LNN

If it were me, I'd spend the money on a consult with a local LLMD rather than on additional tests. Often, an LLMD may prefer to use a different lab or run a different test, and sometimes they use labs that accept insurance. Or they may try a few months of treatment instead. A good LLMD will not hand out a lyme dx like candy, any more than a good Pandas doctor does. You have a non-LLMD telling you to drop the issue, but your child isn't responding to a Pandas treatment that way you had hoped. You don't have the clear history of strep. You have an LLMD on the phone who is telling you that the possibility of lyme isn't out of the question. And don't forget, you're only testing for lyme at this point. Could also be co-infections. So you can either spend more money on tests that give you more indeterminates, and then still have to go to an LLMD for treatment, or you can spend the money on an LLMD consult and see what he/she thinks. I think since you're still wondering, then the only way to get closer to peace of mind is to see a doctor who has experience sifting thru this stuff.

This is the funny youtube that I think EAmom posted. Is this it?

Are you thinking of "sensitivity testing"? It was discussed on Peglem's posts about her daughter having strep. My incomplete understanding of sensitivity testing is that you take a throat swab, grow the strep in a petri dish and then either identify the strep strain and thus know which abx works best against that strain or somehow test various abx in that petri dish and see which one works best against the culture. Not sure exactly how it's done. But that's the gist of it I think. How you would ever do that for lyme is beyond me, since it's nearly impossible to find the actual spirochettes in the blood and it can change it's form (cyst, L-form). But if you find what you're looking for, please post.

Isn't that too funny! You do 90% of the work and they glow just from being able to accomplish the 10%, with hardly any notice of all the load you just carried for them But we have the same experience, which is actually encouraging. I sometimes get on DS, making sure that his disease(s) don't become an excuse for turning into a lazy, spoiled kid. But then there are times when he genuinely can't function like a normal 8 yo and really would do more if he could. You can see it when they beam with pride just for doing that 10%. That's when you know you did the right thing by lightening up. The trick is knowing when to push and when to lighten up. It's ever-changing, even throughout the same day or week sometimes. I'm happy if I get it right more than half the time. BTW - loved your post on the Pandas forum about Pandas not being an incorrect, but rather an incomplete, dx. You described our story to a tee. Thank God for those "lyme fanatics" who crossed and re-crossed our paths.

Pandas certainly exists. And there are plenty of kids who have "just" Pandas. But some of us found that the symptoms of Pandas can closely overlap the symptoms of tick-borne illnesses (lyme, bartonella, babesia, erlichiosis/anaplasma, and mycoplasma - which can come from a tick or from humans). Some of us think our kids may have had a TBI and then when they got strep, the whole thing exploded. So that's why you see lyme discussed so much on this board. As for your test results, you'll get as many opinions on that as there are members. There are lots of reasons why tests for lyme are less than reliable - mostly due to the fact that the tests look for indirect evidence of infection, such as evidence of antibodies against the lyme bacteria. But there are many reasons that these tests can give false negatives and false positives. So at best, lab results give you clues, but unless they're overwhelmingly positive, lyme remains a clinical diagnosis based on symptoms rather than on blood work. Whether you feel one +41 is enough to pursue additional tests or a visit to an LLMD is a personal decision. It means your child has been exposed to a bacteria that has a flagella (a sperm-like tail). But there are other bacteria that can be transmitted by a tick (listed above) and it's possible to be infected with bartonella, for example, and have a lot of neuro-psych symptoms, and not have lyme, or maybe have an exposure to lyme (thus the +41) but only an active infection with bartonella. So you can do additional testing for co-infections but again, the tests have short comings and you still need to consider the clinical picture. So...it becomes a personal decision as to whether you think there are pieces of the picture that are not explained exclusively by strep. For instance, if your child gets symptomatic without an active strep infection - it could be due to exposure to strep, or it could be that there's a tick-borne infection at play. If your child has unexplained fevers with no other signs of strep, if brain fog or rages are a disproportionate part of the picture, or show up when there's no recent strep...I'm not saying this "proves" these things are due to "lyme" and not Pandas. Only that if there are things that don't resolve the way they should or if symptoms take an abnormally long time to resolve, or if they show up in the absence of a clear strep infection, then maybe it's something more than Pandas at play. About a year or so ago, a lyme mom posted that maybe as much as 50% of Pandas kids might actually have tick-borne infections. At the time, I thought that was ludicrous and even if true, it certainly didn't apply to my kid because we had clear evidence of strep. I was wrong. I think Pandas was part of our problem, but not the whole story. So you see a lot of posts about checking for lyme/co-infections just because we don't want others to make the same mistake. I would recommend ruling out lyme and co-infections before spending large sums of money on IVIG or pex, but it is ultimately up to you to decide how far to go. The tests are not definitive, in the same way that ASO and anti-DNase B tests can't be used to rule out strep. You have to consider symptoms and response to treatments (or lack thereof) to decide your next steps.

