doctor appointments

[jamie]

how often?
who do you see?
do you ever go without the child in order to speak more frankly to the doctor?

[kadiera]

We see:
pulmonology ~ every 3 months
ENT ~ 3 months
Cardiology ~ 6 monts
Urology - it's complicated. We'll see them this month (1 month post surgery) and then not again for 5-6 months, then schedule surgery, do surgery, have a flurry of appointments, and then not see them for a while.
Endocrinology - once a year
Physical Medicine/Rehab ~ 4 months
pediatrician - as needed, or every 6 months (longest we've ever been without seeing them is about 3 months)


We *have* had meetings with doctors that weren't directly in the room with Alexander....but not since the NICU. We've had phone conferences with therapists without him. Alexander is little, but I really want him to feel like he's a part of the process, not just someone we're doing things to, because I want him to be able to advocate for himself, and I think that seeing us advocate on his behalf helps him learn that he doesn't have to be afraid to ask doctors questions.

That being said....I think you're in a very different spot than us. Does Evan know what you want to say to the doctor? Would he be willing to bring up his own issues with the docs?

[KJKK8437]

Originally Posted by jamie

do you ever go without the child in order to speak more frankly to the doctor?

We did this once. I mean, we specifically made an appointment and left Alex at home for this very reason. I had two conflicting opinions from two ENTs about Alex's prognosis, and I needed to resolve it because I had choices to make. So, I made an appointment with an ENT that has treated both me and Alex but is not generally willing to take on pediatric trach issues. (He used to do it, but he feels that it is a field that takes constant practice to be good, and he feels he doesn't see enough. He steps in only in very special circumstances.) I figured he knew us well enough to help me, but he had no ax to grind, KWIM?

Anyway, I needed a chance to talk, focused only on what I needed to ask, to help me resolve my concerns, with a doctor I really trusted. I think I may have made that decision regardless of how old Alex was (okay ... if he were 16 or 17 maybe not). The whole situation can be scary enough without hearing that your doctors are in violent disagreement about whether surgery is "an option in the future" or "absolutely necessary to resolve the problem, sooner rather than later."

I know I may be in the minority here, but I think there are times where parents need to filter the information the child hears until they are old enough to weigh the situation with maturity.

As another example, I would also not let my son hear the pre-op risk discussions of his surgeries until I am certain he is old enough to understand.
I had many surgeries as a child, and my parents let me in the "know" gradually, as I grew up. They felt it important to let me know some of the risks for my spinal surgery when I was 14, but that was the first time I ever really participated (with the understanding that I really had no choice but to do as my parents decided).

So ... I do think that talking alone with doctors has its time and its place, depending on what you are discussing, and how scary it is, and how much your child can handle.

[glowingpurpleaura]

ummm let me think
respitory - 6 months
ENT whenever we have surgery
general peads - 6 months
optom - 3 months
speech and physio - if we need it
have never gone alone purely because T is too young to understand and i don't have anyone to leave him with.

[bryantem]

Pulmonology- as needed
ENT- every 6 months
Peds- regular well child except she requested to see us in 6 months last visit.
I never go without Addy to speak with the Dr, however I am able to call/email the pulmonologist whenever I have a question or a concern.

[CJmom]

Pulmonology-every 3 mos. (used to be monthly for synagis)
Cardiology-every 12 mos.
ENT-every 2 mos. for now
Ped surgeon- every 2-3 mos. (waiting for a good time to repair omphalocele
Pediatrician-as needed

Nephrologist-disharged from care...yay!

[Billy'smom]

Primary doctor- every June (both)
GI- every June (both)
Ortho-haven't needed in a long time
ENT-when we need new trachs (Billy)
Pulmonologist- every June (Billy)
Pump doctor- every 2 1/2 months for a refill (Billy)
Dentist- every 6 months for cleaning (both)
Neuro-now every year in June. Might be looking for a new one as Billy's episodes are about 30 a day!

[jamie]

We see the pulmonologist about every 3 months
GI every six months
oncology and nuerology once a year

he is supposed to go to trach clinic, but it is more depressing than helpful.

he needs to see an opthomoligist for his strabismus which was caused from the surgery

he also needs to be checked by the spine doctor for his scoliosis.

but what has me concerned, is the protien in his urine. I tried calling to get the results and they said no they need to see him. if he has kidney problems, i would rather get a grip on it before telling him because he can only take so much bad news.

[glowingpurpleaura]

Originally Posted by jamie

We see the pulmonologist about every 3 months
GI every six months
oncology and nuerology once a year

he is supposed to go to trach clinic, but it is more depressing than helpful.

he needs to see an opthomoligist for his strabismus which was caused from the surgery

he also needs to be checked by the spine doctor for his scoliosis.

but what has me concerned, is the protien in his urine. I tried calling to get the results and they said no they need to see him. if he has kidney problems, i would rather get a grip on it before telling him because he can only take so much bad news.

in that case unless evan objects i would be going alone to get the results, i do hope all is ok

[Niff]

Some doctors may not see you without the child, the reason being a billing issue. You can't bill for a patient visit if the patient isn't there, typically. I would call and schedule the appointment. Once you arrive, be discreet and let the nurse know that you prefer to talk to the doctor without Evan in the room. You can send him off to the waiting room after the doctor does the physical exam, or you can ask to move into the hallway or a private room to talk. I think you'll find more docs willing to do this than to flat out schedule a visit without the patient present. On the other hand, you run the risk of scaring him by not including him. It's a really tough call because he's of the age where he understands what's going on, and you can't shield him as well as you can with kiddos who are slightly younger.

I've ran into some places that prefer to discuss results face-to-face than over the phone. Sometimes it depends if you have a release to discuss care over the phone. If you haven't signed a release, then technically they shouldn't. (And I think most releases now even go as specific as the phone number that they can discuss it on. Odd, I know.)