laure

Laure -- We are one of those families who uses abx, supplements, CBT/ERP AND low-dose psych meds to help our DS through the worst of the OCD. It has worked for us, but, as you know, there are as many experiences as there are kids! And, from our experience as well as the peer-reviewed paper by Dr. Tanya Murphy, I can tell you that if you decide to go the SSRI route, keeping the dosage very low is key. Sometimes, even "PANDAS psychs" don't fully grasp that, so we parents have to be very vigilent about it. Personally, unless your child is entirely nonfunctional, raging 24-7 or something along those lines, I wouldn't recommend Zyprexa; it is what most docs refer to as a "heavy hitter," and the side effects are not good (increased urinary frequency, dramatically increased appetite, weight gain, sonambulence, etc.). We used it, and I've read some other families have used it, for short periods in their darkest hours, many times just so their distressed kids can finally get some rest. As mentioned before, though, it's important to recognize that none of these drugs actually "treats" what underlies the OCD; they just treat the symptomatic behaviors. However, in our case, we've decided that having our DS be functional, happy, attend school, get through homework, enjoy his friends, eat regular meals, sleep well, laugh, excel academically, etc. is a fair trade-off for adding some low-dose Zoloft into his treatment regimen. The hope is that, as his immune system matures and he gets well-versed and more mature in using his ERP skills and tools, we can eliminate the Zoloft over time. All the best to you! Thanks for that advice Nancy! She is being very aggressively treated for lyme, babesia, and bartonella right now, plus a few viruses. She is absolutely making progress, but it is summertime and there are not many stressors. I usually err on the conservative as I consider any other treatment to alleviate symptoms, since she is high-functioning right now physically, and a strong enough student that, at this age anyway, (4th grade last year) she could get by without bringing books/homework home. Although I know her confidence academically would increase a lot if she could, because she hangs out with others who are perfect A students across the board, and school should ramp up this year. She usually fakes it well, but there were trying times in the spring where she didn't make it to school, or music lessons, or hockey practice, etc. because of contamination fears. It is a tough call since she gains a great deal of confidence from being very athletic, and weight gain and general fogginess that zoloft might create would then work against this end of her mental health...I guess we could experiment...waffling here...how much zoloft does your son take? My dd is 92 pounds.

I am wondering if SSRIs or other meds would help at all with OCD anxiety, once medical treatment for the underlying cause has begun to work. In Saving Sammy, Beth Maloney indicates that they used Stratera (ADHD drug) and Zyprexa (commonly used for Schizophrenia) for this purpose, with great success. I was going to ask my doctor about possibly using something to help with returning to school, and contamination issues which will likely be exacerbated there.

No, Apo-Hepat is the only thing she takes, 1/2 tsp 2 x a day. I didn't ask myself, but another mom did, and I think the answer was that her doctor feelis it is important to maintain the alkaline balance in the body, so we stopped the bentonite clay for now. No ill effects that I can see after 2 months. But then she also detoxes through all of the exercise she gets, which of course involves drinking a lot of fluids too, just guessing here.

I have not been on the forum both because Sophie is doing better (!) and we don't have much access to internet at our summer home in the mountains. I am cautiously optimistic because of this change - when we get back to school we will encounter the real tests - but slowly Sophie seems to be dropping the intensity of her OCD attacks, and is managing in a way that is not disruptive now. She is absolutely following the path Dr. N predicted, and has short herxy periods during the 4 day bursts of Artemisinin, but nothing major or too upsetting, and certainly nothing that keeps her from participating in her VERY active life here. (Last week she hiked 45 miles up the Adirondack mountains, some of those with a huge backpack). Gone are the 8 a day showers, even some days with no shower (yuk!) No question the herbal stuff she takes (Noni, Samento, and Apo-hepat for detox) has a clear impact on her behavior, and she is also on Mepron, Zithromax, and Cefdinar. We return to see Dr. N August 16th, for retesting at that time - he found babesia, bartonella, lyme, XMRV, and some other viruses in June. So...I believe we are on the right path and that she is slowly improving, and I may ask if it is time for CBT training or other meds that might help her to drop the OCD behaviors that might be more habit by now...or it may be too soon, unsure. Babesia takes 7 months to cure I am told. We have not followed up with our other doctors, and I have to say it is a relief to have just one doctor for now, and one protocol, and not trying to learn everything for myself... although they were there when we needed them and to get us started and for that I am very grateful. I can't imagine where we would be now were it not for the caring/giving/empathy of the folks on this forum, those who called me out of the blue to push me to lyme diagnosis and more aggressive treatment, and particularly some very smart, generous, and fun ladies who I met in the Rockies! Hope you are all moving ahead as we are!

