LNN

I checked my strep carrier status about 18 months ago - whole family was checked. We were all negative, so we haven't pursued that since. DS had a standard elisa and western blot this past March - everything was absolutely negative. So we went ahead with IVIG in June. It was the summer from ######. 8 weeks of bad Pandas stuff. Most of that is now gone, but we're left with muscle pain and brain fog. So we did Igenex about 3 weeks ago. These results came back a mixed bag - overall negative test because you need two positive IGM or IGG bands for a positive. We had several indeterminate bands, one positive IGM and one positive IGG. So not enough to produce an overall positive result. But...all of the "indeterminate" results are on starred, lyme specific bands (31, 34 and 39). So in my novice mind, this is not a slam dunk negative report. When we did the blood draw, I also asked that his ANA and C3d levels be checked. High immune complexes can give you a false negative http://www.lymenet.de/labtests/brenner.htm (see last few paragraphs) DS C3d levels were 52 - (above 8 is high). So it's possible too many lyme antibodies were bound up in complexes to create a positive band. I don't know. But something is preventing DS from getting well and getting his brain power back. And the high c3d shows that his body has a high level of some unknown antigen swimming around. So we will do the full co-infection panel and I may also ask to re-test the basic panel (the Igenex report suggests re-testing in 4-6 weeks for indeterminate starred bands). I'd also have your DDs immune complex levels checked so you know whether the Igenex results may be effected by this. Please keep me posted.

Nancy, We did the basic panel for $250 (obviously not going off abx with our history) but you get a 15% discount if you send in two family members at the same time. If you're so inclined, now would be the time to get yourself tested. We paid up front but are in the process of submitting a claim for reimbursement at 80%. Keeping fingers crossed, as we now have to test for co-infections. Ugh. Laura

A few friends have sent me these links and I thought I'd pass them along...they are somewhat dated, so please realize newer info may be out there. But as a novice, I found this helpful: Explaining Western Blot tests: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html WB for Lyme: http://www.anapsid.org/lyme/wb.html Understanding the WB: http://www.lymenet.de/labtests/brenner.htm

I may be in the minority, so take my post with a grain of salt... We did IVIG for my ds 7 in mid-June. We had 8 weeks of h**l. At week 8, the majority of PANDAS symptoms went away and the rest were substantially declining. But two things remained - muscle pain and brain fog. So 3 weeks ago, we did an Igenex lyme test. At the same time, we re-checked my son's C3d levels, since high levels can give you a false negative and I wanted to know how reliable the results might be. Got the results on Thursday and they were overall negative but with several lyme-specific bands "indeterminate" or positive. My son's C3d levels were 52 (6.5 times higher than normal). So my feeling is that it's very possible he has lyme. I asked our doctor about the C3d levels - which were essentially unchanged from pre-IVIG (51). Shouldn't IVIG have made those levels drop? Yes was the answer, unless something is still making him sick. If you had such great response to IVIG and now see back-sliding, I think I'd try to determine what is making him sick - re-exposure? a second co-morbid infection (lyme, myco, EBV, something else?). I'd probably do this before having a second IVIG on the thinking that if there's a second infection, a second IVIG won't give you the full effect you're looking for. It's great that you had such positive IVIG results (I'm jealous). I know it's hard to remember that as you watch the nightmare come back. But it seems that's a big clue. Sounds like you found a treatment that may be very effective - now you just have to find and eradicate the hurdle that's in the way of a longer lasting remission.

