otksmama

My son was on a ten day course of augmentin and biaxin, per dr t, then dr k extended the augmentin four more days. I would say he largely did not improve. What does this mean? He's been in this flare since he was sick in march. I would say he doesn't have sx of chronic infection. Why is he stil in this flare? Does he not have Pandas if he doesn't respond to abx?

Good to hear wonderful news! It means so much after spending a day with our 6 yr old who was at a level 10 with all behaviors, thinking how can we go on another minute. I, too, want to know about how you managed to get healthy. We are at a crossroads...ivig w long term abx or homeopathy. I'm scared to death nothing will work. In hindsight, what worked best and what could you have gone without?

LLM...is it a stool test I can buy or have his pediatrician order it?

We haven't had our son tested or anything for yeast...what are some symptoms of not-so-obvious (e.g., white patches in mouth, etc) yeast overgrowth?

Yes my son did this too when school was in session. Was so angry every day after school, I kep thinking something surely was going wrong during the day. So he got worse when I picked him up. But then everything hit a level 10 once school was out for the summer.

I haven't listened to any of the Sumer flares radio talks, but what is the meaning of calling it that? My child's flare began in April with obvious changes, but stuff really hit the fan early June. Is this typical w pandas kids...that they can sort of hold it together before all H breaks loose?

Thx for the updat, things sound great! Dr k told us the same thing re ibuprofen. Never heard of liver damage? Tylenol, yes, but Ibu?? We are still doing the 14 days of observation post steroid burst. Haven't seen big changes yet. What happened with your child after the burst and when? Where did you go for the ivig? How soon after steroid burst did you get ivig? Was ins able to cover?

Rowingmom, where can I see this video? All I can find are bits of it that were shown on the today show. Do you know which ones were similar?

I'm not sure what they are...tics, OCD, adventitious (dr k first mentioned this), or choreiform. But I'm curious if any others have children with similar behaviors... He touches things. Sometimes with his whole hand, sometimes just one finger. Even hot pans. He gestures (as in "come here" or pointing to something of interest) while looking at the gesture. Lining up tips of his fingers, palms facing him. Looking at his hand, palm-side. Holding onto something, like stroller handles, monkey bars, bicycle handles and quickly releasing and grabbing again Even when something is not in his hand, he will loosely make a fist but barely open and close it Dragging top sides of feet on ground when walking Hopping, sometimes while looking at feet lined up beforehand Biting objects Touching objects to his tongue Fingers in mouth Laying face down on floor and rolling back and forth. I'm pretty sure it's a pleasure inducing thing, so I've encouraged him to do this in his bedroom. But he does it pretty much every time he feels the urge to urinate...the he'll stop whatever he's doing and lay down. He continues this for 20-30 minutes then he'll hop up and go to the bathroom. Anyone else seen these? Any explanations for them?

I'm not sure what you mean, pr40, when you say it's not the inflammation that's harmful but it's the reaction to it?

Today is Day 5 of 5 for my son's steroid burst. Dr. K prescribed about 25mg once a day. He said do not observe during the five days, but after that for two weeks. Is this because changes are not likely to occur during the therapy? I hope not...as symptoms are still in full force! Can anyone explain why the delayed response? I would think if treating inflammation, a reduction in symptoms would be almost immediate and ongoing with each dose administered. Also, is it very obvious when symptoms subside? Or is it very gradual and slow? Or is it up and down, like coming and going? I'm a bit concerned I'll miss something, since he'll be starting school in two days. I've asked the teacher to email daily with her observations. And another question about exacerbations: this has lasted 5 months. Is that typical? Sometimes I am shocked to think this nightmare has lasted that long. As much as each day is truly awful, it's gone fast and I'm sad he/we had such an awful summer. Can we get a do-over?

Good pt qannie47 re mentioning w ins. We have avoided so far. I thought about trying to get reimbursed for seeing two PANDAS docs we pd oop for but am not going to for that very reason. I checked my ins comapnys policy on IVIG but don't see that they cover encephalitis...but it's not listed as something they don't cover either??

