momindc

My 12yo dd has been battling pandas/lyme & co. now for about 4.5 years and she has been on pulsed antibiotic therapy (a cocktail of a three different ones at a time) for the last about 3 years. She has had ups and downs but was generally at about 75% overall while on the antibiotics until she got c-diff this last fall and had to take an antibiotic break (other than the flagyl to treat the c-diff) for a couple of months to get her better and give her body a break. Her tics (one of her main symptoms from the very beginning of our pandas/lyme journey) gradually got worse over the break from antibiotics, as did the back/legs and eventually neck pain which have been a rather new symptom over the last year or so. We hadn't seen neck pain of this severity since the onset of the pandas/lyme 4.5 years ago - interestingly a neck tic that we also hadn't seen since the onset also came back. As such, we started back up on antibiotics again but upped the doses as our llmd felt that dd had been on antibiotics for so long (most kids s/he sees have been able to get off after this duration of treatment) so perhaps we should go at it more aggressively. DD was started three weeks ago on doxy for the first time ever, along with azythromycin and rifampin which she's used in the past. A couple of days after starting back up on these antibiotics, dd started experiencing what we (and the llmd) believes is a herx reaction - intense neck/back/leg and feet pain; general malaise; intense hot flashes and sweating (she's never had these symptoms previously); and tics like we've never seen before - neck jerking, shoulder tics, facial grimacing, etc. The frequency of the tics is intense. Yesterday she had to leave school for the first time ever because the pain and the tics were so bad. This is a kid who never complains and who has never missed school because of her pandas/tics. Last week LLMD had us up our epsom salt baths and the lemon water for detox, and also add Burbur and Pinella drops. Given that we've never seen a herx like this before, llmd believes we might finally be killing the lyme & co. off with the addition of doxy and the increased dosages of the other antibiotics. Because of this llmd wants us to stay on the protocol and not make any changes, but my kid is miserable with the tics, neck pain, etc. (hot flashes improving, we think, but she does still have them). Any thoughts? Anyone experienced a herx like this? Anything you might suggest for detox that we're not doing? Or perhaps the Burbur and Pinella could be making things worse? We've never used the B & P until last week. Really appreciate any insight/advice you might have!

Follow up question. If she is sensitive to mold toxins, how do you treat that?????

I've only posted a couple of times over the last year or so, so for a bit of background DD age 10 was diagnosed PANDAS by Dr. L (in MD) in the spring of 2013. In the fall of 2013 she had her tonsils out and in November 2013 continuing through today, she's been under Lyme + coinfections treatment (pulsed antibiotics). DD's symptons started literally overnight in March of 2012 - numerous motor tics, hyperactivity, urinary frequency, inability to sleep, anxiety and moodiness. It wasn't until the fall of 2013 that it was pieced together that a tic bite that she got in the fall of 2011 on her abdomen while at a b-day party, which we took her to the pediatrician for about two months after she got bit when she got a rash near the tic bite and she hadn't been feeling well, could be related to her symptoms. Her lyme testing at that time only showed 2 bands of the 5 necessary to be, I guess, positive according to the CDC's standards, so our pediatrician did not prescribe antibiotics. Fast forward to today, DD is doing much, much better. I would say about 75-80% better. Some residual motor tics which flare more at certain times than others, and still some emotional issues. I'm writing because I know many of you have dealt with finding the pieces of the puzzle that may be left in order to get your kiddo to 100%. An interesting observation: both during the summer of 2013 and the summer of 2014, we traveled as a family to a friend's beach house for a visit and stayed several days. During the summer of 2013, while we were there, DD's motor tics and hyperactivity were through the roof - like we had never seen them. And then when we went a a couple of weeks ago, her tics were really bad again - but the other symptoms were ok. Once she got back home after her visit this time, tics almost gone again. The beach house we visited is lovely but smells very, very musty. You can smell it right when you walk in. I know it has had water damage in the past, which they have taken steps to fix - but you've got to wonder. I know nothing about mold and how it relates to PANDAS and lyme, but it sure seems odd that DD's tics go crazy when she's in this particular house - especially that it happened again this year when she's otherwise doing so well. Thoughts? If there is a sensitivity/allergy, can we treat this somehow? We want to get her to 100%! Many thanks for educating me! MominDC

