peglem

These threads give a good overview of what we here have learned about PANDAS/treatment. I would say most of us have not seen success w/ regular psychiatric treatments. http://www.latitudes.org/forums/index.php?showtopic=6265 http://www.latitudes.org/forums/index.php?showtopic=6266 http://www.latitudes.org/forums/index.php?showtopic=6688 Welcome to this sight. Looking foward to getting to know you and your children.

After that have you ever seen it again? I hope not- it was very strange and scary and with him it takes a lot to make me fearful anymore! Thats a good theory though, the seizure part hhhmm. Just saw it the one time, but it was shortly before a follow up appointment with the neurologist...she started taking Lamictal. We had seen very brief (maybe 3 seconds) of these kinds of things during normal activities. They did not show up as seizures on the veeg, but they did abate w/ lamictal use. Yes, when your in the midst of a very scary rage and then something like this happens, it gets even scarier. Not idiotic, completely understandable!

We did have @ 30 seconds of catatonia during a rage once...very strange, we thought it was maybe a seizure.

and, in case you need a 2nd opinion- I'd get a new pediatrician.

??? He doesn't believe in rheumatic fever?

Its been at least 5 years, but no, the only thing they had was the Td, and the adult version had both as well. This was both at the urgent care facility and the emergency room. When I questioned the need for the diptheria part, they said the tetanus wasn't available by itself...but they were, as I said, huffy, so maybe they were just saying whatever to give me the brush off.

There have been a few "instances" when my kids needed tetanus shots after injury. No place around here seems to have just the tetanus- it always is combined with diptheria (Td). When I ask about it, they get very huffy! The other thing I wanted to mention, is that tetanus titers are usually tested when you get an immune workup- if you do that you may find that his titers are protective, so you wouldn't need to do the vax in that case.

So, you think these are tics? We decided to forget trying to repair the walls in our house until we get this under control, its such a losing battle!

Sorry this got so dang long- Allie's history is a bit complicated. My daughter is a bit of an anomaly, in that she began self injury at @ 18 months-whamming her head on the walls and floors-HARD! By about age 2 1/2-3 yo, she had added biting her hands and wrists-bruising and tearing the flesh. Aggression towards others occurred whenever they tried to intervene to stop these behaviors. Back then it was a couple of times a day. At age 3 she was identified as autistic. Age 4 saw an explosive amping of these behaviors-for hours at a time-very violent and exhausting. But it was very much like somebody flipped the "demon" switch- they came out of nowhere w/ no apparent provocation, and they ended quickly as well...she'd be raging full steam, then all of a sudden cease raging. Puzzled teachers, therapists and physicians all came up w/ explanations that seemed to miss the mark (to me anyway)- she's frustrated, she needs the input (whaaat?), we reinforced it by giving her attention when it happened (we had to keep her from hurting herself, didn't we?). We did try to ignore it- no difference, except she would hurt herself! We saw improvement when it was discovered that she had an abcessed tooth and that was taken care of. So we went along- had periods where things got better, and hellish periods where they got unbearably worse- usually preceding and during illness. She had many many sinus infections and ear infections- usually beginning in October until @ April. Antibiotics would lessen infections, but not clear them-the only connection made between the behaviors (which were thought to be part of her autism) and improvement on abx was that "of course, she's not as irritable when she's feeling better"-that's normal. Since abx were not really clearing anything, doctors decided it must be allergies (common in autism) and we seldom even got abx after that. Around age six, the violence and SIBS were so bad, we began to fear she'd have to be institutionalized. Though I hated the idea of psych meds, seemed like the only option at this point. SSRIs did nothing at all. Risperdal seemed to help at 1st...maybe just because she was finally sleeping. But within a few months things were just as bad as before. Trileptal made her much worse...abilify didn't help, zoloft no good... Finally at age 10, we found a pediatrician who would help us try to figure things out. Her first strep test was positive- no symptoms of strep at that time. 14 days of Keflex did improve behaviors- not gone, just not as bad, which after what we'd been going through for the past several years seemed amazing! But 5 days after finishing-she got worse. I took her back in for another test- slightly positive on the rapid (I heard the nurse and doc talking about it outside the room-she thought it was positive, he said no way, not after 14 days of keflex) The culture was neg. so no abx was given at that time. Later that year we had a really bad amping of SIB and aggression...and that began the 18 months of abx treatment, symptom improvement, behaviors back 3-5 days after abx w/ +rapid. ASO and AntiDnase was tested several times and always came back low. Had tonsils removed- she got much worse because she had no abx for a few months after. She was actually kicked out of a special needs school that specialized in behavior management. As her pediatrician and I learned about PNDAS together-we became convinced that's what was happening, but all we had to go on at that time was the NIMH info and Swedo's studies. The pediatrician sent us repeatedly to immunologists and rheumatologists, trying to get help and IVIG for her, but they had trouble seeing past the autism and did not help. Finally, last Summer, had the Cunningham test run on her...antiD2 very elevated and CamK II was at 242%. She was not in a "bad" period at that time and was on prophylactic dose of Zith...but I think the dose was not high enough because she tested + for strep again in September. The Cunningham results gave the pediatrician something he could work with, though, and he consulted with Dr. Cunningham and Dr. Latimer, and once again we tried to get help from the rheumatologist and immunologist. The rheumy talked with Dr. C and Dr. L, decided not to risk it (oversight committee at the children's hospital) and referred us to Dr.L. The immunologist finally agreed, after the ped. talked him into it, that he would do IVIG if Dr. L recommended it. She did and he will...soon. So, She lost what little speech she had at age 8, so #4 doesn't apply. I think this happened so early in Allie's life that it changes the way she presents. 8 day VEEG was abnormal, but did not show any seizure activity.MRI was normal, but was not volumetric. I wonder if her titers were high way back when all this started. We'll never know.

