peglem

So, I wonder what happens when you vaccinate w/ plenty of adjuvant, but low antigen? You provoke an immune response to...?

I'm not terribly sensitive about it. You can tread heavily if you'd like. I guess we're looking at about 10 years ago that we started desperately trying different supplements and what not, via info from ARI. 5 1/2 years ago was the experience w/ the actual DAN practitioner. He has a fabulous reputation- and a long waiting list for people trying to get in to see him. Anyway, my intention is not to disparage the DAN doctors or alternative remedies- I think its wonderful that these doctors are at least willing to try- that's a lot more than any conventional doc would do back then. It has not been unusual for professionals that deal with autism on a regular basis (medical/educational/psychiatric) to find that my daughter is an unusual case. Its okay- we're on the right track now and I'm not bitter. It was VERY frustrating back then, however, having nowhere to turn. I got the same kind of treatment from the docs at the local children's hospital as well...nobody knew what was going on-nobody wanted to try to find out, and nobody would lift a finger to help. And yet, I know these doctors do good work and help a lot of kids- just not mine apparently!

Antibodies are made by the immune system to combat microrganisms (like bacteria). Antibiotics should reduce bacteria- so your immune system should make fewer antibodies to bacteria if the antibiotic is working to reduce the bacteria. But, ASO and AntiDnase titers are not antibodies to bacteria. They are antibodies to toxins that are excreted by strepA. ASO and AntiDnase do not cause illness. They are made by the immune system to remove toxins made by strepA. So, if your son has been on antibiotics and had IVIG, the question is where these high titers came from? If the dose of IVIG was high enough, your son's own production of antibodies should have stopped (or been greatly reduced) until the donor antibodies go down enough that the bone marrow is signalled to make more. So, I was thinking they were either -made by your son prior to the IVIG and are still circulating -introduced into circulation w/ the IVIG (I'm thinking they would not be screened since they are seen as protective against the aforementioned toxins) or, they are being produced by the donor IgG in response to toxins from strepA. This is speculation by me based on what little I have learned about the immune system and IVIG. I don't know much, and if I have this wrong I certainly hope somebody will come along and straighten it out...then I'll learn more, I guess.

Remember, you are not measuring the antibodies that cause PANDAS w/ ASO and AntiDnase...and I would be suspicious of these results because its hard to know what is going on after IVIG. Were there titers in the donor plasma that increased total titers? Did your son have some undetected strep somewhere that the donor IgG is clearing? If PANDAS symptoms have increased-have the abnormal antibodies that cause PANDAS risen? Or has something happened to the BBB to increase antibody access to brain? You mentioned that he definitely does not have lyme disease- wondering how you know? Really I wonder how anybody can know- neg. test results do not rule it out and all the symptoms could be caused by something else. Honestly, I don't see how anybody, including lyme literate doctors could say for sure. Do they rule it out by a non-response to lyme treatment?

When my daughter was an infant and toddler, she would fall asleep like somebody had flipped the sleep switch any time she was overwhelmed with sensory input. We were told it was a defense mechanism. When we flew to see Dr.L at the beginning of January, she did this as the plane was taking off (scary, because she was on a high dose of valium at the time). I've never thought of this as sleep, though, so much as shutting down-

I wanted to reply to your question w/o sidetracking Bubbasmom's thread (IVIG triggered more symptoms) I want to start by saying that I'm thrilled that DAN docs have seemingly helped many children with autism. But..... My experience has not been great. The problem I have is with the whole "protocol" mentality (I have this same problem w/ conventional docs). It seems to me that DAN docs are very prone to fads. By that I mean, it seems like every time some patients have success with a treatment, they all seem to try that treatment for all patients. Early on in our journey, online correspondence with other parents of autism detailed their treatment regimens and I tried many things with my child, oh so hopeful that she would respond as wonderfully as theirs. Diets, secretin, supplements., etc...there was always something new that didn't work. I think the problem I had was that they were treating autism as a single disorder and not looking for the individual, underlying cause(s) of my child's symptoms. We twice saw a local developmental pediatrician who is a DAN doctor. He seemed shocked by my daughter's behavior, like it was unusual even among his patients. His recommendation was a trial of naltrexone. This was before the low dose naltrexone (which I did try last summer), but when I looked up research on it...well it just didn't make sense to me. My daughter was so miserable (at that time she was about the worst she's ever been) and the theory that she was beating herself up in order to get an endorphin high just didn't seem to me like that's what was going on, but also, blocking endorphins on a child who clearly is so miserable...well, that seemed like a bad idea to me. The SIBs have never seemed to calm her. He did not order any tests to try to find out what was going on with my daughter...just suggested treatments that had worked for others. We tried the whole Pfeiffer thing as well. I wish I had all the money that was spent on these treatments that were ineffective for my daughter- I could buy an awful lot of Cunningham tests! I've heard many, many of those miraculous recovery stories...I hope they are true. I wonder how things would have been different if early on, say @ 3yo, somebody had just thought to do a swab for strep...

I found it! http://www.latitudes.org/forums/index.php?...son%27s+website

I just had an idea- there is a PANDAS kid here- 13 yo, who has made his own PANDAS website. I wonder if it would help your daughter to contact him and look at his website. I just spent a lot of time trying to find the link for you....but I just can't find it. I know somebody has it (his mom posts on this forum) and I hope someone will be able to supply it.

Thanks for all the hurrahs and pats on the back! But, I don't see myself as a supermom at all. I'm pretty much the same as you all are...just trying to get my kid what she needs. There have been an incredible lot of failures, gave up many times. In the end, more than anything, God has sent what was needed at the right time. Online support from other parents and a wonderful pediatrician (our angel). Allie's siblings (all older than her) are great and this last year especially, hub has been terrific as well. You know, nobody can do this all by themselves- though I did try that for awhile as well. (hence the failures and giving ups!)

