Anger/refusal to cooperate with doctors

M

mneville

Guest
Aidan is a smart, spirited, challenging 6 year old who does everything to stay healthy but has horrible CF sinuses and CANNOT stay well for more than 4 weeks after a surgery. So we are now on a schedule of PICC line and extensive sinus surgery every three months. He is PISSED! It gets so hard because he knows exactly what is coming and he hates to get in the car, refuses to cooperate at times and can be aggressive.

Aidan likes perfection and is so angry at CF and doctors and procedures. Does anyone else have kids that are just so resentful and angry with every procedure? He has emotional breakdowns more and more. He does see a psychologist and talks to her. What else can we do as his parents? I just want to tell him he'll get better but he gets sick so often I can't even tell him that anymore. Thanks

Megan
 
M

mneville

Guest
Aidan is a smart, spirited, challenging 6 year old who does everything to stay healthy but has horrible CF sinuses and CANNOT stay well for more than 4 weeks after a surgery. So we are now on a schedule of PICC line and extensive sinus surgery every three months. He is PISSED! It gets so hard because he knows exactly what is coming and he hates to get in the car, refuses to cooperate at times and can be aggressive.

Aidan likes perfection and is so angry at CF and doctors and procedures. Does anyone else have kids that are just so resentful and angry with every procedure? He has emotional breakdowns more and more. He does see a psychologist and talks to her. What else can we do as his parents? I just want to tell him he'll get better but he gets sick so often I can't even tell him that anymore. Thanks

Megan
 
M

mneville

Guest
Aidan is a smart, spirited, challenging 6 year old who does everything to stay healthy but has horrible CF sinuses and CANNOT stay well for more than 4 weeks after a surgery. So we are now on a schedule of PICC line and extensive sinus surgery every three months. He is PISSED! It gets so hard because he knows exactly what is coming and he hates to get in the car, refuses to cooperate at times and can be aggressive.
<br />
<br />Aidan likes perfection and is so angry at CF and doctors and procedures. Does anyone else have kids that are just so resentful and angry with every procedure? He has emotional breakdowns more and more. He does see a psychologist and talks to her. What else can we do as his parents? I just want to tell him he'll get better but he gets sick so often I can't even tell him that anymore. Thanks
<br />
<br />Megan
 
M

Mommafirst

Guest
I'm so sorry to hear Aidan is struggling so much with this. Alyssa is really obstinant with my husband and I when it comes to taking meds and treatments lately, but I haven't seen her get too difficult with the doctors yet. Its really hard -- this disease is completely unfair. I'm not sure what you can do to help him through this, I fear dealing with it myself.

(((HUGS)))
 
M

Mommafirst

Guest
I'm so sorry to hear Aidan is struggling so much with this. Alyssa is really obstinant with my husband and I when it comes to taking meds and treatments lately, but I haven't seen her get too difficult with the doctors yet. Its really hard -- this disease is completely unfair. I'm not sure what you can do to help him through this, I fear dealing with it myself.

(((HUGS)))
 
M

Mommafirst

Guest
I'm so sorry to hear Aidan is struggling so much with this. Alyssa is really obstinant with my husband and I when it comes to taking meds and treatments lately, but I haven't seen her get too difficult with the doctors yet. Its really hard -- this disease is completely unfair. I'm not sure what you can do to help him through this, I fear dealing with it myself.
<br />
<br />(((HUGS)))
 
K

Keepercjr

Guest
Please please consider a port for him. It doesn't matter that he isn't getting IVs for his lungs... he is getting IVs and that is all that matters. When my brother was around 11 or so my parents agonized about getting him a port. My mom did not want to put him through the surgery but eventually they decided to do it. It was THE BEST decision they could have made for him at the time. He had HORRIBLE anxiety and panic about going for CF clinic visits because he knew what was coming (a hospitalization with IV pokes, picc lines, etc). He was very sick. Once he got a port things got better. He was still a bit scared of getting the needle but we numbed it up with EMLA each time and he remained calm. When I was 20 I got a port. Not because I got IVs all that often (once or twice a year) but because I had bad veins so any IV access was a huge pain (literally and figuratively). My doctor was completely on board. I have not needed IVs for 6 years now but still am so happy I have my port. I have had a few medical procedures since then and always have ready IV access w/o any pain or need to retry because they failed the first time(s).

Another plus to the port is that he will have full use of his arms when he needs IV meds.

I'm so sorry you guys are dealing with this. I have one of those spirited intense children myself and don't even want to think what it would be like if he had CF too! Just day to day issues are enough to deal with (he is almost 6).
 
K

Keepercjr

Guest
Please please consider a port for him. It doesn't matter that he isn't getting IVs for his lungs... he is getting IVs and that is all that matters. When my brother was around 11 or so my parents agonized about getting him a port. My mom did not want to put him through the surgery but eventually they decided to do it. It was THE BEST decision they could have made for him at the time. He had HORRIBLE anxiety and panic about going for CF clinic visits because he knew what was coming (a hospitalization with IV pokes, picc lines, etc). He was very sick. Once he got a port things got better. He was still a bit scared of getting the needle but we numbed it up with EMLA each time and he remained calm. When I was 20 I got a port. Not because I got IVs all that often (once or twice a year) but because I had bad veins so any IV access was a huge pain (literally and figuratively). My doctor was completely on board. I have not needed IVs for 6 years now but still am so happy I have my port. I have had a few medical procedures since then and always have ready IV access w/o any pain or need to retry because they failed the first time(s).

Another plus to the port is that he will have full use of his arms when he needs IV meds.

I'm so sorry you guys are dealing with this. I have one of those spirited intense children myself and don't even want to think what it would be like if he had CF too! Just day to day issues are enough to deal with (he is almost 6).
 
K

Keepercjr

Guest
Please please consider a port for him. It doesn't matter that he isn't getting IVs for his lungs... he is getting IVs and that is all that matters. When my brother was around 11 or so my parents agonized about getting him a port. My mom did not want to put him through the surgery but eventually they decided to do it. It was THE BEST decision they could have made for him at the time. He had HORRIBLE anxiety and panic about going for CF clinic visits because he knew what was coming (a hospitalization with IV pokes, picc lines, etc). He was very sick. Once he got a port things got better. He was still a bit scared of getting the needle but we numbed it up with EMLA each time and he remained calm. When I was 20 I got a port. Not because I got IVs all that often (once or twice a year) but because I had bad veins so any IV access was a huge pain (literally and figuratively). My doctor was completely on board. I have not needed IVs for 6 years now but still am so happy I have my port. I have had a few medical procedures since then and always have ready IV access w/o any pain or need to retry because they failed the first time(s).
<br />
<br />Another plus to the port is that he will have full use of his arms when he needs IV meds.
<br />
<br />I'm so sorry you guys are dealing with this. I have one of those spirited intense children myself and don't even want to think what it would be like if he had CF too! Just day to day issues are enough to deal with (he is almost 6).
 
M

mneville

Guest
Thanks for the feedback. We are getting a port next time he needs IVs which will probably be in February. I know he will HATE it in the beginning but I am praying he'll adjust. Having a spirited kid like this is EXHAUSTING!!!
 
M

mneville

Guest
Thanks for the feedback. We are getting a port next time he needs IVs which will probably be in February. I know he will HATE it in the beginning but I am praying he'll adjust. Having a spirited kid like this is EXHAUSTING!!!
 
M

mneville

Guest
Thanks for the feedback. We are getting a port next time he needs IVs which will probably be in February. I know he will HATE it in the beginning but I am praying he'll adjust. Having a spirited kid like this is EXHAUSTING!!!
 
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