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How to discuss the "L" word


LNN

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I know I'm going to regret this post. But here goes...

 

In watching the passionate debate unfold this weekend around the "lyme issue", I've found it hard to not think about it even when away from the computer. While I see both sides, I end up feeling like everyone is losing. When people finally run out of things to say, the forum will go weirdly quiet. People whose kids might straddle more than strep will hesitate to ask a question and people with a foot in more than one world will hesitate to use the "L" word, even when it might be constructive.

 

So I guess I feel the need to suggest a truce and propose some ideas:

 

1. All members should remember that this is the Pandas forum and the members here have decided to explore Pandas as a possible explanation for their kids' issues and possible treatments. Anyone from a different world should speak with the appreciation that we are guests in a "foreign country" and act accordingly. Last winter, lyme was attacked on the lyme forum and it was met with equally upset parents. So this applies to all forums, not just Pandas.

 

2. In the recognition of PANS, I would personally like to see Pandas parents suggest, or tolerate the suggestion, that a child's issues may be infection-triggered but not necessarily be strep triggered, especially if there are outlier symptoms, non-rising titers, negative culture, etc. This has happened in the past and I hope it continues.

 

3. I think nearly everyone would agree that "testing" for Pandas, lyme and a myriad of other neuro diseases s**ks. But if we could point people to links that discuss the merits or flaws of a test, or a treatment, or a diagnosis, rather than attack a lab or doctor, it might keep conversations more productive. The lyme forum has a list of articles pinned that can help a parent interpret lyme bands. Maybe it's best to just refer parents to those links and let a parent decide what to make of lab results.

 

The other day, I wanted to suggest a certain thing that we found helpful in our journey, but because it came from the lyme world, I felt like I had to apologize in advance. Like "sorry - please don't think I'm suggesting lyme, but we found this worked well...." And I found it sad that I would have to apologize for what I was about to say. I try to keep what happens in lymeland in lymeland. But there are topics I wish I could share more with my old Pandas family - things that apply to general disease, therapies, supplements - but I don't always feel like I should post, because the whole topic has become toxic.

 

So without trying to re-fuel the fire, I just wanted to post to try to mend fences and find common ground. Worried Dad posted about my belief that if your child doesn't respond to the things that usually help for one disease, there may be more to the puzzle, more worth exploring beyond what's covered by a particular disease. I do hope this remains a place where it's ok to express that idea. Because I still have a lot to learn from other parents struggling with schools and attention deficits and sock seams. Even if my kids have the "L" word and who knows what else.

 

What's the best way to do this?

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Very well said, LLM.

 

Since this is a PANDAS/PITANDS forum, I would fully support and welcome discussions pertaining to ALL manner of potential behavioral triggers and treatments related thereto.

 

That being said, though, I think we need to honor and respect, at least to some extent, the titles of the individual forums. So while I truly want to hear about some new-found response to ADHD behaviors or emotional lability, etc. that a Lyme-treating family has found and feels may have validity for a PANDAS/PITANDS child, as well, I don't want to be told -- on the PANDAS/PITANDS Forum -- that a well-established PANDAS protocol is not a worthy consideration for my child because he/she may, or even most certainly does, have lyme.

 

By the same token, I wouldn't expect lyme-treating families participating on the Lyme Forum to welcome with open arms lyme-skeptical posts, and suggestions that their children don't, in fact, have lyme but rather strep or myco p, or any number of other conditions on that particular forum.

 

As you've indicated, it's a matter of respect. Respecting feelings, experiences, ideas and boundaries. And sometimes, that might mean sublimating one's own passionate position on the primary topic of diagnosis. Or simply dropping a note on the Lyme forum in a post you find relevant that says something like "There's a PANDAS forum post on a similar topic and here's a link," or vice versa on the PANDAS forum.

 

We're all seeking answers and support, and each of us who participates primarily in one forum knows that the others exist and that we are free to visit and participate there, as well. All with some sensitivity to those among us who consider any particular forum "Home" on these boards. -_-

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As parents of children who are very ill (some for over a decade and some more recently), I believe we all share a common passion to heal our children and, in doing so, leave no stone unturned. Many of us feel alone in a world where traditional medicine has left us with nothing more than an alphabet soup of diagnoses and acronyms but no helpful treatments. Physicians are learning from us as we push to find the underlying reasons for why our children are so sick, while we learn from one another as we discover what works and what does not work with our children. Challenging one another is healthy and how we can continue to break new ground. But we must do it with respect and appreciation for each other's differences and differing opinions. 

