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?