Can anyone share their experiences with appealing insurance companies' policies re IVIG? We have CIGNA, but they say specifically in the policy they will not cover for PANDAS. dr. K says we must consider IVIG as the next therapeutic step. My head is spinning. As if it wasn't already, haha. Or does anyone have other ideas they can share? What about discount programs pharma companies offer for persons who self-pay? Does it matter who orders the treatment, in terms of cost? In other words, would we save money if local doc ordered vs dr k, or are there differences between pandas docs themselves? (He is also pt of dr t).

LLM...what is the prednisone burst all about? All I know is that for pandas kids it will reduce or eliminate symptoms, correct? If there are no changs or minor reduction in symptoms, does that mean no pandas? And do you know why 14 days post burst? Does it take that long for changes to be seen? And do they return eventually or is it enough to put a child into remission?

We had our appt w dr k. He said pandas but wants to confirm it with 14 days augmentin (good thing we are already on day 11) then 5 days of prednisone...and observing him for 14 days after that. He said ivig is a cure (as is plasmapheresis) for 80%. The he said he'd place him on abx for 1-2 years. Deedee...how has your daughter done with two rounds and l-t abx? Do you know how others have fared with that protocol? I asked about my sons trigger and he said because it is an autoimmune disease, it is likely more than one infectious agent causing these episodes. He wasnt concerned with treating an underlying infection. But this seems to be in contrast w some of your experiences here. Or am I misunderstanding? He said ivig works by allowing his bone marrow to stop producing antibodies temporarily, then as its effects wear off, his system "reboots" and essentially starts over...without producing the haywire antibodies. I asked for literature, but he said there's not much aside from studies done in the 90s and 2000. Of course there's the current nimh study. I'm trying to get a copy of the grant. I'm having a very difficult time w his anger. Everything sets him off and it's so intense. He lashes out at anyone, and I'm scared he might hurt my 9 mo old son. Our disciplining efforts don't seem to work, distraction doesn't work. He is just so angry/frustrated/irritable most of the day. Is this common? Any chance something in addition to pandas is going on...like parasitic infection? Certain values from his bloodwork are indicative of that, but they also show allergic rxn too, which he has. He is always asking for food, always. he is average for his weight though. hes always itching his rear, but i dont know if its just an ocd thing. Have any of you had experience with testing for and treating parasites?

This is so helpful everyone. LLMD and nicklemama...I'm interested in figuring out if there are methylation issues. Was it your LLMD that ordered the tests for determining this? Is it blood or saliva? And then who specifically guided the treatment? I'm in the Midwest.,I've just put a request in for a LLMD on the ilads website. Qannie 47... Can you share more about your experience w ivig? What did dr k say to expect? Can you also send a link to the report you refer to? Thx We are on our way right now to dr k. Emotionally there is so much to write about. I've never experienced these emotions so intensely for such a prolonged period before. Guilt, sadness, confusion. Anger. But I can't go there right now...

Thank you everyone for posting so quickly. I should mention that this isn't likely his first episode. Like you, LLM, there have been periods in his life where something just wasn't right. The first was at 20 mos. he regressed. Stopped talking, had a flat affect, no interest in toys or us, lined things up, etc. I took him to three doctors and the ER as it seemed I was losing him. He had pharyngitis and diarrhea, kept saying "head broke." As you can imagine, it was one of the most terrifying things I've faced. He somehow recovered two weeks later. He kept having times where his behavior just wasn't right. We had him evaluated for ASD but dr said he's not on the spectrum. He seemed to have troublesome periods, then would improve. We began to think this was just his normal development. This episode is by far the worst and most debilitating. So technically, nicklemama, we've likely been dealing with this for years too, right? Or is the first episode considered to be when it becomes debilitating? About labs...dr t ordered 24 blood tests, including mycoplasma (both IgM and IgG neg), lyme neg ( I see one was present out of 10 IgG-- the IgGp 41Ab), bartonella, babesia, and erlichia ( all neg). Vit d was low, antidnase b strep high at 196, and several strains of pneumococcal were present and high. I'm not really sure I understand how he concluded that pneumococcus was the trigger. I'm still wondering...what if the trigger for him is viral? How do we proceed then? LLM, can you tell me more about your behavioral optometrist? And how was it determined your child has methylation issues? And a general question...when a child is receiving treatment of any kind, how does one know that it was effective or whether the flare is just fading? Theoretically they do resolve eventually without intervention correct? This is what our ped said when I asked about the possibility of pandas. And this was why she said she wouldn't treat it.

