CJ and I talked it over and we decided to go to Albany's CF center to seek a 2nd opinion. Does anyone else go there? If so, can u PM me with your opinions about the doc there?
I actually left the decision up to him. He is 13 and old enough to choose. Its his body that will be tested, poked and prodded and I gave him the options. He knows the possibility is there that we might end up with another doc who doesn't 'believe in atypical CF' but he says he would rather take the chance and get a definate answer than not know what is going on with his body. I'm proud of him for the decions he made.
I'll be calling 2morrow to schedule the appointment. I already checked and insurance will cover a 2nd opinion without a referral as long as its an in-network doc.
If anyone has any other thoughts and ideas about him, I would love to get other opinions. Here is a list of all his issues...
*asthma (hospitalized 5 times for it since age 2)
*allergies (seasonal)
*acid reflux
*pneumonia 4 times (2x so bad he was hospitalized)
*frequent ear infections when he was small
*headaches
*extreme fatigue (he would sleep all day and night if I let him)
*easily tired by any activity
*VERY slow weight gain but he has a huge appetite. He is a good height (age 13 5'4" 96lbs)
*flat feet
*mild scoliosis (10 degree curvature)
*slight bruising on his lower back that never goes away
*he has an unusual bone structure in his chest. His midline is off center by about 2 1/2 inches and he has a large 'lump' of bone on his right side
*low/borderline sweat test for CF
*very limited motility in his large intestine (he had an ACE done)
*he often makes a 'gulping' sound in his throat, as if to clear it, but he is unaware he is doing it
*constant stuffy nose with post-nasal drip
*very pale skin, almost stark white
*tighness in his legs that make it unable for him to straighten his leg fully
*his CBC's always come back normal
*BMP's always show him to be slightly dehydrated despite his high fluid intake
*slow digestion (gastroparesis)
*family history of CF (paternal uncle)
*FEV's have always been between 69-88%
I actually left the decision up to him. He is 13 and old enough to choose. Its his body that will be tested, poked and prodded and I gave him the options. He knows the possibility is there that we might end up with another doc who doesn't 'believe in atypical CF' but he says he would rather take the chance and get a definate answer than not know what is going on with his body. I'm proud of him for the decions he made.
I'll be calling 2morrow to schedule the appointment. I already checked and insurance will cover a 2nd opinion without a referral as long as its an in-network doc.
If anyone has any other thoughts and ideas about him, I would love to get other opinions. Here is a list of all his issues...
*asthma (hospitalized 5 times for it since age 2)
*allergies (seasonal)
*acid reflux
*pneumonia 4 times (2x so bad he was hospitalized)
*frequent ear infections when he was small
*headaches
*extreme fatigue (he would sleep all day and night if I let him)
*easily tired by any activity
*VERY slow weight gain but he has a huge appetite. He is a good height (age 13 5'4" 96lbs)
*flat feet
*mild scoliosis (10 degree curvature)
*slight bruising on his lower back that never goes away
*he has an unusual bone structure in his chest. His midline is off center by about 2 1/2 inches and he has a large 'lump' of bone on his right side
*low/borderline sweat test for CF
*very limited motility in his large intestine (he had an ACE done)
*he often makes a 'gulping' sound in his throat, as if to clear it, but he is unaware he is doing it
*constant stuffy nose with post-nasal drip
*very pale skin, almost stark white
*tighness in his legs that make it unable for him to straighten his leg fully
*his CBC's always come back normal
*BMP's always show him to be slightly dehydrated despite his high fluid intake
*slow digestion (gastroparesis)
*family history of CF (paternal uncle)
*FEV's have always been between 69-88%