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this would be answer to many prayers. my child's psychiatrist and primary therapist were excellent, I cannot imagine how helpful it would have been to have her PANS treatment there. She may have gotten well years ago, had that been an option. If parents of Roger's "grads"can be of any assistance..fill me in, EAmom!!

I have the same as you. Two older kids, both pex and IVIG (though they are 13 & 14) and a 7 yo who was "mild and caught" early. I am working on catching our 4 yo NOW before the potential spiral down! Our doc gave the 7 yo steroids ( a month's worth) and zithro at first. That was almost 2 years ago (she is 7) and she is just starting her 4th steroid month and now, cefdinir for this most recent exacerbation. It started with only a vocal tic, squeaking. At 5 years old, that could easily have been a wait and see deal. Well, wouldn't you know, the subsequent exacerbations included OCD, frightening thoughts, wetting, the whole nine yards- though not all at once. I would jump on it early- and for all my kids, steroids have been a real lifesaver. I counted my lucky stars when my preschooler (not diagnosed with PANDAS- but seeing the neuro next month) needed IV steroids and IV abx for pneumonia and asthma last fall-- it shut down her intrusive thoughts and other OCD symptoms in a few days! She has been in good shape until this summer. We just saw our PANDAS doc and she said the rate is about 50% for siblings. That would be accurate here. Best of wishes to you!

we have pm'd before, Dawn. As someone who has been there, done that.. this is really hard, but I think you are doing the best you can right now with this situation. I do not know the facility you are looking at, but I wanted to say publicly that this is really brave decision for your son. Most PANDAS parents will never ever deal with a kid this severe, but when you do, sending your kids to a place like this is not shipping them off or giving up. It is just another part of their healing. Thinking of you. For those of you who can not figure out what these facilities could do for our kids, they offer safety, security 24/7 & intensive therapy of every kind all waking hours. Like PANDAS, I would not wish this decision on my worst enemy. However, perhaps I can offer some hope and let you know we survived, our child did and is so much better for it.

melanie, I have wondered about your son and steroids,also. have you done high dose iv? any effect?

how old is she. ? which vaccine great news!! how did you get here(to this good place)

I believe rogers has an adult program. I am familiar with the child/adolescent center. call rogers they are excellent!

rogers in wisconsin is an excellent residential ocd/anxiety program. they do not medically treat PANS they wil,l continue medications your child is on and they will work hard at getting meds decreased and working well! excellent facility. feel free to pm me for more info.

Thanks! Last time we saw the doc (when things were looking good) she said we might do IVIG if things worsened. It just clicked in my head that I have 2 kids (not this one)currently sick with pneumonia (CXR confirmed) responsive to Zithromax.. so, maybe that explains her uptick in symptoms-- she developed a significant cold and fever the week the first developed the pneumonia. This was about 3 weeks ago. Maybe upping her abx (she is on 3/4 tsp zithro QD ) will help?? just thinking out loud here. Sometimes it takes me a little while to put 2 and 2 together..

my 7yo has been sticking her chest out /arching her back many times an hour for the last few weeks. Has anyone seen this? she has been successfully treated with steroids three times for vocal tics and fears/anxiety, but this is new. she has difficulties wearing a seatbelt,and sitting in a chair, due to "i have to move my stomach" & what I think is restless legs or.something like it. she also has increased urinary frequency. seeing pandas doc on friday...

my 7yo has been sticking her chest out /arching her back many times an hour for the last few weeks. Has anyone seen this? she has been successfully treated with steroids three times for vocal tics and fears/anxiety, but this is new. she has difficulties wearing a seatbelt,and sitting in a chair, due to "i have to move my stomach" & what I think is restless legs or.something like it. she also has increased urinary frequency. seeing pandas doc on friday...

I vote thenmama as Captain of TEAM PANDAS.. anyone second the motion???? excellent gameplan , by the way.

AWESOME NEWS!! Your persistence paid off and it all lined up. This is a great start to her journey to healing! Let us know how it goes!!!!

usf , not part of the study, increased my child dose to 500. she is full size 13yo. had.been at 250mg. our pandas doc agreed and has kept it at 500mg QD

make sure you get a large enough dose. originally my child was on 250mg QD. USF felt that was too small, but who knows?? I wish there was some kind of flow chart to deal with this. it us all a crap shoot it seems. I feel for you. I am getting ready to take #3 in for a follow up. she is heading downhill fast( again, mostly movements so far). 3 steroid months have helped over the part two years, but now we need to do something else. ivig not covered (cannot afford it), pex coverage ending soon and I am out of ideas. Hoping Dr has some tricks up her sleeve to try something else! thinking of you and hope it all works out!

they will refer to dr l about pandas. they made it clear that she is the pandas expert. i know this will not cover everything, but what about taking zithro also? my teen is on zithro 500mg qd and augmentin 1000 xr bid. ask dr l. this was.usf.recommendations, but dr l went along with it.