Wilma, Having followed some of your posts, I wouldn't be surprised if your daughter were battling more than one issue. Some of us have kids who look "text book" Pandas but don't follow the "script" and don't respond they way they're supposed to to treatments. That's when we end up finding out that there's more than one battle going on. I'm not sure if you should focus on a name for the disease so much as on what works and what doesn't. Since a lyme protocol of combo abx isn't so different than a Pandas protocol of one broad-spectrum abx, Dr B may be able to put you on a treatment that would be helpful for both. You should also discuss how tick co-infections could be muddying the waters. It's an onion and I'd make sure you were able to give him a clear picture of what you've tried and with what results. I'd recommend a timeline. For example... Jan 1- Jan 10 - abx 1, seroquel, diflucan...then what behaviors were better or worse Jan 11-Jan 30 - list of medications...behaviors Also bring all of the lab work you may have. One of the biggest mistakes I made was being "married" to a diagnosis (in our case, Pandas) and ignoring or rationalizing things that didn't fit, such as a spike in symptoms that didn't occur due to illness that I blamed on exposure to strep, when in fact it was probably due to lyme/bartonella. I think having a name or diagnosis is helpful, but an incomplete diagnosis can cost you a lot of time and money. I'd suggest laying out all of your information in an organized, concise manner and let Dr B review it all as a clean slate. Organization and making him aware of important data is key. Good luck!

One way to check for illness is to test immune complexes over time. C3a complexes and C4a complexes are sometimes associated with lyme (and other illnesses) and C3d complex is sometimes mentioned in cases of autoimmune illnesses such as RA (but again, not an indication of any specific disease). But if your daughter has elevated immune complexes, it shows her immune system is fighting some sort of chronic infection. I would think fever is a sign of some sort of battle going on and not "normal". Maybe something to discuss with whomever did your daughter's IVIG. I was told by our immunologist that my DS's IVIG should have helped reduce his C3d numbers but instead, they were just as high 10 weeks post-IVIG as they were 3 months before IVIG - which suggested an unresolved infection, which then led us to lyme (not pushing the lyme thing - only bringing it up as part of my own story). Something to tuck away. I'll hope instead that you continue to see more good days...

Thanks for the reassurance. I was worried it might come across wrong - like some sort of "holier than thou" tone that I didn't mean. My son just finished two weeks of state-wide assessment testing and his brain fog was as bad as it was just before we started lyme treatment. So now his fog will be "immortalized" in his scores and I worry how much his scores will impact teachers' expectations of him. So I really do sympathize with Smarty's concerns. It's been a real test for me to try to focus on my son's needs and let go of my own "mourning". I've been dreading these tests for the past two years of Pandas (this is his first year - of many - of taking mastery tests). We also switched meds yesterday (waited until tests were over) and today saw an increase in symptoms similar to what we endured post-ivig last summer, including a lovely rage over a Club Penguin Wii game that left both my son and daughter in tears. So I tried my best to remember my own post and treat them both with kid gloves instead of seeing it as a case of spoiled brat being a sore loser. Wasn't entirely successful, but did much better than last summer, so that's something. I think the biggest difference between Pandas world and lyme land is that in Pandas world, I was always terrified that an episode could spring up out of nowhere and might take months to wind down, only to be followed by another right after it. In lyme land, we call it a herx and have an expectation that it will get better, and eventually stay better. I pray we're right.