Thank you both for the very thoughtful responses. I am comfortable with the pulsing plan as it was explained to us and I mis-typed above, the pulsing plan for now is: 3 cycles of the following: Week 1, MWF ONLY - Omnicef 2X/day, Azythromycin 1X day, Bactrim 2X/day; Week 2 - same as Week 1 but add Flagyl 2X/day on Th & Fr only; Week 3 - OFF. I understand that the pulsing works very well for the majority of their patients and the protocal will address all coinfections over time.

DD (9 1/2) was diagnosed with PANS/PANDAS in June of this year (2013). Cunningham test #'s were "off the charts" according to Dr. L. She has suffered with motor tics that started suddently out of the blue in March 2012. We've also dealt with hyperactivity, anxiety, frequent urination, bedtime issues and irritability. DD was put on antibiotics in June (she's been on Omnicef, Augmentin and now Bactrim - one at a time) to which we saw no really good results, and then we had her tonsils/adenoids taken out at the end of Sept. (2013). Tonsils were cultured - no strep or staph, but h. influenza. Almost six weeks post op and she's really no better than before, only the hyperactivity seems to have improved. She's about 10 days into a 2-week steroid burst following the tonsillectomy and her tics are really bothering her (neck tic is the worst) and her inability to fall asleep at night is also a problem. I hate seeing my kid suffer with all of this. Hubby and I attended the conference in Providence this past weekend and found it to be very informative. On Monday (2 days ago) we took DD to a lyme specialist as we wanted to see if we might be missing something on that front. Her Western Blot test ordered by Dr. L in April 2013 was all negative, the only thing that even stood out a little from all her bloodwork that was ordered was a Mycoplasma IgG of 3.73, considered positive. Docs were not worried about that, they said, as it just indicated a past infection. In pulling together DD's health records for the lyme specialist, I pulled out a previous lyme Western Blot test from the fall of 2011 and doctors notes that went with that test. On 9/25/11 we took DD to a birthday party in MD at a nature center. Either later that night or first thing the next morning we found a tick on her abdomen. We removed it with tweezers and it appeared we got it fully out. It was red around the site for a few days but then improved, no bullseye rash. About 5-6 weeks later, DD developed a dry patch on her abdomen which did not itch or hurt. Around that time she also developed a headache, cough and diarhhea. We asked Ped. at that time to look at the dry patch and she suggested lyme testing just in case, since she had previously had a tick bite there just weeks earlier. Ped. called a few days later to tell us Western Blot test was negative. However...looking at the 11/8/11 Western Blot test results, we now see that while it was considered negative, lyme band 23 did show as "present" (IgM P23). By the time we got to lyme specialist on Monday of this week, she had already poured over all of DD's medical records. It is her belief that DD should be treated for lyme given that band 23 showed up and it was 5-6 weeks after a known tick bite which then had a rash of some sort show up - and her symptoms started in March of 2012, 5-6 months after tick bite. We asked why that band - or other bands - didn't show up on the testing in April of this year (2013) and she said that the Western Blot test is not very reliable. It is her belief that we don't even need to do further testing, she feels we should treat lyme & coinfections given past test result showing band 23 and symptoms. This specialist studied under Dr. J and seemed to really know a lot about the PANDAS/PANS and lyme connection. Specialist has suggested pulsed antibiotics - 3 cycles of the following: Week 1 - Omnicef 2X/day, Azythromycin 1X day, Bactrim 2X/day; Week 2 - same but add Flagyl 2X/day on Th & Fr only; Week 3 - OFF. Thoughts on treating based on that Band 23 showing up back in 2011 and symptoms alone, i.e., without further testing? She said she does not need to see further testing (we asked about Igenix) and explained that the tests are not so reliable. She feels given the past band 23 showing up and DD's symptoms and inability to show improvement from prior treatments tried, we should just proceed with the treatment of lyme and co-infections. She has also suggested melatonin and that we get DD's Vitamin D levels checked. Interested in thoughts/insights as we are new to the lyme world. Thanks! momindc

Just bumping up my post below from last week to see if anyone has any thoughts or insights on the H. Influenza and/or where we're at 3 1/2 weeks now post tonsillectomy? Would love any thoughts/insights. Thanks! momindc

I'm just bumping up my post below from last week to see if anyone has any thoughts on this - on the H. influenza or where DD us at 3 1/2 weeks now post tonsillectomy. Would love any thoughts/insight. Thanks!