Justine, Just an FYI - to allow my son to take probiotics at school, I had to fill out a form (it's a state form - I can send it to you if you need it) and have our Pandas doc sign it. You need a separate form for each medication. You're supposed to do probiotics away from the abx and on an empty stomach - the stomach acids kill about 90% of the probiotics before they get into the GI tract (not sure if this applies to Pearls, but believe it applies to anything in capsules). So if you take near mealtime, the stomach acid is at its highest and the poor little guys stand even less of a chance. So our plan is take Augmentin at 7am, take probiotics at 2:30 pm just before the end of the day (in nurse's office so he doesn't have kids asking about what he's taking), then augmentin at 7 pm. If you wanted to add zith, you might be able to have him swing by nurse's office on way to lunch, take zith, go to lunch and recess, swing by nurse at end of day for probiotics. Then charcoal before dinner (don't know much about charcoal and mealtime? then augmentin with a light snack at 7pm. I've read lots on the forum about charcoal/clay. I don't know much about it, so please don't think I'm trying to argue. I only pass along FYI our doc's concern that charcoal is indiscriminate about what it absorbs and can absorb augmentin as much as it will absorb toxins. An LLMD would certainly know more about this, but for anyone just dabbling on their own, i pass it along as something to consider, especially for those on Augmentin XR as the time release aspect comes into play. Laura

I don't have any input re: clav acid. But wanted to point out that in the Columbia mouse study last summer, the PANDAS mice exhibited "aspergers-like" behaviors and had problems with social interactions. It's not the main focus of the paper - just a sentence amid lots of other discussion. But because it home with me, it stuck. When my son was in 1st grade, his teacher said he made her wonder if he wasn't borderline on the spectrum. After pex, he started second grade and came home telling us about the 5 new friends he'd made. his second grade teacher complained that she couldn't shut him up and he was almost too social.

His fee for initial visit, as of last week, is $900. Follow up visits are $350. According to his fee schedule, he does do phone consults - $350/hr. (unless they just send out an out-dated schedule). if they draw blood on site, it's $75 for the draw plus any lab fees. But you also have the option of having the blood drawn at your local lab. Clinical Labs, which is in northern CT, will draw blood for others labs (they did our Igenex & Cunningham draws) for $15 so long as they have signed doctor's orders. he is booking 3 months out, but you may be able to get on a waiting list of cancellations. When I called, they had a cancellation available two days from when I called. Unfortunately, I wasn't able to make it then. But if you're flexible, you can probably get in fairly quickly. You can also contact Ilads.org and get a list of doctors in your general area. When I contacted them, I was given several doctors in NY. I saved the list they sent. PM me if you want me to email it to you. But I understand from at least one other mom that $900-$950 is a common initial fee. Most will not accept insurance but you may want to contact your insurance co. and see if they'll reimburse you a portion of an office visit. I know our insurance co. will cover igenex if we submit for reimbursement. Have not checked on specific doctors yet.

So I'm not sure if I'm in this Lyme boat yet. DS 8 has been battling PANDAS for 2 years. Crystal clear relationship with strep. But it's starting to look like Lyme may also be in the picture. In addition to having all the lovely Pandas symptoms, he has terrible muscle pain (went away for 4 weeks after IVIG in June, now back with a vengeance) and huge brain fog. We get our Igenex results back on Thur, but not sure I'll believe it if it's negative because we measured C3d levels at the same time as the Igenex blood draw and they're at 52 (normal is below 8, his was 51 in March). I've read that high C3d can lead to false negatives. I have dismissed Lyme until now because he's always responded beautifully to month-long prednisone tapers. But post IVIG has been horrible. We did see what we thought was improvement at week 8 in terms of behaviors. That improvement remains. But the muscle pain and brain fog are getting worse. On Sunday, we switched from liquid augmentin 800 ml/day to Augmentin XR 1000 mg/day (DS is 63 lbs). 48 hours later, he is noticeably worsening - lots of pain and says something feels really wrong (but can't explain it). Last night, he started a vocal tic (first time in the year since pex). Herx? Something is making it worse and I can only think that it's the abx change. This shouldn't be happening if it were "just" Pandas, should it? So we head to the immunologist in 2 days. We have an appt with Dr J in Dec. but I suspect I'll be calling to get on a waiting list for any earlier cancellation. I'm not sure I want to add a second abx until we're in the hands of an LLMD since DS is already hurting so much. But to keep myself from feeling helpless, I know there are things you can do to prepare the body for lyme treatment, to lessen the pain of a herx. Anyone have any suggestions?

