peglem

Meg's mom, that was so well said! Thank you!

I would think the goals would be the same as other children of the same age, unless your child has particular deficits that need to be addressed. Usually this goals are taken from prior assessments. I think I'd be paying very close attention to the accommodations that will be needed in case of a PANDAS flare- those can make or break the ability to meet goals.

That's about the coolest thing I've heard all month!!! So happy to hear!

Cunningham does not use ASO and AntiDnase B- these are antibodies to strep exotoxins, not strep itself. I think these are antibodies to the M protein component of GABHS, but you should ask Dr. Cunningham. It appears that there are nonstrep triggers for elevated CamKII, I think Lyme is one possibility, but I don't think other triggers have been studied.

Meg's mom, That was amazing! And yes, knowing how to take the 1st step...knowing where to start, that's the difficulty here. I actually think this fear stems from safety training at school- in case of fire do not use the elevator. I'm not sure if she thinks using the elevator will start a fire or if she's afraid one will start while she's on it and she will not be able to get off... It was easier to deal with the elevator when she would just avoid them. I'll start with stories and songs.

Just wanted to add that I've found this website to be a great resource: http://mychildsafe.org/rage.htm

With zith, its all about maintaining levels. So the initial dose of 500 is a loading dose then the 250/day, I would think, would be sufficient to maintain levels since the 1/2 life of zith is like 60+ hours.

I treat the rages as though they are seizures- something that happens to my daughter that she hates, but needs help to work through. Fortunately my PANDAS child is the youngest, so my other kids have actually turned into helpers with her. But when they were younger, they'd just get out of the way! You need to remember that the things you say "no" to that trigger the rages, could very well be not just things he wants, but things his OCD needs and the anxiety of not satisfying the "need" is powerful. We.ve talked to my daughter about it when she is not in a rage- let her know we understand that this is something that is difficult for her to control, but assure her we will help her when it happens. We laid some ground rules (which works most of the time)- She must get away from her grandmother when this happens, so she doesn't hurt her. (gma is a bit frail) If you can, help him make some sort of plan (during the lucid times) that will help him stay safe and the rest of the family too, and will give him a sense of being able to deal with these episodes. We've come to treat each episode like a chance to practice getting control.

So, why were the polio titers even checked?

My daughter (nonverbal, communicates poorly, so can't discuss much with her) has this thing where she fixates on something that is clearly upsetting her. Its usually a toy or something that she used to enjoy, not something that is inherently upsetting. She will look at or clutch the item, clearly terrified. On good days she will allow us to remove the item from her presence. On a few terrific occasions she has given us the item to clear it away. But too many days are not like that and we cannot get her to give up the offending item. Elevator avoidance has turned into this. If she can see the elevator from the waiting room- she will not go back to the exam room w/o a LOT of help and coaxing. She does not want to go on the elevator (or at least cannot get herself to that point). And while in the waiting room and she is looking out at it- there is clearly a lot of anxiety from it. But, by golly, she is unable to tear herself away from it. Last Thursday, after IVIG, it took us 45 minutes to get her out of the hospital lobby- after we had already come down the stairway, because she was fixated on the elevators. That sure is a long ending to a long day!

My daughter has had 3 5-day bursts. The first one was in the midst of a bad PANDAS flare. She was having dental problems at the time. During the course we saw good improvement, but by the end of the burst she was sick with some kind of infection (guessing viral because she was on abx at the time). Thinking the steroid suppressing the immune system allowed the pathogen to proliferate. We saw only a little improvement with that one and only during the burst. 2nd burst given w/ high dose, heavy duty abx combo- heckalotta improvement! Just not sure if it was the abx, burst or both combined that brought about improvement. We just finished our last 5 day burst a week ago- normal abx (500mg zith) with a 2 week course of bactrim on top. We started the prednisone 5 days into the bactrim, so we could see if the bactrim alone would help. Just the bactrim (on top of her regular zith) did nothing. Prednisone did give us a modest improvement (she has some molar related inflammation causing mouth pain), but nothing as magnificent as that second burst. I would recommend abx before, during and after burst- because there is no way to know if there is some underlying infection that might bloom rapidly if the immune system is suppressed.

Very sorry to hear this. Praying for you guys! Maybe this will help get some things figured out!

Its just the way the immune system works- when it detects foreign invaders, it mounts an antibody defense. If those antibodies are problematic, they are just as problematic w/o a full blown infection. Its not the infection that causes PANDAS, its the antibodies and those are made just w/ exposure...in an attempt to prevent infection.

