Tattoomom

It started a couple weeks ago. He's on full strength, but only 3 days a week. M, W, F. I'll try Advil and see. I plan to ask his doctor for full-strength for a month. Just makes me wonder why he started up all of a sudden?

We're not dealing with this (as far as I know!) but just curious.... how do you get Lyme? Is it only through a tick bite?

DS (12) has PANS. Started at age 5. He's been mostly tic free these past couple of years, aside from blinking or throat clearing that pop in and out randomly, but they never stick around, and only happen a few times a year. All of a sudden, a few weeks ago, he started with a brand new tic. A facial tic where he flares his nostrils and widens his mouth. He's never done this before and hasn't been sick lately. What causes this flare? Should I up his antibiotic? He's kinda bothered by it

Who do you see in Tampa?

I'm nervous about cutting back on her Zithromax. She's come leaps and bounds and I worry that decreasing her doses might set us back. What to do?? Pediatrician would like to see her go down to 3 days a week, but I think she will work with me if I ask to keep her on. Ahhhhh! Decisions!! What are most kids on? Everyday??

My 4 year old (severe PANDAS) did a steroid taper between February-March. She did wonderful and I truly believe the Prednisone was the boost she needed. We also stopped the daily Augmentin and started daily Zithromax. Her Pediatrician wants to go from daily Zith to a prophylaxis dose and suggested 3 x's a week. Is this enough? Also, is it better to do 3 days straight? Like, Mon, Tues, Wed? Or separate the doses? Like, Monday, Wed, Fri? I know Zith suppposedly keeps working after a dose, so I'm thinking spreading it out might be the better option?? Truthfully, I'm afraid it's not enough to prevent strep.

My daughter had Autoimmune Neutropenia before PANDAS.

Awesome news! My daughter just finished a 5 week steroid taper and is doing 95% better! *knock on wood* She takes daily Zithromax. Hoping we can one day say we are in remission.

DD had a nasty sinus infection back in early 2011 (in hindsight probably strep) and saw ENT. Had Ct Scan and sinus persisted even after abx. He suggested tonsillectomy, but we waited. This was before we knew she had PANDAS. Once strep throat was detected a few month later, we've been in a constant battle. Now I'm wondering if some of her residual symptoms would be eliminated by a tonsillectomy? I guess there's really no way of knowing without doing it, but I guess I wanted to poll here to see who it helped and who it didn't.

Everyone talks about IVIG, but what about injectable IG? Does it have to be IV? Also, what type of doctor do you use for it? And how do you get insurance to cover it? We have United Healthcare.

DD4 just finished a 5 day steroid burst and did great, but went downhill about 3 days later. Pediatrician agreed to try a month long taper (yay!) 1) Do we stay on her Augmentin (she takes it once a day) 2) Someone mentioned not doing Ibuprofen during steroid treatment? 3) Anything I need to know about her being on a long course of Prednisone? I know it will suppress her immune system. Anything else?

DD4 had her last dose of a 5 day Prednisone burst on Thursday (2 days ago) and now we see her bad behaviors/PANDAS symptoms creeping back. She did GREAT on the steroid (other than a throat grunting tic) and now I feel like it was just a temporary glimpse of normalcy. What does this mean now?? Did she need more? Is this yo-yo common?

So it took us a while to get an appt with our Ped who helps us manage our 4 year old's PANDAS. Then the RX she wrote for liquid Prednisone had to be specially compounded and filled at a pharmacy not covered by insurance. Yada,yada, we finally have our tiny bottle of 5 days Prednisone and she seems ok right now. I then have to wonder if I should give her the steroid if she's not in a flare? Does it matter? I mean, the dang bottle expires in a couple of weeks so I want to use it, but not sure what to do?! Any advice? This will be our first time using a steroid.

YES! Tons of autoimmune stuff on my side, but both sides have depression, anxiety, OCD. I figure you put those together and well............

How do they help exactly? How does it tell if it's PANDAS or not? How often do you give them?

So the dose is supposed to decrease every day??? She was prescribed 15 mg for 5 days.

