Jump to content
ACN Latitudes Forums

This news story had me remembering and wondering.


Recommended Posts

I don't know, but let me tell ya, anyone of my kids under 18 years old and guess what?

I decide what medical treatment, you have to get my permission.

How can the parents not be told?

Unless they are still running 'tests' and actually not treating them with medicine (antibiotics.)

Link to post
Share on other sites
  • Replies 76
  • Created
  • Last Reply

Top Posters In This Topic

 

 

Actually, (I'm rambling now) I wonder if they have Sydenham's Chorea, and not PANDAS.

 

I love this site....made me look up Sydenham's Chorea, which had me refer to Wikipedia, which got me looking for PANDAS on Wikipedia, where I couldn't find a reference, in our context anyway.

 

Would it make sense for some of our brighter minds to get a Wikipedia reference created?

Link to post
Share on other sites

 

 

Actually, (I'm rambling now) I wonder if they have Sydenham's Chorea, and not PANDAS.

 

I love this site....made me look up Sydenham's Chorea, which had me refer to Wikipedia, which got me looking for PANDAS on Wikipedia, where I couldn't find a reference, in our context anyway.

 

Would it make sense for some of our brighter minds to get a Wikipedia reference created?

http://en.wikipedia.org/wiki/Pediatric_Autoimmune_Neuropsychiatric_Disorder_Associated_with_Streptococci

Link to post
Share on other sites

I don't know, but let me tell ya, anyone of my kids under 18 years old and guess what?

I decide what medical treatment, you have to get my permission.

How can the parents not be told?

Unless they are still running 'tests' and actually not treating them with medicine (antibiotics.)

 

If they're not just using HIPAA as a cover up (which they very well might be), the fact that they are citing HIPAA seems to imply it's something to do with sex/contraception(or possibly illicit drug use)etc. I suppose the HPV (gardasil) vaccine would fall along these lines, esp. if the girls got the vaccines without the knowledge of the parents. Those are the main times HIPAA is used re. teen privacy. Right?

 

I mean, have you ever heard a doc saying "I can't tell the parents b/c of HIPAA" if a 17 year old is diagnosed with diabetes or cancer or allergies??? ( That would just be crazy right?) HIPAA is used would be so teens can confidentially get birth control (or things along those lines) without having to tell their parents.

Edited by EAMom
Link to post
Share on other sites

 

 

Actually, (I'm rambling now) I wonder if they have Sydenham's Chorea, and not PANDAS.

 

I love this site....made me look up Sydenham's Chorea, which had me refer to Wikipedia, which got me looking for PANDAS on Wikipedia, where I couldn't find a reference, in our context anyway.

 

Would it make sense for some of our brighter minds to get a Wikipedia reference created?

 

The PANDAS wikipedia reference is controlled by a Pandas naysayer Nazi. It really emphasizes how "controversial" PANDAS is, citing lots of studies by Kurlan and Singer. We (PANDAS parents) have tried to change it, but it just wasn't worth the time/energy.

Edited by EAMom
Link to post
Share on other sites

Hi, everyone. PANDAS Network.org has been getting a lot of emails about the girls in LeRoy. Just posting that YES PANDAS Network.org has already gotten in contact with persons involved. We are getting them in contact with knowledgeable professionals whom will hopefully be able to help them get to the bottom of this and get them the help they need.

 

 

You say "persons involved." Does that mean the affected families. Sorr, if that is a dumb question, only b/c the "big wigs" out there are brushing off help. Dawn

Link to post
Share on other sites

It is possible to have Pandas and Sydenham's chorea, simultaneously. (My daughter was diagnosed with both simultaneously.)

This is a link for Sydenham's http://www.merckmanuals.com/professional/pediatrics/rheumatic_fever/rheumatic_fever.html

 

From what they were describing, it sounds a heck of lot like what my daughter had/has. (She has been symptom free since getting plasmapharesis in March and is still on zithro 2x/week.)

