For those who have done immune work-ups

[P_Mom]

What was the total IGA for your child? And, if normal, have you done subsequent testing?

 

I ask because when PANDAS first began, well about 6 months into it, my boys immune systems were checked......they had upper ranges of ALL immunoglobulin levels.

 

3 years into PANDAS, their levels have dropped, my older son, pretty significantly. Going from IGG of almost 1000 to 580. IGA of well over 100 to 64, the absolute lowest number of the normal range. My sons immunologist is tracking him every 6 months.......if it keeps dropping.....????? My younger son has also dropped in numbers, although not as significant as my older son. Could this be what PANDAS does over time? Even with the drop, they are still doing very well as far as PANDAS symptoms go....but, if they start to get sick more often because of this decrease? Could that explain why sometimes TS or PANDAS worsens over time??? And then the immune "rights itself" (per Cunningham) in late adolence....hence the improvement??

 

 

I was reading that many kids with TS have lower amounts of IGA in their serum. Since I believe TS and PANDAS are very closely related....I wonder if the same holds true for PANDAS? Both my boys have very low, but still in normal range IGA.....which is consistent with what they find in TS. Also, I was reading that IGA is the class of immunoglobulins chiefly responsible of keeping the mucosal areas of the body free from infection. (sinuses, throat, even skin , etc) So, low IGA could set up kids for problems with strep, sinus trouble, impetigo, etc. No?

 

Oh, if you have done IVIG....I believe it would mess up results.

Edited November 13, 2010 by P.Mom

[JAG10]

Hey Kelly,

 

I just got dd's labs back.

 

Total IgA

 

Feb 2010- 64 bottom of range

May 2010-IVIG

Nov 2010-46 now low

 

Total IgM

 

Feb 2010- 798 Low

Nov 2010- 722 Low

 

She hasn't had any signs of tics in a year, tics were never a big issue for her, more OCD and mostly ADD/cognitive symptoms.

 

(I would have thought IVIG, even 6 months ago, would have messed it up in the other direction, no )

Edited November 13, 2010 by JAG10

[KeithandElizabeth]

Hi Kelly:

 

I know that your sons do not have elevated strep titers and they have negative lyme results, but I am wondering if they have elevated mycoplasma levels?

 

My daughters IGG levels dropped significantly last year and our doctor thought it was from her body fighting a chronic infection. I have not checked her levels since we finished her antibiotic treatments, but I plan to in 6 months. Our doctor also said that it takes a good 4 months for the immune system to regroup after fighting the infections.

 

Elizabeth

[P_Mom]

Jill....TS includes the whole range of tics, OCD, moodiness, rages , etc.....so, I wasn't referencing to just tics when I mentinoed TS. (I know you know that:)What do you and the doc make of her labs? Are her IGG's normal/normal low? Anyone else got some lab numbers?

Yes, I would have thought IVIG would have changed it to the other direction..but, likely that is only with monthly??

 

Elizabeth...they're mycoplasma tests were negative. Older son definitely negative for IGG and IGM (he is the one with the biggest drop in immunoglobulins.....showed nothing for mycoplasma).....younger son also negative , for sure IGG, but, IGM was still negative but only 100 or so points below. I think 770 and less was negative and his was 600 something.

Also, I can't say that my boys never had elevated strep titers, because they did after first onset PANDAS...although they have since always been low. They never had a high DNAaseB, but, their ASO did rise after the strep that started it all....however not really high (that we know of). We did not test my older son until 6 months after initial onset....his ASO was at that time 185 (his normal is around 80) so, who knows what it was when in exacerbation. Latimer guesses much higher.

My younger son was at 103, still not really high but his normal is 23...so, it did rise. (this was 3 plus months after strep....so, again, it is thought to have been higher at onset)

 

That is weird that doc said IGG levels dropped because of fighting persistent infection...ours said it should rise with persistent infection! Could this get any crazier! Oh, what to believe, what to believe......

 

Okay...just goggled. IGG should rise in chronic infection. Maybe that is why my boys were elevated shortly after PANDAS started...because of the strep. Maybe now that the infection is gone...their IGG is dropping???

Edited November 13, 2010 by P.Mom

[JAG10]

Jill....TS includes the whole range of tics, OCD, moodiness, rages , etc.....so, I wasn't referencing to just tics when I mentinoed TS. (I know you know that:)What do you and the doc make of her labs? Are her IGG's normal/normal low? Anyone else got some lab numbers?

Yes, I would have thought IVIG would have changed it to the other direction..but, likely that is only with monthly??

 

Elizabeth...they're mycoplasma tests were negative. Older son definitely negative for IGG and IGM (he is the one with the biggest drop in immunoglobulins.....showed nothing for mycoplasma).....younger son also negative , for sure IGG, but, IGM was still negative but only 100 or so points below. I think 770 and less was negative and his was 600 something.

