JAG10

What insurance do you have? Did any of your testing come up with immune deficiency?

That's fine, it wasn't my intention to imply every child ever associated with a pandas dx needs a T & A; no not standard like that. Kmom- Encourage this particular ENT to contact your pandas doctor who is recommending T&A to share his views on the current science behind that decision for your child. This ENT will tell you that based on his knowledge, he cannot recommend it based on enlarged T & A or snoring or pandas, ect....he cannot recommend it, but he does respect pandas docs and will perform what you need done in a competent and timely manner based on the pandas doc rec.

What is the difference between ordering IgG subclasses or IgG subclasses panel? They are different numbers.... any difference?

oh JAG - that comment makes me cry with its harsh sting of reality!! i see you say you're getting other infections checked out. . . my opinion is it could be both -- other infections could be troubling her immune system but what you SEE is from myco trouble.. . . perhaps she can't kick the myco or it is so troubling for her b/c the other infections exist but in more of a 'silent' existence. so you could be right -- myco is her achillies heel and what you see and other infections enable it to be so. Absolutely open to and investigating that possibility. Lord knows she picks up everything she comes across...warts, cold sores, molluscum, all the viruses that leave evidence of their visits. Terrible acne. Interestingly, the lice want nothing to do with her! Every year, someone in her class passes around lice and many of the boys and girls have been infested, but not her, ever. Perhaps the lice are smart enough to sense something is wrong and not hitch their carts to her wagon. Thanks everybody; great discussion!

So, if you have confirmed "chronic myco-p" by MD and blood markers.....do you eradicate the infection with targeted abx while improving the terrain with IVIG? Is there a down side to that strategy? This is how I think my dd was so sick with PANDAS for so long (stab guilt here) She was asymptomatic of strep with "symptoms of concern" brewing until March 2007 when WHAM she nose-dived after having a persistent cough for weeks in February. We took her to psychiatrists bcs the symptoms were what we saw, we didn't see a chronically physically ill child....we followed the psychs recommendations that never worked, we listened to the peds who said they need to have a fever for 72 hrs before we'll see them... The field of medicine has so let down our children and been Outwitted, Outplayed and Outlasted by the Surviving Mighty Microbes. I've heard our lyme friends who say it can just be neuro symptoms, and I'm still getting it all checked out....but my dd has amazing stamina, no fatigue whatsoever (she runs 5Ks and does triathlons), no joint/muscle/aches/pains-nothing like that; it is and always has been for years neuro-psychiatric symptoms.

We do too and I'm keeping my eyes reasonably wide open (but not dilated.....sorry, couldn't help myself!) I still don't understand how you monitor myco-p by blood markers? If it takes YEARS for the titers to fall, how do you know what is current and what was effectively eradicated? Plus, my dd10's myco-p was measured right before IVIG (1.62) and 9 weeks after (3.02) AND she was not sick in between nor was anyone else, it was summer.....so it appears to me the IVIG made her myco-p marker double... during this same period of time her symptoms improved, not worsened.... Dr. K speculated that myco-p antibodies/markers in the population in general have risen recently and this measurement reflects that..... I don't get it....how do you know what is going on with myco-p? Do you just go by IgM and forget about IgG??? I also wonder if myco-p, bcs it must be evaluated with a blood test, flies under the radar more than strep which is much more convenient to swab at an office visit? We know our kids can demonstrate atypical symptoms or no symptoms...what if when challenged with myco-p they appear to have a brief-er virus, or nothing but behavioral stuff and never get checked for myco-p, but that is what is going on? My mommy-gut tells me myco-p is my dd achilles heal and that she spirals downward harder and faster with that than strep, even though her strep titers can fly off the charts.

