Siblings

[dut]

Worried Dad.. I actually meant was dcmom's dd covered in case the immune suppression of the steroids let an underlying infetion flare and make things worse but yes, I had heard from Dianna Pohlman originally, I believe (forgive me, if I'm worng on that one, Dianna) and then from Dr. T that abx and steroids alone may be enough for some kids if they're immune systems haven't ramped up too far.

 

For those that have been too "stimulated" additional immune suppression may be necessary eg IVIG PEX. And for others maybe just abx alone will be enough.. get rid of the trigger and keep it away and their system can regulate again. I got the impression from Dr T that if the child seems not to be having episodes in response to things other than strep then that may be a good sign that the system hasn't ramped and that less intervention may be necessary. He also said that for some kids, especially those low end ones, that they may be able to come off abx earlier and that their system may have reset, sort of, and they may no longer have the inappropriate response to infections.

 

Hope I got that right and didn't misquote - my rider is that, that is all subject to my memory :-)

[sf_mom]

Yes, Worried Dad is correct and I just spoke with Dr. K about adult variant being easier to treat with just antibiotics. Its basically because the immune system is stronger and able to fight off the infection better. He thinks the infection resides mostly in the gut. I would perhaps try a HIGH dose antibiotic prior to anything more aggressive then IVIG or PEX to see if it clears.

 

Based on our experience, I agree ALL family members need to be checked.

[smartyjones]

He thinks the infection resides mostly in the gut.

 

do you mean the strep infection? do you mean just in an adolescent or for any one with pandas?

[sf_mom]

He thinks the infection resides mostly in the gut.

 

do you mean the strep infection? do you mean just in an adolescent or for any one with pandas?

 

Yes strep.... he said strep could be any where but likes to harbor in the gut.

 

-Wendy

[faith]

He thinks the infection resides mostly in the gut.

 

do you mean the strep infection? do you mean just in an adolescent or for any one with pandas?

 

Yes strep.... he said strep could be any where but likes to harbor in the gut.

 

-Wendy

 

 

but would you have to have symptoms to suggest that?

[dut]

SF Mom - does Dr K have any tests that you know of to detect strep in the gut. We often have nausea and stomach ache at flare times and even some quick vomiting epsiodes. I'd love to know if it's in there. We have never shown a rise in ASO or AntiDNaseB.

 

Thanks..

[dcmom]

Thanks Wendy, Unfortunately my dd who has all symptoms of adolescent variant (plus more ocd lately) is only 9, age 8 at onset.....may not totally apply to her, but I will keep my fingers crossed...

[sf_mom]

DCMom: Definitely keep your fingers crossed and attempt a higher dose.... you know the routine if it doesn't help.

 

In answer to other questions.... they are trying to devise a test that would look for a toxin in the gut.

 

Faith: Yes the symptoms would be PANDAS in younger children or the variant in older. I think the basic determination between the two is state of immune system and if it (cross reactive antibodies) crossed over the blood brain barrier.

 

-Wendy