JAG10

MRI is better than a CAT scan as far as the brain is concerned. They both have their niches, i.e. the CAT scan is better for lungs, but MRI's the way to go between those two if you're talking about P.A.N.D.A.S. My last MRI was in 2006 & came back normal. Did yours show anything? What about the EEG? SPECT scan shows blood flow to the brain, which is especially important when picking out specific areas of concern. It can show if you're getting decreased oxygen to the Temporal Lobe, Cerebellum, or in P.A.N.D.A.S. case Basal Ganglia. I don't think I've heard of anyone on here doing that one but it sounds like it could be helpful. I've heard quite a bit about PET scans on here but I've never had one myself. There are probably others who will chime in that know a lot more than I do about that one. My dd11 had a SPECT scan through the Amen Clinic when she was 7, before we knew anything about PANDAS, for ADHD. I was told the SPECT scans indicate "activity." They said, basically, her whole brain was over-active, particularly the anterior cingulate gyrus which was described as the "gear shift" of the brain and the becomes "stuck" in those with OCD. It was an expensive, out-of-pocket cost that really just gave a brain picture to her symptoms. I would not repeat it, but Dr. K found it interesting.

Hi, I remember Johnsmom posting about her son's recent pop for staph http://www.latitudes.org/forums/index.php?showtopic=13663&st=0&p=113100&hl=johnsmom&fromsearch=1entry113100 On his bum, not throat though. Sorry no info for you. Who knows what we would all find....if we looked.

On a similar tangent....a nursing friend of mine turned me onto giving honey pollinated by bees within a 10 mile radius of your home. The antioxidants are unbelievable, but it's got to be from bees local to you. Google beekeepers in your area and many sit out jars of honey in an honor system near their farms/homes. Just 3 teaspoons spread throughout the day.

I think anti-DNAse B can be elevated by different strep and ASO is group A only. DNAse B is not a "pandas test", but having taken my girls to 4 different pandas experts, they all found it significant her DNAse B titers were over the tilt measure or the maximum limit the lab tests. I think I remember some families using the Mayo Clinic lab who obtained crazy measurements into the 5000's, maybe IowaDawn and Worried Dad?? So while elevated in the hundreds happens in the typical population, I think I remember elevation in the thousands only occurs in less than 1%. Of course, lack of elevation does not exclude pandas. Dr T use to frequent this board and he explained it like some kids have a hyper-immune response cranking out all types of antibodies with no way to shut down and other pandas kids have a hypo response not mounting much defense at all. Some kids have crazy high titers and immune deficiencies. I suppose if this disease was logical or made any sense at all, they'd have it figured out already w/o controversy, but what fun would that be????

So you know you are 5 hours from Dr. Kovacevic. There are other parents who have seen Dr. Chugani. If you scroll down the topics to Vickie's post about a pandas newsletter, there is a link about this doctor leading a PET scan study at Children's Hospital of Michigan. Could that be a possibility? I agree; do not pass go or collect $200, go straight to a pandas specialist. Last summer, I flew and drove from the Philly, PA area to Chicago to get my girls seen by Dr K. Now we see Dr B who is within 3 hours driving. Hopefully, others will chime in soon. It's past my bedtime. Hang in there, Casey.

Hi Casey, I have an Abby also, but she is almost 8. However, it is my older dd11 with the more significant pandas. You have a lot going for you; you've found us, your Abigail is very young and you are proactive!!! My older dd had this for many, many years and was almost 10 before I found out what was causing the problems. She has been getting treatment for about 16 months and is soooo much better and well on her way to being "neuro-typical." Can you tell us roughly where you live? Jill

Hi Lisa, Here is a very specific example with objective data to share with your worried hubby. My dd11 does Kumon which is timed math practice in sequence. So each pack is 10 pages and should take 20-30 minutes. She tends to be accurate regardless of pre-ivig or post ivig, but for the past two ivig's, she has completed her packs in 15-20 minutes for weeks prior to ivig and then this increases to 35-48 minutes after ivig for about 2 weeks. This increase in delayed processing has been noted by her teachers. It is so apparent, I am having her take all of her final exams before her next ivig so not to have to deal with this issue. Her eyes also become dilated during ivig and this resolves over this 2 week timeframe. On a subjective note, she also becomes hyper after ivig which fades over the same period of time. This time frame may be longer with a first ivig.

Um, there are several folks here who have gone through CHOP and met with Dr Elia. I have mixed feelings about her. After years of psych meds, she was the one who pointed us in the pandas direction, but offered little help regarding treatment. She is extremely conservative with abx and does PEX, but only for very new, severe,, sudden onset cases. Many here felt like they wasted valuable time with CHOP and Elia to end up nowhere.

You mean Dr Josephine Elia, psychiatrist?? She is very conservative, very.