I guess I'm split too. All possible infections should be investigated, but I don't believe that every child who has symptoms must have a current, underlying infection or there would be no symptoms. I think a child could be clear of infections yet their immune system has not gotten the message to stand down. I'm investigating lyme and co-infections because while I don't think it is likely based on my child's symptom history and development, I do think it is a reasonable possibility based on where we live, our family's love for the outdoors, and the history of one tick bite, even though the tick tested negative-we're still testing her and that $920 overhead is not without consideration! I respect your experience and those of the other families pursuing lyme treatment. Most folks appear to be on board checking into Lyme to some degree. We all love our children and will leave no stone unturned to get them well. That being said, lyme is not under every single rock. For those who have ruled it out or are planning contingencies based on results and instinct, IVIG is a worthwhile discussion and information accumulated over time may be new to someone here and valuable.

Here is the most recent update: http://www.latitudes.org/forums/index.php?showtopic=9474&st=0&p=79511entry79511 She does say that myco-p and lyme were detected and are being treated, but she also appears to be implementing several different treatments including abx, HD IVIG and steroids as needed. She also comments they would choose HD IVIG again if needed.

Absolutely! He is not warm or fuzzy, quite the opposite. He will put you on the spot asking you what you want. He's a cold fish. He will not make you feel comfortable doing the T and A on the specialists recommendation. (the hospital staff are warmer and fuzzier) BUT... he will do it and he is very skilled. Play a little dumb, but not too dumb. Talk about how these specialist met at NIMH this summer and they appear to be in accord that T and A for PANDAS are recommended, but that Dr. B could probably do a much better job explaining it than you can and encourage him to call or email him....which he will. Good luck!

Wow!!! That gave me a major lump in the throat. I don't know what the doc is going to say my dd10 needs, but I have a feeling it is more IVIG. If he can't get it covered by insurance, there are ways to significantly bring down the cost from the $1000 per 10 lbs your child weighs we've heard on this forum before. You can get Gamunex from Costco pharmacy for $46/gram which is much cheaper if you can get a doctor on board to write the script and have it done at home. Nevergiveup-does your dd have her infusion in a single day? Do you have it done at home? I wonder what a home nurse ends up costing per day for infusion?

Yup, I suspect you are correct. So does that mean you need to do IVIG every 4-8 weeks for over a year?

Priscilla-what a pretty name! This seems to be the trend lately for the non-lymies. Seems this has been brewing for awhile; I found this old post by coco in Jan: http://www.latitudes.org/forums/index.php?showtopic=6783&st=0&p=53971entry53971 It states Dr. K is in agreement with every 8 weeks, rather than waiting 3-9 months... which is not what I heard. I suppose there are lots of factors at play with that one... if your kid will need treatment every 8 weeks traveling to Chicago may not seem as doable as a one time and then maybe another might be necessary. Don't get me wrong; I think he really believes this, it just doesn't seem to be what is being reported in this community lately. I agree, that is why we have done 4, 4 weeks apart each, at 2gm/kg- and its working! Not even on abx anymore!

Call the guy I PM'd you. DON'T say you heard he did it on the rec' of a PANDAS doc from another mom on the internet; THAT will be the kiss of death for your appt.!!! Just act like you happen upon him and present Dr. B's recommendation. My rec' came from Dr. K, so he probably won't put the two together.... He got my dd7 in the OR in 10 days.

That remaining 25-30% is all ADD stuff; focus, attention, task completion, concentration, memory....but it is HUGE for a 5th grade girl who can't get any of her work done in school, is drowning there and suffering socially because this too. We simply cannot keep her afloat; we're all drowning trying to teach her what she is missing all day. Both my girls are in a private school, which for the most part has been very accommodating, truly. If I pull my 5th grader out...do I pull my 2nd grader out too? It's the only school they've ever known. I feel her May IVIG was successful especially with regards to OCD, but my gut is telling me one just isn't enough. Her IVIG was 23 weeks ago. She's had 3 setbacks since then; 12 weeks/strep/Aug, 15 weeks/myco/Biaxin, 18 weeks/strep/Aug. After these setback we would see the OCD show it's ugly face, but each time we increased abx and did one steroid burst 2 weeks ago and she gets back to that same 70-75% mark again; OCD-gone, ADD debilitating. Pupils WIDELY dilated. I know the ADD stuff can be resolved, I saw it immediately after the IVIG, she was hyper, but very clear thinking and concentration. I'm just shooting from the hip with this comment, but I don't think one IVIG is enough. Yes, we're checking out lyme and co-infections, ect. but my mommy gut tells me that auto immune faucet was running non-stop for YEARS. Maybe one IVIG works if you can keep your child quarantined for a year, but my kid has had 3 exposures in 6 weeks....how is her brain ever going to heal that way?

