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Old 09-18-2007, 09:07 PM   #1
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Join Date: Sep 2007
Location: Simi Valley, CA
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PamalaLauren HB User
So Fustrated I don't know what to do...

My daughter is 15 months old and has a disorder that causes her body to produce too much insulin. In addition to that she has a tumor which has to be removed. It's not cancerous or anything so that's good but it's been such a hassle just getting this surgery set up.

I've not heard from her Endo about questions I've called in and emailed in but all of a sudden she's dictating where this surgery will happen. And I'm not happy about it.

Then the referral isn't clear. Usually it says what doctor to call and gives a number, this one doesn't. Just says the Hospital's name. I assume that's because they don't know a doctor's name but that doesn't make sense because without a specific name I can't go and be covered by insurance.

So now I have to call and get the stupid referral redone, figure out why the surgery is going to be where it is, and try to get it moved to a in town hospital.

I am so tired of doctors who don't take me seriously. I have concerns about my daughter and I want my questions answered. I don't send emails or call every day or even every week. Over the last year that she's had this disorder I've called and emailed maybe 7 times. I mean come on, that's not overly obsessive. Why can't she respect me and reply even if it's to say I can't answer those questions at this time?

To me this proves that she is too busy, just as I've always thought, and it's time for me to find a new doctor.

*sighs*

 
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Old 09-19-2007, 07:48 AM   #2
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Re: So Fustrated I don't know what to do...

I think your'e right,move onto a ped doc who cares.you need a surgeon who has a PA or NP who is doing what you just complained about.every single surgeon has one.this is the person who you end up talking to about all of the things you need answers to.you have a RIGHT to basic info so you can help prepare yourself and mostly your child.first,you need to find out the person(and the hosp where this surgeon is on staff at and where the surgery is being done) who you are supposedly being referred to,next call your ins co and talk to member services and start asking some questions.they should know all of the most pertinent info about who the heck they are sending you to ya know?
believe me, my son has gone thru major surgery as well as myself and in every instance,i WAS informed as much as possibly could be done before it all happened.you DO have some rights here to know simple info and few other things too.you are your childs advocate and her voice,they need us to speak up for them to make certain all the right things are being done.you just have alot going on right now worrying about your daughter and her upcomming surgery,you don't need all the extra crap they are putting you thru here.about the emails?i wouldn't even bother with them at this point,obviously nobody is reading them or bothering to respond to your concerns.hit the phone.you should be able to get something from the email address tho about where this is coming from and possibly a docs name?track it back from there.i have found i get much much further and more help by making non stop phone calls til someone finally listens to me.they don't like being bothered and eventually someone will give you the needed info.sometimes,when people are NOT doing their job for you you have to get a bit nasty to get your needs met.i had to deal with actual "teams' of docs and specialists when my son went into liver failure with a transplant.at a certain point,i did not care whos toes i stepped on or who thought i was a bit*&^.my son got all his needs met and i did my job as a mom/advocate.the squeeky wheel gets the grease,ya know what i mean?this is for your child,and you deserve better treatment.i would be making some calls here and as much as i had to in order to get what you need to know,geez,its just the basic info ya know?call your ins company about this,in some cases,like with ours,we had a patient 'case manager" for anytime they have a patient who has alot of needs and needs referrals for ongoing patient care.my son had one and so did i after my spinal cord surgery was done.they were sooo incredibly helpful i cannot even begin to tell you.your ins co may have these types of people too.it wouldn't hurt to check into it.

i hope you can finally get the info you need here.just have a big chat with your ins co,they are paying these surgeons to help their patients and if they are not doing their jobs for you,their clients,the ins co should know about it.they may be able to intervene upon your behalf.i have been very very lucky in that we do have a really great ins co for our health coverage.see what services they can provide for you at this point.it never hurts to just ask.please keep me posted.if i can help in any way,please let me know,believe me,i have been thru it all,as a patient and a mom of a seriously ill child who has required major and minor surgery and a ton of ongoing procedures and hospitalizations.i DO know how you feel.hang in there and hit that phone. FB
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11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 09-19-2007, 12:52 PM   #3
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PamalaLauren HB User
Re: So Fustrated I don't know what to do...

I've called three times in the past month or so and have been ignored there as well.

Just to make it clear though we have a Pedi and a Endo. Her Endo is the problem. Her Pedi is a great guy and I know if I ask him he'll refer me to a new Endo. He's been telling me to be patient with the Endo, but I'm past that point now.

So what I'm going to do is get this surgery done and then switch to a new doctor.

I did some calling around to her Pedi and then to the Hospital itself and finally got in contact with the Pediatric Surgery Dept so I know who to call and get information and set up an appointment. My Pedi is going to fix the referral as well once I set up with a doctor. So we're good on that side.

I just wish her Endo, who is the main reason for us having the surgery at that hospital (which is where she works) would just give me a call back saying she's got my messages and will get back to me or something.

It's insanely rude to not return calls and frankly unacceptable. I realized that even though she said I could email her, that wasn't going to work, so I stopped doing that. I've also bypassed calling her directly and decided to call the clinic instead but they say I need to speak to her and that they'll get her the message. So I'm a bit confused as to why she's not calling back. I thought maybe she was on vacation or sometimes she works at UCLA as well but that's not the case.

Oh well I guess, maybe she's not as concerned as I am about my daughter, so that just means I have to find someone as concerned as I am. I really wish her Pedi knew how to handle this disorder because he's great in regards to keeping up with her and responding to me. Nothing is stupid to him. It's too bad this disorder is so rare.

 
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