Bad experience with doctor - need advice

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bandbmom

bandbmom

Joined
Aug 1, 2011
Messages
42
I am so mad right now and I just wanted to ask what someone else in this situation would do. To recap - Blake had a resection in March and has been doing good. He had a colonoscopy done on August 12 and they found evidence of the Crohn's recurring. I had to call the doctor's office a week and a half after the test to see what they had found. When they called me back they told us about the evidence of Crohns and that the doctor wanted to put him on Cimzia or Humira. Blake had to have a chest xray, bloodwork, and a TB test. This was all made worse because he was leaving the next day for college! On the way to college he went by the doctor's office and got the chest xray and bloodwork and he did the TB test the next day at the student health center. All of this was done on August 22 and 23. I've been calling the doctor's office every few days since then to see which medicine he's going to be on and when we would be getting it. At first they were out of the office for a week, then they didn't do the prior autorization, then they told me everything should be ready the first of last week. Well, I called today and they are out of the office again. So, I called the insurance company and they told me that the doctor's office hasn't sent anything in to them yet. So, I'm assuming since they haven't sent anything in, it will be another two or three days before the insurance will authorize. And then we've got to figure out when he will have time to go to the doctor's office! I would really like to find a doctor in his college town for him to go to - but I know that it would take a while to get an appointment and that would just defeat my purpose. Anyway, I guess I just needed to vent to people who understand. :mad:
 
I would be angry too band mom!

We work with Pediatric GI so this may be different but I have never experienced having such a hard time getting a response from someone. If our nurse is out then someone else will consult the file and speak with our GI or another GI. Usually we are able to at the very least figure out when we can expect things to start happening.

We are able to stay at our Pediatric GI's office until my son is 26. Has your son started with a new GI closer to his college or is he staying at the old GI's office?

Has the GI's office told you whether they feel Cimzia or Humira is their recommendation yet?

I am sorry this has been so frustrating to you. That sort of wait has not been our experience but I know others on the forum have had that experience so I don't think it is uncommon. I have found that sometimes you have to be a pain in the butt to get a response. So my advice would be to keep calling.

((((hugs)))))
 
The GI and his nurse are both out. I would ask to talk to someone else, but I know they'll tell me I have to wait on our doctor. We had to swap away from our pediatric doctor when he turned 18, so we've only been with this doctor for a couple of years. We were going to try to stay with this GI because his office is about halfway between our home and his college - about an hour or so from each. But, it's going to be hard for him to spare the time to go that far if he has to go often.
They haven't told us which medicine they wanted to go with. They were going to see which one our insurance would pay more on before they decided. But, apparently they haven't even talked to our insurance company yet. I have been calling frequently, but it must not be helping. :mad:
Thanks for listening! :)
 
Uggh, sorry you've had so many challenges with the doctor's office! That is so frustrating! Other than continuing to follow-up and call, I have no other suggestions. :(

I hope you have heard something this morning. If you are thinking of transferring to a GI closer to school, it might be a good idea to start looking... but doesn't help with speeding things along now.

Thinking of you... :ghug:
 
I am actually in the process of trying to find a new GI for similar reasons. I was prescribed 6-mp by my doc but told him I was unsure about taking it. He said he would if he were me and to go fill the scrip, so I did but the day I was ab to start taking it I noticed a swollen lymph node in my groin and what appeared to be the start of a staph infection on my leg. Called the doc twice the 1st day they said they would call me back, but never did. Called twice the next day, the nurse called back, said my doc was out of the office but she would talk to another doc and call me back but never did. So the next day I went to a walkin clinic and they said it def looked like staph but they could not treat me because I was on medication that modified the immune system. So I call the GI again but their office was closed andI got their answering service. That guy tells me he cant help bc a staph infection is not a GI related problem. So at that point I lost it and cussed out the answering service guy. He gets my info and hangs up. A doc (not my doc) calls me back and I tell him the situation. He says he will tell my nurse and there will be a prescription waiting at the pharmacy in the morning. So the next day Icall the pharmacy twice and they never had anything. So I call the doc again and the front desk lady says she can take a message but that's all she can do. So I had to go to the ER to get a prescription for antibiotics which is completely ridiculous.

I'm very sorry to hear you are having so many doc issues, but this seems to be very common among crohn's sufferers in the US, especially in the southeast US. Healthcare is in a very sad state in our country....I really feel your pain, and your son's pain ha
 
To say I would be mad is an understatement... Lose my mind is probably a closer statement!

