New International OCD Website

[TiredMom]

There's a new international OCD website that I just learned about through the OCDparenting yahoo group. I searched, and although they had section on related diseases, I couldn't find any info on PANDAS. I also noticed they give a certain number of grants each year for OCD research. I am going to contact the group, and see if they will add something on PANDAS, and tell them about Cunningham's work (my understanding is that she doesn't have official funding for the new year). Since there is power in numbers, I thought I'd list the website here in case anyone else would like to contact them for the same purpose.

Best wishes,

Peggy

 

 

http://www.ocfoundation.org/ index.aspx

[Ellen]

Great idea PeggySue! I will contact them too.

 

Ellen

 

There's a new international OCD website that I just learned about through the OCDparenting yahoo group. I searched, and although they had section on related diseases, I couldn't find any info on PANDAS. I also noticed they give a certain number of grants each year for OCD research. I am going to contact the group, and see if they will add something on PANDAS, and tell them about Cunningham's work (my understanding is that she doesn't have official funding for the new year). Since there is power in numbers, I thought I'd list the website here in case anyone else would like to contact them for the same purpose.

Best wishes,

Peggy

 

 

http://www.ocfoundation.org/ index.aspx

[thereishope]

Is the OCD website you are refering to the OCFoundation? If so, they have been around for awhile. They do have a small section on PANDAS, but you have to search it out. I contacted them awhile ago about PANDAS Network and they said they will refer to that site. I requested that they make PANDAS easier to find and visible and updated. I guess they haven't done that yet.

[thereishope]

Okay. I just viewed the link. It seems like it is run by the OCFoundation, but different. I am so angry. They told me months ago they were going to make PANDAS more visible by their organization and they have done the complete opposite. I just contacted them. Thanks for posting this.

[TiredMom]

"Is the OCD website you are refering to the OCFoundation? "

 

Hi Vicki, I did a fast search, and I think it is the same organization. I couldn't find anything on PANDAS, please let me know if I missed something (it wouldn't be the first time I did sent a detailed email to them covering a lot of ground, hopefully they will become more open to getting the word out on PANDAS.

[thereishope]

This is what I think happened. When I contacted them awhile ago, they told me they were going to revamp their website in the upcoming months and PANDAS would be easier to find. What I'm guessing is the revamping was making it "International OCFoundation". That's why your link, which says OCFoundation, is redirected the international site. So, they did revamp it as they said, but took off anything to do with PANDAS, whereas their original website had at least something you could eventually stumble on. This is the direct opposite of what I was told. So, anyway, my conatct to them was explaning what my response was from them and how they instead omitted PANDAS completely. I told them they have a resonsibility to these children and expect them to follow through with what they said. So, my email was different than what you intended this thread to be, but I am very angered right now.

[TiredMom]

"I am very angered right now."

 

I completely understand the anger. I'd love to know their story for removing PANDAS from their website.

 

This brings to mind a comment Dr. Latimer made to me on a phone consult last month... She said in all her years in medicine, treating a wide variety of conditions, she's never seen a group of parents like the PANDAS parents. Never. She said they are extremely well informed, are determined to cure their children, and DO NOT TAKE "NO" FOR AN ANSWER. What a great compliment you all received from a great lady... Let's see if we can change some minds.

Peggy

[Suzan]

This brings to mind a comment Dr. Latimer made to me on a phone consult last month... She said in all her years in medicine, treating a wide variety of conditions, she's never seen a group of parents like the PANDAS parents. Never. She said they are extremely well informed, are determined to cure their children, and DO NOT TAKE "NO" FOR AN ANSWER. What a great compliment you all received from a great lady... Let's see if we can change some minds.

Peggy

 

Thanks for sharing that. It's a great compliment. With everything we go through, we need to hear stuff like that!

 

susan

[LNN]

Peggy,

I saw the same thing last night when Louis posted the new link. The old OC Foundation site had a page devoted to PANDAS - didn't go into more than just an overview, but at least it informed parents of the disease. The new site has nothing on PANDAS and doesn't have a "search" box to query the word (which I found strange). Personally, I like the old site better.

 

I have a friend who's pretty involved with the organization and I emailed her this morning to see if she can ask about the sudden disappearance of the PANDAS information. My understanding is that OCF is fairly supportive of PANDAS, so I don't want to read too much into it without getting more of the story. I'll let you know what I hear back.

 

Laura

[Suzan]

I emailed the address that was referenced for the hoarding in OCD children study since my younger dd does this (she hoards food mostly but she doesn't want to let go of anything). When I referenced PANDAS, he said he used to refer people to Susan Swedo and said that she is researching with "experimental" meds like antibiotics But he did not offer any info in the study for PANDAS hoarding kids.

 

Susan

[EAMom]

"I am very angered right now."

 

This brings to mind a comment Dr. Latimer made to me on a phone consult last month... She said in all her years in medicine, treating a wide variety of conditions, she's never seen a group of parents like the PANDAS parents. Never. She said they are extremely well informed, are determined to cure their children, and DO NOT TAKE "NO" FOR AN ANSWER. What a great compliment you all received from a great lady... Let's see if we can change some minds.

Peggy

 

Sadly, there is probably another whole set of PANDAS parents who aren't well-informed and determined...but their kids are probably not getting appropriate treatment and making it to Dr. Latimer.

[thereishope]

Even with Beth Maloney, Saving Sammy, and Lauren's sneezing tic, most parents whose children have tics and/or OCD do not know what PANDAS is or ever heard of it. Within the past few weeks I have mentioned to some parents on OCD boards to always look into PANDAS when you see your child with OCD behavior. The response is always "What's PANDAS?".

 

If a largely respected group like OCFoundation acknowledges PANDAS and recognizes it can be a possibility in a child diagnosed with OCD, PANDAS may someday be more known in the offices of psychologists and psychiatrists. Also, the media often turns to the OCFoundation for OCD info. That is another way PANDAS can get more recognition. If you remember that Dateline special on children with OCD, they got their info from the OCFoundation. One of the girls that was followed in teh story is actually the OCFoundation spokesperson.

[TiredMom]

Laura,

That's great that you know someone connected with the organization who may know if eliminating references to PANDAS was a deliberate decision, or an oversight of some kind. Seems like odd timing to drop references to PANDAS when there's been so much activity in the media recently, like the sneezing girl, and Saving Sammy, the Boy Who Caught OCD, not to mention things like Columbia reproducing PANDAS in mice. Seems even more odd since they have a section specifically for related diseases that can appear like OCD, covering everything from Aspergers to TS.

Peggy

[thereishope]

I think we will all get the standard response "the website is still in the development stage and not info has been uploaded". So, even if they did omit on purpose, they can cover their butts. Let's keep an eye on that site!

[mama2alex]

Peggy, Thanks for bringing this to everyone's attention! And Laura, thanks for contacting your friend to find out what happened. I hope everyone on this site will send an email (whatever length you have time for) as the more emails they receive, the more urgent it will feel to include PANDAS info on their website. This would be a fantastic way to continue getting the word out about PANDAS.

 

I will send them an email asap.

 

Jennifer