DD4 doesn't swallow pills yet so I crushed her Prednisone (2 pills) and put it in her cereal and she immediately detected it and wouldn't eat it. The Ped said the liquid is horrible and thought we'd have better luck with the pills, but not so much. How do you get your kids to take the steroid if they can't swallow the pill????

Same!

Labs done about 3 weeks after a strep throat infection, but in hindsight, about 9 months after original PANDAS symptoms appeared. ALL her labs were normal, but so were my other PANDAS/PANS children, even though they clearly respond to antibiotics. CBC- normal M pnemoniae IgG's and Granulocytes- normal M pnemoniae IgM- normal Anti-DNase- normal HSV, IgM- normal Streptozyme- normal Antistreptolysin O Ab- normal She doesn't respond to the antibiotics as well. There's still a lot of underlying symptoms with her (anxiety/ocd even on Zoloft & Tenex) and screaming/rages/foggy brain. What about the IgG subclasses? Any other lab work you can recommend? (although I have no idea how we'd get her to do it... she will FREAK!) I'm ready to push for steroids, we've never tried that. I'm wracking my brain to think of things to try. What about 2 abx at once? She's only on Augmentin right now.

My Pediatrician wasn't too keen on giving her steroids, but I think I need to push the issue...

Her Psychiatrist seems baffled about PANDAS because she doesn't have tics. My older 2 (PANS/PANDAS) have tics along with anxiety/OCD. How does one go about testing for parasites? Stool sample?? I honestly do not know how we would possibly do any blood work anytime soon. SHE WILL FREAK OUT. She had Autoimmune Neutropenia the first 3 years of her life and endured hundreds of blood draws, ER visits, hospitalization, injections at home, a bone marrow biopsy, a CT scan, etc... and has horrible anxiety at the doctor. She has some PTSD from it. She hasn't even had her teeth cleaned at the dentist this year she's so scared. She had to be put under general anesthesia for a cavity when she was 2. I cannot fathom putting her under for tests. Is it possible she's just not on the right antibiotic? I see some kids on here are one more than 1 at a time. Is this something I should consider?

Lol this is mild in comparison to my home! Yep, mild comparison! And at least they know what she's screaming at! I think it makes it easier when there's a reason! LOL

Thank you so much for replying. I have 4 kids. My oldest has PANS (mycoplasma) and my oldest daughter has PANDAS from strep. Ava, the 4 year old started off with what almost looked like autism around age 2 1/2, and it wasn't until she was put on an antibiotic for a UTI when she was almost 4 when we had a huge eye opening experience with her autistic symptoms going away on the Amoxicillin. Immediately after stopping the abx (2 days later), she tested positive for strep throat. Mycoplasma labs were normal. Didn't check the others. I guess I just wish I knew why she screamed! We go over it and over it. And she knows she's not supposed to. She'll even say once she's calmed down, "I'm so sorry I screamed. I know I shouldn't." You can tell she cannot help it. I think you're right avoid it being OCD related. She will literally make herself hoarse. It's terrible. And it really does feel like we live in a crazy house. Seriously.

So our main "symptom" is SCREAMING. I mean bloody murder. I mean glass shattering, can't-believe-my-neighbors-haven't-called-the-cops, kind of screaming. She mostly screams out of anger/frustration, but will even scream at me when I ask her a simple yes or no question. When she's really upset, she self-injures during her tantrums and will rub her feet together and has literally caused herself to bleed. She's started to trash her room when she's mad, dumping toy buckets out, banging on the walls. It's awful and scary. She's 4 and we're about a year into this. She's on Augmentin, Zoloft and Tenex. Her anxiety is also pretty bad, crippling at times. She affects the entire house. We ALL feel like we suffer right along with her. It's so hard. I find myself questioning if we're on the right path and whether or not this is PANDAS. She definitely has major mental illness. Can PANDAS cause such horrible screaming??? Her Psychiatrist thinks her screaming tantrums stem from anxiety. All I know is, we are terrified and the older she gets, the worse she seems to be getting

Thank you so much for the replies! I was hoping to hear what others are on, specifically how much (how many times per day/week?) and how long (months, YEARS?)