I so fear the day my sons have to get an adult doctor (no less a specialist for Crohn's). Our GI recently told us she can continue to see him until he's 21... that helps a little bit (4.5 years and counting down... eek!)

Hope you get this resolved soon!!
 
Out of the office? What if your son has an emergency? Honestly, they sound absolutely terrible.
 
Anything bandbmom??

Keep badgering them on the phone mum and in the meantime send off a letter/email, that way it really should be addressed. Set out the timeline of events and the frustrations and inconvenience you have experienced. Acknowledge that you understand they are busy and they have responsibilities to others but that they also have responsibilities where your son is concerned. I would say...I don't know if you have personally dealt with this condition but it is heartbreaking having a child with Crohn's and it goes quite some way to alleviating that ache when the people that are paramount in your son's care are both contactable and responsive.

Then start looking elsewhere but all the while get what you can out of this mob before while you are waiting to transfer. :)

Good luck and loads of well wishes! :heart:

Dusty. xxx
 
They finally called me back yesterday and said that they had sent in both meds to the insurance to see which one they would pay on and that made them kick it out. She, supposedly, is in the process of resubmitting. Of course I've heard nothing else! I'm going to be looking for a doctor close to his school today I think.
 
How frustrating for you! If I were you I'd probably also call the insurance company to see if they pay for both drugs and then you can call the doctor back and say ou spoke with the insurance.
 
I called the insurance company today and they said they did get the prior authorization form from the doctor yesterday. But - they had to send it back for more information. She said it would take 3 to 5 days after they get all the information for approval. This is so frustrating!
 
Seeing as the balls rolling albeit slowly id wait it out for now but once hes settled on his new med to look for a dr near his college... I have a wonderful doctor and lets just say he went from the us to the uk for a vacation and while he was away I got sick and I spoke to a nurse in the office who spoke to another gi who then rang my doctor in the UK! my dr will take calls regarding his patients even while on vacation and when he is out of the office!

Im not saying hes perfect or that there are many drs like that. But look at the two extremes we have here. That dr knew your son had the potential to flare kn his absence and set nothing up to even reassure you!
 
Unfortunately you are on the hook with this doctor because you need a rx for your son ASAP...which is just nuts! You can't go on depending on a dr that's not dependable, get an appt with someone closer to school & give them a sob story that he is in a flare & really needs an appt quickly.
Your kids dr needs to be a good fit for him. Our situation was that we were going to a very reputable pedis GI practice but the pediatric doc had a horrible bedside manner. He would talk about every bad thing that could possibly happen. We would leave the appt and my son was so nervous that something bad was going to happen he was afraid to take a deep breath...it was crazy. So now we go to a NON peds GI who is wonderful with my kid...go figure
Keep plugging away, it will all come together!
 
It would be good for your son to transition into managing his own care and this would be easier if he had easy access to a GI.

Keep in mind that ped GI's and adult GI's approach patient care very differently in most cases. Ped GI's expect to shepherd their patients/families through the process and keep a close eye on how things are going.

Adult GI's do NOT do this at all although some are more patient-friendly than others. Clearly you found one that does not put patient care at the top of their agenda.

When looking for a new GI you might include on your list of questions whether they close the office when the GI is out of town, how they handle emergencies when the doctor is not available for extended periods of time and whether the doctor has admitting privileges at a hospital that takes your insurance.
 
Well, we finally have everything done. He is going on Humira and they are shipping it to us tomorrow. Now, the fun of figuring out how to get the shots to him at school. The never-ending fun of Crohn's! :frown:
 
This is exactly what happened to me when I first was trying go get on humira. Just for future reference if your sons GI works in a clinic with other dr.s, specialists ,ECt...there is no harm in calling and asking for a patient advocate. Most clinics have them depending on how big they are, I called and asked to speak to a patient advocate. Explained to him what the problem was, he took all my information and concerns and I received a call from my GI two hours later. Just a thought for you if this ever happens again :)
 
My daughter's friend has Crohn's and goes to boarding school. Her Humira shots are shipped to the Health Center. That way they're refrigerated immediately. Would that work for your son?
 
Samuelsmom... tagging CarolinAlaska. She lives there and can probably answer your question the next time she pops in.
 

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