peglem

It seems like they may be with PEX since it removes circulating antibodies. I don't know about IVIG- seems like the donor IgG would be protective?

CamK- 242% Symptoms very severe. Crippling OCD, which seems to gobble up everything she has ever enjoyed- That's the most prevalent thing. She has bizarre movements- don't know what they are considered, but a weird "windmill" kind of dance w/ perfect rhythmic repetition that she completely does not have the motor coordination to do voluntarily, and when she does it she gets this "manic" look on her face. She does have some tics swallowing seems to often trigger a neck jerk....well there's lots more...frequent "fight or flight" type rages.....lost speech several years ago.

See, this is exactly what I thought. When we got those labs back in October, I immediately looked up info on it...and so, thought this was finally it. When we saw the immuno 11/3, he volunteered (before I had a chance to mention it) that he has an associate in the office that treats some PANDAS kids with IVIG (I may switch to his associate- got the name)...So I was very confused when I got this call, and of course, frustrated when the person making the call for him could not answer my questions. My ped is very much on my side here and the whole reason for these referrals were to try to get PEX and/or IVIG. (recommended to the ped. when he called Dr. Latimer, where he was referred when he called Dr. Cunningham). We even looked up the insurance criteria for "allowed" IVIG: An IgG defiency w/ at least 1 bacterial infection that is can be attributed to the deficiency. You're right- if there was another way to treat this-NO WAY would I ever consider IVIG. Frankly, if we do get IVIG treatment, I DREAD having to do the treatment and have no idea how we'll manage to get her through it. We'll cross that bridge when we have to. This practice does do infusions. Thanks, NGU, I'm feeling more hopeful now, too. If we are very lucky, the blood work for the rheumy (we see him again Tuesday) will show high titers (never happened before, but who knows!)

Okay, I get that "carrier status" is probably intracellular strep. So, what does the bacteria do while it is inside the epithelial cells? I mean, is it just hibernating and not a problem unless it escapes the cell? Is it doing anything to the cell? Is it giving off toxins? Is it undetected by the immune system, not presenting antigens? Will a strep swab pick up intracellular strep, or does it only detect extracellular? Trying to figure out all the implications here.

NGU, thanks so much for your help! I'm saying that since we've been on the antibiotics for so long...actual illnesses have been minimal, before that, and before her t & a, she was sick alot- sinus infections, ear infections- just constantly. After her t&a, she had a huge PANDAS relapse....but prophylactic abx were started soon after that. Do I have to yank the abx and let her get sick alot to show the doc. there is a problem? Sigh...I'm just doing what I can to survive here. Here are her numbers from her sept 28th labs: Total IgG-572, range 842-2013 IgG 1-347, range 315-855 IgG 2-129, range 64-495 IgG 3-44, range 23-198 IgG 4-4.0, range 11-157 Another place in the same report it says IgG is 546, same range. Dunno what's up with that. IgA- 15, range 57-300 IgM-75, range <282 I don't have the labs yet that the immunologist ordered...I'll call and see if they will fax them over.

Well, we've been on prophylactic antibiotics for the past couple years. Before she had the t & a, she had chronic sinus infections, ear infections...when we'd take her to the doctor, they'd either call it allergies, or give a course of abx. Frankly, they did nothing so often that we seldom even took her to the doctor anymore. She was never tested for strep until age ten (when I began to learn about PANDAS). This was when we were new to her current pediatrician. The last 2 months she's had 2 illnesses, about a week each, with fever.

OOPS! Yes, you're right- it is the K. Then there's Kirvan, too!

Thanks, NGU. My pediatrician has spoken with the immuno. The problem with a list of infections is that the immuno is convinced that my daughter is "just a carrier" of strep, so those + strep tests are meaningless to him. Before we saw this immuno, Allie's ped. ran blood work for IgG subclasses, and the other Ig's. She was low in IgG4 and very low in IgA. Her total IgG was low as well. The immuno did not rerun those. I'm going to call her pediatrician tomorrow- although getting a call through those nurses is quite a task! I just looked at Kurlan's paper on intracellular strep, which hints that strep carriage may not be benign. I sure wish there was something more definite. Okay, this is going to work out....yes it is, it will, really.

I think Buster is the one with the intracellular strep info. Edited to add that I just found this from Buster on the helpful threads thread. http://www.journals.uchicago.edu/doi/pdf/10.1086/508773

Quoted myself from Nov. 3rd. Somebody from the immuno's office called today. They got her lab results back (just the stuff the immunologist ordered, not the rheumy's -those went to him) This was not the doctor- she was delivering his message, so its frustrating if you have any questions, because she can't speak for the doctor. So, she said there were no results that proved an immune deficiency, but those pneumoccal titers are low again (we did 2 vaxes 2 years ago to get an acceptable immune response), and he'd like us to redo the vax. AAAAARRRRG. For old folks, they do this vaccine about every 10 years....so shouldn't she have maintained that response for at least 2 years? She's still showing protection levels of tetanus titers though (and that vax was @7 years ago). Anyway, I asked what if I didn't want to revaxinate, since its only been 2 years since the last vax...she couldn't answer for the doctor (I should have been nicer, but some frustration crept into my voice), so I have another appointment on Dec. 1st to discuss this with him. I'm worried that I'm going to get blown off again! Sorry I don't remember which of you has immunologist relatives, but any advice from anyone would be great! I need to know what I'm talking about by the 1st of december!