DD's tics are still bad - even worse sometimes than before the surgery. And now she is having an incredibly difficult time getting to sleep at night. It's taking her about 2 hours or longer every night to fall asleep. She gets upset that she's having trouble getting to sleep and then works hersulf up into a tailspin - frustration, crying, etc. DD is 9 and always sleeps in her own bed, but she's slept with us the last two nights just so we could help calm her down enough until she was able to doze off. This difficulty falling aleep is all new following the tonsillectomy. And she is very sensitive to any light at bedtime. She now can't stand the little bit of light that shines through her curtains from outside and says it prevents her from falling asleep. Once DD falls alseep, however, she stays asleep, thankfully - it's just getting her to actually doze off. The surgeon who removed DD's tonsils called us on Saturday to report that while they didn't find any staph or strep in the tonsils, H. Influenza did show up when they cultured them. Given this, he changed DD's antibiotic from Augmentin to Bactrim as he said should there be anything left post surgery, Augmentin doesn't work for H. Influenza, but Bactrim does. DD's tics are as bad as ever with the antibiotic change and the sleep issues have gotten worse since switching the antibiotic. Anyone else found H. Influenza with a culture of tonsils? Any other thougths? I feel like things are getting worse post surgery. DD is maybe less hyper than before surgery, but the tics are still bad (maybe even worse) and now we've got the sleep issues. And she seems more emotional and easy to cry. We don't see Dr. L until 10/29. Surgeon (who works with Dr. L on tonsillectomies for PANDAS kids) wants us to keep DD on the Bactrim until we see Dr. L. Thanks, momindc

DD (9) got her tonsils out 1 week ago today. All was good the first couple of days and then the last 3-4 days she's experienced a tic explosion - bending and stretching tics that are really bothering her. We don't see Dr. L until late this month (Oct) as she likes to see patients 5-6 weeks post tonsillectomy. Her office tells me that tics and other issues can get worse at first following a tonsillectomy but that we should see improvement over the next several weeks and that tics are always the last symptom to go. We do not have the culture results yet from her tonsils so we don't yet know what they found in there, if anything. We're trying to be patient but I hate to see my kid upset. Anyone else experience this????? Thanks, momindc

Who is your lyme doctor in DC? Thanks!

is IV abx something that give standard? I don't recall the Dr. saying anything about IV abx but I'll ask. Thanks!

yes she is on antibiotics and has been since some time in June. First she was on Omnicef and then she was switched to Augmentin because the Omnicef didn't seem to be really working.

