P_Mom

Yep....frustrating....the exact same thing happened to me.......the lab ran the double stranded DNA test instead of the AntiDNAase B the first time we had labs done after onset. If you had the blood drawn recently...call and see if they still have the blood and can run the correct test off it (they usually hold for a week or two)...that is what I did. It will save you a blood draw...those are never easy.

Vanessa..... As you probably read..that ASO is high and indicative of a strep infection (diagnosed or not)...but, what I reaaly wanted to tell you is that the other test you mentioned is called an Anti-double stranded DNA test....it is NOT the test you should have done to test for strep antibodies....that test is called the AntiDNAase B titer.....they are easily confused...make sure you get the correct one.

Please steer clear of absolute, diagnosing statements such as this. There are many very impressionable, vunerable, desperate to help their children parents on this forum who, for whatever reason, can take the experience of someone, read their posts, and take it as the absolute truth. It would be just as easy and correct for me to say...although it would be way too bold and unfair...but, I could easily say that poor screening results in you being misdiagnosed with a chronic infection and not an autoimmune issue. See my point??? Let's try to steer clear of absolutes......because...there are none.

........ all the CURRENT CamKinase tests in the lab will be run and results given out. The purpose of this break from Nov. 23 to End of January is to catch up with the current workload of camkinase tests at the lab." (Dr. Cunningham)

From Dr. Cunningham and staff: ".... we will not be sending out any boxes, and ideally, not taking delivery on any boxes after the23rd of November thru the end of Jan." "......they are catching up with about 100 camkinase tests and need until END of JANUARY before they can run anymore tests or send any boxes out.

Well...I know that high triglycerides is not good....I would pursue the reason for that and try to get it lowered. My boys have normal metabolic numbers, so, I can't help there as far as it being related to PANDAS. (I would think not) Jill...High HDL is GOOD! Glad to hear the docs think it is because of the fish oil because that is why I take it....trying to raise my HDL.

"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.

Jill...yes..for children....they are done by age.

It seems a lot of our PANDAS kids have low immunoglobulin levels...why?? That is the magic question!

I am going to say..YES! I believe an immunological work-up is crucial on these kids.

I totally agree! Don't waste time!!

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?

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???

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.

This is all odd to me why Dr. Latimer is saying that because a child is doing well at the appointment...it means no PANDAS.....really odd. Yes, their handwriting CAN get really bad, chorea, etc.....but, not all PANDAS kids and not if not in exacerbation. My sons, also clearly PANDAS (no Lyme here).....were bad, especially my younger son, at one point, but, with proper treatment, they got well. My younger son did have deterioration in handwriting, etc....but, NOT when he saw Latimer. When they saw her, both were doing well.......didn't show much of anything to her, however, based on history she still agreed with the PANDAS diagnosis they had already received. Very odd.....PANDAS kids, well, a lot of them, are not bad all the time..their symptoms wax and wane....doesn't make them not PANDAS if they are doing well..... I would keep pushing if I were you. Oh, I really don't think you will get a clear cut answer from Cunningham on why the CamK is elevated.......MANY pathogens (not just Lyme and strep) can cause a rise.....she is very careful on what she says. She will not diagnosis your child, or, tell you what to do as far as treatment.

There are many antiviral natural remedies out there....some use Olive Leaf Extract. I hope others chime in because there are many others. But...I have always wondered about antivirals used in PANDAS/PITANDS. If antibiotics work for PANDAS...would antivirals work for PITANDS? Any experiences out there??

Same here....son HATED the chewables and would not take them....I had to pitch them.

Thanks everyone! Son is still doing very well post surgery....still have yet to see those mild PANDAS symptoms.......he is on a stronger dose of antibiotic right now...so, who really knows what is up. I can always have hope, right? As far as eating nuggets...not here. Our ENT is very conservative when it comes to kids and tonsillectomy (as per his nurse) He keeps them over night in the hospital and keeps them on a strict diet. He likes to keep an eye on them the first day/night, and, likes to keep them on a strict diet to aviod bleeding and possible secondary infection. All the docs are different....whatever your doc says and whatever you are comfortable with is the way to go. My son doesn't really have an appetite the past few days, so, "eating" has been kept to fluids....popsicles, Italian ices, broth, Jello, etc. Just today he ate a cupcake and some mashed pototoes! And yes....I am soooo glad it is over with and those things are out!! Vickie...my son isn't taking much for pain, either. He is really doing well...thank God. Doc says it is normal for kids to have more pain about a week after surgery as the scabs slough off.