So this number will tell you if your child currently has a high antibody count, meaning that she/he is fighting strep or possibly something else. In our experience the numbers were high enough to indicate treatment with antibiotics without question in everyone's minds, and keep us out of the psych ward! Neuropsych symptoms were my daughter's only symptoms, so the high anti dNase B count was a life saver.

I never felt a herx experience from milk thistle. It only seems to help DS feel better. I started taking it as well and my body just feels like it runs a little smoother. Nothing I can put a finger on - just feel "lighter". I feel a little sluggish if I skip more than a day or two. I am on the look out for something "better". Right now, we've stopped tindamax because it was too much and the herx and related inflammation seemed to trigger two months of Pandas stuff. That has finally settled down. But I know we'll need to push ahead, so we're going to need some sort of inflammation management. On the agenda for our LLMD appt in two weeks. I remember you listing milk thistle on the thread about supplements that were crucial to your treatment. It sounds like it cannot hurt, and I am afraid of any liver/gut damage. My dd10 is now 7 months on 4 abx, so there could be a lot of issues right now, really no idea why we are in such a horrible spot. We see Dr. N Tuesday, praying for some answers.

thanks for the suggestions. I am upping the frequency today....just too many tears to handle. I have milk thistle but was holding off on trying it because I was afraid of a herx-type reaction...not sure it could get a lot worse here though. Any negative experiences for you?

My daughter is almost living in the garage right now. All of her school supplies/sports equipment and apparel/instruments cannot come in the house, or then the house becomes contaminated. Only she can touch these things, and then she showers after any necessity to touch them. Every day a new thing takes residence in the garage. Also now she is worried that the outside of her mouth is contaminated, which is a little scary, so she is placing pills carefully inside her mouth without touching her lips...so if this extends to food, which she has mentioned in a passing way, we could be in big trouble fast. I give her 1 advil in the AM, and it seems to help, but would love to give them morning, noon, and night. Not sure of adverse affects, and also stomach issues, since she is on 4 abx. (Hopefully balanced with 400 billion probiotics, 10 bentonite clay pills). Any suggestions?

Hi Melissa, Forgive me if this has been discussed in the past, but lyme disease is also now being linked to eating disorders. This is a huge breakthrough for kids who have been treated for eating disorders as a mental illness, when in fact, it's cause is biological. Has he been checked for lyme through Igenex?

We have the same OCD issues, in that we cannot "rush" her or stand over her especially when we are trying to get somewhere. If we do, then she has to restart the whole process, wash hands again, etc. The huge effort in our house is to get her to school, and she is usually late, but we try not to comment on that...and I feel lucky that she does still go to school since so many on this forum cannot. And that 6 hours is a HUGE reprieve for her as well as for me. Really, these kids do not want to be "bad" kids. They want to please us. They want praise. They just cannot help that horrible internal voice that causes them to "misbehave" in our eyes, but in their brains is actually following "the rules". I know this because the brief 2 months she was well, she was a different child, and she even was able to talk about a lot of her OCD feelings and rituals. That really helped me to understand.

This is a really tough one, my husband struggles with it more than I do. We have learned not to discipline our dd10 by limiting anything positive (exercise, social opportunities, lessons) because exercise is physically healthy for her (especially helps the abx follow the neural pathway to the brain) and other positives help confidence, which is tough to build in a PANDAS child. Time out or in her room seems to be our best discipline from all perspectives. We put our foot down with the disrespectful, hurtful behavior, and let almost everything else slide. I can tell you that, when she is well, magically she does chores without complaint and is wonderfully generous and giving, but when her brain is inflamed, the entire family is disabled. She wore shorts to school all winter (we live in the Northeast) showered once every couple of weeks all fall, and never brushed her hair. Once she got on the right combo of abx, thankfully those things just disappeared overnight. I also count heavily on one advil in the AM. And sometimes in the PM...

I did not realize the turnaround was so unusual. She had been on zithromax for 2 months with some noticeable improvement in brain fog, etc but still pretty bad OCD, then Augmentin was added and the next day she opened her eyes and literally started pulling out toys she hadn't been able to touch in 3 months. Started taking showers again too. Over the next week everything was within the boundaries again. Those were 2 good months after that. I am surprised others haven't experienced this... Of course now we are back to where we were, in a way, just new adaptations. I am postponing the first Ivig until the end of August, so we can see if what the ART doc gives us to go on works.