I will not ask about puberty ( as he is most likely quite past that) but do you think maturity helped him cope with his symptoms? How long ago were the IVIG infusions and how far apart were they? Glad he is a bit better. Are things in control enough that you could retry ERP? I would not discount the positive/supportive environment of good friends. Was it an OCD type camp or just spending time around great people?

we got right back into life.( after a few days) we already homeschool, but we certainly do,not cocoon. I think some people misunderstand pex and how it works. He will not be immunosupressed. Please ask the hem/onc doctors or the plasmapheresis nurse (when you get to three hospital) to explain to you how it does and does not affect the immune system. It will clear alot up for you. I would get him home, let the site heal, and then go back mid week for half day and then get back into life. pex took a month to work for one of my kids, though it took only a week for another.

I totally thought this was a joke at first, when I saw the subject line.... I was trying to figure out what PANDAS news could possibly be as exciting as a Harlequin Romance to a PANDAS mom & this book sure is -- maybe I will pick up a copy too! OH & for those of you out there who do not watch MONK- you need to. It is a Friday night tradition here in my house- most of the kids watch it from 8-10pm without fail. It is a great show.

There are 2 RMHs-- one is a converted house (very beautiful and quiet) the other, I think is more like a hotel- maybe even more private? dcmom stayed in that one, PM her or maybe she will chime in. We had a bedroom with 2 twin beds and room for a cot (which my husband used when he came for the last week), our own bathroom/shower. There is a large laundry room and kitchen. you can purchase food and label/ store in a fridge in kitchen. There is much food there to share, both prepared meals by kind volunteers and also donated stuff from the grocery stores. We really bought little food out- which my wallet was grateful for (though we made near daily stops at Tropical Smoothie Cafe on our walk to and from therapy). Since we were staying for 3 weeks- we could not afford a hotel and frankly= it is so close to the rothman center- I would do it again. Most of the people in the house we stayed in had very sick kids at All Kids Hospital, and they were not there most of the time. Also, the kids with bone marrow transplants who could not go home stayed there, on "their" side of the house- so it was very quiet. If you decide to do it- call the RMH tampa bay/st petersburg and ask them how to proceed. USF had to fill out some paper saying we were indeed going there for tx, etc. The staff at RMH (someone is there all the time) are very familiar with PANDAS pts staying there and are kind and understanding of these kids. I am a bit freaky about hotels and carpet and that kind of thing (ocd?? ) but staying there was easier than I anticipated and it was so convenient and easy- it made that part of our trip a breeze. Hope this info helps! Best Wishes to both of you heading to FL!

Same experience here- Dr Rempher read everything and Dr Murphy did too ( I gave it all to them ahead of time) and Dr Murphy popped in and spoke with us (oooh, I have been in the presence of a rock star .... ). Dr Rempher checked my daughter for myco p (never been done before) and she was highly positive for a current/recent infection. They added augmentin 1000 mg XR and doubled the zithro and she is doing well on that. Our pandas doc had not done the augmentin yet for her-- onyl zithro and clindamycin/rifampin protocol. From what i could see- the people we met who worked there are VERy interested in this neuropsych stuff- just like all of us are! We read each other's stories with interest and care, and I think the folks at USF do also. We met several students functioning in different capacities as well.

we ssw Dr Rempher! GO SEE HIM! he was great! he is a pediatrician who after practicing for years is in the neuropsychiatry fellowship. very thorough, smart, interested..Go GO!! I do not know if he will prescribe psych meds since you are far away, but he will examine, labs, and make recommendations. their abx recommendations made huge difference in my daughter! I am so happy you got something so soon!.we saw dr horng for cbt.

could the itching be: nerve based? my child had severe itching in certain spots, it was recognized as some kind of neuropathy, and she was given Lyrica. It was very helpful. anxiety? Valium had ZERO effect.on my child. Drugs and brains work differently, so maybe trying a different med may help. Atarax or vistaril?

ivig did not make a quick improvement in our 12yo. however besides continuing an antibiotic protocol that had been in place for nearly a year pre-ivig, there were no medical interventions after ivig. a year later she was in a good place, and came to a much better place after intensive ERP. So, I do think it helped quite a bit, just took a long time. our pandas doc said the same thing for age and ivig,-the younger, the quicker the healing.

did the Infusion company take insurance? I may be looking at this for one of mine shortly

maybe I missed this-- but I wanted to put it out in case some who could partake or benefit from this also missed it: Mayo OCD therapy research study