peglem

I don't think there is a diagnostic code for PANDAS (for insurance). So physicians who dx PANDAS code it under different dx codes- like autoimmune encephalitis. I seem to remember a Buster thread, that suggested different codes PANDAS would fall under. Let me see if I can find it.

We're going through a tough time now after a nice stretch of good times as well. Its like you've been sucker punched when it starts coming back- very disheartening. You will see this battle through, though, and you and your son will be stronger and wiser for having gone through this struggle. Wish we didn't have it so hard, but we'll handle it, and you will too!

Is this recent bloodwork, or pre-IVIG?

She only got a little upset about the bus today...seemed like she was just waiting it out for them to leave her behind. When I took her to school, she was pretty upset and fighting all the way there. Then took my hand and led me to the classroom door. Her school is set up where they bought a row of homes on the street right next to the old church building that houses the main school. Each of the houses w/ the front and back yard is a classroom, so I basically walked into the front yard with her, up to the door, then said good-bye as she entered. She had a rough morning again, and better afternoon. But, wet the bed last night- always a sign of exacerbation, and when she got home, went strait to bed (w/o me) and took a 2 and 1/2 hour nap. And she's had a couple "episodes". But also- she's getting back to the lid spinning stuff...I'm leaning toward exacerbation tonight. I did call and cancel the AM bus for the rest of the school year- @ 3 weeks. Her doc called me back. He'll work w/ me on abx modification, but wants to get labs 1st to check her liver and kidney function, thyroid, etc, etc. Reasonable- see if maybe there's something else going on. So tomorrow AM before school we'll go get the bloodwork done. Really want her more stable before the HD IVIG.

I wonder if I should try it again just to check before the IVIG...can I stand one more crazy episode? I wonder how big a difference it makes- whether it would be worth it or not.

Oooh, I like that question! Can I add one, pertaining to the benedril? Benedril makes my daughter kinda ragey, is it still recommended pre IVIG? Its been several years since we've given her any.

Won't be long now! I have a question about how this works, though. Am I right in thinking that this is competitive? So how many applications do they accept each month- how many are we competing against and how many get a grant? Is there just one grant awarded each month? Or do they take the top 10, or what?

Perhaps it would help if you include the following abstracts? http://www.ncbi.nlm.nih.gov/pubmed/10933123 http://www.ncbi.nlm.nih.gov/pubmed/20148396 http://www.ncbi.nlm.nih.gov/pubmed/12153841

Thank you for that. Its so good to hear! So, no weeks of worsening before getting better?

Yeah, guess I'm not as certain about the exacerbation anymore. If we have the same problem with the bus this morning, I'll probably just cancel the morning bus for the rest of the year. Every time they leave w/o her it just reinforces that a big fit means she doesn't have to get on the bus. Even though I don't think she's doing it on purpose yet- it can still turn that way. I didn't realize you were new to the forum- you've been so active here!

Fight or flight doesn't just happen w/ separation anxiety. We have spent years with this demon controlling our lives and ruining Allie's. We've been through countless behavior specialists- they can't figure her out. She's been ABC'd her whole life and they come to the conclusion that it is not controllable behavior and the triggers are internal, which of course means she needs medication. We accept that. We see how its like somewhere inside her a switch is flipped and she just goes off. We would be ecstatic if we could find a medication that would work to stop this. I shed my anti-medication prejudice years ago. From mid January of this year until the middle of March, we enjoyed/celebrated (not sure there is a word for it) a nearly F or F free period. She was learning again and engaging with us...OMG it was so wonderful! The magic med, it turns out is just the right combo/dose of abx!!! We have been working w/ an RDI consultant for a little over a year now. We are at the stage where Allie is accepting our guidance as parents. Stuff that usually happens naturally in infancy didn't happen with our girl...but we're working, basically, on infant social/emotional development. During that 3 month hiatus, great strides were made. So, I'm all that much more eager to get the medical issues under control. I figure it will soon become apparent if this is development or just PANDAS. We had a very lovely afternoon and evening today- maybe she's coming back.

Her school is pretty much based in sensory integration. Each classroom has a sensory room the students go to whenever they want to/need to. Recreational therapy is all sensory based. Each child has a sensory "diet". They recognize that the kids can't learn when they are so disregulated. Such a nice change from her ABA based schools in previous years! Yes, I thought at 1st it was deep pressure, and that may be part of it, but here at home- its only mom that she seeks out for this stuff. Before this she would lay on her BIG ball or wrap herself in a blanket. This needing/wanting close physical contact with me is new...and I mean ever! I could be just overly optimistic, I really want PANDAS gone, afterall! Mostly I'm just confused as to whether what I'm seeing is symptoms or progress. I know the reaction to separation is more violent than when an infant goes through it- but when infants go through this stage, they usually aren't walking yet and don't have the muscular definition or strength to express the fear with such violence. All the violence is a flight or fight type of reaction. So, I guess if its progress and PANDAS doesn't impede her, she may actually develop some self soothing/self regulation out of this? (I can fantasize!)

We have below rage total IgG, IgG4, IgA. The rest of the IgGs are w/in range, but lower end. IgM normal. The only time IgE was checked, it was nearly undetectable, in 2007.

