Will You Participate in a Straw Poll?

[MomWithOCDSon]

We have such a broad base of experience here on the forum, and I know some of you have been around a lot longer than I have! I thought it would be interesting and maybe even informative to take a very quick, elementary pulse of the basics among us.

 

We're only about 5 months into our PANDAS diagnosis, and we've thus far implemented only abx and supplements. We're currently working with our local doctor, a pediatrician who's known DS13 since he was 2, and she's been very open, curious and studious about PANDAS, even though it is relatively new to her.

 

Thanks for joining in!

[thereishope]

Son of a gun. Don't trust me in polls. I checked off my boxes and hit "see results". That's a null vote and you can't revote. I've done that before. Will I ever learn my lesson?

 

 

Diagnosed 1 1/2 years ago

Abx, steroid burst, natural supplements

Local docs

[MomWithOCDSon]

Son of a gun. Don't trust me in polls. I checked off my boxes and hit "see results". That's a null vote and you can't revote. I've done that before. Will I ever learn my lesson?

 

 

Diagnosed 1 1/2 years ago

Abx, steroid burst, natural supplements

Local docs

 

LOL! You crack me up! Thanks for "voting" with a post, anyway!

[Fixit]

Can i ask how you get a pandas DX?

 

I've been dealing with this since ds was 2 1/2-3 and i can't get anyone to stop rolling their eyes at me.

DS is 10

HIS TICS ALWAYS WENT AWAY COMPLETELY W/I 4 WEEKS OF STARTING ABX...FOR THE LAST 8 YEARS, UNTIL THIS ONSET APRIL 6, 2009

AND YES I AM SHOUTING AND CRYING AT THE SAME TIME, and i cant find the trigger, but as you know his igg myco p was 300 pts out of range...WHO WILL DX HIM!!!

We actually saw a doc the day before on 4/5/09 because he didn't feel good, with swollen glands

Can Dr K or T give him this DX????

 

Son Dx with ts but i think all ts/ocd is pit/pands and yes my hubby has 2 tics but that means to me that DH had/has pandas, as he still gets strep once a year(but hubbies is more mild than DS)... i think pand/pits is/are genetic!!!!!!

So just because father tics doesn't mean Ts that is just a disription of the manifistatoin...the genectic factor is the autoimmune conditon///and the severity as i am drowning in this..depends on duratoin or number of illnesses....(the number of hits to the body)

Hubby had seizure at 5 from either strawberries or pesticides...and i'm wating to see how bad his thryoid is and the probablity of lupus.

And as per the one of the papers from Buster...the more moderate/severe cases had less working Tcell if i got that right

 

Sorry to repeat and rant....how do i get DS DX with PANDAS/PITANDS

[MomWithOCDSon]

Can i ask how you get a pandas DX?

 

I've been dealing with this since ds was 2 1/2-3 and i can't get anyone to stop rolling their eyes at me.

DS is 10

HIS TICS ALWAYS WENT AWAY COMPLETELY W/I 4 WEEKS OF STARTING ABX...FOR THE LAST 8 YEARS, UNTIL THIS ONSET APRIL 6, 2009

AND YES I AM SHOUTING AND CRYING AT THE SAME TIME, and i cant find the trigger, but as you know his igg myco p was 300 pts out of range...WHO WILL DX HIM!!!

We actually saw a doc the day before on 4/5/09 because he didn't feel good, with swollen glands

Can Dr K or T give him this DX????

 

Son Dx with ts but i think all ts/ocd is pit/pands and yes my hubby has 2 tics but that means to me that DH had/has pandas, as he still gets strep once a year(but hubbies is more mild than DS)... i think pand/pits is/are genetic!!!!!!

So just because father tics doesn't mean Ts that is just a disription of the manifistatoin...the genectic factor is the autoimmune conditon///and the severity as i am drowning in this..depends on duratoin or number of illnesses....(the number of hits to the body)

Hubby had seizure at 5 from either strawberries or pesticides...and i'm wating to see how bad his thryoid is and the probablity of lupus.

And as per the one of the papers from Buster...the more moderate/severe cases had less working Tcell if i got that right

 

Sorry to repeat and rant....how do i get DS DX with PANDAS/PITANDS

Sorry, Fixit, I know how frustrating this can be.

 

That's one of the reasons I qualified the "diagnosed with PANDAS" with "(official or unofficial)," because I know many people here, myself included, have only self-diagnosed up to this point. Like you, if abx improves the behaviors, and/or if steroids improve the behaviors, then you might conclude that your kid likely has PANDAS. Then there's all the immune testing and CamK testing which, though I don't know that anyone (including Dr. T.) has identified these as "fully diagnostic" at this point, can support a PANDAS finding. We haven't done that testing yet, either.

 

If I were you, I would go see Dr. T. or Dr. K. I've got my mind on Dr. K., personally, if my DS13's condition should stop improving or deteriorate. It's one day at a time for us at this point. But it seems like you're at the point where you need to reach out for some more experienced help. Go for it!

[7upMom]

well, I put under one year for diagnosis timeline which is when we found out thats what he had, but they say he has prob had it since 2-3 y/o which would actually be 6-7 years. I went with the under a year, because of course we haven't been trying to treat pandas for 6-7 years since we didn't know that was what was going on.