Oh, dear! That is so hard. In some ways, I think the backslides are harder than the initial symptoms. The feeling of dread, because now you know how bad it can get...I'm so sorry. Hope this is a short downturn with a quick and amazing upswing just around a very near corner.

Is there a friend of hers or yours that could come along? You will need help getting her there. When we flew to see Dr. Latimer, both hub and I went, as well as Allie's hab worker (who just happens to be my oldest daughter). We could not have done it with less- managing scared Allie is a 2 person job (at least) and then somebody had to take care of just trip details- luggage, checking into hotels, etc. I really sympathize with you on the stress of all this....we really, really planned, but there are just so many things that you can't anticipate. Preparing Allie was so important, and the timing of that preparation, too. Start too early and you drag out the anxiety. But, you can do this. It will be hard, just keep your eye on the prize- helping your daughter recover, just think how sweet that will be!

First the background: Allie is 15 yo- nonverbal, severe autism (believe that PANDAS and/or immune dysfunction caused all that). She has been suffering with this since about 1yo. Major symptom that interefered most w/ functioning and learning was severe Self injurious behaviors (head banging, biting hands mostly). Last summer we had the Cunningham test done on her- CamK=242, very high antiD2, this was during what we thought was not exacerbation, but we really have no idea what non-symptomatic looks like. At any rate she was not as crazy as she'd been and was on prophylactic zith, so we thought she was doing better. September 1st, she tested + for strep. With that and the Cunningham results, was able to get the pediatrician to begin getting more aggressive w/ treatment. We saw a good response to 5 days of prednisone at the end of September, then had dental work and was cutting 4 molars at the beginning of Oct. October and November- no mistaking that she was in exacerbation! Finally, in December, pediatrician decided to try treatment to clear carrier state (10 days rifampin w/ high dose augmentin) and things began to turn around. Then she was placed on a higher dose of zith (500mg every other day, after 5 day "loading" dose). By January things had improved dramatically and we were seeing very little self-injury (maybe twice/week, but very brief even then) or aggression. March 24th we finally had her 1st IVIG, but I was hesitant because the immuno would only give the standard dose to treat immune deficiency (which she has). We went ahead anyway...the first week saw slight increases in aggression and SIBs, but for the last 2 days she's been back to her pre-IVIG improvement levels. That's a relief, I was so worried we'd made things worse! She will be getting IVIG ,at this dosage level, every 3 weeks. As I said, we don't really have any idea what "baseline" should look like, but right now, she's doing better than she has since about 2 or 3 years old, and I'm happy with her progress. Still not seeing an independent future for her, but this has made the difference between a certain institutionalized (and very drugged) adulthood and a future where she will probably be able to live in an assisted living setting. I have hope for her future for the 1st time in 10 years and I'm not afraid of that hope anymore. We feel hugely blessed!

My daughter's psychiatrist prescribes it right now, but her pediatrician did before- once he saw her "go exorcist" and realized what I was dealing with.

Baxter makes an IVIG therapeutic play kit and they will send it for free: https://webforms.baxterbioscience.com/immune/order.jspa I don't know how soon this will be happening for you, but when I ordered one it was sent w/in a week. This really helped my daughter. Its really geared towards younger kids but it helps them to understand what exactly will happen during the procedure and why they need the procedure. Are you flying or driving? We used valium (diazepam) to help her relax enough to be able to (sort of) cooperate. This helped both with flying and with getting IVIG.

Clozapam? That's a benzo, right? Hope its wonderful for him! Are you going off the risperdal cold turkey or tapering down? I know he's on a fairly low dose, but I know Allie really crashed when we withdrew her last bit...but once she got over it, was much, much better!

I wonder that, too. But also, I wonder if PANDAS actually is a normal, transient reaction to strep that most kids get over, but for our kids, for some reason it goes chronic.

I think it is too early, but I'll bet it'll be difficult to get it covered under government insurance as well.

My 19 yo daughter was just dx'd with a teratoma cyst last week (in the ER). BUT no psychosis or MI symptoms. She's having it removed next Tuesday...surprising you posted this now.

I wanted to bump this up so newbies could see it. This kit helped my daughter so much! She is 15 and non verbal and so, so afraid of needles- we've been refused service at labs when she needed blood drawn. When I 1st used the play kit w/ her, she RAN when she saw the play needle, then just sort of watched from the corner of her eye. But by the time her IVIG was scheduled, we were IV-ing every stuffed toy in the house (I didn't realize there were so many ), and SHE was putting the "needle" in. When she had her IVIG she knew exactly what was going on, what would happen and cooperated so well!

Wow! I prayed for your success! So, do you vote now, or do we have to wait until May, when its official?

What is the difference between these products?

Bed wetting is one of our early signs that exacerbation is here.

VERY possible! The immune system makes antibodies upon encountering pathogens, even before an infection. In the case of PANDAS its the antibodies to the strep, not infection, that causes the neurological symptoms.

Dr.L reviewed my daughter's MRI, showed me her basal ganglia, but said you need a "volumetric" MRI (I think that's what she called it) to detect swelling or inflammation.

So what's the difference between the 2 that she thinks will make a huge difference? How is gammagard different than those 2? We did the first IVIG on Wednesday- low dose-just under .5g/kg- its been almost a week and so far, she's a bit worse than she was before...She's way better than she was in full exacerbation in November, but not as good as she was in Jan, Feb, and up til the IVIG. We're supposed to do it again in 2 more weeks (3 weeks apart) and again every 3 weeks. From what I can tell from researching dose-this is the proper dose for immune deficiency. I so much would love to see research on dosage in PANDAS.