Hi all my 6 year old son has been diagnosed, i think...with pandas/pans. an explosion of symptoms began early summer. we went on a family vacation and everything was a level 10 out of 10. He was licking everything, biting objects, looking at fingers lined up, asking questions multiple times, concerned about his eating area, defiant, hyperactive, very angry and moody, and extremely anxious about being alone. We called his ped multiple times while we were gone, and the nurse just tried to say you're on vacation, maybe he's just adjusting. we knew something was very wrong. we saw her again when we returned, and she noted how different he appeared during the visit--on the floor, in constant motion, talking non-stop, and repeating things. she suggested counseling, as we have had many serious family stressors in the last year. i started looking online at information on tourettes and came across the pandas/pans stuff. he fit nearly every criteria. i also noticed dilated pupils were a symptom, which I remember seeing for months but didn't think much of it. same with urinary incontinence. he had about 6 daytime and nighttime episodes in 5 weeks time. he was out of school, so didn't notice much with writing. just that when I tried to sit down with him to do some schoolwork they sent home with kids to do for the summer, he refused and/or had a tantrum about not wanting to do the exercises. i scheduled an appt with dr k, who would be unavailable for one month. every day was/has been a nightmare and waiting to do nothing felt awful. i scheduled a ph consult with dr t who said he is "textbook" pandas. his bloodwork came back, and even though antidnase b titers were considered high, he thought pneumococcus was the triggering agent. he is on augmentin and biaxin right now. we saw a dr locally who refused to diagnose him with pandas (he won't acknowledge pans) since his strep titers were normal with a second round of bloodwork. we see dr k tomorrow. as i think back to his last illness that he had, it was in march, over spring break. he was sick with fever for 6 days. other symptoms were a cough so bad it often made him gag/vomit, but it was nonproductive. dr thought it was viral. 2 weeks later I noticed differences in my son, and that's when i began emailing his teacher to ask if she'd noticed differences. i mainly noticed tics, like blinking and facial grimacing, and hyperactivity. she said she, too, noticed but didn't think it was too bothersome. when i picked him up from school, he was so angry, nearly every day, that i thought something had to be happening in school. again, the teacher confirmed nothing was happening, he seemed ok, although she could no longer put him with certain students to do work like she used to, and that he had troubles following directions, standing in line, and staying on the carpet during reading. this is from a teacher who, up to this point, said she wished she had 18 children like him in her class! my son even said he felt like something was "wrong" with him. then I recalled a class field trip at the end of May I went on with him, and came home and told my husband that something was not right. he was very obsessed over the school bus and couldn't participate in learning activities. i began looking up adhd things. but as i said before, it's as if he could qualify for 5-6 dsm-iv diagnoses in one month's time! i've read some things here and feel very scared. it seems like something that never ends, or even gets better. i'm sure we'll be up against a decision on whether to try ivig or not. i've made an appt with a homeopath to begin treating, but i'm so scared to abandon traditional medical treatments. did i mention i have a healthcare background and am a scientist?? i really want to get at the core issue of the problem. i know everyone on here wants that too for their children. i'm just unsure how to go about it. i've never seen him so debilitated and i'm worried the next episode will keep him out of school. in fact i'm not sure how he'll fare with this upcoming school year, as he is now. he's on day 8 of abx, dr t prescribed 10 days. i'm wondering about recovery, what that looks like. his mood seemed significantly better to me two days ago. yesterday was a "good" day too. he didn't get angry as much or as intensely. but today i had a doctor's appointment and he was haywire--screaming "uuuhhh!" because i asked him to sit down, squeezing me out of anger (while I'm holding my 9-mo old), unable to be still, talking nonstop to the provider who was trying to talk to me, grabbing exam gloves by the handful out of the box, licking objects, etc. I don't understand....I thought we were on the mend. Can anyone share what to expect with recovery? are there good days then bad days, or is it different? same with recovery after ivig? how many rounds do kids typically need? I've read with younger kids recovery might be quicker/easier...is this correct? and what if the offending trigger is viral, not bacterial? what is the course of action then? do kids get better? and from what i understand, bloodwork is neither confirmatory nor disproving, so why the emphasis on it? does it really offer much useful information? maybe i'm misunderstanding this whole beast... i have many questions but will post later. i'm glad to have found a place to put ideas and questions out there.