If you substituted the word "concussion" for "lyme" would it make your decisions easier? If a teacher told you he was complaining but you knew he had just suffered a concussion, you'd probably tell the teacher to go easy on him. His brain has healing to do. If the coach told you he wasn't performing at his best in baseball and was were worried he would let the team down, but you knew he'd just suffered a concussion, you'd ask the coach to maybe expect less of DS at the moment, but to not give up on him or throw away the rest of the season. I think that yes, I would get his gear together for him like you did when he was 4. I would try not to focus on letting the team down - that's the head coach's responsibility. I think it will mean a lot to your son to have you support him and not up the ante on his needing to be at a higher level than he is right now. Let him play (or sit on the bench) and make sure he knows you believe in him. If he screws up, so what? Granted, I'm not a sports person, so maybe I don't get it. But in the long run, it will matter more to your son that he had your support than whether he dropped a ball or spaced out. He has a disease and no one wants his old self to return more than he does. Try to accept him as he is - fight for more, but don't make him feel as if his current best isn't good enough. I struggled with this for a very long time. It got easier once I was finally able to let go of my own expectations and instead just wanted him to feel joy. I am still a work in progress. I'm not sure we adults always understand just how much our kids are dealing with. Your support will mean everything to him.

My DS is too young for facebook, but yes, we have that abnormal intensity on video games. It's worse when he's not well. It's as if it becomes his outlet to compensate for all the things he feels is going wrong in real life. A place he gets to escape and be top dog. When he's feeling good, he still wants to spend a lot of time in front of the PC or Wii, but will dis-engage with normal groans when time's up. When he's in a bad place, we get unhealthy intensity during game play and when it's time to shut down. It's a trait that makes me worry a lot. I'm sure you've already taken steps to make sure his privacy and security measures are in place. Also let him know you're monitoring his posts. I know of a 17 yo boy whose hormones got the better of him and ended up in a she said/he said claim of unwanted affection. His facebook and phone text transcripts were subpoenaed. I don't have answers for how to break the addiction aspect, but make sure he understands the ramifications of words that you can't take back. I'm dreading the facebook years.

I don't believe my son saw any benefits from IVIG. It was a very rough recovery which led us eventually to a lyme/bartonella diagnosis. My daughter has labs that would indicate Pandas (high CamK and high anti-neuronals) and episodic OCD/sensory issues but no evidence of strep. She has some IND and ++ lyme bands and is responding very well to treatment for bartonella (zith+bactrim). I am not bashing IVIG. I know it's helped some kids. But for us, it was a detour, not a treatment that moved us forward.

Nancy and Vickie summed it up for me. I do check in but after so much time, you do run out of things to say or offer. You begin to repeat yourself and feel like an old-timer telling the same war stories over and over. It starts to feel like everyone at the dinner table rolls their eyes as you launch into yet another story about how rough it was walking 10 miles to school in the snow, up hill both ways.

Dr L has a checklist/scorecard that is similar to a Y-BOCS scale but geared toward Pandas symptoms. I believe a few other docs may use or have access to it or something similar but do not know who developed it.

It showed signed of irritation in the esophagus, supporting the GERD and dyspepsia dx (DD was complaining of feeling like she was going to throw up first thing every morning and sometimes actually throwing up). She takes 20mg pepcid daily and it seems to keep the GERD in check most days, but it returns if we skip a dose. But the endoscope showed no ulcers, no other signs of irritation or abnormal results, biopsy was negative for celiacs. Because lyme was not slam dunk, we spent a lot of time ruling other things out. That left us with "maybe lyme, maybe bartonella" so we started treatment for those and DD is in a very good place at the moment.