Wow, thanks all, a lot to consider. Although we have spent hundreds of dollars on 2 Igenex tests, Quest tests, and blood draws, I don't believe parasites have been tested (not sure though, but other than the Igenex co-infection panel, I haven't noted anything else.) I wish the 3 bartonella tests would have shown positive and we would have a clear path. I wish she would have a herx and we'd have a clear path. I wish she had some physical symptoms and we would know more... but for now all we know is that antibiotics initially did heal her LITERALLY OVERNIGHT, so we had a wonderful December and January, where she seemed as surprised as we were that she could suddenly turn a door knob, play with toys, carry things home from school, nearly everything. So at least we know this isn't all in her head - as does she. That helps a lot. Can't wait to see ART doc and learn more. If he doesn't find a lot of stuff, then we will go ahead with the ivig (HD, probably 2-3 according to Dr. . She is on board for sure, yesterday I followed her to the top of the football stadium, where she was sitting on the edge of the ledge...so cannot go on like this for long.

Smartyjones, Thanks for your insight. I have heard similar stories from others who use ART, so we are very hopeful. Just wondering...we increased the probiotics and also began using bentonite clay at about the same time as the problems started, or maybe just before. How common is a negative reaction to the probiotics? I give her saccharomyces boulardi (25 bill in AM, 25 bill after dinner) and also NSI 15-strain brand 350 bill last thing at night.

laure -- sorry to hear things are rough. i have no insight into your question of ivig but wanted to comment on ART. we see a dr that does a kind of a form of ART and have had good success with ds6 and ds9. ds6 was more complicated and first son to show pandas symptoms. we were treating with abx and had longer illness before seeking help from integrative MD, who diagnosed muliple infections. after a little over a year of treatment, he is doing well, working on last infection. we'll reevaluate when cleared of infections -- not currently 100% but almost -- unsure if remaining issues are part of his personality - innate or "learned' after 2+ years of illness - or other effects such as auditory processing, again, innate or illness induced - ?. but, have seen good results with this path. ds9 has seen quicker results. had a few things i questioned b/c of younger son's diagnosis -- ie. extremely poor sportsmanship. last fall, saw big downturn, some classic pandas symptoms. integrative dr diagnosed multiple infections - strep, all TBI. he saw quick results with treatment. took a big downturn after i started a high level probiotic. improved when off that. through testing, dr said that probioitic was very bad for him, he registered much irritation with it. since off it, he's steadily improving. also, just found a new or newly uncovered virus -- more improvement when treating aggressively for that in last few weeks. i question the role of viruses in all this. i believe ann corson has some good info about virus involvement. i mention that b/c you mention no herx and no responce to quitting abx. i think the relationship btwn the bacteria and viruses is complex. our dr talks of the 'alpha dog' concept (this is all my interpretation) that you may have many pathogens but one is presenting stronger and if you rid of that, another may gain strength and cause trouble. our theory is to rid or at least downgrade all the troublesome infections. lately, i have wondered if some of ivig success may be doing that b/c some of the infections are ones that are common but don't cause such extreme problems for the general public but for some people they are extremely troublesome. good luck. i just wanted to share our story of a form of ART that has seemingly been a good path for us. Thanks for your insight. I have heard similar stories from others who use ART, so we are very hopeful. Just wondering...we increased the probiotics and also began using bentonite clay at about the same time as the problems started, or maybe just before. How common is a negative reaction to the probiotics? I give her saccharomyces boulardi (25 bill in AM, 25 bill after dinner) and also NSI 15-strain brand 350 bill last thing at night.

Update on dd10 after Dr. B visit Tuesday. Quick background: She is on 4 antibiotics - augmentin, zithromax, bactrim, tindamax (weekends). She is positive for lyme, and Dr. J suspects bartonella as well. Her only symptom now is pretty intense OCD. She doesn't herx at all. She had no response to quitting all abx for 3 days last week. We do detox, probiotics, the whole gamut. At this point she is scheduled to see Dr N for ART in mid-June. Hoping for a miracle. Beyond that we are considering Ivig per Dr. B and Dr. J. Her anti dNase B titers are still high (980) and ASO slightly down (190). Dr. B believes we will not see relief until the dNase B titers come down. She has been treated for lyme since December 1st. She had a brief honeymoon in Dec and Jan, then all symptoms returned gradually. Questioning if after all of this lyme treatment, perhaps Ivig could help? Could it hurt at this point? She is suffering socially and relationally because of her OCD/regression/oppositional defiance. If there is permanent damage being done to her brain, obviously we want to stop that in its tracks. Sorry so disjointed - I believe I am suffering brain damage at this point... Thanks for any advice.

