Get Ready

[bws]

I am really sorry to have to post this, but have to get this off my chest.

 

I took my two younger kids to my pediatrician. This is a specialty pediatrician in the city where I only take my kids occasionally, I have another local one.

 

I had taken DD12 to see him about two years ago to look for help for all her issues. He recommended a neurologist, OT etc etc We did not get anywhere at all, only got an anxiety diagnosis, and immature handwriting diagnosis from OT. I was not satisfied, and told him so, but he did not see where he could help me.

 

SO -- today I told him the end of the story. That I found Pandas online, and DD fitted the bill perfectly and she is thankfully responding to abx. He told me he has had several Pandas patients, and he fully believes in it, but he would usually only treat it on a neurologist's recommendation. He had "Saving Sammy" on his bookshelf....

 

But he showed me a study that was recently published, or will be published shortly, of several prominent doctors who did a study on about 10,000 kids and after many pages they conclude that ---- PANDAS DOES NOT EXIST!! I told him that I have proof and know several people with kids with Pandas. He said "I believe in it, there are definitely kids who respond to abx...."

 

Point is, as soon as this goes public, kids will have a much harder time getting a proper diagnosis, and this just breaks my heart.

[MomWithOCDSon]

But he showed me a study that was recently published, or will be published shortly, of several prominent doctors who did a study on about 10,000 kids and after many pages they conclude that ---- PANDAS DOES NOT EXIST!! I told him that I have proof and know several people with kids with Pandas. He said "I believe in it, there are definitely kids who respond to abx...."

 

Point is, as soon as this goes public, kids will have a much harder time getting a proper diagnosis, and this just breaks my heart.

 

Oh, how I wish you had some more information on this "paper"! Any chance you can call this doctor and get the name/title and/or the authors?! Is it possible this was the last paper that Kurlan and company published? If so, it caused a little bump, but nothing as catastrophic as your current post might suggest.

[ibcdbwc]

If there is something like this coming out soon, it would be really great to know about it in advance. PANDAS (or PANS...) docs and more importantly parents could head it off at the pass. Would love to know the names of the "several prominent doctors."

[T_Mom]

10,000 ? hmmmm....that must have been some type of protocol to include that many subjects, and some type of funding to support it!

seems suspect to me, do post more info on this "paper" -- to substantiate.

[911RN]

But he showed me a study that was recently published, or will be published shortly, of several prominent doctors who did a study on about 10,000 kids and after many pages they conclude that ---- PANDAS DOES NOT EXIST!! I told him that I have proof and know several people with kids with Pandas. He said "I believe in it, there are definitely kids who respond to abx...."

 

Point is, as soon as this goes public, kids will have a much harder time getting a proper diagnosis, and this just breaks my heart.

 

Oh, how I wish you had some more information on this "paper"! Any chance you can call this doctor and get the name/title and/or the authors?! Is it possible this was the last paper that Kurlan and company published? If so, it caused a little bump, but nothing as catastrophic as your current post might suggest.

 

I wish the medical/research community would get it's act together! Have an article like one published in the OT journal then have this opposing view! Because there is no consensus in the medical community on how to diagnose and treat is why we have all this "controversy!" It's purely just frustrating and unfair to these children. This is their future and their lives....it should not be taken so lightly.

 

I have treated my son very conservatively yet I would likely be more aggressive if there was any research consensus on what the proper algorithm is to treat based on severity of child's symptoms. My child is not "institutional" with OCD/tics (although it IS there) but he has many of the other issues with writing, attention etc. If it was put across to me that IVIG, PEX was the gold standard measure I needed to do to absolutely resolve these issues - I would do it. However, as none of these procedures are without risks and since nobody can assure me this would be the right approach for THIS child- I choose to remain conservative in my approach. Do no harm approach yet may not be best for him in the long run?? Budding science is a PITA!!

[bws]

Sorry, I just gave a glance at the bundle of papers, while he was finishing up with my other kids. One of the doctors are his colleague here at NYU hospital in NY. (female doc)

 

I could try to ask him next time...