Getting a Dr. 2nd opinion - Need advice

[v.t.]

My DS has been diagnosed with Crohn's disease almost a year ago. His GI doctor is supposed to be the best in the area. Seriouly, I asked around and he was recommended by everyone, even all my friends in the medical field!
While he is an excellent dr, I am not happy. I feel as though DS is just another number and not a priority.
A friend of a friend recommended a dr that she swears saved her DD's colon. I would really like to get a second opinion from this doctor but am hesitant. Has anyone gotten a second opinion? How did you go about requesting records, etc. and what was the reaction from the original doctor? And why is this so nerve racking, why does questioning a doctor seem so hard to me? Anyone else feel the same way?

 

[mfortune]

My husband was diagnosed with Chron's Disease in 2007 and since that time has had two resections. He is currently struggling with a flare right now. Although he hasn't received a second opinion, I really want him to. I have been urging him to do this since the beginning, but he really likes his GI doctor (who came highly recommended) and says he isn't ready to give up on him just yet.

As to your question about transferring records, I would assume that you would first call the new doctor and explain that you are wanting a second opinion. My guess would be that that office would then request the records from your current doctor. But, I don't really know so maybe someone else will!!

 

[MaleficentRN]

Don't be afraid. Your health is too important. If you feel your are not being treated properly you are smart to seek another opinion. Don't even worry about your doctor's feelings. They've been on either side many times, I'm sure. If he is miffed, that is another clue you need a second opinion.
I was not happy with how my son's ped was treating his asthma and took him to a specialist. My ped was fine with it and now my son's asthma is controlled. His health came first. Not the ped's feelings. Good luck!

 

[Gr8t Fan]

My DD was 6 when she was diagnosed with Ulcerative Colitis (UC). We were originally referred to a Ped-GI (before diagnosis) who basically told us that she had to have a colonoscopy and DH and I were being "babies" because we had so many questions about the test and felt that a colonoscopy was extreme (she'd had 3-4 slightly bloody bowel movements in 6 years). We left and searched for another ped-GI. He recommended the same thing, a colonoscopy, but also said we could try to wait things out and hope things got better. Ultimately she did have the colonoscopy and was diagnosed with UC and started taking meds. She's had a few flare-ups since then (she's now 14), and during one of the major ones we got a referral to the "premier ped-GI" in Chicago (at the nagging of family and friends who thought her doctor was *not doing enough to help her*). The "premier ped-GI" confirmed the diagnosis and confirmed that she would be following the same course of treatment. Honestly, we got another opinion to quiet the naysayers and naggers who knew a "friend of a friend of a friend" who was saved and/or helped by Dr. (fill in the blank). We had complete trust in her doctor, and belonged to an internet support group for parents of children with IBD, so we knew that flares are sometimes hard to get under control, but it was hard to explain that to well-meaning family members and friends. Now when they have recommendations, I simply tune them out. I know they mean well, but they don't deal with our daughter and/or the disease everyday. We always say that walking out on the first doctor was the best thing we've done because her current doctor is wonderful -- very personable and understanding, and always ready to explain further if we have questions. He was also wonderful when we wanted to see the other ped-GI to confirm the diagnosis, even going so far as to call the doctor to discuss the appointment and what she felt about her course of treatment. Good luck to you!

 

[Pixie Dust for Me!]

A while back I was dealing with a very serious health issue. I went to one of the "best" neurologists in St. Louis and after not getting any better, went to one that a good friend of mine suggested. She said that she was a bit "granola" but took a lot of time with her patients. At first, I was hesitant, but I wasn't getting any better.

Then, my mom, who is a retired RN said this to me, if your mechanic wasn't fixing your car, you'd go elsewhere....why not try another doc? My concern was that the doc would be angry and wouldn't treat me any longer. She said, "if that's the case, Dr. ______ needs to lose patients as he is more worried about his reputation than YOU!"

Well, I went to the "granola" doc and it was the best decision I made. Essentially the other doc had misdiagnosed me...it was an honest mistake, but one that could have had very serious consequences for me.

Here I am, 5 years later and I'm "nearly" normal!

If you want a second opinion, go and get one! Don't worry about how the doctor feels...worry about you!

Karen

 

[Brer Shay]

Your medical records are exactly that YOURS, or in this case your child's. Ask for a copy of them. You may have to pay a copying fee for this, but the office is required to give them to you. I make it standard practice to get a copy of every test I (or my kids or DH) have done. That way I can take them anywhere I want. I've only actually needed them once, but I was thankful that they were at my fingertips.

As others have said, if the Dr. is annoyed, that's reason to consider going elsewhere all on it's own.

 

[CowboyCO]

It is a difficult diagnosis and I'm sorry for you and your DS. MY MIL has had Chrohns for 25+ years and has gone through 3 recessions and countless flares. She undergoes infusion therapy every 3 months or so to try to keep it in check. By all means get a second opinion on the best course of treatment. Not everybody with Chrohn's responds the same way to diet, treatments and therapies. Good luck!

 

[Gr8t Fan]

I don't know if you belong to the support group that I mentioned above. If not, here's a link to them: http://www.dragonpack.com/ibdsupport/parents/
The wonderful parents there have gotten me through many sleepless nights and are a godsend.

 

[v.t.]

