awilliams74

Dr. Buckley in Florida?

Dr. Trifiletti will do Skype or phone consults. Although he has a new policy patients must be seen in the physical office once a year. We have done Skype up until now and are getting ready to go into the office in NJ.

Can you tell me how your kids did with allergy shots? Allergies are a huge trigger for our DS and the local allergist wants to start allergy shots for that reason, but she is not really PANS knowledgeable although she is PANS friendly. Also, how did your take your child off allergy meds for testing (DS takes singulair and levoceterizine and sometimes that's not enough)? We also see Dr. T. Thanks!

Adderall sent OCD into overdrive here, MD said no more stimulants after that.

DS's psychologist recommended low dose ability (2 mg with goal of 5 mg) off label to help with focus (as with most PANS/PANDAS he did not do well with stimulants, Zoloft, etc.). We had to stop it within 2 or 3 weeks still at the 2 mg dose because of side effects. His speech became very garbled and when we called it quits he was near tears in speech as he felt there was something in his throat and he sounded as if he had rocks in his mouth - pediatrician confirmed there was nothing physically there. The symptoms stopped when we stopped abilify. We had high hopes for this med and had to get the psychologist, a psychiatrist he worked with, and our pediatrician all on board to discuss with insurance for them to cover as they initially would not cover. To be fair, DS had an underlying untreated mycoplasma infection we were unaware of at the time.

L-lysine - any recommendation on dose? Thanks, DS is 11 yo and 90 lbs. Thanks!

I'm not sure if this will help, but we were dealing with throat clearing since the beginning of allergy season, along with some mild movement tics. Both the pediatrician and allergist believed it was a combination of a tic and post-nasal drip. The throat clearing here was an every day occurrence but not constant - DS would go for several hours with throat clearing and then nothing for an hour or two (did not occur when happily pre-occupied or sleeping). We had been using Xlear nasal spray for a few months in hopes of staying ahead of an allergy induced flare. Another mom on one of the PANDAS/PANS FB pages recommended ACS Nasal, Extra Strength. I believed I ordered it through amazon (it's hard to remember, we've tried more than a few supplements/treatments). DS's throat clearing stopped within 24 hours (and we only started with 1 spray/day). We continue to use Xlear 2 x/day to try and keep germs out, and we use ACS nasal 1 spray twice a day. It's only been two weeks but so far it's been great. The rest of his motor tics are still present so maybe it was more nasal drip? But the throat clearing would increase with any anxiety. One of our cheapest and most effective supplements trials, I think it was around $15-$20.

I sent you a PM.

Biaxin for mycoplasma is the only thing that finally rid our DS of OCD (per DS). To us it is a miracle drug!!! Local MDs went on a strep infection trigger assumption and treated with azithromycin during infection/flare, Keflex for prophylaxis. He did CBT, etc. and at best was able to get is OCD down to a 1-2 out of 10 (10 being his initial onset and unable to leave the house due to OCD). Further testing revealed mycoplasma and chronic sinus/pneumonia infections. Biaxin finally brought his OCD to a zero. He still struggles with some ADHD and mild anxiety, but it's a slow progress (and I'm thrilled with any progress, especially now OCD is gone). Good luck, I hope it works as well in your family.

Good luck, I know how disheartening and exhausting for everyone flares are. I still hold my breath with every little step over a crack, throat clearing, etc.

His first year of treatment and prophylaxis for strep had quite a few flares. He would reach 80-85% recovery at best. I considered a flare to be an increase in symptoms, mostly anxiety and OCD, never as bad as the initial "fall of the cliff" but some were pretty close. The "blip" I have seen previously described as only a mild increase and in our DS's case, it was only 2 days and we could pretty much talk him through most of it. I don't believe his true recovery started until there was further testing which revealed an active mycoplasma infection (for how long who knows) and chronic sinus infections - this was over a year into treatment with azithromycin for flares and Keflex for prophylaxis for strep. Antibiotics for sinus/mycoplasma started (biaxin was the only thing to rid him of OCD - the other antibiotics and CBT made it manageable except when in a flare, biaxin got rid of it). I am holding my breath this allergy season though since that is a piece of his puzzle and has caused flares in the past. Our biggest relief from flares prior to the mycoplasma discovery, was when our entire house was treated for strep (and retested after), including the cat - he wasn't retested though:-). Then he was free from flares except the "blip". It's getting late, I hope this makes sense.

DS 11 definitely flares when around others with strep. At least twice in our house, it was the only reason we tested the rest of us and found strep. His last "blip", he was able to tell us someone at a party at our house must have been sick since his OCD was acting up, but he knew it wasn't a family member since it was mild. During a flare our MDs have always increased his antibiotics from prophylactic dose to treatment dose.

Dr. Rosario Trifiletti in NJ. We see him via Skype for PANS and it's been the best thing we've done so far.