 

That is weird that doc said IGG levels dropped because of fighting persistent infection...ours said it should rise with persistent infection! Could this get any crazier! Oh, what to believe, what to believe......

 

What to believe is a good question!

 

We've never been concerned about TS, but I know that isn't what you're asking.

 

I think dd's immune system is dysfunctional. To me, the question is.....Is the immune system dysfunctional because it is fighting a persistent, covert infection or is it dysfunctional because it thinks it is fighting an infection it has known before but it is too dysfunctional to know it's no longer there? But my dd is not completely or nearly asymptomatic, she still reacts with backslides that have kept her around 75%. I don't know what those numbers mean for your boys who are doing so great.

 

Just read your edit..... so hard to figure out! If you don't have a child who swabs or cultures positive...how to you know? I mean, ASO, DNAse B, Myco-P.....they're only suppose to rise in response to their specific infection, but what if that isn't true? How do you know for sure it isn't a dysfunctional immune system sending out EVERY and ALL the wrong soldiers each time it detects anything it perceives as in the same neighborhood of "foreign"?

Edited November 13, 2010 by JAG10

[Fixit]

What was the total IGA for your child? And, if normal, have you done subsequent testing?

 

I ask because when PANDAS first began, well about 6 months into it, my boys immune systems were checked......they had upper ranges of ALL immunoglobulin levels.

 

3 years into PANDAS, their levels have dropped, my older son, pretty significantly. Going from IGG of almost 1000 to 580. IGA of well over 100 to 64, the absolute lowest number of the normal range. My sons immunologist is tracking him every 6 months.......if it keeps dropping.....????? My younger son has also dropped in numbers, although not as significant as my older son. Could this be what PANDAS does over time? Even with the drop, they are still doing very well as far as PANDAS symptoms go....but, if they start to get sick more often because of this decrease? Could that explain why sometimes TS or PANDAS worsens over time??? And then the immune "rights itself" (per Cunningham) in late adolence....hence the improvement??

 

 

I was reading that many kids with TS have lower amounts of IGA in their serum. Since I believe TS and PANDAS are very closely related....I wonder if the same holds true for PANDAS? Both my boys have very low, but still in normal range IGA.....which is consistent with what they find in TS. Also, I was reading that IGA is the class of immunoglobulins chiefly responsible of keeping the mucosal areas of the body free from infection. (sinuses, throat, even skin , etc) So, low IGA could set up kids for problems with strep, sinus trouble, impetigo, etc. No?

 

Oh, if you have done IVIG....I believe it would mess up results.

 

Well, that theory makes sense to me as it follows the trend of time of onset, worsening, bettering over course of life....

[P_Mom]

Jill...

 

Don't know..good question. My boys both did SWAB (believe it or not) positive for strep right before this all started. They are, I believe, truely "classic PANDAS" by definition of PANDAS so far.

And I do believe it is all related to a dysfunctional immune system....just what exactly???

 

Fixit......how are you guys doing post T&A?

Edited November 13, 2010 by P.Mom

[Fixit]

Jill...

 

Don't know..good question. My boys both did SWAB (believe it or not) positive for strep right before this all started. They are, I believe, truely "classic PANDAS" by definition of PANDAS so far.

And I do believe it is all related to a dysfunctional immune system....just what exactly???

 

Fixit......how are you guys doing post T&A?

 

 

Well...i thought we nailed it for while ..we found the last straw...maybe it was the clyndamycin...i got an extra 10 days..did great when it was high...worse low...better when high...worse as it went back down..but can't stay on that forever

Then more allergies kicked in..ssoooo....we started singulare....had too try...this kid is super allergic to anything outside...dust mites, cats, dogs...got that in his system for about 8 days to set him up for allergy shots....

i know..i know....but ds pandas are all physical...so i think ...even the trich...i have to try...

and doc b says he is so allergic..allergy shot are usually a 4 stage process...he added a 5th for ds and maybe becasue he is a panda kid too...so if we continue...we will have 2 more months at weekly doses than your standard allergic person...

 

more to tell on that too...at one point..i thought the allergy shots healed him....

then down hill....over the course of several weeks...

then this week ds ramps again...we go to ent for follow up...ask if he has infection ear, nose or throat...he says no

..and sure enough on thurs ds7 comes home crying...take to doc and he has strep....

 

I AM SO TIRED!!!! Calgon take me away!!!!!

[P_Mom]

"Some people are born with low or absent levels of IgA antibodies, which increases their chances of developing an autoimmune disease."

 

The 'low', 'normal' and 'high' ranges vary with age, and are also lab-specific. However, a reasonable normal range is 80-350mg/dl.

Edited November 14, 2010 by P.Mom