TracyRee

Will do. We were on the wait list for a September appt but got the call last week. Way sooner than I expected.

We are seeing Dr Lewis tomorrow. Anyone can tell me what to expect? Ds is 11 and been diagnosed since 4. We are hoping to get him off antibiotics and start treating more naturally and healing gut. Is Dr Lewis hardcore about gluten/dairy? We've been down that road many times and won't do it again. Any advice on what to expect or what to ask would be great

We have an appt for Dr. L in August and are on the wait list. Thank you for the reminder to address the methylation. I do feel like that's a huge part of it and hat we have neglected it. Is there a cheat sheet for those of us in dire need but lacking brain cells to sort through it all?

Thanks. Yes, we have decided it's time to take him off abx. We plan to do that starting in May in hopes of strep season waning a bit. The abx keep him from tics and OCD, but the irritability and mood are not improved at all. If anything, worse. I just can't keep going like this.

Ds has had pandas diagnosis for 7 years. Last three he's been on daily azithro. I can't keep giving him daily antibiotics. I feel a little Twinge of guilt giving them to him every single time. I feel like they have wrecked his gut bacteria and effect his mood. He's depressed, negative, irritable. I want my happy boy back.

11yo DS has been on azithromycin for 3 years. I am ready to try another route. (Reason being that I think his gut health is causing major behavior issues. Depression, anxiety, negativity). He's been getting worse and worse over the last 3 years. Please recommend an amazing doctor that can help us. We will fly. Eastern half of the U.S. preferred.

I was diagnosed with strep on New Years Eve through rapid culture. I had a cold the week prior with sore throat and ear ache starting on Dec 30 I've been on Augmentin for 6 days and am still in excruciating pain. My throat looks like ground beef. Daughter was diagnosed last night after taking her just to be sure (no symptoms) Is there anything I can do to get rid of mine aside from antibiotics? I can't keep going like this.

So I've been buying the home strep tests off amazon for years. Between today and yesterday I tested my throat four times. All negative. No faint line, nothing. Went to walk in and got a positive rapid test. My throat is on fire. Swollen and in so much pain. So disappointed with home tests. I know it's not user error, I swab the heck out of myself.

My 9 year old DS was diagnosed at 3. Onset was triggered by undiagnosed chronic strep and manifested in compulsive urination and a leg "scratching" tic. We are managing by seeing a pandas friendly doctor 4 hours away. She has him on daily Azithromycin as well as a cur cumin supplement and nystatin. Here we are in the thick of what seems to be a pandas exacerbation in his little sister. She is newly 5 and never shown any indication of this before. For a week now she is compulsively "urniating". Runs to the bathroom every 10 minutes and tries to go. At the same time, she's suddenly germaphobic and fearful of bugs (SO unlike her). Our local pediatrician is now our ex pediatrician. She refused to discuss pandas with me and "educated" my daughter about germs and holding her pee. Our pandas friendly doctor has graciously prescribed an Azithromycin trial and labs. She is on day 6 of Azithromycin and ibuprofen with zero improvement. Labs won't be back until weeks end. With DS, his symptoms vanish after 48 hours on antibiotics. The facts that hers are not improving has me in near freak out mode. I've suggested switching abx and am waiting to hear back. Suggestions?

Thanks. It was a positive rapid. Why do you ask? (Just curious)

Thanks all. His pandas friendly doctor isn't getting back with me. I'm so tired of not having help when he needs it!!! Shopping a new doctor now. In the here and now though, is the azithromycin for 5 days followed by throat swab at our pediatrician all I can be doing? I can't see any other options. I do have augmentin I can try again??

Thanks. I will let you know what pandas friendly doc says if/when I hear. Will definitely retest after zithromycin. We tried Augmenting this spring and he just couldn't tolerate it. He threw up or had a terribly upset stomach every day no matter how much he ate with it. (It's hard to get any food in him, so it was just so hard)

DS started complaining about a sore throat last night and looked awful this morning. Off we go to walk in. Positive rapid. He's been on daily antibiotics since December, for the last several months he's been taking 250mg Keflex 2x/day. He's 57lbs. What now?? He's getting strep on Keflex?? The walk in clinic prescribed 250mg azithromycin 1x/day. I put a email out to our pandas friendly practitioner, but it's usually a wait for a week situation there. What should my plan be here? I'm at a loss as I was going on the assumption that the Keflex would keep him from getting strep.

Thanks all. Got to talk with her last night and she's prescribing more abx. Breathing now.

