MMC

Links did not work for me either. If his movements are predominant when he walks, it does sound like Sydenham's Chorea. SC is a close cousin to PANDAS, sharing many of the same symptoms, but choreiform movements are the most noticeable symptom. SC is caused by an autoimmune reaction in the body after a strep infection. If you search on Sydenham's Chorea on youtube, you will find a few videos out there. We video taped our son as well and have shown it to several docs, and they always said, "that helps". It lets them see him at his worse at night, when the tics are bad and uncontrollable. The main thing I would recommend is to get him on antibiotics immediately if not already...get any strep cleared. Then, get a doctor who will prescribe a prophylactic antiobiotic to prevent strep again. A child can get strep even on proph abx, but it is better than nothing.

Yes, definitely. Both of our children have PANDAS (clinically diagnosed by a nationally known PANDAS doc) and did not show any apparent OCD symptoms. I had PANDAS as a child and did not show apparent OCD symptoms. But, with that being said, the OCD can show itself later, although may be mild. Since we are more aware of all the encompassing PANDAS symptoms, we can now see that both children have OCD...and other symptoms, including sensory issues, anxiety issues, ADD / ADHD, etc. And I now realize I had/have some minor OCD. But, I do think the kids with low OCD can have worse tics, and this has proven to be the genetic traits from me to my children. The tics can wax and wane and move around different muscle groups. Our DS currently has a lot in his face and neck, drives him crazy. His hand and finger tics also are very bothersome. Our DD has a slight head shake, that she can normally disguise when not at home, and she has a wrist tic, where she rotates and clicks her wrist over and over. I outgrew most of my symptoms by the time I was 18, so there is hope...cause the docs, from what we have experienced don't have good treatment options for tics.

I'm wondering the same thing, b/c we saw a new immunologist and he mentioned giving pneumovax to measure titers. The follow up appt is 12/12. Not sure what we will do if he recommends this vaccine...makes me nervous. DS was diagnosed immune deficient about 2 years ago. And we wanted to test immune system again to see how things look. He does not get sick a lot, but most of his PANDAS symptoms will not clear.

This one looks good... http://www.pedrheumonlinejournal.org/April/reviewarti.htm It mentions RF, PANDAS and SC. "inflammatory disorders have been associated with preceding streptococcal infections"

Thanks Hootie, I found her website. We just may have to pay her a visit. She is only about an hour from us.

Does anyone know a good homeopath in NC or neighboring state? Would your homeopaths be able to recommend someone in this area?

I was reading about the BBB on Wiki and it states this about Lipoic acid..."There are currently active investigations into treatments for a compromised blood–brain barrier. It is believed that oxidative stress plays an important role into the breakdown of the barrier. Anti-oxidants such as lipoic acid may be able to stabilize a weakening blood–brain barrier." http://en.wikipedia.org/wiki/Blood-brain_barrier There are a lot of hits on the forums here for Lipoic acid. Mainly on the Lyme and Tourettes forums. We have not tried it. Has anyone had anyone tried this as a supplement with good results?

We are crossing our fingers on that too, the "outgrow" part. This was my experience. My PANDAS issues started at 7 years old, and were mostly resolved by the time I was 15. And since college age, symptoms are 90 to 95% resolved. I was on proph abx until 21, that is the only treatment I had. DS13 responded well to a 5 week steroid taper 2 years ago. We have not done this since, but plan to do this again shortly. We already have the Rx filled. This will hopefully give him relief from his tics and symptoms around Thanksgiving break and hopefully into Christmas. We have done 9 months of Lyme/co-infection treatment with various abx, so hopefully all infections are cleared. But, it is very hard to tell. We most likely now will go off abx except for the daily proph of augmentin or penicillin. We are not sure what else to try at this time, other than to have this new immuno doctor check over everything and encourage a strong immune system with whatever recommendations he gives. Not sure if we would do IVIG again...probably not, b/c he had a very hard time with it, and no improvement in symptoms.