I have an autistic daughter, nonverbal, rages in exacerbation (including SIBs and aggression against caregivers). We did not discover the strep until she was 10 years old (because as you probably already know, autistic kids have a difficult time getting even routine medical care). Between ages 8 to 10, my daughter lost a lot of skills that we had painstakingly helped her to develop. My daughter got much worse w/ the LD IVIG, we think because of the pro-inflammatory properties. She has 2 LD infusions, 3 weeks apart. She has done much, much better on the 1.5g/kg dose. She's had 5 of those, 4 weeks apart. Not sure which treatment is responsible for diminished rages- IVIG or prednisone followed by rifampin/augmentin combo. She seems to slip back a bit every 3 months or so, even w/ the IVIG, though she is no where near as bad as she was a year ago- so we're trending in the right direction. She's learning again- something that frequency of rages would not permit in the past.

We have not been able to detect strep or myco in other family members- except an older sis who would sometimes get symptomatic strep at the same time as Allie. It seems that Allie was the carrier. Incidentally, IMHO, a positive swab is better than titers for checking infection, as long as the "swabber" is good at it. Titers usually will not tell you if the infection is current and lots of false negative titers, and they can be raised just from exposure, w/o actual infection.

If IgM is elevated it means the infection is current. IgM is kind of an IgG precursor. Elevated IgG could indicate current infection (if its not the first one), but don't know how high it would have to be to show infection vs protection from exposure. I would think elevated IgG + clinical symptoms would warrant treatment. Just guessing what their thinking may be. Also, some docs may not consider MycoP AB to be triggers.

We use a melatonin valerian root combo. The melatonin helps her get to sleep and the valerian helps her stay asleep.

PANDAS does not require a bedtime ritual. Most PANDAS kids do have rituals, due to OCD, and many share similar rituals, but it is the OCD itself that is a symptom, not the way it is manifested. The 12 day cycle is puzzling, but I think it is a valuable clue in the hands of the right physician.

More prayers from here!

My daughter gets 1.5g/kg every 28 days, and it used to be really, really tough for her. We now are able to do it all in 1 day (takes only @ 1 hour more than 1 day of the 2 day regimen). The other thing we've done is have an IV port implanted- that has made it way, way less traumatic. Yesterday, she didn't even notice when they accessed her port- her attention was elsewhere. Now, all we have to do is keep her entertained for @ 6 hours! And, I almost forgot- the Baxter IGI V kit (free on the Baxter website) is a great tool for play. We IV'd every stuffed toy she owns at least once with that before she ever got an infusion. It really helped that she had a chance to get to know the procedure before hand.

Has she had any immune function testing? Sounds like her immune system kinda got thrown for a loop there- or maybe was already in trouble and that's why she caught everything at once? When she had strep at the same time as mono, did she get abx for the strep?

Geez, I find myself agreeing with everybody here! I think there are people getting treatment when they don't know what they are dealing with yet and the doctor's put the pieces together. (and don't necessarily call it PANDAS) I certainly understand why a doctor would not want to be known as a PANDAS doctor, only to have their practice overrun with patients whose parents have self diagnosed and and continually second guess treatment according to what they have heard on line. I'm not trying to disparage anybody- its just when we're living in this h3ll and cannot get answers anywhere but the internet, mostly from other parents, we get a little pushy sometimes, because we so desperately need our children to get well. But, I also think there is a flip side to the "severe enough" to get treatment category, and that's the "too severe" to get treatment category. That seems to be where my daughter is, and she is only getting treatment because her pediatrician and I pushed so hard for her. Right now, her pediatrician is getting pushed back and second guessing some things and I'm confused as to what is exactly going on. Wondering if things would be going better now w/o the PANDAS dx. I think for sure misdiagnosis of a psychiatric/behavioral disorder really puts you in a bad place. Our last appointment with my daughter's psychiatrist (when my daughter was doing MUCH better than she is now, due to medical treatment), the psychiatrist was very interested that she got better w/ medical treatment and stated that psychiatry deals with symptoms and they seldom know the underlying cause.(I'd venture to say they seldom look for one, either, but that's often true in other medical disciplines as well). So, I'm not even sure that a psychiatric "diagnosis" is a misdiagnosis, as much as it is just a descriptor of how the disease is manifested. The problem is that the medical community accepts psychiatric "diagnosis" as the final word.

And she has found 4 antineuronal antibodies that interact w/ basal ganglia- but nobody knows how many more there may be, or what other phenomena may be behind elevated CamKII activity.

If by strep titers, you mean ASO and AntiDnase, those are actually antibodies to strep exotoxins- they are not the antibodies that are causing basal ganglia malfunction.

Welcome! Your post really touched a chord with me- so, many doctors considering me crazy for "being in denial" about my child's autism. I still hate going to see new docs or specialists. Its so scary when you KNOW something's going on and you can't get docs to investigate. Where do you live? Maybe somebody can suggest a doctor or 2 for you. Frankly, it sounds to me like your child is suffering from some infection related disorder. Does your son come back to himself w/o medical interventions during these cycles?