DS's practitioner who is PANDAS knowledgable and has had him on abx since December has stopped his abx. I've been calling, emailing and leaving messages saying that I don't agree with that decision as school starts in a week and I know he'll get strep as soon as it starts. He NEEDS a good start to this year. Last year he got strep the first week of school and it just set him up for a rough year with that teacher. I can't seem to get my call returned or emails answered and don't know what to do. We have no one else in the area that treats pandas. I'm willing to drive, but obviously can't get an appt with someone new in the next few days. Advice? Any way to prevent an active infection without abx? He's on vitamins b, c, d and antifungals. What to do??

Thanks. We do have a pandas doc, but not local, so these quick strep tests have to be at the walk in.

Well, it wasn't too soon. Positive

Thanks. It's tricky as he has a t&a a year ago and our local doctor isn't pandas friendly. He's had strep once since t&a and many strep tests as I run to doc immediately. I'm expecting them to stop agreeing to tests soon.

How long do you wait after your child says they have a sore throat until he get them swabbed for strep? I generally go right away, but have been told it may be too soon for an accurate test. Ds just woke up with sore throat, when should I go?

I've always been told they can't swab while he's on abx as the result won't be accurate??

Diarrhea returned, mouth wiping tic returning. Starting on vancomycin today. Eye contact remains!

My son had no symptoms before pandas onset beyond a little sensory sensitivity and sleep issues He changed completely after pandas. From birth until about age 5 1/2 he was mellow and easy going. If anything, maybe his symptoms were how un-typical toddler like he'd been. (never tantrumed, always did as he was asked...) After pandas diagnosis we were able to stop symptoms the firstvfew years and no lasting issues. Aftter the first few years all the irritability and difficulties started. Looking back and seeing how the flagyl effected him, it probably was all the antibiotic use causing a lot of the problems?

Was wondering about using GSE with our pandas kids. Anyone doing it? Experience?

I'm posting in hopes of helping someone else's kiddo out there. DS has had pandas since 3. He had sudden onset compulsive urination that lasted 3 weeks. He endured many medical tests and was written off as having pollakiuria. I came across pandas online, demanded a strep culture and it came back positive. OCD stopped within 24 hours of starting antibiotics and no strep symptoms whatsoever. Over the years we've had exacerbations resulting in a few tics and OCD behaviors. These things always cleared up with antibiotics and it was thought his pandas was "managed" Thing is, DS was never the same are that first onset. He had no eye contact, was always irritable, lacked social awareness, lacked empathy, lacked self care skills... Lots of subtle things that added up to an Asperger's diagnosis at age 5. I've always questioned that diagnosis and felt in my gut that his issues were biological in nature. I went with the Asperger's diagnosis as it's easier for the school to understand and it was given by very very reputable evaluators. Last summer DS has his tonsils out and has been strep free since. All the behavioral issues persisted except for tics and OCD, I was coming to accept the Asperger's diagnosis and resigning myself to the fact that this is what he is. Irritable, explosive, distant, inappropriately silly at inappropriate times.... In May DS was treated with omnicef for ear infections. Following those antibiotics he had terrible diarrhea for a month. His DAN doctor put him on Flagyl for the diarrhea. A week into Flagyl and he was a completely different child. TYPICAL!!! He's suddenly doing things he's NEVER done. Normal eye contact!!!! Pretend playing, mind blindness vanished, easy going, empathetic .... It's absolutely amazing. I really can't express the change in him. Two months ago I received some bad news and wept openly in front of him for an hour. Not once did he notice. Didn't ask me what was wrong or acknowledge it in any way. Two days ago I stubbed my toe and said "ouch" under my breath. MY CHILD rushed to my side, asked me what happened and hugged me in sympathy, telling me he was sorry I had hurt myself. HOLY SWEAR WORD!!! Coincidentally, DS was scheduled for a dyslexia screening this week. The examiner quickly ruled out dyslexia, saying he obviously reads way above grade level. She spent the rest of the day with him and said she doesn't see him having Asperger's. We wont get her final evaluation for a week, I can't wait to see what she says! I know this may be fleeting, but he's been "with us" two weeks now. I'm enjoying every moment and know he may be gone again as soon as a virus invades his delicate system. It's very bittersweet seeing him this way for the first time. Our days used to be spent in frustration from waking until bed. It's been nothing but pure joy for the last two weeks. DAN is putting him on vancomycin just to be sure and wipe out the rest of the assumed c diff. I'll keep you posted. Hope this helps. Maybe rotating flagyl in with these kids that are on antibiotics so often could be the key for a lot of us??!!

Well, the evaluator called and rescheduled for next week. Darn it. He's already doing so much better than just days ago. (never thought I'd be anything but happy about that!!)