What if second opinion is not the same ?

[Jane and Nick]

Hey guys,

I was feeling rather pleased with myself as I had managed to send Nicks reports and scan results to the doctor in Singapore. I did get help from my better half but zipping documents and mega bytes tend to get the better of me.

I suddenly realised what if the doctors disagree, what if I am courting trouble? Should I just go with this GI who really has no clinical experience but is willing to learn with us, or do wait and see what the expert, who also doesn't see this in clinic often but is at least a peidiatric doctor.

You know what's the worst, or the best is, Nicks doing great ! No pain no blood and loads of energy. If only we could stay on 20mg of pred for ever.

Jane

 

[SupportiveMom]

If two doctors don't agree get a third opinion. Keep getting opinions until you find two doctors that agree. I doubt you will have to search far. The worry and wonder and anxiety is the worst. Work on the things you can control. This is not one of them. I spent D's first year trying to control the blood tests and results and all of the other stuff. It did me no good. Now I just try and focus on the food, taking medications and ensuring they are the right ones for her.

From a mom that has a kid on prednisone for 1.5 years get off it as soon as you can. I wish I pushed earlier to get her off. It is NOT a good long term solution that can come at a big price down the road. Short periods are ok, but not long term. Wish I knew that back then.

 

[lbligh]

I'd say that you want to be as well educated as you can about the disease, so you can determine whether the doctor's opinion makes sense. You are going to be the #1 expert on how the disease manifests itself in your son. If a doctor doesn't seem interested in your observations, that would be a warning sign. Even the best doctor in the world cannot know everything about your son in a short time, compared with your round-the-clock knowledge. Choose the doctor whose opinion reflects or confirms or validates or enlightens your own opinion.

 

[Mehita]

What exactly are you worried they won't agree on? Diagnosis or treatment? If they do disagree, do you think they'd be willing to work together to come up with a joint recommendation for you?

 

[Patricia56]

Depends on the difference as Mehita said. The biggest problem would be a difference in diagnosis because then you may be talking totally different treatment plans.

If the difference is in proposed treatment plan then I think you need to spend time closely questioning the Singapore doctor on his/her reasoning so you thoroughly understand the basis for the recommendation. Then you will have to choose because I doubt you can get a 3rd opinion without going to Australia.

If I had to guess any difference in treatment plan will come down to step up vs. top down approaches so if it were me I would try to be prepared for that by understanding the pros and cons of each approach - assuming you would be willing to try either approach.

Remicade is most likely to get him off prednisone quicker is my guess. Most kids seem to respond by the 3rd infusion (6 weeks) after which you can start to taper. Doing AZA or MTX is probably going to take longer - at least 6 weeks up to 4 months with AZA and then you can start to taper. At least that is my understanding. I would ask very specifically about that part of the process if the Singapore doc recommends the step up approach.

The other wrench in the works, particularly parents of boys with IBD, is the possible link between HSTCL and the use of AZA. A recent review of studies on the subject of lymphoma in IBD patients found that there was an increased risk of lymphoma with the long term use of AZA. However, and this is a very important however, at least 99% of patients will not develop cancer. Here's the link

http://cdn.intechopen.com/pdfs-wm/35455.pdf

HOpe things go smoothly and the two docs agree.