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Could it possibly be from sleeping in a wet pull-up? When my youngest dd used them at night, she wet them big time while she slept, and got a rash on the bum sort of like that... With my PANDAS dd, the first time we started daily treatment dose Azith., on the 2nd or 3rd week, she had the red sandpaper rash on her bum, pressed it and it would turn white, go back to red. I googled Scarlantina rash, it looked exactly like that- although some pics of the Scalatina rash were vivid red. I swore it was strep rash, the strep coming out, she normally never rashes, flawless skin. Don't know if this helps. The red ring right around the anus is classic yeast.

That would upset me! I always have our test results emailed to me- that is your right! My insurance is not covering any of our treatments, but, I don't see how if you are getting insurance coverage through this Dr., why in the world another appointment would not be covered? Sounds strange.

I am PUSHING my dd, almost 6, to 1/2 day kindergarten every day. Separation anxiety. When I pick her up, she loses it almost as soon as my van door is closed (never at school, never, holds it together there.) We are 3 weeks post HD-IVIG. Discovered gut issues, just started Vancomycin (heavy) for 3 weeks. She does not look well. Her little body has been/going through so much. Frankly, she's not well. We have a 504 plan just coming into action. She does very good on her school work. If she doesn't go, I wonder if the anxiety will then build too great to go back. It's bloody kindergarten, right? My DH does not want her to miss any. I think he wants a break for our neurotypical 4 yr. old that takes the brunt of the abuse. But I want her to heal. It IS really stressful for her... any thoughts?

I am thrilled for you Stephanie- I know how much you wanted off the merry-go-round of medications--- I've read your blog, it's great :-) Thanks for being so open about your experience and sharing it.

Mary - it does help, thank you- May I please ask: are you keeping her from school while she heals from #2 IVIG? Are you keeping on daily antibx. after your IVIG's? Thank you-----Sarah

LOL, LOL!

Great post-- I am so happy for you, and just thrilled for your son :-)

Thank you- did not give 2nd dose of Tenex today- think I'm going to hold out on that one- we are actually having a nice day. Still on Azith. 200 mg a day, and this morning I gave Longvida (500 mg curcumin) just took another temp. 100.2- and gave ibuprofen. She has no illness going on. Good thought for me to keep the inflammation down while healing. And thank you for typing out your story.

If antibiotics would have put us in remission, I certainly would have not done an IVIG- We did Omnicef, saw nothing. Azithromycin (treatment dose) daily, first 4 weeks were Wows! Then week 5-6, we backslid (not do to another strep infection, or illness, either, well, I don't think, lol) Tried Augmentin- my dd's gut could not handle it- stopped eating, slid to the floor. Stopped after 3 full days. Did the steroid burst. Again, too hard on her tummy--- frankly, I think the ibuprofen helped more than a 4 day steroid. Or Curcumin, Longvida or Enhansa for inflammation. I believe she has been dealing with this, untreated, for a long time. High CamK score. Chronic, but still the wax and wane, but no 'real' baseline. So we did the HD-IVIG (almost 2 grams) over 2 days. Welllll. It's been a WILD ride. Day 17 post IVIG. I have seen EVERY PANDAS symptom in the book come back, at MAX. Not all at once, coming and going, but wholly moly. We tried a dose of Tenex, and yes while it stopped her uncontrolable body movements, but it whacked out her separation anxiety and instrusive thoughts. Was it from Tenex, or healing IVIG? Don't know, scared to try a 2nd dose. Then, today, we are back to our low grade fevers she has had on and off her whole life, 99.9. These fevers are always with no other sickness present- And you know what? I don't regret doing it for a second. Not for a minute. I had to give it a shot. I had to see. I had to try and put this in remission, all other efforts having failed. Jury is still out. Too soon to tell. My .02 cents.

Thank you so much for taking the time to reply and help. She is still a bit weepy (about missing school) I DO see some positives, especially all morning, before she fell asleep this afternoon. I am thinking skip a dose tonight, she has a little morning school tomorrow, and then give it to her again around 12 pm tomorrow when she comes home...they are tiny white round pills, time released, 1 gram, can't cut in half... THANKS.

Cancel Tenex: She fell asleep on the couch, woke up to go to 1/2 day afternoon K, and weeped because she wanted to go, and felt unable to (too tired) I guess I just need to wait out this IVIG.

Thank you--- I had to call over my 77 yr. old FIL yesterday, things started to get so crazy. It helped, I was able to have a good conversation with our Dr. (DAN!/PANDAS) and first he referred me to his 'friend' the head of Stanford child psych., which we can't afford, thank you, (lol) but we talked, and he said he actually 'loved' Tenex, which surprised me, and sent in a script for us. I gave her some before bed last night (first time I have ever put this child on any type of drug, EVER) and today she has had incredible control over her body, much, much better. She is tired, though, which I know is a side effect. I'm going to try it for a week, see how it goes (very low dose) Thanks again----

*I am on a complete roller coaster. I thought maybe very bad gut issues were our problem- ordered a test, and yes, we have some yeast overgrowth (not insane) and NO bacteria/clostrida- have a new anti-fungal, so it's not that. I do have optimistic days, but these loss of control, violence--I don't know-----*