Well.....we finally managed to get my younger sons tonsils and adenoids removed this past Thursday. (it had been postponed twice before) He did really great and continues to do well today. Before the surgery at the docs appointment,it was noted that his tonsils looked fine.......not infected, swollen......nothing. No sign of anything wrong. The ENT removed his tonsils and adenoids based on "his reaction to strep"....stating that although it doesn't eliminate strep...it has the potential to greatly reduce it. Dr. Latimer suggested we do it, also. Anything to help reduce the cause of their PANDAS. Well, when it was all said and done..he came into the recovery room and told me his tonsils were "very infected, cryptic, with pus coming out of some areas." I was shocked. I had to pick my jaw off up the floor! He said that "thats what happens when tonsils go chronic." I have no idea if this will help with the few remaining symptoms he has...time will tell. I know it won't get rid of PANDAS...but...if he had a chronic infection in his tonsils...we may see further improvement...which could be 100% because he was so close before. I am soooo glad that those things are out! Now, both boys are tonsil/adenoid free! Oh....no surge in any PANDAS symptoms.....not yet atleast. I have been looking for his usual mild PANDAS symptoms the past 2 days...haven't seen them....nothing...but, it is early. We'll see.

Sorry about your second daughter.......I remember the feeling when my second son presented with PANDAS. The "good news"......sometimes things happen for a reason...that is how I looked at it when I found I had two sons with PANDAS. Without my younger son presenting like he had...it is VERY likely my older son would have been misdiagnosed, and therefore, mistreated and most likely still ticcing today. (as per Dr. Cunningham) And, now you know what your enemy is! It also always brings be comfort having both kids on proph. antibiotics......that way one child is not continuously bringing home strep and affecting the PANDAS child. Also.... you caught it early...like we did...and we are managing well on antibiotics alone! Was that Dr.K's reasoning behind being able to manage on antibiotics? Because you caught it early?

EBV caused a six month mild exacerbation in my older son.(back when this all started) It takes a while for the initial infection to clear, but, the antibodies stay with you forever. Almost everyone will be infected with EBV. So, yes,EBV definitely can cause an exacerbation in PANDAS. Also, like Vickie said...EBV is one virus implicated in causing false positive Lyme tests. And remember, almost everyone will be affected with EBV. Many, if not infected, have shown positive for the virus after IVIG because of the high prevalance of antibodies to EBV in the general population. Please be careful in interpreting your Lyme results...especailly if you are IGM positive only...the prevalance of a false positive is high in this group if you have had symptoms for more than 3 months.

Thank You! But, these aren't the chewables...they are the regular pills....does that make a difference?

And I thought I saw every episode 10 times! LOL I would have thought the same thing...hope I see it!

Halloween through New Years is also a big season for PANDAS flairs. It correlates with the high incidence of strep exposure during this time. Just a heads up for those dealing with PANDAS and Lyme.

I know this has been asked before, but, I can't find it....it has been awhile. Can you split Augmentin 500 mg pills in half? I know if you did, the C. acid would be less than in the regular 250 mg Aug., but, would that be the only difference? Would it be like taking 250 mg Amox,. with some c. acid in it??? I have only 500 mg pills left, and I have been giving my boys the 250 mg pills once a day (I know, not really sufficient, but, it has worked for years) I would like to keep them on this low dose as long as it is working......so, I either start giving them the 500 mg Aug. pill once a day, or, can I split the pill in half with the result of them getting 250 mg Amox. with a bit of c. acid?? Any thoughts would help...at a cross-roads here. Also, prayers are welcome as my younger son is getting his tonsils and adenoids removed Thursday. THANKS!