DS is supposed to start tindamax in a few weeks. While googling, I came across an association between metronidazole (flagyl) as a possible carcinogen in rats and a warning that tindamax is a relative in this drug family. But I can't find anything more. Has anyone researched this or have any reference articles?

Yes, that was my son. But I don't have anything concrete to offer. We had pex after a year-long battle of strep and T&A. I suppose it's possible the pex helped because he had such a prolonged autoimmune response. I'd think that removing "good" antibodies that were fighting lyme was a bad thing, but maybe removing the "bad" auto-antibodies outweighed that and in a short time, maybe his body made new lyme-fighting antibodies but no longer had bad autoimmune stuff floating around. Total speculation on my part. We had a bad response to HD IVIG - maybe herx. IDK. It seems different lyme kids have different responses to the IVIG. As hard as it is to find any doctors literate in either Pandas or lyme, finding one who understands both is harder still, and finding any research is just about impossible. All I can offer is prayers and a shoulder.

My daughter has CamK 178, high antineuronal titers, but neg strep titers, no physical signs of strep. Her basic Igenex does not scream lyme - just ++41 and an IND 39. But she gets sudden and dramatic bouts of OCD and unexplained reflux and eating issues. Her immune complexes have tripled and went from 25 last spring to 94 two months ago (anything above 8 is high). She does an amazing turn around on antibiotics. So if I wanted to say she had Pandas, I could build a case. If I wanted to argue for lyme, I could. But no smoking gun in either camp. Just one miserable six year old. Both our Pandas and our lyme doctor agree there's some chronic infection with a neuropsych response. She was doing fairly well on just zith but started to have blips. Our LLMD recently diagnosed her with bartonella and added bactrim last week. The first few days were rough, which in a perverse way makes me feel like it was the right thing. The last few days, she's been happier than I've seen her in months. I don't know what she has, but I know things are better since adding the second abx that seems to work on bartonella- at least at the moment. So in our case, yes, an LLMD was willing to treat for a tick-borne illness with OCD as the only clear symptom (aside from GI issues). We did do a fair amount of blood work, and an endoscope with a regular GI doc early on, plus a poop test to look for GI culprits. So I don't want to give the impression it was a quick diagnosis. We spent months looking for things. We tried to be evidence-based, not knee-jerk. But I don't think an LLMD would dismiss the possibility of lyme based on OCD as the only obvious symptom.

Jill, Sorry to hear about the regression. We've had the same experience. 10 weeks post-ivig at the end of last summer, DS was starting to practice some basic skills to kick start his brain prior to the start of school. One morning, his brain was so scrambled, he could not tell me what 7-0 was (he was about to start 3rd grade). I gave him motrin and we took an hour break. He came back and looked at me like I had two heads - could not believe he had struggled with this problem only an hour before. He was like - "it's 7 - duh..." It always amazes me how an imbalance in brain chemistry can have such a dramatic impact in all areas of our kids' lives. It gives me hope to see him when he's clear but it's a killer to watch it fade away, sometimes in a matter of hours. You have to just burn those good times into your memory and know that that's what we fight for - they are "in there" and we keep fighting so that these times of clarity become permanent. I hope your DDs setback is short lived!

I was browsing the IOCDF website today (www.ocfoundation.org) and found a search engine to locate local support groups - I was amazed at how many Pandas support groups were listed in a 100 mile radius of my zip code. http://www.ocfoundation.org/find_a_support_group.aspx Also, if you go to the online support groups, at the bottom you see a Pandas support group and it brings you to latitudes. Thanks to whomever added that! I was browsing the curriculum for the BTTI training that therapists can go to (3 day seminar) and saw that PANDAS is one of the topics covered. If you're involved in a support group, please consider adding your group to the list http://www.ocfoundation.org/support_group_submission.aspx This is a far cry from what existed only two years ago. Thinking back to Vickie's video at the end of last year - lots of baby steps but no doubt that the idea of infection-triggered neuropsych symptoms is becoming more accepted. (Now if we can all just get our own kids healthy again!)

