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Conflicting advice


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How have you been able to decide which expert advice to go with when you get conflicting recommendations? So far, we have had 10 medical professionals involved in DS's care during the past 10 months, since diagnosis. Half insist that tonsils must stay in, half want to remove. Same divide pretty much goes for SSRIs, remaining in a school environment, CBT/ERP, pursuing additional IVIG, which antibiotic to use and at what dose, whether supplements are beneficial, etc. It is very confusing. There are times when I think I am simply choosing what is convenient for me, rather than what is best for my child. I certainly read up on all of these topics. But when the literature is as divided as the expert opinions, I feel like I may as well just be tossing a coin. Then you never know how long to go with choice A, if it does not seem to be working, before possibly pursuing the opposite of A. I also wonder if, at times, I am getting to the point where I would simply shop for whatever specialist told me what I wanted to hear. And while, on some level, I do know my child's medical situation better than anyone else, I don't have the answers and could use good solid medical advice. But I have been getting whiplash from the conflicting good solid medical advice I have been getting. How do you usually figure out which expert opinions to trust? Thanks. ~ Suzanne

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Suzanne, you took the words right out of my mouth!!! I'm sorry my reply will be of no help to you as I am at the point of feeling the exact same way with all of this! My ds is so bad that my latest plan of approach is throw everything at the wall and see what sticks! Very scientific, I know! He's been on low dose SSRI since prior to pandas diagnosis (don't know if it's helping or not as I've never taken him off), on antibiotics x 1 1/2yrs, just did steroid taper (no response), saw ENT, Ts & As small, sinuses congested due to allergies - started steroid nasal spray, he's willing to pull tonsils if I want, but like you said, experts are divided so do I want to risk the surgery setting him off worse?? Am awaiting IVIG approval from insurance (not hopeful) and finally just saw pschy to try AAPs to try to calm the raging outbursts in the meantime, going on day 4 - nothing yet! Running out of options here, unless I fly to see expert on East coast, which one???, Then check for co-infections, lyme and go down that horrendous road, it never ends......

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This is what causes me the most personal stress. I feel like the person who makes all the decisions has no medical training (that'd be me!) and I am trusting my son'ts care to her, and will have her to blame if something goes wrong or isn't right.

 

In the end, we all just do what we can, trust who we trust, and do our best. There is more than one way to skin a cat, and as you can see from the board different things work for different kids.

 

I will say on another note that I nearly gave myself a nervous breakdown flying half way across the country to meet with a doctor many other professionasl didn't trust, for a treatment my insurance, and every doctor I saw considered "controversail". IVIG was the best thing I did for my son. I've no regrets - the only regret I have is not doing it sooner because I was sooooo stressed out and fearful of making the wrong decision.

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I think this is the same stress most of us feel every day. For me when I feel like I can't process all the information I take a break. I've learned that there is a big difference between doing nothing and standing still for a moment. I watch bad reality tv, drink a glass of wine, etc...whatever it takes for me to stop thinking about all this medical stuff for a few minutes. And I pray a lot. I think my mind keeps working in the background but a small 'break' sometimes gives me clarity...not that I suddenly know the right answer but it sometimes allows me enough distance to form a plan for next steps. It's very easy for me to end up in 'analysis paralysis'. I get to the point where I've thought through all the options so many times that I'm just turning in circles. So I take a break and then I choose something. Just one step to start moving forward.

 

We are fairly conservative in our treatment plans but I think that's a personal choice and completely depends on how your child is doing. Right now we are pursuing other antibiotic therapies and testing for co-infections before IVIG/PEX - even though our doctor has recommended IVIG/PEX. We already have a positive Lyme test. We've done steriods (they helped but also caused a lot of other issues) and do CBT regularly (has been extremely helpful!). We tried SSRIs on the recommendation of two doctors and that made things much worse. We've also use homeopathic remedies and I'm not yet sure whether they are helping...just too early to tell. My point is that I make the 'wrong' calls sometimes and then I just have move on to the next thing. It's certainly not the way I wish things worked but it is what it is.