Been thinking about this for a week or so. Then read a post on an LDN forum about a 6yo that sounds just like my daughter- abnormal PANDAS + abnormal EEG. 2 years ago, my daughter had an 8 day Video EEG. No seizures were detected but a lot of abnormal spiking. It occurs to me that this may have been caused by PANDAS, ie..the antibodies interfering w/ neurotransmission. So, have any of you had EEGs, and if so, what did they show?

I've been posting for many years on an autism forum and there is another poster there whose daughter is an adult now. But her daughter was younger she was dx'd autistic before they found the chiari. They did decompression surgery (not sure of her age) and after that she lost many of her autistic characteristics. This mom has been very vocal about the connection between chiari and developmental delay, especially since many, many doctors do not believe there is a connection. If you'd like, I can get in contact with her and see if she is open to discussions with you. I think she has a website or blog or something- I can find out, if you want. We've known each other for years through that autism forum. I'm pretty sure she'd be willing to help if she can.

Yes, doctors have to dx rheumatic fever or rheumatic heart disease. And that's also a clinical dx.

Chiari Malformation can also cause developmental delays... Stephanie, you sure are having a rather extraordinary experience with motherhood! Prayers for you!

How in the world can they deny a claim that was pre-approved???? I don't have experience with that, but would think there must be some state insurance commission that it could be reported to...

I'll bet Urgent Care would swab him for you.

I can't tell if your son has PANDAS or not. But it sounds like he has some characteristics that may indicate PANDAS, its a good idea to check out the possibility. When you see the strange behaviors occurring again, take him in for a strep test...if the rapid is negative, have it cultured. The bum itching: possible to have rectal strep- if that comes back as a symptom-have that checked as well. Also, if your child is sick that often, get him in to an immunologist to check for immune deficiency. And yes, do some reading on pandasnetwork.org .

Well, but what if the strep is not producing much streptolysin? My daughter has pretty much been declared a carrier...she doesn't show any signs of infection, yet she has plenty of positive strep swabs that match up with behavioral flairs. My understanding is that streptolysin o is an enzyme produced by the strep to facilitates its attack on body tissue. So, if the strep isn't infecting, does that mean its not producing So?

This is kind of a conundrum. I thought that perhaps my daughter's low ASO, AntiDnase, in the face of confirmed strep might mean an immune deficiency...but then, if she's not making antibodies, then how could she have PANDAS?

Here is a link to a presentation about biofilms at a DAN conference: http://www.autism.com/danwebcast/videoflv....=640&VID=80 I don't know if my daughter has biofilms or not- but I looked into this quite a bit awhile back. I tend to think now that she probably has intracellular strep. She's a "carrier" so its probably one of those. She doesn't seem to have gut dysbiosis so I lean toward intracellular. Either way, though, zith seems to be the antibiotic that deals best with these issues- at least according to the science. Don't know how well other abx have been tested in this regard.

This may be a stupid question, but I'm not proud. How do we know that none of the IVIG donor antibodies are not flakey PANDAS antibodies?

I don't even remember what I wrote in the medical history, and we've been dealing with this soooo long and had so many things dismissed by doctors as just "stimming" or sensory problems- I don't even know if her abnormal movements are tics, chorea or compulsions. I'll try going through her medical records- but so many things we just didn't keep track of, because doctors didn't think they were important. Her draw was done in July, which isn't that long ago, but so much has happened since then, its hard to remember what happened when.

My opinion: Combine the steroids with abx. Steroids, as you know, suppress the immune system. If you've got latent strep, it may allow that to grow stronger while the immune response is lowered.

We did try risperdal- a couple of times actually. It made her worse, or maybe she just got worse from the PANDAS, and we thought it was the risperdal. But, each time we took her OFF risperdal (3x) we had brief periods of improvement. I just will not use antipsychotics anymore.

So, The Anti D2 antibodies are either interfering with or modifying the signal- I know you're not sure, just checking if I understand what you said. This makes sense in light of the abnormal movements I see with my daughter...she doesn't do tics out of the blue. Her abnormal movements seem to com about when she initiates a purposeful movement. Lately here (this is screwing up her eating) when she goes to bring a spoon to her mouth, its like she can't go straight to her mouth, like she's fighting swinging wide. Then when she opens her mouth or swallows that triggers a head jerk. So, unless I spoon feed her, she will only eat finger foods. So, I do spoon feed her- so we still get the neck jerks, but the food gets to her mouth. When she lost speech-6 or so years ago- there was the same sort of thing. When she would try to speak, it just came out as "puh, puh, puh", which eventually went away as well.