We did 1 HD IVIG before we knew about lyme. No steroids before or after the procedure (tho 2 steroid tapers months prior did wonders). I'm not sure the IVIG helped. I do know a few lyme/Pandas families who are using IVIG as part of their lyme treatment and they feel it has helped. But it's been a rough road for them.

Kara, I'm so sorry things haven't turned around. I don't know how you guys do it- you and DH have amazing patience and understanding. I think you've been given a lot to consider. For me, it would help simplify things if I made two piles - stuff to do for short term relief while you wait on Igenex and stuff do get lined up for after you have results. In the long term, I might make two appointments - one with an LLMD and one with someone who could prescribe an SSRI or offer something along those lines. Then after you have results, you can cancel one of the two. I believe Dr Horowitz only treats adults - not sure tho. Best to call a few LLMDs and ask a few screening questions. Maybe the lyme board could help with a few interview questions to help you decide on who to make an appt with. Maybe making dual battle plans will help you regain a small sense of control over this nightmare. In the short term, you need to get the family through two weeks and sleep would seem to be a top priority. Not sure if you ever used melatonin, or if you might consider some sort of sleep medication. Did you ever try any sort of fast acting anxiety medication - something along the lines of valium that works on the first pill, not something that needs to build up? Again, I have no experience here, so I defer to others to offer suggestions for things that would be appropriate for a few weeks of anxiety reduction. I know you have lots of ERP under your belt - maybe if you can get DD to relax enough, she might be better able to help fight back. She must be in so much pain right now. You can also try to find some info on bartonella, tho there's not much out there that discusses the psychiatric symptoms. T.Mom - bartonella is what's been blamed for my kids' OCD, not lyme. An Igenex basic panel won't test for this, but since many people with bartonella also have lyme, being positive for lyme might make a doctor suspect bartonella in the mix as well. Just something else to consider. You are in my prayers, as always. Laura

Not responding b/c I think I'm an expert - especially on teen issues - a total foreigner in this world for another 5 yrs. But I'm assuming that OCD that's bad enough for an intense program means you may have a 504 or IEP? If so, have you, or can you, put something in place that limits the time that needs to be devoted to each subject matter? That would allow him to pre-build a standard schedule - say 45 min per subject - that would start at the same time every night, instead of creating a schedule from scratch each night. Also, make it a requirement that any schedule have a pre-established end time - it cannot end past 11pm. Can you contact the therapist who worked with him during the program? He/she will know the situation best. You may also ask if you can arrange for periodic check-ins with this therapist via skype. The Univ of Fla (Dr Storch) also has a skype program for long distance OCD treatment (I'll get the info if you want it). I think for someone so new to "recovery", it's essential to maintain that support system that comes with an intensive program. Sounds like it's too soon to be tightrope walking without a net.

Thanks, tampicc - I needed that today! Not what I ever dreamed I'd be "good" at, and wish I never had to learn about this stuff, but I appreciate the thought. There are other parents here who are much better at it than I am - Nancy being one of them. When I first started learning about CBT and ERP, it seemed so overwhelming. But I had a great teacher (Meg's mom and others) and it's really just about empowerment. When your child is learning a sport or a musical instrument, there are a few ingredients to success - first, the desire has to come from within. It can't be dictated by an adult. Second, they have to be willing to practice, practice, practice. Third, they have to be supported - with training, with coaches, with pep talks, with tools and lessons to gain skills, with peer support to learn from others who understand, feeling they're part of a team and not flapping alone in the wind, and with celebrations for each small accomplishment. So we're really just asking our kids to do what seems so normal if it were soccer or piano. It's just that most soccer moms don't have to learn how to coach "wearing underwear 101" or "the world series of touching door knobs".