The BBB part in this puzzle is starting to make more sense to me. I have PANDAS, my two children have PANDAS. My sister has PANDAS symptoms...so, its all in the family. And it seems like we have a genetic, familial issue with the BBB, who knows why, but we do. And if it is normal for folks to have anti-neuronal antibodies, we have them after getting strep like everyone, but they just cross into the brain and cause issues with the basal ganglia and the rest is PANDAS history. We are going to see a new immuno doc on 11/11 and I am going to, well... pick his brain on this. Sounds like there needs to be research on how to close the BBB in PANDAS kids. I found one recent article on "Breaching the BBB", and it mentions some about closing it..." Similar work has been initiated for treating multiple sclerosis, where researchers hope to tighten the barrier rather than open it, to prevent destructive immune cells from entering and causing disease." But, most of the article addresses opening the BBB in order to treat alzheimer's and such. http://www.sciencedaily.com/releases/2011/09/110913172631.htm Does anyone know if Cunningham or Swedo has done any research on the BBB and how to close or control it in hopes to help our PANDAS kids?

Our DD15 with PANDAS does well on Vyvanse 40mg. She has tried various ADD meds for the past 7 years, and this one works the best. Has been on it for about 3 years now. It really helps her in school and with homework. She typically does not take it during summer break. We do not notice any side effects. We see a local Pediatrician that specializes in ADD/ADHD treatment. He has been good about trying different meds and doses until we found the right combination. We are now trying to figure out something for DS13 with PANDAS. He is currently trying intuniv. Kapvay did not work very well for him. Tics are a major concern for him as well. Good luck and I hope you find a med that helps in the long run.

I was reading a recent post about abx for OCD and it mentions a high 4000 mg does of Augmentin XR. Our DS has tried Augmentin several times, 1000 mg I believe is the highest dosage, but never the XR version. Should we try this? Was this the "Saving Sammy" drug of choice? And how high of a dose can we try? DS is 13, 78 lbs. He has run through a lot of various Abx over the past 10 months, since he has been treated for Lyme / TBI. We can probably get his Lyme doc to prescribe this. He still suffers from tics (main issue for 2.5 yrs), ADHD, some mood and anxiety issues, minor OCD.

We see Dr Corbier, too. We are in the Raleigh area. My wife is in a support group here, but not sure about the Charlotte area. I am sorry to hear about your son, but hopefully he will experience recovery. Some PANDAS kids recover quickly, some have a longer road. Our road has been long, and we are still on it.

Pandas16, will you now forego your tso treatment? I can buy ignatia on the internet, but don't know anything about it or possible interactions with abx. Did your homeopath caution about interactions of this sort?

This is an excellent article, and is worthy to be distributed to MD's when seeing one who needs the highlights of PANDAS/PITAND/PANS. Thanks for sharing.

Pandas16...this is kind of hard to answer accurately, going from memory...but at age 15, I had already experienced 75% reduction in symptoms I would say. PANDAS began at age 7 for me, so had it for 8 years by then. By age 18, 90% reduction. So, thankfully I had a great reduction in symptoms before adulthood. I had no treatment other than proph abx. I did not have recurring strep. I only remember one positive strep test as an adult, and don't think this caused an increase in symptoms. I do not think I fall into the PITAND category, like my son does.

tpotter...you are correct, I did not "outgrow" the genetic part of PANDAS, unfortunately. I wish that had been possible, believe me. So, it's safer to say I experienced diminished symptoms over the years. PANDAS became a non-issue for me until my kids got it. If anything, I am more aware of my lingering symptoms because of all the experiences and info out there on this forum and the internet. I would say the symptoms are certainly minor, not life-altering. (but what would I look like if I had not had PANDAS, cannot say) I had a moderate case of PANDAS. My daughter has a mild case of PANDAS, son has moderate to severe at times (also PITAND). Dd still has some OCD and sensory issues that we can attribute to PANDAS, and her ADD is most likely b/c of PANDAS. And she still has some tics, but they are not severe and not socially limiting. Ds has not hit puberty yet. We will see what this holds for him, and I hope it is the beginning of a time of lessening of symptoms for him. I believe my children will always have PANDAS, and they need to be aware of this if they have children. I agree to be leary of the "outgrow it" phrase from doctors. While symptoms may diminish with time (hopefully), it does not lessen the need for treatment. The medical community still needs to do more research and develp more solid treatment plans and options. We have treated ds's PANDAS aggressively with PEX and one IVIG and Abx. He is currently being treated for possible Lyme or co-infections with various Abx. We have seen some improvement, but very slow improvement...he still really struggles with tics all day long. Our dd has been treated with proph Abx to prevent strep and ADD meds. Dr Latimer suggested IVIG for dd, b/c of potential worsening of OCD. Our experience with IVIG for ds was a bit rough...she saw that and wants nothing to do wtih IVIG, she says she is "good". She will be 16 in Dec. So, we mainly concentrate out efforts and money on ds and hope that time does heal. It did with me.