EXACTLY, DCmom!!!!!! Let all the health kids get it to provide our kids with "herd immunity" It probably wouldn't work on our kids anyway.

I've seen that in my dd11 before. I tried to keep it light, remind her of the things she likes that she gets to enjoy bcs she is older/bigger like staying up later or having a sleepover. I usually say something like....even though we all grow up and you are no longer a baby, you will ALWAYS be my baby and there is nothing that can ever change that. That seemed to comfort her. Hang in there. This too shall pass.

This is great news, Laura! Not only the welcome breath of sweet spring air, but the relief that comes with logical evidence that affirms what you are doing to heal him and why. You will have a renewed strength to tolerate the tougher times because you are not second guessing yourself. Awesome way to start the weekend, TGIF!!! Jill

I apologize if you misunderstood me. I agree that some children their only sign of infection is elevated titres, and without that piece of information lots of folks can be sent down the wrong path. I wasn't trying to minimize their role in treatment/dx. The point I was trying to make is that my son's case is textbook PANDAS, and fortunately we see doctor's who understand that a positive throat culture is enough even in the absence of elevated titres. However, there is a just as sizeable group of children are being denied treatment for PANDAS, even with positive cultures, because of the focus on elevated titres as a defining characteristic. Whenever there is a discussion about the role titres play in PANDAS, wether dx or the actual biology of the condition, it's important to note the sizeable group (I think someone mentioned 30%) who see no change in titres with an active, or asymptomatic infection. My point was that it's only one piece of the puzzle, and I think my last statement should've said: "The bottom line - titres are an interesting piece of the puzzle, but unreliable at best, and shouldn't be relied upon SOLELY to confirm/deny a diagnosis." Hope that clears up any misunderstanding. Understood! Clearly, we are all on the same team!!! Your child's different set of variables does not negate the validity of my child's diagnosis nor vice-versa. Hopefully, someday sooner rather than later, science will determine what treatment protocols best suit children that share common diagnostic variables....you would think there would have to be some biological rhyme or reason to it. I suppose Dr. T took a stab at it with his hyper-immune, hypo-immune subtypes....but perhaps we still only have 80 pieces of a 500 piece puzzle.

I respectfully disagree about the significance of ASO and anti-DNAse B titers. Just as adamantly as folks are against too much significance being placed on these titers rising, there is another sizable group of kiddos for whom significant elevation of these titers was the only clue of an infectious variable and that pandas/pitand was in play. It is these children that are asymptomatic of strep and no documented history of positive rapids or cultures that run the biggest risk of going misdiagnosed as purely "psychiatric." I mean, c'mon, with behavioral presentation (if anything) what is a pediatrician more likely to run? The convenient, cheap throat culture or anti-DNAse B titers?? The two measurements should go hand-in-hand with behavioral presentation, ones significance no more important/conclusive/diagnostic than the other....at least at this point.

My girls get a rise in titers and never rapid or culture positive, ever. Even though ASO/aDNAse b titers do not measure the anti-neuronal antibodies causing the problem, there is a subset of kids here whose anti-DNAse B titers seem to correlate to their symptom severity; when they are up, symptoms are up; when they are way, way up, symptoms are also off the charts (even though some will say it is only the direction of the titer, not the height....that doesn't seem to always be the case.) I wish I knew definitively that nothing other than some strain of strep makes ASO & anti-DNAse B titers rise. I mean, has any scientist looked at that??? Sometimes, I feel like we are all operating under certain established scientific "facts" that we assume to be true, but don't our kids tend to break so many scientific "rules", maybe some of these facts are not so for our kids, but nobody has looked at it??

YES Kara!!!! Drive My Parents Flippin Crazy Disease We are an awesome group of parents, right? We know high expectations and consistency are among the hallmarks of successfully raising children. As our kids improve, we promptly shift that baseline expectation back in the right direction, where it belongs!!! How in the world do you have consistent expectations when (at any moment and without warning) you could be playing symptomatic whack-a-mole???? I think it would be hilarious to go back in time and meet me 11 years ago, have a glass of wine with me and listen to what kind of parent I intended to be. It must be a good day because I think 'present day me" would be laughing and not sobbing. You guys are a riot!!! Normal??? Normal has left the building. Jill