Allegra and Claritin did not do much for DS's allergies, zyrtec worked well for several years. His allergist added singulair 5 mg to his zyrtec 10 mg when his allergies started to break through, and it has worked very well to control his allergies (she said alone singulair didn't seem to do much, but when given with zyrtec it works well and we have found that to be true).

Neuroprotek (mast cell stabilizer/anti inflammatory) - would love to know if anyone found a cheaper comparable alternative?

I'm with you in your struggle to understand, I feel we are in a similar place. DS now 11 has been on antibiotics since first diagnosed approximately 1 1/2 years ago, treatment dose then prophylactic. He was diagnosed by the local PANDAS MD (not a current specialist I guess I would say - published some research on it in the early 2000s but does not recognize PANS, did not test for any levels other than symptoms and ASO, antiDNASe). In the beginning at our exorcist moment (I now wonder with his sensory issues and ADHD that seem to have been around forever if PANS has been with him for longer than we thought) antibiotics and local treatment were a lifesaver. He's had flares but I believe they were mostly reactionary to others although we have gone back to treatment antibiotics with each flare. Since we antibiotic treated the entire house last July there hasn't been much in the way of flares or progress - seemed to be stuck in the 80-90% recovery, we completed CBT. In an effort to ease his difficulties with ADHD at school etc. we agreed/asked to try another med (low dose abilify) but we did ask the pediatrician to order several labs first. The labs revealed active mycoplasma, low ferritin and low Vit D despite supplements. We stopped abilify due to side effects, started additional supplements and changed his antibiotic to biaxin from Keflex. He is now probably a good 90%, things went away (quirky mild rituals we never gave much thought to), his handwriting is improving, while other things remain a struggle, I would say his is now in the mild category. We have no idea if we need to be patient and let him heal, if this is the new normal and we need to find the best ways to support, etc., or if there is still something lurking - mycoplasma could have been active for an unknown amount of time. Our pediatrician has been amazing but this is not her specialty. We are going to do a consult with a PANDAS specialist, even if I hear keep doing what we are doing, I will feel we have turned over every stone. The "what ifs" and nonstop reading were starting to paralyze me from making decisions, I need someone to tell me what to do and when to do it for the best outcome. So don't be embarrassed, I think most of us would also like the answer to that question:-)

We are currently in a therapy break. My understanding with CBT is there should be a start and stop schedule from the beginning with extra sessions if needed (?). When DS was 9 yo PANDAS/OCD hit. We started therapy about 6 months later - he was healing but not completely healed. We had previously purchased the book "What to do when your brain gets stuck" and he had been working with that prior to starting therapy. We went weekly for approximately 5 sessions when she referred us to someone that was a great fit for him. The new therapist was a good 40 min. away and didn't accept insurance. He did specialize more in CBT and I believe was more effective for our DS. We had a set 10 sessions with predetermined goals set in the beginning. We did deviate slightly based on progress and needs. The first few weeks we met weekly, then biweekly, the last few session being 3 weeks apart. We did have a flare in the middle of therapy and there was no amount of therapy that could have changed that - but the therapist was able to reassure him that this would happen, use his strategies as best as possible and wait for it to pass (it was reassuring and comforting to DS that if it was uncontrollable it was ok, just know it would pass as a medical illness was the cause). His OCD and PANDAS symptoms remain mild but present. We will follow up with the therapist as needed from here out. The therapist was helpful to DS and our entire family, but not sure I believe unending therapy weekly would have been helpful though.

When DS, now in the 5th grade, had a neuropsychological evaluation through the school when he was in 2nd grade, the school psychologist made a referral to BOCES for auditory processing testing. His hearing has always been fine but he continues to be below average in 4 categories tested by the audiologist (auditory figure-ground, staggered word test, filtered speech, and functional listening evaluation). Through BOCES he is supplied with a HAT/FM system (HAT = hearing assistance technology), he continues to attend public school in a blended class. This system looks like a Bluetooth he wears and his teacher wears a microphone. Although it's not a cure all for his auditory processing, it helps diminish background noise and also helps with focus. The audiologist visits him in class yearly, we go to BOCES for retesting yearly, and the audiologist participates in all IEP/CSE meetings.

DS 10, experiences a flare with any close exposure to someone else that is sick. In hindsight, the majority of his flares during the first year of treatment can be traced to an illness of a family member in the home, mostly strep. He recently had a "blip" after a Halloween party in our home where a couple of friends that stayed overnight ended up being sick a day or so later - DS was able to tell us he felt his "OCD getting worse" and that someone was sick, but not as bad as if a family member were ill. I've learned to look for strep in family members even when we had little to no symptoms, but tested positive.

I wish I could answer the healing question, we are stuck in a similar spot right now. The MD/immunologist that diagnosed PANDAS told us we should be ecstatic with 80% return to baseline. We are currently 85-90% at baseline with mild tics, OCD and focus issues - we have been at this level since late July except for 1 "blip" I would say. I don't know if there is a piece we are still missing or is he healing and I need to be patient and let time work. As for allergies, we tried without success, allegra and Claritin. Zyrtec has been the only one to work for DS and now with the additional singulair.