That's So funny! I read these lines and immediately thought of you! My favorite lines are: If you can force your heart and nerve and sinew To serve your turn long after they are gone, And so hold on when there is nothing in you Except the Will which says to them: "Hold on"; Guess that's a reflection of where we both are right now. Thanks for sharing, Nancy. This one's a keeper.

Yes, hold on tight. I don't care how many times you hear about it getting worse before it gets better, I don't think you're ever emotionally prepared to go back to those dark places. It was a horrible experience for us. My post won't be of much comfort right now. Our worst period was between weeks 3-7. Then things took a significant improvement in week 8. Yesterday was our 10 week anniversary and it was our first day of "normal" in 3 months. It was an exhausting summer, filled with doubt about what was happening. But yesterday was truly joyous - the whole family commented on it, savored it. We did find that dosing with motrin steadily, every 6 hours, made a noticeable difference in the mood issues. It took the edge off, which was enough to get us all thru the day. At one point, my DS7 could not subtract 7-0. Took him 15 minutes of whining and tantrum to figure out one math problem. I gave him motrin and an hour later, he did the same math problems in 5 minutes and looked at me like he couldn't understand how this could've been hard. It didn't make everything all better, but it gave us all just enough strength to get hold on. I'd suggest getting a doctor's note permitting your son to take motrin during the day at school to keep things constant. When we were sporadic with giving it, it didn't have the same impact. We used it for far too long - about 6 weeks of steady use, which is very hard on the liver. But I didn't want to use prednisone in our case because DS had already been on it several times in the past year. Dig deep. Try to be strong. Give him plenty of slack on school issues. Try to focus on the long term, as hard as that is right now.

I think you certainly shouldn't ignore or dismiss. I'd follow up with the doctor as soon as you can reach him/her. But if it eases your mind at all, my DS7 had a 101 fever all of day 2 of IVIG. He was nauseous, lethargic, and slept thru most of the afternoon. They gave benedryl to no avail. When they finally gave him mortin at 4pm, 20 min later he was awake, talkative and the fever was gone. I don't know why, but motrin works for him in surprising ways. Do whatever you can to get your daughter to take motrin and give it an hour. Her response may tell you if this is a side effect or something else. My thoughts are with you!

Everyone I know in New England travels at least as south as CT. Including those who have tried "local" sources first. I will PM you.

Sounds a lot like my son, except for the fatigue. Huge brain fog. But has done really well with month-long prednisone tapers - halts everything. But can't sustain remission for longer than 2.5 months. We did the Igenex test last week (no results yet). At the same time, we did a C3d immune complex test, as I'd read on the forum that high complexes can give you a false negative (but Igenex would not confirm - told me to ask my doctor) Well, got his C3d levels yesterday - 52 (anything above 8 is high). They were 51 in March. I thought after Ivig this would have/should have dropped significantly. Wondering if the IVIG had any impact on his system or if something else is getting in the way. So in my case, the answer to your husband's question is "no" - I'm not going to be sure I can trust the results if they're negative. I will only trust them if they're positive or indeterminate. Like you, I've questioned a Lyme dx because of his awesome response to 4 weeks of prednisone and we don't have a 4 week cycle of behaviors. But something is going on. I will look for that needle in a haystack with you - we should stay in touch. Laura