This has been nagging at me, too. I keep hearing from others here (or a comment by Dr. J's assitant) about the connection between OCD and Bartonella, but finding something more detailed, formal, official... has been close to impossible. I also keep thinking there has to be a connection between Lyme/TBIs and strep. In Cure Unknown, there is a paragpraph that discussess how Dr. J was one of the first to treat Lyme as a bacterial infection (in the 70s??) because so many of his patients coming for Lyme treatment also had strep and when he treated the strep with abx, their Lyme symptoms improved. The other thing I wonder about is what is happening with the brain. Is it inflammation due to antibodies attacking the brain as stated in PANDAS? Or is the Baronella infection actually in the brain somewhere wreaking havoc and inflammation has nothing to do with it??? Sorry if I'm an accomplice to hijacking.... Hi Kara, One thing that has always affirmed the "inflammation" theory for me is the positive impact of ibuprofen and that my dd11 had the constantly dilated pupils once her symptoms became chronic. In researching dilated pupils, there are only a few things identified as causing this...and none of them are good. Specific medications and drug overdose can result in dilated pupils. And brain injury/inflammation can result in dilated pupils. Even though my dd experienced some improvements with abx only, she experienced significant improvement with ivig and the ivig has been the only treatment that has resulted in normal dilation of her eyes, usually 10-14 days after the infusion. It's so wonderful to see those beautiful, hazel eyes! If your question is....are the antibodies attacking the brain causing inflammation or is it infection of various etiology causing the inflammation....that is another million dollar question. But my vote, FWIW, is inflammation is the factor. Jill

A few people have reported livedo reticularis, which is a lace-like pattern on the skin that can be an ordinary happening in some girls especially when chilled. However, LR has also been associated with autoimmune disorders. My dd11 had this BEFORE ivig and it went away afterwards. I believe SF Mom in her twins and pixiesmommy (I think she posted photos on the Lyme board) suspect it may have to do with TBI, perhaps Bartonella? It is usually seen on the extremities, but not necessarily. You can google that term to find pictures to compare.

Wilma, For what it's worth, my dd11 has been taking short 6 day courses of prednisone with her ivig. Her first ivig was last May. She was then 10, 85lbs and 4'10"; she looked rail thin and had restrictive eating/texture avoidance anorexia. Almost a full year later, she is over 5'4", 125lbs-a little too much now. She has the breast buds and the puberty signs, but I still think she is 9-18 months away from menses based on my height and my husbands; she's got a good 6" to go yet. I will say this, and I don't know if it is from periodic short courses of prednisone or the ivig's, but she had always, always been delayed in her tooth development and in the past 6 months, she has completely caught up, surprising her ortho. I'm not saying prednisone can't bring on menses, but that it might not necessarily. (maybe it allows the body to catch up to where/when it naturally should have developed?) Prayers and warm wishes for health. Jill

Yes, this type of cognitive interference is not uncommon. I'm an SLP, so I tend to tune into the cognitive disruptions. My dd11 has increased word retrieval difficulties when symptomatic and conversation is laborious. Fluctuation is math computation is one of her biggies as well. It does completely resolve when she is healthy, but is one of the first signs something is wrong. Interestingly, when she did try SSRI's, these skills would improve and quickly (within 24 hours when they are suppose to take weeks to build up in the system.) It never lasted though and brought with it behavioral activation, so not the route to take. I guess that means it is some sort of serotonin/dopamine issue when the basal ganglia is inflamed.

My dd11 does the same protocol w/Dr B She weighs 115lbs, 5'4" 30mg/day starting today for ivig this Wed/Thurs, pred through Saturday. It really does work to minimize headaches.

This is fabulous, Brandy!!! So, you are saying he responded with "normal sick" symptoms instead of just behavioral ones to strep, correct? Awesome!!! Quick question; was he on the double dose of Zith when he got strep?

Melinda, I had mine removed when I was 21 (for semi-chronic bronchitis) Dr. T seemed to think it was significant I had them removed to late, but i don't ever remember being diagnosed with strep. The recovery is rougher; like 3 full weeks and 20lbs

She had hers out when she was 5; she had kissing tonsils and snored BADLY!!! I still don't know how I feel about that....if she had them in until a little older, would she have been "symptomatic" of strep and would I have caught on to all this years earlier? Who knows! That was 2004 and I still think the kiddos who developed pandas at very young ages would not have easily been picked up then. So we are making progress when we see all these new (and some not so new) posters of young kids. God bless us all; really, no easy fete.

Based on my younger dd's experience and several posts on this topic, sometimes the docs don't realize how bad the tonsils are until post-surgery. After my older dd11's IVIG, we went back for a check-up with Dr. K about 9 weeks later and took dd7 with us for a once over. Dr. K recommended having dd7's tonsils removed based on physical exam (they were large, but not "kissing"), mild symptoms and hx of very elevated aso/dnase b titers Neither of my girls ever swabbed/cultured positive for strep ever, but must have had asymptomatic infections since both had markedly elevated ASO and anti-DNAse B titers. I found a local ENT who agreed to remove her tonsils based only on Dr. K's recommendation; said he would be the "technician" for surgery, but he could not recommend removal based on what he observed or her history. After the surgery was completed, he told me her tonsils were a mess and clearly indicated chronic infection he was not able to appreciate during pre-operative physical examination. Sometimes, it isn't so easy to find a cooperative ENT, but maybe your pandas/lyme doc can make the recommendation since the pediatrician will not.