Good for her, though, to be able to get up and go everyday. It must be very difficult for her. She is a strong child When she is at school does she have the same behaviors or is it just at home? She is a pro at hiding it, according to her teacher. She occasionally drips her hands on papers because she cannot dry them on a towel. She has it all planned out, when she washes her hands, how much time to allow for that, showers right after school before she can do anything...and she cannot bring any homework or books home. Luckily she seems to get it all done in school. We are pretty clueless though, without any notes/menus/permission slips/ etc ever finding their way home to us! Her teacher (who is amazing) says school is likely a "safe" place for her to forget about all of this because she believes no one knows, and teacher feigns ignorance and looks the other way when she is late/in bathroom/ washing/ doing homework during class. She is a Godsend.

Resumed all treatment today. Sad that we saw no good come of going off abx...I called Dr. B's office yesterday, and didn't hear back, but I believe her blood work was not yet in.... today I emailed him asking for clindamycin for the strep if those numbers are still high - which I believe they likely are. How awesome it would be to have strep out of the picture and just be treating lyme. Unfortunately no one knows where the strep is, no symptoms anywhere. I would have her get a T&A in a minute if it were there. She still gets out the door to school, albeit late after 10 hand washings during which we cannot be present (have lots of magazines in the car where I am banished to in the morning), then have to witness convoluted door opening, carrying violin and lunch box and backpack without touching handles of any, it is all crazy. She is very brave (or just oblivious) going out in public every day like this. I am proud of her resilience.

Hi Kathy, She has been on bactrim since April 1st, but the backsliding began in early Feb. She was on Zith, Augmentin, and tindamax (weekends) before that. Personally I believe the strep is causing the problems, and until we can manage to eradicate that, her OCD symptoms probably won't go away. Believing this is all a herx has just delayed the discovery and treatment of strep. Dr. B switched her Augmentin for Vancomycin in late April to hopefully address any resistance to the abx, but clearly hasn't helped. She has another appt with him next Tuesday, and new blood work in, so maybe we'll get a lead. I haven't really researched, but how do the PANDAS folks who constantly get strep while on 4 abx ever get rid of it? Or don't they?

30 hours and worse, actually. Please watch for post tomorrow. Tomorrow AM will be 48 hours since last abx (monday AM) and she is deteriorating...ref at softball game was fat and had tattoos, so she couldn't pitch for beans, and made us leave (got a ride home with friends). So she was licking her hands the entire game to "stay clean", then couldn't eat from those hands in our home, lest it become infected. Can't kiss us either because her mouth is now contaminated. This is a new level of OCD. I gave her 20 bentonite clays and an advil and a benadryl and sent her to bed. Praying for tomorrow to be better...what does it mean if it is not??????

Are you supplementing anything for the depression? My son had it quite bad, and I decided to try SAMe. Its been around a month or so and I think it has help some. Maybe enough of the edge to not let it overtake him, you know? I give it with acetyl-l-carnitine. Started with 200mg a day. It doesn't hurt that its a fair detoxer as well. We use advil daily in the morning, and Synergy multiple vitamin has coQ10, ALA, resveterol, quercitin, B12, so covers a lot of bases for mood swings. The contamination OCD is what makes her so miserable. She has tried to explain Lyme to her friends, but I think they (and their parents) still judge her/us.

So coincidental, Denver LLMD office just called with a few cancellations today...sorry we can't charter plane that fast!!

Thanks all for advice... she will take bentonite clay pills 10 at a time. Since she is already taking those I will leave them in. I may stop the probiotics since she has no belly troubles except increases in abx, and has been tolerating those well lately. Needs to stay on benadryl another few nights for pretty bad seasonal allergies. I also give her a sudafed in the morning so she can get through the school day without annoying people. She has always done well with that too. I'll keep posting, this should be interesting...

Dd10 left the computer the other night and we found her history of topics was about ways kids commit suicide. While we don't believe she will act on this, still it is disturbing. She is tired of being crazy, and has no faith in her treatment. I can say she is fully back to square 1, or darned close, after 5+ months of Lyme treatment. I am dropping everything for a few days, but needs to stay on something for allergies. Will watch for improvement, but not expecting much since aso and anti DNase b titres probably still high. Should we stay on bentonite clay? Probiotics? Bur bur? Want to do the bare minimum so as to not confuse the issue. Thanks for help.

Actually we began in December when she first saw LLMD in Albany. We tried skipping it this weekend for the first time, to no avail.