I'm going to try re-structuring and adding to my question so hopefully some people will share their opinions. 1) If you have improvement, but not remission on 4+ weeks of full strength abx... -Do you think the infection you were targeting is gone, but the auto-immune process remains in motion or -Do you think you've slowed down the infection, lightened the bacterial load, but haven't totally eliminated the infection or -Do you think you've eliminated one infection but others remain 2) If you have improvement, but not remission with one IVIG.... -Does that response help you further determine whether remaining symptoms point you toward underlying infection or auto-immune dysfunction that requires more IVIG and/or -Does elevating the child's IgG suppress the auto-immune dysfunction AND help the body eliminate any remaining infections? Last question: Are the dilated pupils definitely from brain inflammation? I'm not saying, no dilated pupils, no PANDAS....but what would other causes of consistently dilated pupils (that stayed contracted after IVIG, but dilated again several weeks later) be if not from brain inflammation (excluding drugs)? I realize we may not be certain of the answers, but please share your educated thoughts and insights

On the heels of the successive infections post I was wondering.... How do you know when myco-p is gone? or intracellular strep?? Someone wrote it takes 4 months (of biaxin?) to get rid of myco-p...how does anyone know that and what is the blood marker that tells you if it's gone? I mean, if you don't subscribe to the theory that there must be a chronic infection or no auto-immune process...how do you know when it is gone from the body? On the flip side...you onion peelers; how do you know when that layer of onion is completely gone and you are ready to address the next unwelcomed microbe? It seems to me it has been posted several times that we don't know how fast titers fall; strep titers can take months and myco-p years....plenty of time to get re-exposed before having a chance to fall...so how do we know?

Ditto on the SSRIs; this giddy, goofy, impulsivity, ect. is known as behavioral activation and is common in PANDAS. Then, some docs will put your child on the psych med rat wheel where they prescribe a mood stabilizer to balance out the behavioral activation, but then the child can become cognitively blunted, dull; then they want to add a stimulant, ect., ect. Our experience was a disastrous mess and years of wasted time before we found out it was PANDAS. You are way ahead of the game!

Here is the paper Dr. Trifiletti posted regarding the overloading of toll like receptor pathways with successive infections http://www.nature.com/msb/journal/v2/n1/pdf/msb4100057.pdf GraceUnderPressure-Let us know what your research unearths, please!

On the premise that known and unknown infections/microbes are the target, do the LLMDs cycle through various abx systematically to lighten the bacterial load....even prescribing abx to infections that they don't know you have? How do that decide what order to prescribe them? Do they have to cycle through several times? I do think myco-p is a BIG culprit in all this....I also think it is more common than folks realize, but don't get tested. My dd's pediatrician just posted an Award of Excellence they received on her website.....guess who it was from? BCBS Should I puke now or later?

Amy mentions infections "piling on" over time which makes sense to me. Some parents report sudden onset as completely normal to WHAM undeniable disastrous behaviors while others report a crescendo of concerns that eventually took a WHAM turn for the worse that was undeniable. I wonder how this would relate to infection piling on? I see my dd10 as a definite crescendo kid who became undeniably worse in 3/2007 after myco-p. Dr. Trifiletti posted this topic on toll like receptors (TLR) becoming overloaded as the infections "pile on" http://www.latitudes.org/forums/index.php?showtopic=7042&start=0&p=56499&fromsearch=1entry56499 Wow, how does one treat the unidentified microbes??? MP systematically switches the antibiotics to hopefully bring them all out in a way the weaken immune system can handle? This sounds like a similar approach as the LLMDs are reported to exercise, no? So she would say definitely NO to steroids as it is suppressing.......what about IVIG? What if IVIG was done in combination with the systematic approach of abx?