A little background first... My now 9yo daughter had a sudden explosion of tics (no history of them, no family history of tics) back in March of 2012 just a few months before her 8th birthday - neck jerking, abdominal jerking, finger sniffing, etc. Our pediatrician immediately swabbed her throat and ran some titer tests - all checked out fine. She concluded that they were just tics and would hopefully go away, but referred us to a neurologist since the tics were very bothersome to DD and to us. Needless to say, the tics did not go away, and my kid who was also never hyperactive before, started to become very hyperactive at times, has had bouts of frequent urination, some anxiety and lots of irritability and anger. She was put on tenex and then clonidine to help with the tics - both helped some for a while anyway, but she would still have terrible bouts of tics that were very much bothersome to her (and us - hate to see our kid having a hard time). Back in March of 2013 neuro gave us a prescription for clonazepam as well and said she could use that on an as needed basis in addition to the clonidine. We did use it from time to time but it makes her so tired. Needless to say, we do not like having DD on any of these meds which make her tired and cranky, and my gut was telling me that maybe we're missing something. DD was never diagnosed with tourette's as no verbal tics, but rather just a tic disorder - and we were told that hyperactivity is common with tics, etc. But my gut was telling me to get a second opinion, that maybe something else was going on, so we made an appointment with Dr. L. We saw Dr. L for the first time back in April 2013 and she spent about two hours with us talking through in detail with us about DD's medical and behavioral history. She said then that she suspected that this might be a case of PANDAS given sudden onset of tics, the bouts of frequent urination, the hisory of anxiety, the history of about 4 or 5 strep infections from about 2007 - 2010, etc. Dr. L asked us to do some bloodwork and to also to do the Cunningham test through Moleculara Labs after the lab opened up. We did all that and in June 2013 had our follow up appt. with Dr. L to get our Cunningham results and discuss a plan. DD's Cunningham results were "PANDAS/PANS highly likely" and her specific test results were: Dopamine D1: 1,000 (normal is 500 to 2,000) Dopamine D2: 16,000 (normal is 2,000 to 8,000) Lysoganglioside: 160 (normal is 80 to 320) Tubulin: 1,000 (normal is 250 to 1,000) CaM Kinase II: 195 (normal is 53-113) DD was put on Amoxicillan in June 2013 and then Augmentin about a month or so later when we weren't really seeing results from the Amoxicillan. We maybe saw some improvement initally with both antibiotics with tics and mood/hyperactivity, but the tics always come back full force when they are waxing. Last week we had DD's tonsils and adenoids removed at Georgetown Hospital. The first 48 hours of recovery were rough for DD but she's doing much better now. No tics the first couple of days so we were very hopeful....but now they're back and really bothering her again. Any thoughts on where we're at at this point? The surgeon was going to culture DD's tonsils and adenoids and let us know if there was any strep or other organisms in them but we've not yet gotten those results yet. Do people that have seen a good response from a tonsillectomy typically see improvement over time or right away? I feel like no matter what we do we're not getting to the bottom of this. DD's tics really bother her and we have a prescription from her initial neuro for Topomax which would be the next step he would recommend as far as medication if we feel DD really needs relief from the tics. I'm wondering if we should go ahead and give it a try now for tic relief or wait and see if we see improvement over time from the tonsillectomy first. DD is continuing on the Augmentin. We see Dr. L again at the end of the month so we'll obviously discuss all this with her but I'm wondering if any of you all who have been down this road have any thoughts at this point for us? Thanks - you guys have been very helpful! momindc

What type of therapist should one look for. Any recs in the DC area?

How do you know if your child is a good candidate for CBIT for tics? Thanks for any thoughts/insight.

Any recs? Thanks!

We've not seen these movements, but along these lines, on addition to my DD's motor tics, she's also constantly doing cartwheels and flips, and likes to lay on her back with her feet in the air. Anyone else dealt with these types of movements? Not sure if they're tics or what.

OP here just checking back in for some more advice. DD has been on the Augmentin now for about 3 1/2 weeks. Her overall mood has been improved since being on the omnicef and now augmentin which is good but her tics are bothering her again (maybe some improvement in the tic dept. overall, but not much - neck tic back and bugging her) and her hyperactivity has been bad. We see a dr. at Georgetown tomorrow morning at Dr. L's request to discuss the merits of taking her tonsils out and then are supposed to check back in with Dr. L. I feel like we're not seeing enough improvement with Augmentin as we should at this point? Thoughts? Suggestions? We've not discussed lyme with Dr. L beyond DD's Western Blot testing which Dr. L ordered which was all negative, but would you suggest to dual track here by also trying to get in with an LLMD for further testing to see if lyme could be an issue? DD was bit by a tic back in the fall of 2011 and the tic nightmare began in March 2012, although it did not appear that she had a bulls-eye develop or anything. Feeling frustrated today as I don't feel like we're making much progress. Thanks for your thoughts. If lyme is worth looking into, anyone have a recommendation for a LLMD in the DC area?