Jen, our son experiences his worse tics at night as well. Do you have anything to help him relax at night? We have found clonidine to be helpful, and we also dose with benadryl on occasion with no side effects noted. He takes the meds around 7:00 or 7:30pm, and it helps him to relax and fall asleep by 9:30. He can still have some rough nights, but this routine does help. Try some benadryl tonight, if nothing else. From what I have read on benadryl, it can be given consistently with no harmful side effects. We used to see Dr L as well, and she prescribed the clonidine.

I believe I have PTSD to a certain extent. When we first saw Dr Latimer a couple of years ago, she said it would not be surprising if I have some form of this. Mainly because I had PANDAS as a kid, got past most of it...but am now dealing with both children with PANDAS. It has really been hard at times. Especially seeing my DS suffer like he has and still is. DD symptom's have been around longer, but are more manageable. I have to remind myself to be thankful and hopeful, but the last 2 and a half years have been tough. And it is very hard to relay these feelings to family and friends. Only those with PANDAS, and PANDAS/PITAND kids know what it is like. I have both. But, I am certainly more aware to be thankful for the good things and times, simple things. I don't need much to make me content...just healthy children getting past PANDAS.

I am awful in math as well. I wish I was better, b/c I could have graduated with a decent degree, but had to change to speech communication. My foreign language skills are currently not that great, but I did well in my foregin language classes in college. I was best in language arts, writing, etc. Both my children have PANDAS, and we have noticed their math skills dropping...especially ds13. This is discouraging b/c he was very good in math before onset of PANDAS at age 10. We know PANDAS has caused ADD/ADHD for him. He was fine before. For some reason, the hardest subject to concentrate on with PANDAS induced ADD/ADHD is math. I also stunk at chemistry. So, any type of quantitative problem solving has been a challenge. I somehow managed to get through minimum Algebra/Trig in college, with the help of a tutor. At least, I don't have problems balancing a checkbook, or understanding basic busines math. It's the upper level stuff that just took too much concentration.

We experienced the same denial with BCBS of NC, and our DS is even immune deficient. He has a diagnosis of Hypogammaglobulinemia from an immunologist based on blood test. They still would not approve IVIG, said there was not enough proof he needed it, etc. We did have PEX b/c they approved that. We did actually get one HD IVIG done after PEX...long story on how that got paid for.

I am of Irish descent. I have also watched Dr Schulman's videos. They are great. If she was closer to NC, I would have made an appointment with her a long time ago.

I think I'm a minority voice, but IVIG was a very bad experience for my son. It is the one treatment I would not do again, but I know others feel quite the opposite. I always always struggled with the decision and considered it a "last resort" (unlike pex, which always felt right and I have no regrets). So my only advice is to follow your gut. It will probably be more accurate than the advice of others, pro or con. LLM, we are right there with you. Our DS11 (now almost 13) had a bad experience with IVIG, whereas PEX was a breeze and most beneficial. I bet it took him 10 months to get over all the side effects, whether it was herxing or not, we do not know. Our insurance covered PEX, (80%). We are not sure if they would cover it again. We are in the middle of Lyme treatment and would like to get all possible Lyme / co-infections cleared before we do it again if needed. But IVIG...well, not so sure we would even do that again. The prescribing doc said we should try a lower dose, to prevent him from getting so sick. We are aware HD is the preferred method for PANDAS kids. He got 2 gr/kilo over 2 days...only got 1/2 bag in him on the 2nd day, so he received 1.5 total. He was so sick the 2nd day, they admitted him in the hospital that evening. So, what does this mean? Not sure. The only issue we had with PEX was it was short lived. We saw about a 40% improvement for a month, he then got the swine flu and went downhill from there. We hope this Lyme treatment works, have been at it for about 3 months and have seen some slight improvements since adding doxycycline at last visit. Now on monthly bicillin shots, augmentin and doxy. Within 48 hrs of adding the doxy, we saw improvements in personality and mood. Still major struggle is with tics, and ADHD, has some OCD. MMC, do you know how old the child has to be to get doxy? Because I have always heard for adults doxy and bicillin shots were the preferred treatment for lyme disease. I think my daughter, 10, is too young, although she is 90 pounds. What are the downsides to that treatment? Laure, not sure about an age limit on doxy. I would think age 10 and 90 lbs is fine...dosage will be adjusted by weight. I think DS is on 50 mg twice a day, fairly low dosage compared to his 1000mg of aug a day. He weighs about 77 lbs. No downsides noted yet. Have seen some herxing, but not much lately. His stomach is fine so far. On lots of probiotics and make sure eats before the doxy. Doxy does cause skin sensivity, so puts on tons of sun screen and is not in direct sun much...no issues so far. I personally know two adults on doxy for lyme treatment, so it is a preferred Lyme drug. We sure saw some improvements as mentioned just 48 hrs of being on doxy. maybe it was just the timing, and is getting better b/c of combination of abx. We sure hope so.