 

I also worry that I'm just choosing the easiest option sometimes or going to the specialist that I think will prescribe the drugs I want to try, etc. But I believe that deep down I want those things because I really believe that they might help my son. And wouldn't it be awesome if the 'easy' treatments really did work! As long as it doesn't cause harm...I'm willing to try it.

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I had a similar conversation with my kids' doctor a few weeks ago, on why Dr A's protocol works so well, yet when my Dr tries it with his patients, he doesn't see the same results. Same with Dr Xs and Dr Ys protocols. Yet my own Dr does protocol Z and has better results with it than his peers do. He feels that in a way, patients are self-selecting. The ones who see Dr A and do well never move on to DRs X or Y. Those who don't do well with Dr A move on and never get reported in the results that Dr A discusses in papers or conferences. These patients maybe get reported in Dr Ys success stories.

 

There's a reason I've left some doctors and stayed with others. Their approach, their personal styles, their areas of expertise - either helped and we stayed or they didn't and we moved on. So all the docs who feel tonsils should stay probably have sound reasons and a pool of patients to support their position and vice versa.

 

Unfortunately, until medicine is more individualized with genetic testing or protocols based on unique factors (e.g. only blood type A does well with one thing, only people with gut flora type 2 do well with another), you're left to learn what you can about various doctors and go with what resonates with you. It is in a way, doctor shopping. You do tend to see the docs that are going to prescribe what you're hoping for. All you can do is research as much as you can and then yes, go with your gut.

 

Like NMom, we all have to live with our mistakes (and there will be plenty). But at least they're my mistakes, not someone elses, and I have the power to make sure it's the best, most well researched, most sincere mistake I could have made at the time.

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We have a team of 6 doctors that we see for my son. Before we make any big decisions (like the T&A he had done yesterday), we run it by the whole team. Our immunologist didn't think it was critical right now, but would likely have to happen in the future. Dr. M, who initially said NOT to pull the tonsils a year ago, changed her position based on treating him for a year, the ENT, who is PANDAS knowledgeable, didn't want to pull them b/c of the PANDAS, but because of the chronic positive cultures. It was confusing.

 

Ultimately, we have one doctor in our pediatrician that we can talk to and trust implicitly. He's excellent about giving us ALL sides of a potential treatment/course of action, and is supportive of us - even if we don't follow his recommendation.

 

For us - as great as it is to have a PANDAS expert in our backyard (Dr. M), we've relied more on our pediatrician because of his accessibility and his willingness to listen and help us come to our own decisions with as much information as we can.

 

If you have anyone on your team who is open minded and willing to play that part, it might help. It's been our lifeline.

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I had a similar conversation with my kids' doctor a few weeks ago, on why Dr A's protocol works so well, yet when my Dr tries it with his patients, he doesn't see the same results. Same with Dr Xs and Dr Ys protocols. Yet my own Dr does protocol Z and has better results with it than his peers do. He feels that in a way, patients are self-selecting. The ones who see Dr A and do well never move on to DRs X or Y. Those who don't do well with Dr A move on and never get reported in the results that Dr A discusses in papers or conferences. These patients maybe get reported in Dr Ys success stories.

 

There's a reason I've left some doctors and stayed with others. Their approach, their personal styles, their areas of expertise - either helped and we stayed or they didn't and we moved on. So all the docs who feel tonsils should stay probably have sound reasons and a pool of patients to support their position and vice versa.

 

Unfortunately, until medicine is more individualized with genetic testing or protocols based on unique factors (e.g. only blood type A does well with one thing, only people with gut flora type 2 do well with another), you're left to learn what you can about various doctors and go with what resonates with you. It is in a way, doctor shopping. You do tend to see the docs that are going to prescribe what you're hoping for. All you can do is research as much as you can and then yes, go with your gut.

 

Like NMom, we all have to live with our mistakes (and there will be plenty). But at least they're my mistakes, not someone elses, and I have the power to make sure it's the best, most well researched, most sincere mistake I could have made at the time.

 

So well said, Laura! I 100% concur!

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