I'll PM you

What lab does he use? Whatever your insurance dictates? Someone on the Lyme forum said Quest was the worst lab...so would he use those results?

Let me preface by saying I'm in the process of having my dd10 tested by Igenex now......Waiting for the kit/slip from ped. But wanted to get some feedback.... I pulled a tick of her in 2006. My brother-in-law has Lyme disease, so I knew a little about it. Her pediatrician absolutely refused to treat her at all at the time of bite if no bulls eye rash, which there wasn't. So, I sent the tick itself to Igenex and it came back negative. Has anyone else done this? I wonder how extensively the ticks themselves are tested??? I wonder if the ticks can later turn positive like people seem to...? I'm going to include reference to that tick report, which the woman told me they still have on file, when I send in her form and blood just in case they can gather any useful info from it. My dd10 was definitely having mild to moderate neuro (PANDAS) symptoms prior to the known tick bite. Her symptoms spiraled from mild/moderate to severe in March 2007 after what we now think was myco-p in February 07. I think the infections just keep piling on these susceptible kiddos. She also picks up every virus including warts, molluscum, cold sores....but isn't usually physically sick or tired; quite the opposite she has incredible stamina for running and has run a few 5Ks and a triathlon. Anyway, with a known tick bite, living in PA with Bambi all around us and with her history of problems with hundreds of mosquito/"bug" bites and all the feedback shared by so many of you.....I have to have her tested. We're doing the Basic Western Blot (thru Quest she was only reactive for 41) and the co-infections panel. Do people usually have any luck getting reimbursed for the Igenex labs?

I took my dd to the Amen Clinic in Reston, VA in July, 2007, a few months after she nosedived. Her SPECT scan showed over-activity pervasive in the perimeter and down the middle of her brain. They call that Ring of Fire ADD, but she did not have the raging usually associated with it. After her PANDAS diagnosis, I tried to write Daniel Amen about the etiology of her Ring of Fire, but I never heard back from him. I did email the psychiatrist who treated her from his clinic and she was "stunned." whatever. What was she stunned about? That your dd had PANDAS? What were her symptoms when you got the scan? It sure would be interesting to do a study with a whole bunch of PANDAS kids and see what their spect scans (a la Dr. Amen) would look like. While I think Dr. Amen has some interesting ideas, I don't think he is tuned into PANDAS or knows anything (?) about it. At least I don't see it mentioned on his website or elsewhere. Her symptoms at the time of the scan were OCD, ADD and some mood issues, but more silly, hyper active, sensory seeking. The psych thought she was bipolar at 7, but she didn't have any raging, defiant, grandiose, stuff, some grudges, intrusive thoughts. My last conversation with this psych was on the phone, I was at my wits end...why weren't any of these psych meds working??? What the h@ll were we going to do??? She said to me "Jill, we are not missing anything here, that I'm sure of." That was August 09 and we had our appt with Dr. Elia that October who took one look at her and suspected PANDAS. So, perhaps some of her "stunned" was embarrassment, as it should have been. I don't think Daniel Amen knows anything about PANDAS either, but he's a bit of a pioneer himself and I would love to have him look at her scans again through a different lens. I showed her SPECT scans to Dr. K at our follow-up appt who found them very interesting, similar to PET scans of our kids.

I took my dd to the Amen Clinic in Reston, VA in July, 2007, a few months after she nosedived. Her SPECT scan showed over-activity pervasive in the perimeter and down the middle of her brain. They call that Ring of Fire ADD, but she did not have the raging usually associated with it. After her PANDAS diagnosis, I tried to write Daniel Amen about the etiology of her Ring of Fire, but I never heard back from him. I did email the psychiatrist who treated her from his clinic and she was "stunned." whatever.