Maybe its not just a question asking compulsion, but an asking mommy compulsion...you may be a part of that one. And yes, most people act like I'm crazy when I talk about PANDAS...its so nice when you can talk to a doctor who knows and believes what you're talking about.

I suspect that many of the cases of regressive autism (around 18 months-3years of age) are, in fact caused by PANDAS. Onset at 7yo is not apt to be called autism, because early childhood development has already been completed, and technically autism is not a degenerative disorder. The difficulty I have in answering your question is that I have come to disregard autism as an actual diagnoses. If you look at the criteria for autism, its really just a list of symptoms. My opinion= PANDAS can interfere w/ development, producing the symptoms of autism. If a 7 year old has PANDAS and suddenly presents as autistic, it is almost certainly is caused by PANDAS. But then, I also believe that all cases of autism have an underlying cause of pathology or injury.

I live in Phoenix. My daughter gets flares and exacerbations in the fall and winter as well. I think schools are germ factories!

I don't have any advice- it sounds like you're doing the right thing w/ Dr. K and the treatment. Just wanted to let you know that I feel for your situation. No matter how many exacerbations we go through- its always so scary when it hits hard like that. It will get better again...and you'll get through it.

That reminds me- my daughter goes through phases where she has to close her eyes when food is in her mouth.

Thanks, NGU! But, haven't come this far in a vacuum, had lots of help and support from y'all here, too. Here lately, I haven't even really felt like I'm fighting...just accepting the journey and seeing where God leads us. So much less stressful.

I think it would be a good idea for you and your 19yo to go ahead and do a course of abx as well- better safe than sorry! The nurse's interpretation of the elevated #'s may be correct, it makes sense to me, but I think that is more conjecture than proven fact, and I'd rather be on the safe side. I wonder if 2 weeks after treatment is enough time to see a drop in titers?..and these tests do not indicate current infection (don't rule it out either).

My daughter is improving on a higher dose of zith than she used to take. She's kind of stabilized as far as # and severity of symptoms-a great deal better than she was all of last year, but I think I'm beginning to see newer compulsions fading as old ones re-emerge. (she's tipping over trash cans again-haven't had that in a few years!) I think she's slowly "turning back the pages" as I've heard it called here. We will be doing IVIG soon (please God) and hoping to see more improvement then.

Hey Peg When is allie starting?Any news from the insurancwe company? melanie I'll call next week and see how that's going- its been 2 weeks, so I'll just check on progress.

What I've heard from the pediatrician (for more than one of my kids), is that it is okay to give the allowable dosage on the bottle for short periods of time- like to nurse them through illness for a week or so, but the concern, aside from the stomach is that it's cleared through the kidneys. So, especially if on other meds that go through the kidneys, you need to be careful.

So very good to hear! I was just thinking about you and wondering, too!

I wonder about this too. The immunologist says if my daughter had a "true" immune deficiency that she would be sick all the time and seriously ill, enough to need hospitalization. My daughter used to be sick with sinus infections and ear infections and abcessed teeth quite nearly all the time. (from ages 3-8 or so). Its only since we've been on abx that she's not Something changed right in there around 8-10 yo...when she lost her speech...she was "sick" much less frequently, but behavior/motor skills (already poor) really took a huge dive...global regression in already poorly developed areas. So, I wonder if earlier on if her immune system was fighting so hard and so long that it just became overwhelmed so that we no longer see a strong immune reaction-(fever, runny nose, cough, sneeze). When we did the pred. at the end of last Sept. she became ill immediately after. I was actually kinda thrilled that she produced a fever with that illness...a sign that her immune system was responding.

Antistreptolysin 0 Ab- this is the ASO titer. I have never, ever seen one that low. Not sure what it means to have that so low. I'd be curious what your child's total IgG, IgG subclasses, IgA and IgM are. EOS- eosinophils: a kind of white blood cell. Here's a wikipedia link- not the best source for solid info, but a brief explanation that can point you toward more explicit sources. http://en.wikipedia.org/wiki/Eosinophil Don't know how high the EOS was- but that is a sign of some kind of infection.

Are you just on a course of abx, or long term? What's the overall treatment plan? Or, is it too early for that?

If the abx is helping, it sounds like your doc made a good call. Nice to hear that there are some pediatrician picking up on this before the parents come begging to have it checked. But, I wonder why you're leary? What kind of testing do you want done?

Here's mine. I put "+" for exhibited symptoms, "NO" for what we haven't seen, and explanations for what I'm not certain of. I am not forum-sophisticated enough to know how to operate a "poll" on this. But I am VERY interested to know how many parents of kids with diagnosed and/or treated PANDAS have/had these symptoms. My son has exhibited all but 8 over the years. Does anyone know how to start a thread with this as a poll where we could track this?