Ugh. I've been pondering this.. seems like there are so many possibilities for what's going on. The mornings really suck...she will not get on the bus. Instead she attacks me or another family member or whams her head all over the place (really hard, glad I haven't replaced that drywall yet!) and bites herself bloody, and smashes her knee into her face...and more-but those are the highlights. After @ 10 minutes the transportation service informs me that they can't wait any longer. So then I have to take her to school. When we get to school she fights getting out of the van, but when she finally gets out, she tries to pull me into the school with her. She has a 1-1 that meets the van and is with her, so I'm not just leaving her to go on her own devices. School reports that she's having really rough mornings, but does well in the afternoons. When she comes home she seems fine...snacking, playing computer, watching tv. She may have an episode or 2 in the evenings, but in between those she is calm and doing well. She has been insisting that I lay down with her at night, and tries to wrap her arms and legs around me to keep me there, because she knows I leave after she falls asleep. Her grip slackens when she falls asleep and then I go to my own bed. She gets up in the middle of the night and crawls into my bed, which doesn't wake me up- I just find out in the morning. So, sounds like separation anxiety, right? But, here's where it gets muddy for me. This child has NEVER had separation anxiety. Being developmentally delayed, this is one of those normal developmental stages that she has never gone through. So, then...is this progress- finally beginning to go through a normal developmental phase? Or is it just PANDAS BS? Also, you know how infants need to be held close and swaddled? Again, she never did that in infancy, but is really seeking lots of hugs that she holds for a good while, and presses herself against me when she sits next to me. I can't really swaddle her- she's too big. These things would be considered regression for most kids, but I'm just not sure how to interpret them, in light of the fact that they are normal developmental stages that she has not previously experienced. The other thing is that she is not hyperactive like she usually gets during exacerbation.

I don't know anything about the situation you are referring to, but I think this forum will suffer a great loss if you leave. I want to thank you for all the time and expertise you've shared to help our children, instead of just walking away when you no longer needed advice. I hope this is not your last post, but if it is, I understand and wish you all the best.

Interesting. On the thimerosol thing- I don't know if it ever caused damage or not, but it seems ridiculous to me to even study it! Don't inject children with neurotoxins- just seems like a no brainer to me!

I have UnitedHealthCare. I'll be sure to report back on whether it goes through without a hitch. I'm still worried about it. We leave in an hour for our first treatment! Susan Much as I hate to praise an insurance company- UHC has paid for the 2 IVIGs that my daughter has gotten and they also gave me a gap exception for our Dr.L visit in January. We only had to do the $35.00 specialist copay. (Well and the cost of 4 airline tickets and a week's hotel stay and rental car....But, still) I don't know if they required pre-approval for the IVIGs- immuno's office dealt with all that.

Yes, but read the comments..OUCH!

Thank you for posting this. He said everything I was thinking during the show (except, I didn't know they had footage of physicians who are not sold on vaccines). My fear is that the political groundwork is being laid to require that children be vaccinated in order to be covered by insurance...

I think the docs who really know PANDAS know the limitations of titers. I can't say specifically what Dr.B does, but ASO, antiDnase titers are not diagnostic for PANDAS. I'm guessing he knows that.

This is a little off topic and maybe TMI but I know when ever I have been on prednisone personally- it really messes with my period- comes when it is not supposed to , may be longer than normal, heavy spotting mid cycle. I wonder if the prednisone messing with the hormones and the period affect Pandas symptoms in teen girls. My daughter had her 1st ever period immediately following her 1st ever course of prednisone, but more than that it was like she went through puberty overnight- w/in a week her body changed from a little girl to an adult woman. I asked her doc about it. He said ultimately the body converts prednisone to sex hormones.

Peg I know this is hard really hard.Dannys 1st few IVs werent good at all.What are they using?Is it gammunex? I just posted something about different IVIGs.Ourmd isnt going for the higher dosage no matter what so Im giving up.Hes doing better since the gammunex and now Im thinking about the other one.My md treats tons of autistic patients and knows her stuff.I wish I could help more.Your always there for me and danny. Your friend, Melanie She's been getting gammugard. I talked to the immuno the other day about brands. He likes to use privigen (I think that's right- privi something), because he says its put through finer filters, and since they can't screen for prions, there is a small chance of mad cow disease passed through IVIG- privigen, he says has a better chance of that not happening. I don't know what was ordered for her 1st IV, but I know the infusion center had to call the doctor because they didn't carry the brand that had been ordered, so we were given the gammugard. Allie is doing okay this afternoon, but, that's between erruptions. She's either just fine or the switch gets flipped and she's suddenly possessed.

I quit work, cutting the family income in half, to stay home with my PANDAS kid. I was a teacher, and my last year of work, I was constantly leaving work early or taking days off. It wasn't fair to my students and way too much stress for me. Whenever I look at part time jobs I could do while she's in school, it keeps coming back to what do I do when she has a doc appt. or a procedure?

Last time we tried fish oil it gave my daughter tummy pains and awful gas. No prob getting her to swallow pills- she even handles those big old augmentins! Been giving lots of ibuprofen, except while she was on the prednisone.

Thanks, nice to know someone else knows exactly how I feel here!