OP here. Thanks for the replies. Unfortunately we did not catch and treat this super quickly. DD's tics and other issues started abruptly in March 2012 but after seeing docs at both John's Hopkins and Children's Hospital in DC we were told she just has tics and hopefully she'll eventually grow out of them. They were so bothersome to DD (in particular the neck and abdominal jerking) that we treated, against our wishes but to help get her relief, with Clonidine and then later added a small dose of Clonanzepam as needed only for flares. After terrible bouts of frequent urination in Feb. and March and my feeling like we needed to get a second opinion on meds, we ended up making an appt. with Dr. L, who at the time we did not know was a PANS/PANDAS specialist. Dr. L suspected PANS right away and asked us to do bloodwork and to take the Cunningham test. That all took time, and after DD's Cunningham results of "PANS/PANDAS highly likely" and a review of all medical records showing history of multiple strep infections, etc. since about age 5, we got the PANS/PANDAS diagnosis in June. I wish we had treated earlier. This all leads me to the question of - given all that - based on your experiences of maybe also a somewhat late diagnosis, what might we expect to see in terms of the course of improvement with antibiotics? With motor tics in particular? You all are so helpful - thank you for any thoughts! We are pretty new to this all.

My 9yo daughter, under the care of Dr. L, started Augmentin 500mg 2x/day 6 days ago. Previously she was on Omnicef for about 4 weeks but got strep during that time, hence the switch to Augmentin. Prior to the strep she seemed to be responding well to the Omnicef. DD was diagnosed PANS in early June 2013 by Dr. L and her main PANS symptoms are motor tics and hyperactivity, but she does have bouts of frequent urination and anxiety from time to time. DD's recent Cunningham test results were "PANDAS/PANS highly likely." 3 days ago (3 days into the Augmentin), DD contracted a stomach virus that a couple of her friends also got. Headache, stomach aches, vomiting. My ? is - in how long should we expect to see improvement with the antibiotics? Especially given that we've had to deal with both strep and a nasty stomach virus within the last month? DD's tics seemed to have ramped up again following the recent stomach virus a couple of days ago, and her hyperactivity also seems to be back. Also, given Cunningham results of "PANDAS/PANS highly likely" and doctor thinking that this is PANS, we feel it most likely is, but hate that we can't be 100%. Any insight appreciated!

We'll definitely give it longer on the Augmentin and are hopeful that things will get better, I just wanted to see if others have also experienced this same thing. No diarhea or nausea so far, but rather headaches and some stomach hurting issues. Dr. L did not say anything about probiotics. Should I ask her what she might recommend as far as probiotics if the side effects continue to be an issue?

My 9yo daughter, under the care of Dr. L, started Augmentin 500mg 2x/day on Sunday night (3 days ago). Previously she was on Omnicef for about 4 weeks but got strep during that time, hence the switch to Augmentin. She was diagnosed PANS in early June 2013 by Dr. L and her main PANS symptoms are motor tics and hyperactivity, but she does have bouts of frequent urination and anxiety from time to time. DD's receny Cunningham test results were "PANDAS/PANS highly likely." My question is regarding the Augmentin. DD has had headaches and some stomach hurting issues the last two days. I know both can be side effects of the Augmentin. If that's the case, will this improve over time as her body gets used to the medicine? Any advice on what might help? Anybody have to stop using Augmentin due to side effects? If so, what did you switch to? TIA. Appreciate the insight!