 

I float between the two forums because I have a child who has both PANDAS and Lyme, as well as a variety of other co-infections. I want to feel comfortable coming to either forum.

 

Let's remember why we are here and what we have gotten from one another. There is no doubt we are breaking new ground and leading the way for so many other children. We are dealing with a very complex condition -- nothing about it is simple and no one has all the answers. But one thing is clear...we need one another. We must continue to learn from one another, we must continue to heal our children, and we must continue to teach healthcare providers how to practice medicine with a more flexible, open mind so we can peel off those proverbial bandaids to get to the underlying causes. 

 

In the end, I think we all want the same thing...

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The other day, I wanted to suggest a certain thing that we found helpful in our journey, but because it came from the lyme world, I felt like I had to apologize in advance. Like "sorry - please don't think I'm suggesting lyme, but we found this worked well...." And I found it sad that I would have to apologize for what I was about to say. I try to keep what happens in lymeland in lymeland. But there are topics I wish I could share more with my old Pandas family - things that apply to general disease, therapies, supplements - but I don't always feel like I should post, because the whole topic has become toxic.

 

I am speaking very sincerely when I say that I wish you would post WHATEVER you think you want to share with your PANDAS family. Also, please DO NOT soften it with an apology either. You're doing us a favor by sharing information. I don't make it over to the Lyme forum much, so if there is something that could help PANDAS parents on there, I appreciate the information. The same holds true for the TS forum.

 

Your posts are ones that I go out of my way to read. You have a wonderful way of expressing how I feel most of the time. In this post, I couldn't agree more with your suggestions. However, I want to take it a step further and point out that the majority of the posts that deal with both Lyme and PANDAS are respectful. It's posting style and personality clashes...it was happening even before Lyme was suggested on this forum. Remember?

 

Anyway, I appreciate the time that you do take to post, and I really hope that no one gets scared off.

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I am speaking very sincerely when I say that I wish you would post WHATEVER you think you want to share with your PANDAS family. Also, please DO NOT soften it with an apology either. You're doing us a favor by sharing information. I don't make it over to the Lyme forum much, so if there is something that could help PANDAS parents on there, I appreciate the information. The same holds true for the TS forum.

 

Your posts are ones that I go out of my way to read. You have a wonderful way of expressing how I feel most of the time. In this post, I couldn't agree more with your suggestions. However, I want to take it a step further and point out that the majority of the posts that deal with both Lyme and PANDAS are respectful. It's posting style and personality clashes...it was happening even before Lyme was suggested on this forum. Remember?

 

Anyway, I appreciate the time that you do take to post, and I really hope that no one gets scared off.

 

Hear, hear! LLM, it's clear that you are sharing, rather than diagnosing or lobbying! We can all take lessons from your constructive tone. Have at it, and we'll endeavor to follow suit!

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"What's the best way to do this? "

 

For context, my son has been diagnosed with PANDAS and Lyme & coinfections. Frankly, I'm not sure we've found the answer yet.

 

What is useful are the experiences, sharing histories/symptoms, treatments tried, links to research and opinions (if not presented as gospel). I respect all. I pursue those that make sense to my wife, myself, my son, and our doctors. What I hope to offer others is simply letting them know where we've been, what we've tried, and the results.

 

Regarding the two forums, we started off with the PANDAS diagnosis and treatments before Lyme. If there is a question asked where we have experiences - I answer and try to remember to caveat my answers with my son's diagnosis then and now which includes Lyme for complete context.

 

What more can we do for each other.

 

bill

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Bill I couldnt agree more! My dd7 has been dx'd with TS,Pandas,and now Lyme and like you I still dont feel sure that we have "the answer" With all the different things possibly going on with dd I appreciate info/experiences/opinions on many different subjects. Its a shame that a couple of people here seem to get offended and launch personal attacks whenever they read something that rubs them the wrong way and now people are hesitant and apologetic about sharing.Personally I think most on here(even the Newbies) realizes(or soon will) that we cant follow all the advice we receive here. But it sure is nice to have such a vast array of experiences to try to learn from and I think just as important is the emotional support here.I think we should all ignore and not respond to these negative,personal attack posts and stop allowing them to hijack the original posters question.I mean does anyone think someone asking if anyone has tested - from Igenex wants to read 5 pages of debating and personal attacks? I know as I await my own WB results from Igenex I was also interested in RESPONSES TO THE QUESTION,not all the other stuff I read through to see the few posts actually relevant to the original post.

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