We asked for - and were denied - a 504 when Ds was in 1st grade. We got one at the end of 2nd grade (nightmare story). So we worked under the radar with his teachers in the interim. We developed a hand signal that meant "I've tuned out - can the teacher or TA come tell me what's going on", we had the teacher's agreement that he could use the bathroom as often as necessary, even if he just went 2 minutes ago. For anxiety - I was to be called if he ever asked for me - without needing to go to the nurse (who was my worst enemy thru the whole thing), he could arrive early at class to adapt to a quiet environment and then be settled before the other kids came in, I waited in the school lobby with him for about 15 min every morning, letting him acclimate. In a 504, you could ask that it be ok to arrive late (to allow you to work thru clothing issues), (I believe that you'd need an IEP if you needed a high number of excused absences). We also asked to be notified in advance for any fire drills so DS could be prepared - the teacher went so far as to tell him 15 min ahead of time, otherwise he'd spend all day waiting and worrying. He was also allowed access to ear plugs kept in his backpack and was put in the front of the line (with an asperger's classmate) so he had an adult near him and was first out of the building. You could similarly ask to be notified of special visitors. The important thing was being validated with a formal plan. We no longer had to waste time repeating ourselves and trying to convince every new teacher that we weren't crazy. I know your heart must break over the separation anxiety. But I'm not sure you'd be doing the most good by home schooling - if that's your primary reason for doing so. Whenever you accommodate OCD or anxiety, you make it bigger. You validate the fear and send the message to your child that their fear is reasonable. You reinforce it. I know it is gut wrenching and I never ever agreed with the kindergarten teachers' attempts to restrain my child as they told me to leave. Instead, even if it took a long time, I'd stay with my child (had to do this with both kids) and give them the pep talk of the century - but in the hall, not in the classroom. I'd tell them that I loved them and had made sure they'd be absolutely safe. But that I didn't want to OCD monster to be the boss and if I listened to the monster, then I wouldn't be protecting my child from him. The monster wanted all of DS's attention and wanted him to stay out of class, focused on the monster instead of on the kids and teacher who were having fun without the monster. And I loved my child so much that I was going to help him defy the monster and go have fun. (You can find lots of this kind of discussion in the OCD books we've mentioned in other posts.) The important thing was that they ultimately needed to make the choice to say no to the anxiety and cross the threshold by their own choice. Then we'd celebrate the victory when they got home. It's tempting to say that at 5, they don't have the coping skills to do such a hard thing. And I do realize that severe OCD can make this impossible in some days. I don't mean to make it sound easy. But I've been amazed at how proud my kids are when they're able to face their fears. So whenever you can push them to do this, it's awesome. The other thing we've had a lot of success with came from the recent Oprah show with that boy who used visualization and colors to help him calm his rages. My kids have intuitively grasped this concept much faster than they grasped ERP ideas. When I asked them if their feelings had colors, they were like - yeah - duh. So we talk now about how the OCD monster likes dark, sad colors and wants to steal all the sunshine colors. When the kids start to get angry or sad or (insert negative feeling here) - we say - "don't let those feelings steal your sunshine" and somehow, they seem to understand how they need to fight back and protect those positive feelings. I never expected it to work - figured it was over their heads. Turns out they get the concept better than I do. I digress. Other ideas for a 504 might come from your daughter. Make a list of things that worry her at school - and discuss ideas with her about how to mitigate those fears. You might be surprised how some simple things may mean the world to her (such as Benji's bear).

We were required to provide a documented diagnosis in order to get a 504. So if you are going to pursue, you will do your blood pressure a favor by having something from your doctor prior to the first meeting. There's a sample letter on pandasresourcenetwork.org or you can draft your own and ask your doctor to print it on his/her letterhead. Doctors are hard pressed to find time to draft a letter from scratch but may be very willing to work with a draft you provide as a starting point.