JuneFlower Posted March 14, 2014 Report Share Posted March 14, 2014 So a certain dr at a certain childrens hospital is being annoying. They want my daughter to submit to a whole day of autonomic testing before seeing them and then see the dr. I have worked in medicine for 17 years. One rule of thumb is that you examine your patient and take a full history before ordering tests and such. I explain that to them and they sent me a list of what they want done for my review. I still have many questions and really they are questions for the dr. I doubt they will answer them on the phone. And some they couldn't answer without seeing her. So I emailed my questions. But truly I find it negligent practice and am so far totally disgusted. I probably will not bother to take my daughter to this dr. I have one more fallback. Maybe they will work out. I think this is a case of specialists getting too big for their breeches and also wanting to cut down the workload. I am happy to pay for an extra consult but whatever. Doubt it will work out. They have their box and we don't fit into it.June Quote Link to comment Share on other sites More sharing options...
dkd Posted March 15, 2014 Report Share Posted March 15, 2014 Maybe they have a certain 'set' of tests that they do and they want to get all that info to review before they see her??? Sounds like a good thing to me that they're willing to do the testing. Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted March 15, 2014 Report Share Posted March 15, 2014 I agree with dkd, I think it's good that they want to do the testing, so that maybe they can discuss the results with her when they see her afterwards. This was how it happened for me. I had a load of tests before I actually saw my doctor, which was great because we could discuss the results together when I saw him. He has a really long waiting list, so if I'd had to wait and have all my tests after seeing him, I would then have had to wait for ages to see him again and discuss the results. So I think it's a good thing. I hope you can find help for your daughter soon.Best Wishes,Lyla Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 15, 2014 Author Report Share Posted March 15, 2014 If we are planning a whole trip halfway across the country, they could setup a pre exam and post discussion with the dr for the tests. It is just weird b/c they want her pediatrician to order the autonomic testing and that dr has no idea what they are talking about and it truly is unethical to order tests when you are unfamiliar with them. The specialist says they can't order them because they havent seen her yet and she is not a pt. The whole thing is like, "Who's on first?". Not impressed with them especially since I am willing to pay for the extra consult.June Quote Link to comment Share on other sites More sharing options...
Becia Posted March 15, 2014 Report Share Posted March 15, 2014 Sounds like what I went through when I started having seizures. The er at the request of the neuro, sent me home with orders to get some EEG tests and an MRI. I had to go through my general doctor to get those scheduled and and done, then the neuro would see me.If your doc is unsure what to order, have him contact them and ask. Simple as that. Mines done it for several things, and usually it bodes good will between the doctors, and he can learn something too, so for the next patient, he's got a bit more knowledge than he has. Mine has learned a lot about dysautonomia just dealing with me, and I think it's been very beneficial. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 15, 2014 Author Report Share Posted March 15, 2014 yeah I know I could do that, but its the principle of the thing. That is not how a proper doctor conducts themselves. They should order the testing after seeing her. The Pediatrician is blindsided by all of this and I don't think it's right to ask her to order it. Also it speaks volumes for the way they practice. They have no integrity and are doing things in reverse order. I will most likely see someone else with her who will do things in the right order. It is already an adversarial relationship b/c they neglected to even tell me they would ask her dr to do this. It was embarrassing for me. They are unprofessional.June Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 15, 2014 Report Share Posted March 15, 2014 June- While I can understand and respect your feelings and your viewpoint from both a professional and a personal/mom perspective, this may just be simple necessity on the specialist's part. There are so few doctors who are willing or able to treat this disorder and so many patients trying to be seen that they are probably doing whatever they can to get people in, tested and seen-however they can. I suspect they are cutting corners where they can in order to accommodate more patients.Certainly I'd recommend going elsewhere if you are feeling adversarial toward this doctor as it can't be a good experience for either of you now. Just be aware though that all the specialists in this particular area of medicine that I know of who are highly regarded are also very very busy. While I've found most of them to be very caring and compassionate and trying their best to help people, they're also totally overworked. Frankly we are a difficult patient population to work with so I'm always grateful to the docs who are willing to stick with us and help us out however they do it. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 15, 2014 Author Report Share Posted March 15, 2014 Chaos- Actually they don't appear busy as evidenced by them calling me back right away and scheduling her so soon for an appointment. They almost seem desperate to have my daughter become a patient. It's a bit worrying. Even though it is good not to have to wait, it makes you wonder how good the doctor really is.June Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 15, 2014 Report Share Posted March 15, 2014 Well, if you have doubts and don't feel comfortable...go with your gut. Hopefully your next doc you have in line will work out better for you. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 15, 2014 Author Report Share Posted March 15, 2014 Yeah I don't want my daughter to have unnecessary tests. I need to speak with the dr about that 1st. So yeah they have no option for that. There's one dr left we have an appt already . Maybe he will be reasonable.June Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 16, 2014 Report Share Posted March 16, 2014 Hi June,When this all started with my son, a local cardioligist diagnosed him with POTS. He was not a POTS specialist but he was glad that we went to MAYO to get the diagnosis confirmed. They did additional testing plus another TTT. Additional testing maybe necessary but it will be worth your time and effort if you can have consults or a nurse line available to help with futher problems or symptoms from POTS. Finding the right doctor can be frustrating but take the time to find the right doctor that will work for you and your daughter. I have read a few good post on this forum about the Cleveland Clinic and Dr. Grubbs. This is probably where I would take my son to if he needed to be reevaluated again. Quote Link to comment Share on other sites More sharing options...
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