Immunoglobullins G, A, M IGG - 999 IGA - 122 IGM - 47 IGE - 9 Lyme Disease Ab - Wblot IgG/IgM Lyme Disease Ab, IgG WB - Negative (reference range: Negative) Lyme Disease 18 kd IgG - Nonreactive Lyme Disease 23 kd IgG - Nonreactive Lyme Disease 28 kD IgG - Nonreactive Lyme Disease 30 kD IgG - Nonreactive Lyme Disease 39 kD IgG - Nonreactive Lyme Disease 41 kD IgG - Nonreactive Lyme Disease 45 Kd IgG - Nonreactive Lyme Disease 58 kD IgG - Nonreactive Lyme Disease 66 kD IgG - Nonreactive Lyme Disease 93 Kd IgG - Nonreactive Lyme Disease Ab IgM - Negative (reference range: Negative) Lyme Disease 23 kD IgM - Nonreactive Lyme Disease 39 kD IgM - Nonreactive Lyme Disease 41 kD IgM - Nonreactive Mycoplasma pneumoniae Ab - IgM M pneumoniae IgM Ab - 524 Reference range: <770 Unit: U/ml (NOTE) Reference range: <770 U/ml Negative 770-950 U/ml Low positive >950 U/ml Postive Mycoplasma pneumoniae Ab - IgG M pneumo Ab (IgG) - H 3.73 (THIS IS THE ONLY RESULT HIGHLIGHTED ON THE LAB REPORT) Reference range:<=0.90 Unit: ISR (NOTE) Reference range: <=0.90 Negative 0.91-1.09 Equivocal >=1.10 Postive A positive result indicates that the patient has antibody to Mycoplasma. It does not differentiate between an active or past infection. The clinical diagnosis must be interpreted in conjunction with the clinical signs and symptoms of the patient.

Just realized that Dr. L may not have had the results of those tests when we met with her - it appears the lab may not have sent them on. Have just sent them to her to be sure and to our ped as well. Results (typed in) are below: Immunoglobullins G, A, M IGG - 999 IGA - 122 IGM - 47 IGE - 9 Lyme Disease Ab - Wblot IgG/IgM Lyme Disease Ab, IgG WB - Negative (reference range: Negative) Lyme Disease 18 kd IgG - Nonreactive Lyme Disease 23 kd IgG - Nonreactive Lyme Disease 28 kD IgG - Nonreactive Lyme Disease 30 kD IgG - Nonreactive Lyme Disease 39 kD IgG - Nonreactive Lyme Disease 41 kD IgG - Nonreactive Lyme Disease 45 Kd IgG - Nonreactive Lyme Disease 58 kD IgG - Nonreactive Lyme Disease 66 kD IgG - Nonreactive Lyme Disease 93 Kd IgG - Nonreactive Lyme Disease Ab IgM - Negative (reference range: Negative) Lyme Disease 23 kD IgM - Nonreactive Lyme Disease 39 kD IgM - Nonreactive Lyme Disease 41 kD IgM - Nonreactive Mycoplasma pneumoniae Ab - IgM M pneumoniae IgM Ab - 524 Reference range: <770 Unit: U/ml (NOTE) Reference range: <770 U/ml Negative 770-950 U/ml Low positive >950 U/ml Postive Mycoplasma pneumoniae Ab - IgG M pneumo Ab (IgG) - H 3.73 (THIS IS THE ONLY RESULT HIGHLIGHTED ON THE LAB REPORT) Reference range:<=0.90 Unit: ISR (NOTE) Reference range: <=0.90 Negative 0.91-1.09 Equivocal >=1.10 Postive A positive result indicates that the patient has antibody to Mycoplasma. It does not differentiate between an active or past infection. The clinical diagnosis must be interpreted in conjunction with the clinical signs and symptoms of the patient. XXXXXXXXXXXXXX Thoughts? Thanks!

Thank you all for your thoughts. Appreciate it. It does make you wonder why so many of our kiddos in the DC area are plagued with these issues. Dr. L is prescribing the antibiotic, but our pediatrician is advocating that it be amoxicillin because she believes it would give DD the best shot at resolving symptoms, assuming this is strep issue. Ped says that penicillin or amoxicillin is the antibiotic of choice to treat strep infections with very little if none documented resistance, and that if someone is allergic to penicillin or amoxicillin (which DD is not), she said they would then use keflex/cephalexin or clindamycin. Thoughts? Ped is a trusted part of the team who only wants to maximize DD's chance of recovery, as does Dr. L, but ultimately we'll defer to Dr. L as I know she's been dealing with PANDAS/PANS for a long time. I just thought I would reach out to you all as well for your thoughts since you've walked in my shoes already with your kiddos, and you might also have some thoughts/insight that we should take into account. Thanks!