How many have changed Doc or had second opinion?

Angelina is 4 years old she was diagnosed last October. Since then she has had every med but chemo. I've read several posts on here that have said a second course of some meds has worked. Angelina's doctor now wants us to try vincristine. My wife and I are in a quandary, should we ask to try previous meds again? Get a second opinion? She's had ivig, prednisone, winrho, rituxan, nplate. She has no bleeding just bruises easily. Her last count on monday was 9000 she have hovered between 3000 - 12000 since she was diagnosed. None of the meds have had any real effect on her counts.

Getting a second opinion is always a good idea if you're not feeling completely comfortable. In the 3.5 years since our 6 year old daughter has been diagnosed, we have seen a few docs and they all have had varying opinions and approaches to treatment options. I can relate to your hesitance and it can sometimes be really difficult to make decisions about your child's healthcare. Even if you feel like your current doctor is competent, never feel bad about getting a second opinion or even switching docs.

In our experience, there are times when some meds work and others don't. Then 6 months down the road, there will be no response to meds that previously worked. I never understand why but this is something we have experienced and maybe it would be worth revisiting a previously tried treatment which could have less significant side effects. I'm not a doctor though, and only you guys can make these decisions.

Good luck to you and your family.

I agree that a second opinion is a good idea if something feels "off". After six years of my daughter having ITP if I have learned one thing it is to trust our gut/instincts. The first 6 months she was diagnosed, we were in L.A. and had a similar experience as you seem to be having (a ton of treatments one right after the other). After 6 months we moved to Colorado so we kind of had a forced second opinion. We are grateful for the move every day because our hematologist in Colorado is amazing. One thing we learned (that we probably would not have experienced if not for the move), is that when you keep trying treatment after treatment, it is very difficult to know what works and what does not work. That does not mean that it may not be necessary (depending on symptoms, etc), it just means that there are more than one school of thought. I have shared this a few times so if you have read it I apologize. When my daughter was first diagnosed, someone told me that if you ask 4 different doctors, you would get 10 different opinions about ITP and how to treat. When I said this to my current hematologist she said "I have 2-1/2 of those opinions". It is frustrating, but it is, unfortunately, a part of ITP.

As I said, trust your gut and never worry about "offending" a doctor or any one else. What ever feels right for your child is absolutely right.

Good Luck,

JJ

The nice part about the internet is that you can get a ton of valuable info on the right websites, such as this--> bloodjournal.hematologylibrary.org/cgi/content/full/115/2/168

I sent that to my doc and she agrees with the most part. I got that link also from this website. But, yes, i agree re having second opinions. in the world of MDs, those things happen often. The best thing to do is to build a working relationship with your hemo, if that's possible.Your ITP doc should be someone who must understand your situation and allow you to have input in your treatments, imo.

Any Doc who has a problem with a 2nd opinion isn't worth worrying about. If they have a problem then dump them and find a better one. 2nd opinions are valuable and appropriate.

2nd opinions are great. We got a second opinion 7 months after our daughter was diagnosed. THEN, we got a third opinion 7 months after that. It is totally worth it - if they all say the same, then you know that you can trust your ped/hemo. However, we found that the third one really explained things well, probably because we went to a pediatric hospital. What a great experience.

It is your child, do what you think is right.