advice needed regarding potential undiagnosed PANDAS in son who is now

[momkat]

I am new to this site and am looking for advice regarding my 22 year old son who I believe had PANDAS as a child and was never diagnosed. He woul have met a great deal of the the criteria and has some residual issues. Looking for direction.....or someone with a similar circumstance.

[Fixit]

I am new to this site and am looking for advice regarding my 22 year old son who I believe had PANDAS as a child and was never diagnosed. He woul have met a great deal of the the criteria and has some residual issues. Looking for direction.....or someone with a similar circumstance.

 

sorry you are here...

 

there is a mom in another country trying to get ivig for her 19 year old daughter....

and someone just posted they did ivig for their 18-19 old going to college and things look good...

 

my child is young...

i am not sure if the

onset was as child, that any titers or camk would come up...

for kids as they get older it seems that once it's triggered, you may clean up the infection/cause but the body remains in overdrive...so now the quest is to get the body to slow down....

 

basic starter test list...

 

lymes igenex

aso

antDNAse

mycoplamsa pneuamiae igg/igm

and on personal note,,,since i never got my ds to clear completely...his allergies sent him into his worst episode ever this last spring...and we have just recently started to see some recovery...long road

 

maybe some others will come in with some thoughts

 

PS i believe my dh has pandas and tics less on abx(stiil gets strep1-3x a year)....he has never been on long enough...ie 6months or better, is what i think would just maybe put a real dent in it

pss..forgot dh has high/above normal antidnase...could be from constant infections

Edited August 25, 2010 by Fixit

[momkat]

I am new to this site and am looking for advice regarding my 22 year old son who I believe had PANDAS as a child and was never diagnosed. He woul have met a great deal of the the criteria and has some residual issues. Looking for direction.....or someone with a similar circumstance.

 

sorry you are here...

 

there is a mom in another country trying to get ivig for her 19 year old daughter....

and someone just posted they did ivig for their 18-19 old going to college and things look good...

 

my child is young...

i am not sure if the

onset was as child, that any titers or camk would come up...

for kids as they get older it seems that once it's triggered, you may clean up the infection/cause but the body remains in overdrive...so now the quest is to get the body to slow down....

 

basic starter test list...

 

lymes igenex

aso

antDNAse

mycoplamsa pneuamiae igg/igm

and on personal note,,,since i never got my ds to clear completely...his allergies sent him into his worst episode ever this last spring...and we have just recently started to see some recovery...long road

 

maybe some others will come in with some thoughts

 

PS i believe my dh has pandas and tics less on abx(stiil gets strep1-3x a year)....he has never been on long enough...ie 6months or better, is what i think would just maybe put a real dent in it

pss..forgot dh has high/above normal antidnase...could be from constant infections

[emmalily]

Hi Momkat,

I'm 19 with PANDAS and currently just treating with antibiotics. Feel free to PM with any questions.

 

emmalily

[EAMom]

You might contact Dr. K. (Chicago) as he has some experience with adolescents/teens with PANDAS.

 

Where do you live? Maybe someone can rec. a doc.

 

Also, does anyone remember the name of the older teenager with PANDAS...she had terribly infected tonsils? Removal really helped.

[thereishope]

Was it Alyssa?

 

 

 

Also, does anyone remember the name of the older teenager with PANDAS...she had terribly infected tonsils? Removal really helped.

[EAMom]

I don't think so.

[EAMom]

I am new to this site and am looking for advice regarding my 22 year old son who I believe had PANDAS as a child and was never diagnosed. He woul have met a great deal of the the criteria and has some residual issues. Looking for direction.....or someone with a similar circumstance.

 

Dr. Bouboulis would be good too. He seems pretty good at looking at the whole picture.

[momkat]

Hi Momkat,

I'm 19 with PANDAS and currently just treating with antibiotics. Feel free to PM with any questions.

 

emmalily

 

Thank you for your reply, emmalily. Were you diagnosed as a child or later on? I don't even know if I could convince my son to look into this, at this point. His issues that remain are more neurological-bits of compulsive behavior, anxiety, social phoboa, etc., etc. Thanks for any advice you might have.

[momkat]

I am new to this site and am looking for advice regarding my 22 year old son who I believe had PANDAS as a child and was never diagnosed. He woul have met a great deal of the the criteria and has some residual issues. Looking for direction.....or someone with a similar circumstance.

 

sorry you are here...

 

there is a mom in another country trying to get ivig for her 19 year old daughter....

and someone just posted they did ivig for their 18-19 old going to college and things look good...

 

my child is young...

i am not sure if the

onset was as child, that any titers or camk would come up...

for kids as they get older it seems that once it's triggered, you may clean up the infection/cause but the body remains in overdrive...so now the quest is to get the body to slow down....

 

basic starter test list...

 

lymes igenex

aso

antDNAse

mycoplamsa pneuamiae igg/igm

and on personal note,,,since i never got my ds to clear completely...his allergies sent him into his worst episode ever this last spring...and we have just recently started to see some recovery...long road

 

maybe some others will come in with some thoughts

 

PS i believe my dh has pandas and tics less on abx(stiil gets strep1-3x a year)....he has never been on long enough...ie 6months or better, is what i think would just maybe put a real dent in it

pss..forgot dh has high/above normal antidnase...could be from constant infections

 

Thanks for your reply. I am struggling to get a handle on the terms and acronyms, but am learning.

[emmalily]

Hi Momkat,

I'm 19 with PANDAS and currently just treating with antibiotics. Feel free to PM with any questions.

 

emmalily

 

Thank you for your reply, emmalily. Were you diagnosed as a child or later on? I don't even know if I could convince my son to look into this, at this point. His issues that remain are more neurological-bits of compulsive behavior, anxiety, social phoboa, etc., etc. Thanks for any advice you might have.

 

Hi, I was actually diagnosed by Dr. Kovacevic this past December. He got me started with antibiotics and then got me set up with doctors closer to home. If you/your son have the time/means to look into this, it's definitely worth it. At the very least, getting the blood draws suggested above might be worth your time just get an idea of whether you want to go forward. I've have major improvements in quality of live regarding anxiety and OCD. I went from being very much non-fuctioning, just sitting at home, having anxiety attacks on my couch to now being able to go out on my own. I'm definitely not 100% yet, but so much better off than before.

Edited August 26, 2010 by emmalily