Need some perspective, should I remove this post?

[momtocole1]

I just received a phone call from a family member that was asking questions about the immuno doc that I saw at UC Irvine. This is my brother-in-law, he is a very bright and informed person. He has his Phd from UC Berkely in Bio Chemistry.

 

He was concerned that when he did a google search on Dr. Gupta and PANDAS and IVIG, my post from this forum came up. He felt that it was not appropriate for me to be saying bad things about this doctor on this forum.

 

I told him that that is what this forum is for, a place for us parents to vent, openly about our struggles, our frustrations.

I also said that I was so upset with this doctor that not only did I put it on the forum that I thought about contacting a news reporter to put it on the news. I actually was so upset after I saw him, that I thought about that.

 

Here is a doctor that is in the next town over that is willing to do an IVIG, but won't use the Dr. K dose or make any attempt to get it covered by insurance and will not contact Dr. Lattimer, Dr. K or anyone.

 

I would never have really gone to a reporter, I was just emotional and I'm worn out.

 

So, my question, isn't this forum the only place where we can be candid and not worry about backlash.

 

My brother-in-law felt that if I ever needed this doctor again that I could not go back because of writing this. He said that it could only hurt me and hurt my son and it would not help me in any way to write this on the forum.

 

It does not help that my brother-in-law, went to this UC Irvine, so I think my post felt like punch to the academic world there.

 

Please be honest, I need to know if I made a mistake her. Maybe I have lost my perspective and should be more careful and not use any doctors names if it is derogatory. My Brother-in-law thought that if another doctor googles my name, that they could find this forum and then they would not help us.

 

Am I paranoid? I am angry and I know that I have some pretty strong reactions lately, but I feel this is the place to vent them.

 

Please share your thoughts...

 

Thank you...

[pixiesmommy]

It is complicated and my gut instinct is to leave the post and if a doctor is a jerk then he deserves what he gets.... BUT I know from personal experience that he may have a point in that if you give another doctor "problems" then they may reject to help you in the future. How closely associated is your name with your username? And how often do doctors really google around to see if they are treating a "problem patient" I wonder. Probably not often. ((shrug))

[EAMom]

IMO you should absolutely keep it. It was your truthful experience of what happened to you. Posts about honest personal experiences with docs are a key part of this forum. Just as it's helpful to read posts about what docs are helpful, will listen, will read the research/contact others, are open to long-term abs, are open to helping kids get IVIG/pex....it's also beneficial to know what docs were not helpful (and why....do they not "believe in PANDAS" or do they not understand what treatments are effective?) so already exhausted PANDAS parents don't waste their time/money/energy looking for help where there is none.

[thereishope]

It's tricky, isn't it. I've posted things on various groups and forums just to then feel like it could come back to kick me in the butt. I'd say leave it up.

 

I also wonder why I used my name as my user name. That wasn't very smart of me when I really think about it. Now I can't deny it's me:)

[peglem]

I try to be careful not to give the doctor's name publicly- just call them by their specialty, and if somebody wants to know a name, use PM. That is just my preference tho, and I don't think it was inappropriate for you to vent on this forum.

[sww817]

I am always thankful to have any information on doctors, good or bad. I think it is helpful to parents to know if someone is unwilling to help and / or not up to date on treatments. It is part of the benefit of the board. You might not want to be too critical (not sure what you said) but the facts are helpful to us all. This journey is hard enough without hitting roadblocks. So if someone can help guide us, I think it is great!

[faith]

I doubt that particular doc would google his name, but I wil tell you that a doctor did tell me he does that out of curiosity to see what people say about him, so ya never know.

 

How about a compromise? leave it up for a few weeks, by that time most of us here will have read those posts and that thread will be a few pages back by then, so it will just be out there for lurkers or members looking for specific info during searches. So you could either just remove the docs name and hospital name and replace it with Dr. G. and University of X ... OR...you can delete the posts that are derogatory and place an 'edit' it to say 'please feel free to pm me for any additional info'............

 

 

Faith

[matis_mom]

I think you should leave it up, you were just sharing with the forum users (other parents) what your experience was. You did not make anything up, or judge the Dr. without a reason. Maybe you could go back and edit any remarks you feel were more inspired by emotions than by actual facts, but from what I recall your original post on this was rather factual, as in "he said this, I replied that"

 

Anyway, if I understand correctly this forum is for families of children with PANDAS to share information and network in order to be able to help the children get better. It would be helpful for a parent to know what to expect from a specific doctor.

 

And yes, maybe some of us should choose different screen names...

[ajcire]

Is there a way to change usernames? I thought of that right after I made mine up... that I wished I had picked something much different.

[faith]

no changing names, I'll get confused!..... ..........

[ajcire]

aww come on, could be fun. Name that person. But really.. is there a way?

 

no changing names, I'll get confused!..... ..........

[matis_mom]

I think you should leave it up, you were just sharing with the forum users (other parents) what your experience was. You did not make anything up, or judge the Dr. without a reason. Maybe you could go back and edit any remarks you feel were more inspired by emotions than by actual facts, but from what I recall your original post on this was rather factual, as in "he said this, I replied that"

 

Anyway, if I understand correctly this forum is for families of children with PANDAS to share information and network in order to be able to help the children get better. It would be helpful for a parent to know what to expect from a specific doctor.

 

And yes, maybe some of us should choose different screen names...

[coco]

I think you should leave your post "as is" -- is it from the heart and your truthful experience. I value that so much, and honesty on this forum is gold. How else are we going to sort out the boobs from the keepers? Speak without fear, I applaud you!!

 

coco

[EAMom]

I'm quite sure there is way to change your screen name...b/c if your go under someone's profile, then hit "options" one of the choices is "display members name history" where you can go an see what other names someone has gone by.

[MichaelTampa]

What? You don't think my name is secret enough? LOL On the one hand, perhaps the Michael and Tampa in the name are a bit of a give-away. On the other hand, I haven't run across anyone, ever, who has had a similar symptom profile as mine, or who has had such a patient, when you consider the adulthood and the severity of the fluorescent and wireless and perfume issues. That part shows, maybe, you can pick whatever name you want, but the discussion identifies you as well.

 

Anyway, selfishly, I'm with faith in terms of that being too confusing!

 

Michael in Tampa, Florida (but willing to visit doctors anywhere if necessary and practical--look out, I'm coming!)