Update on my daughter's appt w/local MD....

[Guest guest]

Hi,

If it were me, I would find the most reputable pain mgt. doctor within network.

Try these two sites for searching for one that has either passed the FIPP

http://www.worldinstituteofpain.org/site/home.php or listed with:

http://www.aapainmanage.org/

You could send an email/letter outlining your daughter's pain areas, type, and

levels including what excerbates her pain. I would also include a synopsis of

her diagnosis and what the course of treatment is at this point. Include that

you are having difficulty finding a specialist that will refer a child to a pain

mgt. doctor and ask them for help.

Another good option is to search for medical advocates. They do not need to be

local, but you do want to make sure they have resources in your area. I just

read an article about this field and it's exploding - they charge a set fee per

hour or some other fee scale and then they do all the phone calls and setting up

appts/finding the practice that will help the person. Reputable advocates will

usually have resources and connections to find the best places and setting

everything up.

Where you need a pain doctor to help your child, it may be that just half hour

of calls/contacts will be all it takes. The article I read gave examples of

patients and families that have used these services. The advocates were able to

get patients approved by insurance to go to hospitals that they were told were

outside of insurance or that were full. They've also gotten approvals from

insurance companies to have procedures that have been denied, but necessary. If

you go this route, make sure you do your homework on the person - I have a funny

feeling this field is ripe with fools taking advantage of people in desperate

situations, but good advocates are out there.

I'm not certain about this next recommendation because I've never had to turn to

an insurance company for help in finding/assisting with getting a name of a

doctor, but if all else fails, you could see if the insurance company has a

patient advocate. Our insurance (supposedly) has this service.

Diplomacy with firmness will probably take you further than anger as I'm sure

you know. Hard to do in your situation but worth it if in the end she gets some

relief from her pain.

I hope these suggestions helps a little.

Kathy

Update on my daughter's appt w/local MD....

Well, it wasn't fantastic, by any means. He did agree to give her Topamax, and

ordered a lumbar MRI. That's about it. No pain management what so ever!!!!

So, what is she suppose to do for her pain?? I guess he thinks if it is bad

enough, she'll head to the ER!?!

I just don't understand why it is so hard to get pediatric patients pain

management. He wouldn't refer her to one. Grrrrrr.....

This is frustrating, and we are going to run out of the supply we have

leftover very soon. Then, I don't know what in the world we will do!

Sorry for the vent/rant. I guess we'll see what the lumbar MRI shows. If it

follows protocol, it will be normal. Her's always are.

Thanks for reading!