Agnes26

1. How long were you there? 3 weeks 2. Where did you stay? 1 week RMDH/2 week at private condo 3. Are you with your child during therapies? Yes 4. Is it a full day (9am to 5pm)? No. Just one hour. 5. Was there therapy over the weekend? Nope 6. How did your child feel about the process? Reluctant at first, but after a few days, after she warmed up to Dr. Rahman and realized it was helping, she was totally on board. 7. Did you meet with Dr. Storch? Dr. Murphy? Dr. Rahman for ERP and consulted with Dr. Murphy. 8. Costs at USF? Don't know. We had met our deductible, so it was covered 100 percent. Dr. Storch will tell you what out of pocket costs are. He's great. 93. Would you recommend doing this? ABSOLUTELY. The best thing we've ever done. It gave me my DD back. @ DCMom. Wasn't Dr. Rahman the best? I wanted to pack him in my suitcase and bring him home.

My daughter is recovering and does go to school. Occasionally, she will flare in social situations. I'm pretty sure it's because there's a strep carrier present. It seems to happen around the same people. She becomes hypermotoric, nonsensical and sometimes emotionally irrational/angry. There is no teaching her how to handle this because I truly believe she is out of her mind when this is happening. It stops soon after we remove her from the situation. Not sure if this is what's happening with your child, but perhaps keep tabs on whose around and see if there are any patterns to when the behavior happens.

We're about 10 days into Influenza A. DD, DH and I all swabbed positive. DD is on Augmentin and has been for the past six months. So far, she seems ok. She did have one really rough day were her OCD seemed to come back (clothing refusal + checking/reassurance), but that went away. We were doing ibuprofen. I have no idea if that helped. I've attempted to contact Dr. Murphy, our doctor, without much success. Apparently, she doesn't answer e-mails anymore + my phone call got returned by the nurse, who left me a vm to check with out pediatrician about Tamiflu. So, not helpful. I'm a little worried that the other shoe will drop in a week or so.

This was my daughter. She was diagnosed with SPD three years ago. We did OT, Wilbarger, Sensory diet, etc. Nothing worked. Turns out her sensory defensiveness was actually "just right" OCD. ERP at FSU knocked it out.

The author is going to be on NPR's Fresh Air tomorrow. Apparently, PEX and steriods fixed her autoimmune/brain issues.

My daughter improved significantly on the 14-day trial of Augmentin (no steriod burst), but the day after the "trial" ended she started a backslide of epic proportions because she was, of course, being exposed to strep at school. To this day, I still don't understand why she was given such a short course of abx (and a wimpy dose at that!) and then left unprotected for another infection. I'd say if the dose of Augmentin didn't work, ask for a higher dose, and if that still doesn't work, try something else and try it for at least 30 days. We've had great success with Augmentin 600 ES. DD, 7, has been on it for about 4 months.

Suzanne, this is encouraging. Can I ask what does of Augmentin your son is on. My DD7 is on 600 ES X 2 daily. She has been for about a month. The first two weeks were great. These past two have been horrible. Hope this plan works for you. I hadn't occurred to me to have Myco titers for my husband and I, so thanks for mentioning.

This is what we're dealing with, too, so I've been wondering that myself.

This is a long shot, but does RMDH offer respite care? I'm going to be solo and imagine a short run a few times might go a long way toward keeping me sane.

I spoke with Dr. Rempher on the phone. He seemed nice. We leave for USF in a week. Maybe we'll be there at the same time. I, too, am interested to know how the Ronald McDonald House is. DD doesn't do well sleeping anywhere but her own bed and has food allergies so kitchens besides my own make me nervous.

FWIW, we did IVIG with Dr. K, and it was covered by insurance. No clue how or why, but it was.

When we suspected PANDAS for my DD7, we did blood work (ASO, DNASE and Streptozyme) and started her on an antibiotic. Have you looked at PANDAS Network? http://pandasnetwork.org/diagnostic-tests/ http://pandasnetwork.org/treatment-2/

Wondering this myself. We've put off the start of school for another two months just to give DD7's immune system a break. So is this what's described as a "flare?" DD has ONE playmate that she had been seeing since this whole thing started. I began to notice that the day after they played together, DD was a basketcase. All her symptoms were intensified. DD has not seen that child for a week. And it's been a REALLY good week.

Good luck!

Totally. We did not make the start of school two weeks ago. DD will have homebound services until October, at which point her tutor will also be in the classroom to help transition her back in.

Thanks for the advice. I will call to have blood work done.

DD7 has PANDAS diagnosis and has had IVIG. As a child, I had strep like it was my job. Many, many times a year. I had scarlet fever in grade school. As a teen, I had pericarditis due to a missed strep infection. Honestly, should have probably had my tonsils out. As an adult, never got strep until my daughter went to kindergarten. Have had it three times in 1.5 years. My question is this: Would it make sense to have my tonsils out now? I've had several cultures, all come back negative, but is it possible that I have strep hanging out in the recesses of my tonsils unreachable by a swab?

She's on Augmentin, but that was a worry. Thanks. Definitely don't want it interfering with abx! Looks like we'll just stick to Zyrtec.

We took DD off Zyrtec for two days and the wheels came off. Emotional lability and hostility returned full force. Put her back on it, and a half hour later she was sweet as pie. Does anyone know if Pepcid is available in chewables. I can only find a generic chewable pepcid/tums combo. Not sure if the antacids would hurt, but I'd rather not give anything extra.

Anyone know how long to expect a call back from USF after doing initial intake phone call?

Thank you all for your responses. It's been so helpful. I've scheduled an appointment with a local therapist and have a call into USF.

I'm wondering this, too.

Thanks for the reassurance that we're still early in this process. DD is 7. Is ERP/CBT helpful for little ones? Our doctor seemed to think IVIG would be sufficient.

This is intriguing to me. DD has terrible seasonal allergies right now. Could this be why 5 weeks post IVIG, OCD is unrelenting? Thanks for posting this information!

My dd is 5 weeks post IVIG. While her other symptoms like emotional lability and night waking have improved greatly, OCD is unrelenting. She's had a few really good days here and there, but nothing consistent nor lasting. I'm losing hope that this will help her and school starts Monday.