I guess we are, yes...she is going to 1/2 day Kindergarten, where she ALWAYS holds it together, gets good 'grades.' But, the violent/tourette rages- are incredibly scary. I am attacked, my little 4 year old is attacked/abused- she can cause self injury. I can't do it anymore. We had 3 days without, but then a horrid one last night, my DH is out of town, I tried to call for help from IL's, they didn't come, and had another this morning. She can no longer shower/bath, nor get her hair touched/combed in any way- But it is these rages. Last night I had to force feed 2 melotonin (1 mg. each) and a shot of ibuprofen. It is heartbreaking. I feel like I'm in an abusive relationship, with the horrid name calling and getting hit, bit, spit. I'm scared where this is leading. Sorry to vent.

omg, I'm not sure what you were going to ask, but I'm currently in a PANDAS flare at the moment. (really bad tics) nothing else. Not sure what is causing it. I started Tenex yesterday and went from having over 200 tics to 5. AMAZING DRUG at least for me- just wanted to share. Thank you pandas16--we are in some dark days here with tourette/violent breakdowns- I have a phone appt. w/our Dr. in an hour. I have no idea what to do anymore. Tenex had crossed my mind this morning... So glad it is working out so well for you-----

Sorry- never mind.

Loved your post, thank you for sharing. I, too, am in the post IVIG and it's been some of the hardest days yet. Your story was very helpful to me. You are a fantastic Mother--your son is lucky to have you.

My smarts have run out ;-) I don't know anymore. We had a score of 175, and my daughter has heavy OCD, and no daily tics, just episodes that start with vocal tics, then move to 'tourette' in nature- the swearing/loss of control verbally, loss of control of her body, spitting, etc. I was told in a PANDAS consult that our score was very high, one of the 5 highest he had seen, and it was no grey area- definitive PANDAS. I forgot, have you done the test yet? If you have, you can email your questions and maybe get the clearer answers you are looking for- but it still is really a 'research' test.

Wow! I can't believe she has strep! Thank goodness it was found. So bizarre! Hope she feels better soon--and fantastic on a 'great' Doctor.

** In the result packet, it is stated that a CamK score of 0-130 is where 'normal' (hate that word) will place, and a 'normal' child with active strep might place as high as 139. Here is something I copied from the result paper: "Our hypothesis is that antibody-mediated autoimmune mechanisms as well as infection may contribute to the pathogenesis of some movement and behavioral disorders. In SC, group A streptococcal infections induce cross-reactive antibodies that deposit in the basal ganglia and lead to CaM kinase II activation in neuronal cells (Kirvan et al., 2003). PANDAS sera were found to induce significantly higher levels of CaM kinase II activation than sera from non- PANDAS OCD, tic, and ADHD groups not associated with streptococcal infection. In fact, PANDAS patients diagnosed with isolated tics produced the highest level of CaM kinase II activity similar to chorea. Although we do not know exactly how disease producing IgG antibodies cross the blood–brain barrier, we can suggest that infection or the antibody itself may affect the blood–brain barrier. Recent work on behavior and immunity demonstrated that LPS or epinephrine affected the blood–brain barrier to allow IgG to penetrate the brain (Huerta et al., 2006)."

I don't think 'normal' kids (no OCD, no tics) would have anti-neuronals out of range. I believe it is a past/or present infection that has crossed the blood brain barrier and is causing a auto-immune disease/state, attacking the brain, and the overall score indicates how serious a problem that is- I thought non-PANDAS kids who currently have strep would not test in PANDAS range...

Totally get it Malke, totally get it! I am really just down to internet friends (lol), so that one is not an issue, but my IL's who live in the same town are! It's taken some years and massive boundry carving. They used to get angry at me when we'd leave a family event after 4 long hours...and my dd was a ticking time bomb. Ect. Ect. Sometimes, we just can't show up. I can't take on their stuff. It's hard! Last week I called my MIL after our tourette/rage explosion in the public parking lot, when my dd could have been killed. My MIL: 'You must be PMS'ing.' So I will tell you what my husband has to tell me: Some people will NEVER get it or understand, or live in denial, for whatever reasons. They are not intelligent enough, opened minded enough, whatever. Somehow we have to let that go, for ourselves, and accept that- I have banged my head against the wall so many times about MIL- and it does ME the most damage. xxoo Sarah

I'm so sorry ((hug)) And I do know exactly what you mean--I could write pages on clothing issues, and we've had periods where my dd can't bear the shower/bath, refuses to get her hair combed, etc., and trying to get them off to school. I DO get it. I hope he gets to feeling better soon---is he on antibiotics? Do they help? PV's-----

Hang in there-- I just wanted to mention I get my dd's medications made up at a compounding pharmacy, liquid, dye free/sugar free, but they are flavored strawberry or tutti frutti- I present it in a syringe to her, with a drink chaser. I squirt them in the back of her mouth. She takes them, but she also knows that I will sit on her and put it in her mouth if I have to :-/ She is swallowing capsules, as well. Hope things get better soon- PV's---

Hi- we are day 13 post HD-IVIG. We did have our horrific rage episodes continue after treatment, but it's been 5 days free of one- We did notice her social anxiety had really increased after treatment- which caught me by surprise, we had made great strides there- and she goes off more by herself. We started to work on her stomach issues (yeast overgrowth) and she is calmer, and no rages (saying it again, lol) these past 5 days. Trying to get her to eat is exhausting. I am seeing overall improvement- But if you had asked me last week, I was really discouraged and had some dark days. I am still tense and walk on egg shells. I had to give up giving the ibuprofen, and once in a while she says her head hurts (not migraine bad.) ETA: I also am hearing things about eye pain. Not bad pain, but she talks about her eyes- sometimes squints them- (I don't think it's a tick, doesn't happen all that often)