Fev1 30's

cbritton

New member
I just want to thank you all for taking the time to read and respond to my post. I'm full of emotion. I'm upset her CF doc feels he is hitting a "brick wall" and that is unacceptable to me. She does have mycrobacterium which culd be the huge culprit making her very sick now. I dont want to lose her and she has never been in counseling on an out patient basis, but it does makes sense that regular counseling may help her. (even though she feels she does not need it) I have a plan of care meeting with her CF team on Tuesday. My plan is have her live. It's very difficult working full time making sure she gets that afternoon treatment done. She is alone that part of the day and I put trust in her that she is doing that treatment and doing correctly. I miss having my daughter home.
 

cbritton

New member
I just want to thank you all for taking the time to read and respond to my post. I'm full of emotion. I'm upset her CF doc feels he is hitting a "brick wall" and that is unacceptable to me. She does have mycrobacterium which culd be the huge culprit making her very sick now. I dont want to lose her and she has never been in counseling on an out patient basis, but it does makes sense that regular counseling may help her. (even though she feels she does not need it) I have a plan of care meeting with her CF team on Tuesday. My plan is have her live. It's very difficult working full time making sure she gets that afternoon treatment done. She is alone that part of the day and I put trust in her that she is doing that treatment and doing correctly. I miss having my daughter home.
 

JustDucky

New member
I too would find it unacceptable for the CF doc to say that....to me that sounds like they have given up too or are just frustrated that things are going no where. I will say that teens are very cunning, if they don't want to do something, then they will find a way out of it somehow, especially if they aren't being watched. Is there any way you could have someone "check" up on her during the hours when her treatment is supposed to take place? A close neighbor or friend? A relative? Forgive me if you have answered this already, but is her father on board with all of this? Perhaps you could switch hours around so that either one is home all of the time to casually keep an eye on her to make sure she is doing her treatments.
Even though she says she doesn't need regular counseling, to me, she needs it....even if it is to help her cope with her CF. My kids have gone through counseling even though they protested initially, but I felt that they needed it because so much had happened to my family (my CF dx and being hospitalized so often, divorce, nearly losing me....all within a year's time) and they needed to have an objective person to unload on. Sometimes kids will do better expressing their emotions to a person who is not a relative or close friend even. Most importantly, the psychologist will be able to identify any issues like depression, personality disorders etc....A few visits here and there won't give an accurate picture of what is going on inside your daughter's head.

I hope you get somewhere with this upcoming meeting, please let us know how it turns out. I will keep all of you in my thoughts and prayers.
Jenn 40 w/CF
 

JustDucky

New member
I too would find it unacceptable for the CF doc to say that....to me that sounds like they have given up too or are just frustrated that things are going no where. I will say that teens are very cunning, if they don't want to do something, then they will find a way out of it somehow, especially if they aren't being watched. Is there any way you could have someone "check" up on her during the hours when her treatment is supposed to take place? A close neighbor or friend? A relative? Forgive me if you have answered this already, but is her father on board with all of this? Perhaps you could switch hours around so that either one is home all of the time to casually keep an eye on her to make sure she is doing her treatments.
Even though she says she doesn't need regular counseling, to me, she needs it....even if it is to help her cope with her CF. My kids have gone through counseling even though they protested initially, but I felt that they needed it because so much had happened to my family (my CF dx and being hospitalized so often, divorce, nearly losing me....all within a year's time) and they needed to have an objective person to unload on. Sometimes kids will do better expressing their emotions to a person who is not a relative or close friend even. Most importantly, the psychologist will be able to identify any issues like depression, personality disorders etc....A few visits here and there won't give an accurate picture of what is going on inside your daughter's head.

I hope you get somewhere with this upcoming meeting, please let us know how it turns out. I will keep all of you in my thoughts and prayers.
Jenn 40 w/CF
 

Incomudrox

New member
JustDucky, she didn't respond to my question but if it is CHOP in Philadelphia, the doctors there DO NOT give up easily. They are the most hard-ass doctors I know of. I feel like there is more that needs to come into the light here. Idk just me.
 

Incomudrox

New member
JustDucky, she didn't respond to my question but if it is CHOP in Philadelphia, the doctors there DO NOT give up easily. They are the most hard-ass doctors I know of. I feel like there is more that needs to come into the light here. Idk just me.
 
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