We saw significant improvements with singulair, literally within 2 hours, this past spring. Before PANDAS began (or before the big flare in hindsight) the pediatrician had started DS on singulair 5 mg daily in addition to his usual zyrtec 10 mg (per pediatrician, singulair alone didn't do too much, but great when also taking zyrtec). When PANDAS hit and we had no idea what we were dealing with, we stopped singulair as it was new in the previous couple of months and the only med he was taking beside zyrtec. That was early August 2013. Spring 2014 his PANDAS symptoms were increasing and he also seemed to have an increase in allergy symptoms (post-nasal drip, stuffy, etc.). While waiting to hear back from the pediatrician I couldn't watch him suffer anymore and gave him singulair 5 mg from his previous prescription. Honestly, within 2 hours he was almost at his baseline 80-90% recovery (this repeated itself several days later when we were trying to space out his singulair a little later in the day). We have been on both zyrtec and singulair ever since. Once the snow hits and hopefully allergens are down we hope to try and take a singulair break.

One of my biggest "guilts" with this disease is becoming frustrated with DS before we knew what we were dealing with, before we knew of PANDAS. We could not understand why he could be perfectly fine and happy to play video games for hours, but could not get into the car, could not flush a toilet, could let this new OCD completely control him so quickly. We tried offering rewards, taking away things he enjoyed, talking through episodes, all of course to no avail. Now we understand so much more. I will always feel bad that in the beginning we thought he had some control over this and he does not. Hang in there and know you are doing what is best for your child above all else.

When our pediatrician first suspected PANDAS she tried our DS, 9 yo at the time, on antibiotics and low dose Zoloft. Zoloft seemed to exacerbate his symptoms for several hours after taking (of course in hindsight we were at the height of his disease and the worst time to try) and we stopped after 2 weeks. Approximately 5 months later into treatment and feeling pressure from school we tried Adderall 5 mg specifically for ADHD inattention - did great for his focus, but sent his OCD into a flare 7 days after starting. The MD who diagnosed his PANDAS said no stimulants, it will increase his OCD (his psychologist he sees for CBT has reiterated stimulants are not a good idea). Per MD, that left us with Strattera (side effect of possible suicidal thoughts so that was out due to comments DS made at the height of illness) and intuniv. We tried intuniv for several months with little to no difference (confirmed by teachers), it did not justify the low blood pressure/heart rate side effects, we did not restart with this school year. At this point we are considering low dose abilify as recommended by DS's psychologist. CBT psychologist has seen good results with abilify and thinks it may be able to help DS. We are waiting for our pediatrician to give us her final opinion after she speaks with psychologist and diagnosing PANDAS MD. We are willing to try if it gives DS some relief, help. Even in his recovering state he has mild tics, OCD and "ants in his pants".

This was a great post to read, thank you so much. My DS is 10 yo and we have battling this horrible disease for a little over a year. He had a very classic/overnight OCD onset with multiple correlating difficulties (eating, sleeping, OCD being the absolute worst and crippling, etc.). We are currently 3 months without a big flare, just had a mild blip after a Halloween party and sleep over where a couple of the kids ended up being sick a day or two later. In hindsight, he had many signs for several years (rigid thinking, diagnosed ADHD inattention, etc.) along with many infections so I'm thinking the episode that "tipped it" was just a major flare - took several months for diagnosis and treatment. I would put him at 85-90% of his baseline for the past 3 months on antibiotics, probiotics, vitamins with supplements (omega 3s, vit D and B12), and zyrtec and singulair for allergies. I always question ourselves if we should not be pushing more for full recovery (at the expense of more poking and prodding and interruption to his daily routine). Our pediatrician who first realized what this was is trying to manage his care, we have a local MD who initially diagnosed, and our DS is one session away from completing CBT with pretty good results. Most of the providers/specialists I am finding are "out of network" and cash only. We are hesitant to try any ADHD meds for fear we will be just covering up symptoms but considering low dose abilify to see if it helps DS - can do the work just can't focus (failed adderal so stimulants are out/kicked up OCD, intuniv not effective enough to justify the side effects). Your post gives me encouragement that maybe full recovery might come with puberty as it seems no one is able to predict if permanent damage/difficulties will remain. I keep hearing we should be thrilled with 90% and trust me we are - we would have given anything to be at this point a year ago. He is currently in school and just rejoined a sports activity for the first time since this onset. This recent "blip" also reminds me how fragile he can be. Again, thanks so much, this is the kind of story I was searching for today.

Very good to know, thanks! It all adds up very quickly, 2 prescription meds/month, zyrtec daily, MVI with omega 3s (that's expensive!), a good probiotic, and current CBT therapist is cash. Sadly I know those expenses are small compared to what others are paying and what we could be paying in the future. Thanks again.