Are all doctors this hard to reach?

[jph]

I had a phone consult with a PANS dr. in Dec. The plan was to do 30 days of abx. If that didn't work (it didn't), then he thought that would rule out any bacterial sources, and we'd try a steroid burst. Dec. 31 was the last day of abx. I called the dr. and the receptionist took a message. This happened four times in the next two weeks. Then, I just gave up.

But I'm ready to start fighting again.

Are all doctors so hard to reach? Partially venting, partially really curious. As if PANS isn't bad enough, is this playing hard to reach game with doctors all part of the cruelty?

Edited January 22, 2014 by jph

[beeskneesmommy]

Yes. They are overloaded with lots of other mothers just like us. I have learned to be very persistent and I am able to get what I want as a result. Talk to Silky and explain your situation. I called the office last week and there were appointments available throughout the next 2 weeks, barring a couple of days d/t the conference. You may have to pay for a teleconference of make an appt. and go there. They are all trying to do their best for us - they have patients flying in from other countries as well. There are very few of them to go around, sadly. Good luck!

[airial95]

In know it's not always an option, but a local pediatrician who is at least open to PANDAS and learning about it can be your best resource. We have consulted with multiple PANDAS docs, however, it's our pediatrician that we go to when we need something quick. Because he is privy to everything that happens between us and the specialists , a situation like yours where you were already given a next step but just need a script - he would step in for us.

 

Both of our specialists (Drs. M and have both been thrilled with how proactive our ped has been. He was far more conservative at first, but having their insight and buy-in, even on the sidelines has done wonders.

 

Often folks tell people to get with the experts ASAP - even if they have a supportive local doc, but it's often the local docs that are far more responsive and can be clutch in critical situations.

[cara615]

I agree, our pediatrician was wonderful before we got into see Dr. Fier (Pandas Specialist). She was willing to prescribe abx for as long as we needed as long as we were seeing progress! Oh and our ped is covered by our insurance where Dr. Fier is NOT!

Edited January 21, 2014 by cara615

[Guest]

No, not all are like this. I had the same exact problem with Dr. T as many others.

After 2 phone appt's I never heard from him again. I tried every means as a very sick and ill patient to make contact, and no return.

I should mention that when they quit talking to me I was in the ER having a bad reaction to the anti-viral HE prescribed!!!!!!!

 

I tried and tried then gave up. I'm glad I did. My new neurologist is good about getting back. He'll call back late the day of, but at least he or his nurse calls back. He called about a week ago and talked to my mom and I for quite awhile even though he had a terrible cold. He is far more busy than Dr. T since he works at NYU, so I don't understand the problem. Doctors can't treat patients like this!!!!!!! If you have too many patients, then scale back. Geez.

 

The receptionist there is impossible. Very unprofessional office.

[tpotter]

ophelia22, I was wondering how things were going for you. I know it's been so hard all these years. Sounds like Dr. N. is working out great for you. I'm really glad. And, I agree with you about Drs having respect to return calls. There's no reason for doctors not to return our calls.

[kleek3]

I will add that we are in the same boat. I'm not knocking what he has done for us, I'm simply agreeing with ophellia22. I'm in the process of making a change. Just not sure which way to turn at the moment. Good luck to you! Thoughts and prayers to you.

[T_Anna]

Dr.T has been amazing in helping our son! He does triage patients, so he deals with the his patients in crisis first. A majority of his patients are super severe: catatonic, anorexic, literally at death's door.

 

I always try to make an appointment to talk to him. Yes, that makes it expensive, but I try to do my own research and know as much as I can in advance about what we will discuss and once he is on the phone he never rushes me off. I have also found the secretary always very kind.

 

His level of involvement is definitely not for everyone, but I cannot say enough good things about him and his treatment of my son.

 

As an example, we had a very negative experience at NYU with Dr.N, so these experiences really vary by patient.

 

There are already too few doctors treating this illness, let's try and critique in a constructive way.

 

T.Anna

Edited January 25, 2014 by t_anna

[Rachel]

I don't feel so alone now. I was wondering if anyone else was having trouble getting answers from their specialist.

Rachel

[tpotter]

t_anna, I know you said that he responds to the ones in crisis first, but if Ophelia22 was in the ER having a severe reaction to the medication he prescribed.....

 

But, in answer to the original question...some of the drs are more difficult than others to get hold of. After 8 years of dealing with this, I refuse to deal with anyone who does not return my calls or emails anymore. I feel I wasted way too much time in the beginning trying to get hold of people who were not going to return my calls. It would be wonderful if an appointment could be made, but, at least back then, our pediatrician had no idea what to do, and it was critical to get hold of the specialist when an emergency came up. We had 2 drs. like this, and for us...it's just not worth the aggrivation.

[riffleshell]

Wow, I'm having the same troubles just trying to get our pediatric neurologist's nurse to call me back with our ASO/DNASE titer results. We had the bloodwork done on Jan. 6th! I gave them a few days to get the results back and have literally called every day since then trying to just get a nurse to call me back. (Apparently the nurse was out, plus there was MLK day and a snow day when the town shut down.) But I'm still frustrated! I need those results!

[Guest]

I guess constructive criticism would be: get your office in shape. It can be done! If the doctor isn't the issue, that's GREAT! But he will have to take a cut in his pay to hire other people. Really he needs a P.A. and a nurse returning calls and more people answering phones who are trained.

 

My psychiatrist has tons and tons of patients but he has 7 people on staff and he said most doctors aren't willing to see the cut in their salary, however his office runs smooth as butter and there is a nurse there at all times answering and returning calls. He has a P.A. seeing patients when he gets too busy and the rest working up front, filing, scheduling, someone always answering calls, and lastly a part-time case worker handling all referrals.

 

I think patients deserve things to be easier and not incredibly difficult. Nobody was attacking the doctor or his work, we're just simply saying, "the office is a mess", "we couldn't get anyone to return our calls or handle our needs".