peglem

Well, the story is second hand- but that is my understanding of what the person said happened. I know, sounds fishy to me, too. Maybe they misunderstood? I just wondered if anybody else had a similar experience.... Edited to add: Went back and re-read, they said they had to sign a waiver that Dr.K would not submit to insurance.

Just recently someone locally here in Phoenix said that Dr.K(chicago) put their IVIG on hold a few days while he had a meeting with insurance company (ies?). He then told them they would have to sign a waiver, promising not to try to recoup cost from insurance (not allowed to submit a claim for payment?). That's all I know- don't know if it was one specific insurance company or if this is new policy for all IVIG through him.

Allie's minocycline is from ranbaxy. Dangit.

That is so cool!

The state purchased her iPAD to replace her old dinosaur comm device. Also, purchased a "case" for it that looks like a tire, but was pretty good at protecting it when dropped. I say was because the seams at the corners split just a little and right now its out of commission because the corner of the iPAD got dinged when it slid off her lap at school. I'm thinking of buying her one, though, with case, to back up hers and to use when her other is "in the shop". When Allie needed an abdominal ultrasound, we tried to get her to watch youtubes of them, but she didn't want to...until she was there and the wand was on her tummy.

So, trying to do ERP w/ a nonverbal/difficulty communicating child is challenging, but something she found that helped is watching Youtube vids about anxiety producing things. @ a year ago, she got an iPAD w/ a comm app for communication. One of the things we immediately did was start making videos of things- not just anxiety producers, but to prepare her for upcoming events, changes, etc. And that was helpful because we could get the actual things she encounters in life that bother her. But, what we never expected is that it helps her a lot to film things herself- she experiences the *real* experience as though it were a nice, safe video. She's only seeing it w/in the confines of the video screen. Huh, just never occurred to me, but what a great idea she found for herself!

I know everybody always says we should take care of ourselves so we can be good and strong for our kids...yada,yada. And that makes a lot of sense, but finding the time and energy to take care of myself has been hard- and you'd think me taking care of EVERYBODY else, somebody would step up to the plate and take care of me. Anyway, I've been a huge crankypants lately and whining and complaining and just irritated all the time. So, for mother's day, My oldest daughter (she's a mom, too) and I decided we'd play hooky from motherhood. We really didn't do anything special- just some shopping, some eating- saw a stupid movie...w/ no particular plan or time we had to be back by. I haven't had a day off since....well a very long time. It really, really did me good! I just feel very happy- all that irritating stuff in my life is kind of amusing now. And I appreciate my PANDA girl more, too!

Consider that risperdal can cause facial grimacing (tardive dyskinesia) and it can become permanent. So how will you know if the movements are tics or the side effects of risperdal?

ADHD is a frequent PANS symptom- disregulation of the neurotransmitters, and what OCD tells you to do is more powerful than what the teacher, or mom or dad tells you to do.

Technical problem w/ internet service- they'll have to reschedule.

This FREE therapeutic play kit really helped my child prepare for and get through her 1st IVIG: http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html And I think the dose is 1.5g/kg administered over 2 days.

If you are NEW to PANDAS, you might be eligible for the ongoing NIH study! For more information go to: http://intramural.nimh.nih.gov/pdn/web.htm I have heard only good things from anybody who has participated.

Thanks, Laura, great article!

Okay, I left a message on the local support group's facebook page- its private only, but I know at least one of the leaders is on this sight as well, so they should be here soon.

How old is your son? There is an excellent pediatrician @ 108th ave. and Indianschool- really excellent- I'd go as far as Flagstaff or Tucson to see him! That practice doesn't take kids over 14, though. But, we also have a neurologist in East Mesa who sees all the PANDAS patients here. I'll get the attention of the support group leaders over here to help also- as they may know more in your area.

Is there a link to the recording?

Are you seeing positive results with privigen? What dose are you using? We do 1.5g/kg. We are seeing positive results in that it stabilizes her. When we have a delay past the 3 week mark, behavior begins to deteriorate and then improves again after.

We've been using privigen every 3 weeks for over a year, when we were switched from gammagard. We are actually able to tolerate faster infusions w/ privigen and she seems to get fewer side effects.

Yes, rising titer indicates some kind of contact w/strep, even if just exposure.

Thanks LLM. I always look forward to reading your chock-full-of-info posts. Sometimes I even understand them! Looking forward to the next exciting episode!

Personally, I don't think the school should be held liable, but you can't exactly sue a tick. I think many things in life are dangerous and nobody, including the school can be absoultely certain of safety. If even the CDC minimizes the impact of TBI, how can you hold the school more accountable than the CDC?

Lots of PANDAS/PANS kids have triggers other than or in addition to strep. Mycoplasma pneumonia (causes walking pneumonia) or lyme are common triggers for autoimmunity. Agree w/ Mayzoo on the ERP, but the patient has to be willing to work on it. Sometimes the anxiety is just too great. I know not everybody agrees, but sometimes using an anti-anxiolitic medication can help until they develop the skills to overcome the obsessions and compulsions.

It has been changed to:

We switched from zith to other abx, but have not been off abx for a long time. I would ask to taper off and give something if a flare surfaces- either increase zith or use another abx. It should not take 30 days for zith to leave the system, should it?

We're using leucovorin. However, we are also using Methotrexate once a week (immune suppressant, blocks folic acid receptors). The day after the methotrexate my daughter gets a high dose of leucovorin, then maintenance daily for the rest of the week. But, I've adjusted the dose (down). The neuro rx'd 15mg tablets, every 6 hours the day after metho and 1 tablet/day the rest of the week. When I tried it at that dose (even the day after metho, when she is VERY depleted), she was bawling, crying and sobbing all day long. So I cut it back to @ 1/4 tablet per dose and it works pretty well.