Link to post
Share on other sites

Well, for me, I find it hard to believe that 12ish girls all contracted Lyme around the same time and then all developed sudden onset tourette like symptoms from it at the same time also. Just not plausible in my mind......but,that is me....no surprises there. (and I, personally, will leave the subject on Lyme and this situation rest at that.)

 

Anway...thanks to some info. via the Pepsi Refresh site...I found the link. He talked about it at the end of a segment he was doing about eating processed meats.

 

http://video.foxnews.com/v/1389322627001/processed-meat-linked-to-pancreatic-cancer

 

 

Its not hard for me to believe that 12 girls in one high school all may have contracted lyme. While we all have had different triggers prior to "sudden onset", many of us found that our children had lyme underneath. So for us it appeared to be a strep induced illness but at the end of the day, there turned out to be much more going on prior to the final blow to the immune system. I am not suggesting that each of these girls just picked up lyme disease this year, but it is very possible the've had it for a while and all were recently exposed to the same trigger (vaccine, strep, or whatever). Most of us on the forum by now have realized that there were many layers of infections and multiple factors preceding the onset of this illness.

Link to post
Share on other sites

It is possible to have Pandas and Sydenham's chorea, simultaneously. (My daughter was diagnosed with both simultaneously.)

This is a link for Sydenham's http://www.merckmanuals.com/professional/pediatrics/rheumatic_fever/rheumatic_fever.html

 

From what they were describing, it sounds a heck of lot like what my daughter had/has. (She has been symptom free since getting plasmapharesis in March and is still on zithro 2x/week.)

 

 

I've understood those two things as simply slightly different sets of symptoms caused by the same thing.

Link to post
Share on other sites

I agree, but her cam kinase was clearly in the Pandas range, not the Sydenham's range.

It sure looked like Sydenham's though...........

She had about 2 years worth of documented strep infections.

 

Well, I wonder if there are variants of PANDAS or variants of SC that might not fit neatly under 1 diagnosis or the other, depending on the strain of strep or other things.

 

Technically, if these girls do have PANDAS/PANS (assuming this isn't their first episode) then this must be some sort of teen variant (onset after puberty).

 

Also, Cam Kinase can vary...my dd's was in the high PANDAS range when not in an exacerbation, but was in the high SC range (after H1N1) when in an exacerbation. We did have an echo, and her heart was okay. So, we are still in the PANDAS camp (the only thing that made us think SC was her high cam). Plus, our dd didn't have severe movement issues like these girls, she had OCD/anorexia.

Link to post
Share on other sites

Something at work today made me think of this.....two schools in my District have had rooms closed down for mold. This is the first year this has ever happened. Perhaps it is the incredible amount of rain we have had in the NorthEast this year....maybe the earth quake caused fractional cracks in foundations allowing mold and mildew to settle like never before. Two rooms in my building were closed, "cleaned and cleared" for use again. The woman who works in one of those rooms was hospitalized for respiratory complications today.

Chances are there is a certain set of circumstances that had to be in play for these girls, but I wonder if all this rain could have impacted their environment in a toxic way to a point where the load of several factors has had these sad results.

Just a thought.....

Prayers for your wellness.

Link to post
Share on other sites

I agree, but her cam kinase was clearly in the Pandas range, not the Sydenham's range.

It sure looked like Sydenham's though...........

She had about 2 years worth of documented strep infections.

 

Well, I wonder if there are variants of PANDAS or variants of SC that might not fit neatly under 1 diagnosis or the other, depending on the strain of strep or other things.

 

Technically, if these girls do have PANDAS/PANS (assuming this isn't their first episode) then this must be some sort of teen variant (onset after puberty).

 

Also, Cam Kinase can vary...my dd's was in the high PANDAS range when not in an exacerbation, but was in the high SC range (after H1N1) when in an exacerbation. We did have an echo, and her heart was okay. So, we are still in the PANDAS camp (the only thing that made us think SC was her high cam). Plus, our dd didn't have severe movement issues like these girls, she had OCD/anorexia.

Our 15yo dd, at the time (17 now) was dxed by Dr. K with the adolescent variant. Screaming titers, stomach pain, anxieties,fear of throwing up, mood lability. No mvt stuff, though. Dawn

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...