I think I'm a minority voice, but IVIG was a very bad experience for my son. It is the one treatment I would not do again, but I know others feel quite the opposite. I always always struggled with the decision and considered it a "last resort" (unlike pex, which always felt right and I have no regrets). So my only advice is to follow your gut. It will probably be more accurate than the advice of others, pro or con. LLM, we are right there with you. Our DS11 (now almost 13) had a bad experience with IVIG, whereas PEX was a breeze and most beneficial. I bet it took him 10 months to get over all the side effects, whether it was herxing or not, we do not know. Our insurance covered PEX, (80%). We are not sure if they would cover it again. We are in the middle of Lyme treatment and would like to get all possible Lyme / co-infections cleared before we do it again if needed. But IVIG...well, not so sure we would even do that again. The prescribing doc said we should try a lower dose, to prevent him from getting so sick. We are aware HD is the preferred method for PANDAS kids. He got 2 gr/kilo over 2 days...only got 1/2 bag in him on the 2nd day, so he received 1.5 total. He was so sick the 2nd day, they admitted him in the hospital that evening. So, what does this mean? Not sure. The only issue we had with PEX was it was short lived. We saw about a 40% improvement for a month, he then got the swine flu and went downhill from there. We hope this Lyme treatment works, have been at it for about 3 months and have seen some slight improvements since adding doxycycline at last visit. Now on monthly bicillin shots, augmentin and doxy. Within 48 hrs of adding the doxy, we saw improvements in personality and mood. Still major struggle is with tics, and ADHD, has some OCD.

AmySLP, Good point on the SC diagnosis. This is what I was diagnosed with back in '72 and as mentioned I was on long term Abx. (Although, my symptoms were really more like PANDAS than SC) I do wish the medical community could connect the two. The way I look at it, PANDAS is a cousin to SC...a close first cousin. I have a large extended family, with lots of first cousins on both sides. We were always at all the family functions and were allowed to participate and were loved and respected. PANDAS/PITAND deserves the same from the medical community...respect for a valid disorder that deserves attention and treatment options that should be covered by insurance plans. Hopefully, with researchers like Swedo and Cunningham, we will arrive there one day.

Mati's Mom...yes, I am fine after years on antibiotics. The first 10 years were intramuscular, so did not have to worry about gut issues. The last 2 years or so were oral Pencillin tablets, but never had an issue. I don't remember the dosage. Both of my children are on oral abx and we make sure they supplement with plenty of probiotics. I know doctors are cautious about long term use for several reasons, but from my experience, I never had an issue. I never had much OCD, mainly tics. I still have some tics but are not noticeable. I do think I have some OCD tendencies, but very minor...or, I have had it for so long, I cannot even tell I have a problem with it. I think I may have Lyme. I can name about half a dozen symptoms that can fall into a Lyme diagnosis. I am trying to decide how to pursue treatment, who to see. Will probably start seeing the same LLMD my son sees, start with Igenex testing, etc. So, I will not hesitate to go back on abx and maybe kill off Borellia and whatever else I may have...perhaps then I will see a decrease in the small amount of PANDAS symptoms I now have, along with other issues.