick just know that your kids are stronger than you know. Try not to have anger in your heart, it may help give your kids a happier outlook on things. I hope I wasn't too forward.

 

[jbrandonAW]

Honey I am so sorry!!! Go to the doc armed with a list of questions, syptoms, meds and concerns!!!!! I hope you find out really soon!!!

 

[jbrandonAW]

Honey I am so sorry!!! Go to the doc armed with a list of questions, syptoms, meds and concerns!!!!! I hope you find out really soon!!!

 

[jbrandonAW]

Honey I am so sorry!!! Go to the doc armed with a list of questions, syptoms, meds and concerns!!!!! I hope you find out really soon!!!