DS had IVIG mid-June. He got way worse between weeks 3-6, then slowly improved. At week 8, to the day, he got noticeably better. We are now 10 weeks out. Still healing, but past the ugly part. You will read this and say "well, that's your child. How do I know it will be the same for mine?" and the answer is "I don't". It is horrifying to have to deal with this and go back to dark places. I can't tell you how long it may last, only that this episode doesn't necessarily mean it's anything other than Pandas and an IVIG thing. Some kids seem to have great relief from IVIG fairly soon and others seem to go thru a lot of emotional pain. I don't know if it has any correlation with long term outcome. That being said, the severity of my son's reaction did prompt us to do an Igenex test to rule out Lyme. We waited 9 weeks post-ivig (did not order the PCR panel as you need to be off of abx for that). We don't have results back yet. But my son does seem to be recovering, which makes getting thru a day much easier. For the rage, you may try some CBT techniques - discuss/practice when she's not agitated. The idea is to de-personalize the rage - make it a third party. Younger kids may name it, older kids may just mentally think of it as the disease. So long as they realize the rage is not who they are, but is rather a symptom that they need to control. When the rage starts up, you try to "catch it" - identify what's happening and break the cycle. Empower your child and make them realize rage is an enemy. In the same way you might demonize a cupcake when you're dieting. "No!" you tell the cupcake. "You are trying to keep me fat! I will no give in to your evil temptress ways!" and you walk away from the cupcake instead of eating it. Your daughter can practice doing the same thing with Rage. She can catch it in the act, tell it "no, I will not let you take over my mind and my feelings" and use CBT skills to de-escalate. A book we found helpful was Tamar Chamsky's "Freeing Your Child From Anxiety" - except you substitute the word "rage" for anxiety. But the techniques work for both emotions. The goal is to make your daughter realize she is in control, not a victim or powerless puppet to her own emotions. It takes work, but we've seen long term results with the technique. Hang in there. Today's reality won't last forever.

I think Kara will be able to give you invaluable advice, so I won't repeat what she'll probably tell you. I would only add that I don't know anyone in the Boston area who's had luck with doctors there and most people in the Mass/RI/CT area head to Dr B. A few people in Maine have found support locally, but I don't know how close to Boston they are. They may chime in. I think pursuing ERP/CBT therapy is an excellent idea, regardless of diagnosis. Learning to be the boss of your own thoughts and emotions is empowering for any child and a good therapist can give your child skills that will last a lifetime. You can go to www.ocfoundation.org to find a list of therapists in your area. If they have BTI after their name, it means they've been specifically trained in ERP techniques. One caveat - while ERP can be very helpful for kids with traditional OCD as well as Pandas kids, a Pandas kid will need medical support (antibiotics, perhaps other immune-modulating treatments) in order to really get on top of the OCD. Therapy is an important piece, but not the only one. As for which path to pursue, realize you're asking a biased group. But it seems that if you can see an infection link to behaviors, then pursuing a focus on the immune system may be a fruitful first step. But you know your child best and you will have to educate yourself and then trust your own gut.

I don't have any personal experience with Tenex, but had the same thought that it could be part of the problem. Without abx, meds like Tenex or SSRIs may help for a time. But after awhile, in Pandas kids they seem to be less effective and in some cases, can add to the problem they were supposed to help. However, stopping any medication should not be done without a doctor's supervision and you would need to discuss some sort of taper strategy. My son gets extremely wired when he's excited. The Christmas of our first year of Pandas was a nightmare of excessive, unchanneled excitement. I remember it vividly. While I'm a big fan of the benefits of prednisone, we personally had a bad experience starting it while an infection was active. I think it made it worse. We've had awesome experiences with it when we started it after we were sure the infection was gone. So if you wanted to consider prednisone, my caution would be to make sure he's been on antibiotics for several weeks first and I might remove the tenex from the equation before adding something else as well. It's hard to not throw everything at this at one time, but adding and taking away at the same time can make it hard to know what worked and what didn't. Now to contradict myself - the ibuprofen may give temporary relief. We found it most effective when we gave it three times a day instead of just "as needed" - it kept things from building up. But it's not something you can use long term without doctor supervision (e.g. for months at a time). It's harsh on the liver. But to get you through a family visit, it may take the edge off. And to second Meg's Mom - some Pandas behaviors may need CBT/ERP therapy to help the kids re-train their brains to not indulge OCD. They may need something that helps modulate their immune systems. But as far as permanent damage to anything in the brain - there doesn't seem to be any. And the kids do seem to forget things that you yourself will remember for a long time. It's a long battle, but just because the answer may feel like a needle in the haystack doesn't mean the needle can't be found. It just takes more patience, more stubborn determination, than you wish it did. But you're not in this alone - you now have a group who will help you through this. We hand out hankies, but we also hand out lots of research and warrior knowledge. Hang in there and keep us posted. Laura

