Update on neighbor

[Kiera]

Hi all,

I previously posted on a neighbor's 6yr old dd (Topic Title "Is this possible") with severe separation anxiety post mild sore throat and viral cold, wondering was it Pandas with just this one symptom and me looking through my Pandas lens'? Well, sad to say, her symptoms have progressed to very obvious intrusive thoughts from a whole range of things with a need to tell her Mom these thoughts she's having, literally every 5mins. She's fixated on certain people in various settings, stating she doesn't like them and they annoy her, also reverted to baby talk (only around Mom) and then a few other odd things. So Mom got a crash course on Pandas from me this week-end, she's convinced, so will get strep titers and see. Both she and I are still in disbelief, not only is she a neighbor, but a close friend, who know's my ds's story. How insane is it that this is even possible?? Then I keep thinking what one of those Pandas experts said (can't remember which one) that PANDAS isn't rare, just rarely diagnosed! So another Pandas journey begins, just don't know what to do if the titers are negative? It will make things more difficult. BTW, does anyone know if the kids for the IVIG clinical trial need to be severely dysfunctional, is it OK if they are already on antibiotics (I know steroids is a disqualifier), do the antibiotics have to be ineffective? Because I guess if they worked, who would risk IVIG? Just not sure what type of candidates they're looking for, for the trial?? All help is much appreciated. Thanks.

[butterflymom]

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Edited October 7, 2015 by tampicc

[norcalmom]

There's also a theory that certain strains of strep set it off - more so than others - just like the strep that used to result in Rheumatic Fever and lead to Rheumatic hearts and SC (that strain is no longer common in the US, but is in other countries)...its a theory. Also, if you live in a lyme endemic area or have any other environmental factor that could make you more at risk - the neigbors probably have that same exposure risk.

 

I would contact the trail to see if they would let her in. They want kids in first or second exacerbation, I don't know if severity is a factor. I know they are focusing more on OCD than tics. She is very fortunate to have you as a friend and neighbor!

[tpotter]

Hi all,

I previously posted on a neighbor's 6yr old dd (Topic Title "Is this possible") with severe separation anxiety post mild sore throat and viral cold, wondering was it Pandas with just this one symptom and me looking through my Pandas lens'? Well, sad to say, her symptoms have progressed to very obvious intrusive thoughts from a whole range of things with a need to tell her Mom these thoughts she's having, literally every 5mins. She's fixated on certain people in various settings, stating she doesn't like them and they annoy her, also reverted to baby talk (only around Mom) and then a few other odd things. So Mom got a crash course on Pandas from me this week-end, she's convinced, so will get strep titers and see. Both she and I are still in disbelief, not only is she a neighbor, but a close friend, who know's my ds's story. How insane is it that this is even possible?? Then I keep thinking what one of those Pandas experts said (can't remember which one) that PANDAS isn't rare, just rarely diagnosed! So another Pandas journey begins, just don't know what to do if the titers are negative? It will make things more difficult. BTW, does anyone know if the kids for the IVIG clinical trial need to be severely dysfunctional, is it OK if they are already on antibiotics (I know steroids is a disqualifier), do the antibiotics have to be ineffective? Because I guess if they worked, who would risk IVIG? Just not sure what type of candidates they're looking for, for the trial?? All help is much appreciated. Thanks.

 

 

It was Dr. B. who said that, and was quoted in a newspaper article. I don't know about the specific requirements for the IVIG study, but I would suggest that she go to the NIMH website, and pull it up, and call them immediately. The sooner she starts the better.

 

Good luck.