my mantra today "this is not the end, this is not the end...&quot

[saidie10]

:( :( my mantra of the moment "this is not the end, this is not the end, this is not the end....." DS7's Anti-DNase B came back at 314, down from 561 six weeks ago. we tested it because I saw a clear exacerbation (albeit not freaky bad but definitely different) in what I think was response to his brothers strep infection. i REALLY REALLY wanted his number to be elevated (ASO was 400 six weeks ago and 400 with this set so no change there, but Anti-DNase B went down) the nurse told me and i am still waiting for the neurologist to call. i am dreading this phone call because i think she will be basically like well that is it, is is not PANDAS.

 

i have to remember she is not a specialist when it comes to this and time and time again i have read that titers don't have to go up so..."this is not the end, this is not the end, this is not the end..."

[Fixit]

i am not a doc....but an explanation that's been posted is,,,that pit/pan is like asthamu...once you have asthma you always have it....once the attach starts your body can't stop it on its own...doc t

so to me...even if the numbers go down, you may have cleared the infection, but the body is still in overdrive....

or another is..you child is in a car that always teeter at the top of a hill ...you tapped on the gas peddle(anything can now be the thing that taps it), and the car starts rolling...problem is you have no brakes!!!

That one was Scott SMiths..

 

ANd this has been my concern with my ds...I KNOW!!!!!! he was sick again when it started..but now the trigger has changed...and maybe the trigger got cleard up and i'm just left with this asthmatic rolling car.....

 

(though now some may confirm what i say with ds new test results) but i got to love Doc K in he said to me it doesn't matter what your tests are..you gave me all the information oh and some of the moms i talked to on the phone supported me too

Edited May 10, 2010 by Fixit

[dcmom]

Titers ARE NOT a test for pandas. The only thing they indicate- AND ONLY IN 30% of cases- is a recent strep infection.

 

I don't allow titers to be done, most pandas docs are NOT hung up on titers.

 

You need to treat the symptoms. PANDAS is a CLINICAL DIAGNOSIS. If your child is having symptoms, they need treatment (abx, steroids, ivig, etc).

 

Once strep activates pandas, it becomes an autoimmune condition, and many kids will have an episode triggered by strep, illnesses OTHER than strep, exposure to strep, exposure to illnesses OTHER than strep, dental work/issues, allergies, vaccines, and basically anything that engages the child's immune system.

 

During healing, there will be blips due to exposure. If the exposure is prolonged, and the blip does not settle down, it is time to treat.

 

I would STRONGLY advise a pandas expert...

[Fixit]

you type stuff better than me

[Tenacity]

:( :( my mantra of the moment "this is not the end, this is not the end, this is not the end....." DS7's Anti-DNase B came back at 314, down from 561 six weeks ago. we tested it because I saw a clear exacerbation (albeit not freaky bad but definitely different) in what I think was response to his brothers strep infection. i REALLY REALLY wanted his number to be elevated (ASO was 400 six weeks ago and 400 with this set so no change there, but Anti-DNase B went down) the nurse told me and i am still waiting for the neurologist to call. i am dreading this phone call because i think she will be basically like well that is it, is is not PANDAS.

 

i have to remember she is not a specialist when it comes to this and time and time again i have read that titers don't have to go up so..."this is not the end, this is not the end, this is not the end..."

 

 

Fixit and dcmom are right. Changing ASO and Anti-DNase-B tests provide clues to the body's reaction to coming and going Strep infections. When paired up with coming and going PANDAS exacerbations, they indicate a possible association between Strep infection and PANDAS. However, a child can have high ASO and Anti-DNase-B titers and no PANDAS -- or, conversely, perfectly normal ASO and Anti-DNase B titers and severe PANDAS -- particularly if the child has been suffering from PANDAS for a long time. Strep (which causes the body to make anti-Strep antibodies) can set distinct autoimmune processess (involving anti-neuronal antibodies) in motion, but these autoimmune processes then take on a life independent of Strep, and other things (allergies, colds, vaccinations) may then prompt the autoimmune processes to wreak havoc in the brain.

 

Unfortunately, there seem to be lots of doctors out there -- even some doctors who claim to be PANDAS experts -- who don't understand this. If you have a child with PANDAS, and your doctor doesn't get this distinction and you are unable to enlighten him/her -- my advice is: MOVE ON!

[saidie10]

Oh I will be moving on! The Neurologist cares so much that she didn't even call me today with the results. I found out at 10:30 this morning from the Nurse the results and still no call from the Doctor. She knows how concerned I am and how much I wanted these results. I figures she would call and gloat to some degree that it had dropped. Well we will be dropping her!

 

:( :( my mantra of the moment "this is not the end, this is not the end, this is not the end....." DS7's Anti-DNase B came back at 314, down from 561 six weeks ago. we tested it because I saw a clear exacerbation (albeit not freaky bad but definitely different) in what I think was response to his brothers strep infection. i REALLY REALLY wanted his number to be elevated (ASO was 400 six weeks ago and 400 with this set so no change there, but Anti-DNase B went down) the nurse told me and i am still waiting for the neurologist to call. i am dreading this phone call because i think she will be basically like well that is it, is is not PANDAS.

 

i have to remember she is not a specialist when it comes to this and time and time again i have read that titers don't have to go up so..."this is not the end, this is not the end, this is not the end..."

 

 

Fixit and dcmom are right. Changing ASO and Anti-DNase-B tests provide clues to the body's reaction to coming and going Strep infections. When paired up with coming and going PANDAS exacerbations, they indicate a possible association between Strep infection and PANDAS. However, a child can have high ASO and Anti-DNase-B titers and no PANDAS -- or, conversely, perfectly normal ASO and Anti-DNase B titers and severe PANDAS -- particularly if the child has been suffering from PANDAS for a long time. Strep (which causes the body to make anti-Strep antibodies) can set distinct autoimmune processess (involving anti-neuronal antibodies) in motion, but these autoimmune processes then take on a life independent of Strep, and other things (allergies, colds, vaccinations) may then prompt the autoimmune processes to wreak havoc in the brain.

 

Unfortunately, there seem to be lots of doctors out there -- even some doctors who claim to be PANDAS experts -- who don't understand this. If you have a child with PANDAS, and your doctor doesn't get this distinction and you are unable to enlighten him/her -- my advice is: MOVE ON!