I agree with Vickie - given how hard this was, 2 hours is a very big deal. If you can, squash the part of you that wants to yell, or even show disappointment. Celebrate all weekend how proud you are of his being able to fight and accomplish getting in the door. See if you can be detectives and talk about triggers. Why was today different? What can you both do to make Monday better? Set a goal of 2.5 hours for Monday, not the whole day. Shoot for the morning, since starting the day with everyone may be easier than walking in in the middle when everyone else in a rhythm. Tell him you'll pick him in 2.5 hours if he can start the day on time. Maybe promise he can go to the principal if he gets overwhelmed. And try to drive home the point that this is temporary - that you will beat this thing together. We never had to deal with full school refusal. Just lots of anxiety getting there. One thing that helped was to get there early, before anyone else. Then as people slowly started to come in, my son could gradually adjust to the crescendo of noise, activity and energy. He was already in the stream, instead of having to jump in when it was already full bore. This let his anxiety rise slowly and he could adjust instead of having to jump into things cold. You may also want to work out a "safe" signal or "safe" phrase - something he can tell an adult that translates into "I'm about to lose it, get me out of here NOW" without having to actually say that. Your principal sounds like an angel. I wouldn't be surprised if he has something like this in his past - either other students or a family member. It is a rare find - hopefully he can form a bond with your son and be an anchor for those parts of the day when you're not there.

Worried Dad, I'm so sorry to hear about this. You know how we're hoping to follow in your footsteps. But I am hoping this doesn't repeat itself in your house. We have a younger child as well, and only want our lives to parallel in good ways! At least now you are a seasoned warrior with at least one victory under your belts. You can skip the horrible quest for doctors and know so much more now (is Igenex in DS10s future?). Please keep me posted. It's your story that gives me the most hope. Laura

My son does this too, but honestly, I don't think it's OCD. In our case, it's just a boy having his favorite toy close by Now this may be OCD. Several parents can tell you stories of spitting due to fear of germs or a "not right" feeling in their mouths. Lots of OCD is a "normal" behavior taken to an extreme due to an abnormal fear or thought. Which is what makes it so hard to detect and to fight. So whether your son's spitting is OCD depends on "why" he's doing it.

My son struggled with tics a great deal. At the start and end of an episode, he absolutely would tic for a burst of time and then be quiet for hours. It was only in the middle of episodes that the tics would be all day. And we too had an upper body, complex motor tic. We had to revert to sippy cups because if he held a glass in his hand, the whole kitchen would be showered in milk the first time he picked up the glass to take a drink. The jerk was that severe. Looked like he was being electrocuted. In his first full blown episode, he had some OCD, but the tics were so dominant, it was easy to overlook the OCD. Even now, without tics in the mix, he has OCD I don't find out about until an episode starts to wane. Then as he feels stronger and can resist the OCD, he wants to brag and will tell me about all sorts of things where he told OCD "no" - things I never suspected were a problem, even with my paranoid watchful eye. Best of luck at the doctor's. If it doesn't pan out, it might be time to consider a visit to one of the Pandas specialists.I would tell you not to freak, but those on the forum who know me personally would bombard me with private emails, laughing that I of all people suggest to someone that they not panic. I am queen of panic. So I won't be a hypocrit. I'll just tell you I know how you feel and will keep you in my thoughts.

