Other PANDAS forums?

[Kayanne]

I am just curious if any of you participate in other PANDAS forums.

 

If so, could you pm me the links?...I am curious to check them out--I really don't know what I am thinking...I already spend so much time here....but...ya know an obsession is an obsession!

 

I'm not sure if actually posting other forums is allowed...so it would be great if you could pm them to me.

 

Thanks in advance!!!

 

~Karen

[thereishope]

I have found a couple other forums, but they are not active. You may see a post once every 6 months. As for the other ones I know of, I think they are mostly the same people on here. I think once they find this one, they stick with it.

[MomWithOCDSon]

I know that Dr. T. has one, and then there are the Facebook groups, Lynn Johnson's foundation's forum, etc. But like you guys, my time and energy for this stuff is limited . . . on some days more so than others (frequently, it's my favorite form of procrastination at work ), so I've decided to focus on one venue: this one. It's so very active, with lots of knowledgable participation. Why divide the great energy?

 

Frankly, that's been one concern of mine as I've seen folks strike out for other pastures . . . that the wellspring of knowledge and experience here would become diluted as folks got more involved elsewhere and less involved here, as a result. I am very happy to have noted that, at least thus far, that hasn't come to pass!

 

I feel like the old, empty-nester Mom, begging her kids to get jobs that let them stick closer to home! PLEASE don't go!

[EAMom]

What a coincidence...I happened to come across this post (at an OCD support group) http://www.supportgroups.com/discussions/s...recommendations when I was searching for something else. It just screamed PANDAS so I had to join to try to re-direct the parent over here.

 

I don't think the links I posted on that site showed up right though....

Edited May 5, 2010 by EAMom

[laurenjohnsonsmom]

momwithocdson,

 

Sorry, but PANDAS Resource Network dosen't have forum but our website is being redesigned and updated this week and we will be linking to this forum, soon!

 

Lynn

[MomWithOCDSon]

momwithocdson,

 

Sorry, but PANDAS Resource Network dosen't have forum but our website is being redesigned and updated this week and we will be linking to this forum, soon!

 

Lynn

Glad to hear it!

[Stephanie2]

Well, my kids each had issues along the autistic spectrum so I started out on many of the yahoo autism groups (the ones dealing with biomedical interventions). there is a lot of pandas being discussed b/c i think pandas is one of the things that pushes the kids onto the spectrum to begin with! I believe that when my 5 year old is in pandas he is like an asberger kid.

 

A couple that I like are titled: mb12valtrex and abmd. you can search for them on yahoo.

 

Stephanie

[Kayanne]

I know that Dr. T. has one, and then there are the Facebook groups, Lynn Johnson's foundation's forum, etc. But like you guys, my time and energy for this stuff is limited . . . on some days more so than others (frequently, it's my favorite form of procrastination at work ), so I've decided to focus on one venue: this one. It's so very active, with lots of knowledgable participation. Why divide the great energy?

 

Frankly, that's been one concern of mine as I've seen folks strike out for other pastures . . . that the wellspring of knowledge and experience here would become diluted as folks got more involved elsewhere and less involved here, as a result. I am very happy to have noted that, at least thus far, that hasn't come to pass!

 

I feel like the old, empty-nester Mom, begging her kids to get jobs that let them stick closer to home! PLEASE don't go!

Thanks for all you replies!

 

Oh...I have NO intention of leaving this forum....I was just curious as to what other forums were out on the web, and if they are as informative and helpful as this one.

 

I feel truly blessed that I was able to find this forum, and as I have said before, EAMom and Diana are directly responsible for my getting in touch with Dr. Latimer so quickly last year.

 

May 1, 2009 is when my DH and I met with our DD's pediatrician, and it was the first time I heard of the concept of antibodies from strep possilbly causing my daughter's complete behavior shift...I googled so many times, and kept only coming up with the NIH website and e-pandas.com...and I just NEEDED more information...I found this forum when I googled "strep infection and short term memory loss". It was the day after we hit a roadblock at CHOP. This forum has been a tremedous help for my sanity!

 

Leaving this forum would be like cutting off ties with my family!!!