Thanks for the support. I don't know why I am having such a hard time dealing with this. When DS was a newborn I was able to stand up to all the doctors and surgeons without any problems. But this time it is different. While I know every child is special and important, I feel as though my DS is not getting the specialized treatment I feel he needs. The doctor keeps saying he is such an unusual case but then he doesn't treat him as one. (If that makes any sense.)

 

[AmberHeartsDisney]

Id see a different Dr. It never hurts to ask!

 

[chris31997]

Odds are you when you call you would talk with the receptionist or nurse. So you would not even talk with the dr.

Get the second opinion. Sometimes talking with another dr who is in the same field will open you up to differant treatments. Even though this dr is the "best" he maybe stuck or not up to date on the latest or he may not even think outside of the box in treatments.

Go to another dr and see what they say.

 

[disfan07]

My doctors are all very open about getting a second opinion. The excellent doctors usually have no problem with their patients going for a second opinion.

Right now, I have 2 recommendations for rheumatologists because my primary thinks I might have RA. I have an appointment with one of them and if i don't feel comfortable I will make an appointment with the second one.

I went through 8 dermatologists in Virginia before ending up at Hopkins with an amazing one. We would switch derms. everytime we felt the treatment had stalled. We would just request the files and switch. I just wish we had pushed for a referral to Hopkins sooner.

We also switched pulmonologists in virginia. That was weird though because we just switched to a different pulmnologist in the same practice. It was weird at first but it was what needed to be done.

My neurosurgeon even ASKED me if I wanted a second opinon before we made the decision about surgery. I turned down the offer because very few surgeons have ever done the surgery he did and I had checked his history and credentials and he is a top in his field and one of only a few who had treated what I had. I trusted him 1000%.

None of my diagnoses have been straightfoward and at this point, none of my doctors will confirm a diagnosis unless they have consulted with another doctor just so they can get a fresh pair of eyes and a new opinion just in case they missed something

If you don't feel something is right, it is more than okay to get a second opinion. If the original doctor has a problem with that, than they are probably not a doctor you want to stay with anyways.

 

[Christine9125]

Go Get a 2nd opinion. After my daughter had her second ear surgery to remove a non cancerous tumor, I felt the same why you do. I got a second opinion and was told what our doctor was doing was the best treatment for her. I don't think the doctor will even know if you have requested records or not, but like the PP said, any doctor worth it will not have a problem with you getting a second opinion. Ask about Remicade, my husband has had Crohn's since 1996, he was about reay to have surgery when the remicade took effect and right now, after his last scope, the doctors said if they didn't know his condition, they would not know he had crohn's

 

[v.t.]

I don't know if you belong to the support group that I mentioned above. If not, here's a link to them: http://www.dragonpack.com/ibdsupport/parents/
The wonderful parents there have gotten me through many sleepless nights and are a godsend.

Thanks for the link, I will look it up.

Go Get a 2nd opinion. After my daughter had her second ear surgery to remove a non cancerous tumor, I felt the same why you do. I got a second opinion and was told what our doctor was doing was the best treatment for her. I don't think the doctor will even know if you have requested records or not, but like the PP said, any doctor worth it will not have a problem with you getting a second opinion. Ask about Remicade, my husband has had Crohn's since 1996, he was about reay to have surgery when the remicade took effect and right now, after his last scope, the doctors said if they didn't know his condition, they would not know he had crohn's

I am glad your DH is doing so well. Right now DS is on 6-MP and it does not look like it is working.

I finally got the nerve up and called the 2nd doctor and it turns out she does not take kids. So, I am now looking for another doctor. Ped. GI are hard to find. Anyone know of a great one in the DFW area?

 

[Gr8t Fan]

Thanks for the link, I will look it up.



I am glad your DH is doing so well. Right now DS is on 6-MP and it does not look like it is working.

I finally got the nerve up and called the 2nd doctor and it turns out she does not take kids. So, I am now looking for another doctor. Ped. GI are hard to find. Anyone know of a great one in the DFW area?

If you register on the Dragonpack board you can post and ask for recommendations in the DFW area. I think there are 2-3 moms in your area who post pretty regularly.

My DD is on 6MP for her UC and it has been working so far (about 6 years), but her dr. said she'll have to try remicade once the 6MP stops working. Also, it took about 2 years of trial and error with different meds to find the right one and the right dosage to control her symptoms. She's been on prednisone, colazal, pentasa, asacol and finally 6MP. We also tried traditional Chinese medicine and acupuncture at one point. For several years it was colazal and 6MP, but in the past year or so it's been only 6MP and it's been effective at controlling her symptoms.

 

[HM]

One of my coworker's children was diagnosed with Crohn's many years ago. They found out a few years later that he had something else (I'm sorry I don't know what). I would say that getting a second opinion might be a good idea. And you should be happy with your doctor.

 

[yarlenna]

Crohn's is diagnosed by biopsy. Treatment is not that easy to pick. Once you have your diagnosesis your doc will start with things that work for him or her. It can take years to find the right treatment. Yes, get a second and even third opinion. A good doctor will be ok with it.

 

[quentina]

See if your medical insurance offers any type of "best doctor's" program. This is where your records get sent to specialist who review file and see if they agree with the treatment. I am a benefits manager and we are lucky enough to have this type of program......many people have benefitted from it.