In our personal experience, being on a 10 day only course of antibiotics was a nightmare roller coaster and I'll never be able to shake the nagging questions of "what if we'd been more aggressive sooner?" Maybe nothing would have changed. I do know life got so much more bearable once we were in the care of a Pandas literate doctor who wasn't afraid to be aggressive. My son is not yet cured. For us, long term antibiotics have helped, but haven't been the whole answer. But is that because we didn't act fast and hard in the beginning? Or is it just an individual thing? Will never know. In the beginning, my son responded quickly to antibiotics, so long as we treated at the first signs. If the horse got out of the barn, 10 days of antibiotics wasn't enough (but was all we could get). My advice - get to one of the Pandas literate doctors. They will take a Cunningham score seriously. At least then you'll have the medical support you need, which for us was more than half the battle.

Oh, I so know how you feel. My DS (almost 8) started battling this 2 yrs ago. He gets asperger's-like when in episodes. We get big time brain fog along with the other Pandas symptoms. He kind of "goes away." Then when he's truly healthy, I get to see the "real" kid underneath it all and I about jump out of my skin with joy. Then some illness comes along (often just from exposure to someone else) and steals him away all over again. It drives me mad. Trying to uncover the "real" kid for more than just a glimpse is one of my dominant thoughts. The bad news is that 2 yrs later, I am still fighting the fight. We've done plasmapheresis (saw positive results, have enjoyed tremendous relief from tics, but other symptoms returned when his best friend had chronic strep last fall), we've done prednisone tapers (works wonders but not a long term solution) and 2 months ago did IVIG (took 8 weeks before we've started to see improvements, so jury is still out). So I don't have any magic bullet answers. I would recommend having a full immuno workup done to test for allergies (esp food in your case) and to check for mycoplasma, elevated aso/anti DNase B titers, immuno-deficiencies, signs of chronic infection etc. And it may be worth doing an Igenex Lyme test before doing any of the expensive/invasive treatments. (we just sent our samples this week). I second the opinion that twice a week zithro may not be enough, or may not be enough to start with. But I also realize that abx is something you have to fight for with most docs. It's not as simple as calling and telling them that strangers on some forum suggest a different abx regimen. But upping the abx is the first place I'd start, along with the immuno/lyme testing. If lyme comes back negative from Igenex, and if funds allow, I'd probably then do the Cunningham test to look for elevated CamK. That would give you an indication if Pandas was a strong or weak possibility. (IMO I would not do the Cunningham test until you rule out Lyme from Igenex as it seems that both strep and lyme can elevate CaM K levels and many insurance companies will reimburse you for Igenex after you pay out of pocket, but not for Cunningham). Don't give up. The answer may not be simple, but I refuse to believe that it can't be found.

I agree - nothing will stick until the infection is wiped out. Azith has never worked as well for my son as Augmentin. Others have exactly the opposite experience. I'd think you may want to switch antibiotics and do detective work, then let the infection diagnosis guide your treatment decision. Where would you get pex? Hang in there. Most have us have been in your shoes. It seems endless right now. But Keep fighting.

For kids who balk at a Neti (and grown ups too), we use this (the junior size version) http://www.natlallergy.com/prod/1557/nasaline-nasal-irrigator-by-camexco.html It's a syringe - eliminates the need to be a contortionist. The only warning my own allergist had was to make sure you compress the syringe slowly. If you shoot the saline into your nose too quickly, it can force water into the ear canal and cause an ear infection. But if you do it at a moderate pace, it's ok (you have to push the syringe fast enough to trigger the reflex that closes your epiglotis and prevents you from choking but slow enough that you force water into the ear canal). It sounds hared than it really is. Also, use warm water. If it's too cold or too hot, you get a headache for a few minutes - sort of a brain freeze. It's not ideal, but if you feel a neti is helpful but can't get your child to do it, this might do the trick. We find it shortens the durations of colds if you use it daily at the early signs of something coming on. Once the cold is full bore, I would not use it, as trying to send water up into a blocked passage with the syringe can be harmful/painful. That's the beauty of Neti - it uses gravity so it's easier to control the force of the salt water. I guess you pick your poison.