JAG10

Thanks Diana! This is interesting. Do you know if there will be sibling parameters? I was thinking families (and their medical teams) that are already aware of PANDAS, and Swedo ect., would be more likely to catch an initial onset? Not that we would wish this on anymore of our children!

I saw my dd10 do this stretching compulsion she hasn't done in two years and waking up super early, turning all the lights on in the house nonsense we haven't seen in 2-2 1/2 years. It lasted two days. She's also experiencing some math losses we haven't seen in a long while either. There's more, but you get the idea. This symptoms surfaced and vanished (after 5 days pred., 40 mg.,) 2 wks later. The brain is facinating isn't it?

Kudos!!! Swedo's got a sassy side! I love it!!!!

WornOutMom, My understanding based on the posts here and there is that a notable response is what you were looking for, not so much were all symptoms alleviated and/or how long did it last. The response, the observed improvement confirms the autoimmune element that does not occur with typical neuropsychiatric illness or disorder. So, keep in mind it is not a trial of how much or how long, but did he or didn't he positively respond. From what you wrote, your answer is a clear YES. Best of luck with your appeal or in getting where you need to go by whatever means necessary!

Hi EAMom, Buster has been very helpful w/questions, but now I have one for you... This is a copy of a post you wrote about a year ago... 4/2009: Hi ChrisW, Buster and I have been wondering if doing a steroid burst shortly before IVIG actually makes the IVIG more effective so it is interesting that you did the burst just before IVIG. In other words, do the kids that get a steroid burst in the 1-3 weeks preceding IVIG have a better outcome from the IVIG vs. kids that don't have the burst (or have the burst many months b-4 IVIG). Sooooo, my question is...what did you ever determine? Is there a correlation between success of IVIG and a recent (within a couple weeks) prednisone burst? Also, I see benedryl mentioned often w/ivig; what is it for?

I've read several folks make reference to or mention an IVIG clinical study that is either in progress or finished and in the analysis phase. Does anyone have specific info to share about this? Which docs are involved? Parameters? When it is due out?

Melanie, I don't understand. How are these lyme doctors she speaks of making a lot of money by promoting a higher dose? Wouldn't they only make more money by promoting more frequent treatments rather than promoting a higher dose less often?

I wake up and manage to get me and my two girls dressed, fed and out the door. I drop them off at school, and 10 minutes later I'm at my school where I work with children with diabilities all day. Then, I get back in my car, drive 10 min. and pick them up from extended care. I listen to them argue and complain about the daily grind the whole drive home. Then, once we arrive home, I spend the next couple of hours teaching dd10 all the material she missed all day at school bcs she is so internally preoccupied and distracted by her own running thoughts. Make dinner, clean up, showers, wash hair, brush hair, dry hair. Clean-up as much as I can manage and leave the rest until... Work on my lessons for the next day. Crash. No magic here. Just one day at a time, one foot in front of the other. One of the hardest things for me is her lack of self-help skills. Having to tell her or walk her through step by step very mundane activities of daily living or they don't get done bcs she gets distracted or stuck has aged me so much. The behavioral regression in a tween that can act like a 5 y.o. but needs less sleep and can get into more trouble than an actual 5 y.o. is exhausting. Work is my break. It's where I'm competent and successful and patient. Even working with children with disabilities can be easier than being home with my own. This is all I know. For me, I feel I am a better mother bcs I have a career that fulfills me and I enjoy. I have a terrific husband who helps get everyone dressed and fed and out the door in the morning and pitches in with homework, dinner, whatever needs to be done every evening after his workday. It's worked for us bcs it has to.

phosphorylation of tryptophan hydroxylase? I understood the ball of rubberbands.... So is the PANDAS for Dummies version....researchers are leaning toward disordered production rather than hypo or hyper dysfunction or perhaps both with one leading to the other?

Buster, I think I'm getting confused at an elementary level. CamKinase II- is this a measurement of the anti-neuronal antibodies or the resulting activation w/BG tissue...or receptor? So, in PANDAS, is it that there is a higher amount generated by the B-cells or there aren't any more produced, but there is something wrong with the protein that causes a higher activation? Let me try again... Is the problem an activation issue bcs there are too many anti-neuronal antibodies being generated or the ones produced by those w/PANDAS aren't more numerous, there's just something wrong with their mediating protein that results in overactivation and swelling??? I think I'm having my own swelling...maybe I should give it up....

Thanks, Buster! Tell me right track or wrong... ASO and Anti-DNase B measure antibodies to strep and multiple measurements tell us whether the infection coming or going. But it's (different) anti-neuronal antibodies that are sneaking through the BBB causing the chaos. IgG is also an antibody measurement of a more generic sort, anti-neuronal just being one of many. Here's where I'll try and get creative and mess the whole thing up..... If a PANDAS child has low/lower IgG levels, does that mean that of the antibodies they are making, anti-neuronal antibodies are a higher concentration of them; like a cup in the bucket instead of just a drop??? What impact do you think PANDAS has on the child's IgG levels over time?

What is the relationship btn IgG, IgA and immunity response? If a PANDAS child appears to have hyperimmunity, high titers, asymptomatic of strep, rarely sick except occ. viruses/colds.... is it strange that their IgG and IgA would be on the low side? Not deficient low, but lowest end of the range. Why wouldn't it be high? Or do low IgG and IgA just signify dysfunction? Or is it low bcs the faucet never shuts off?? I'm sure my questions reveal my degree of ignorance

Can IGG be a little low (798 w/range 821-1835) and IGA be the lower limit (64 w/range 64-246) and my child still be one that falls in the hyperimmunity category? She's never sick besides cold viruses and asymptomatic of strep. I would say she's on the fair/pale side, she has that livedo reticulitis skin pattern on her legs mostly, but she seems pretty healthy (besides all the neuropsych stuff.) She has excellent physical stamina; she ran a 5K two weekends ago and is on a running team. She doesn't really get tired like the other girls, if she's engaged she can just go and go; it's more...she'll get distracted or bored and stop running, but she isn't winded. So, she seems like she would be a hyperimmune kid, but does that jive with her immunoglobulin numbers? Thanks!

Warning-Gentlemen may want to skip this post. I hope this isn't too personal. Someone posted information about a grown daughter with PANDAS feeling relief from symptoms post pregnancy. Did you notice any changes with your symptoms that revolved around your pregnancy? The reason i ask is this... I don't think i have pandas, but I definitely have the ocd tendencies and had moodiness as a younger woman until my first pregnancy (my pandas dd10). Upon her birth, I had low prolactin, so I couldn't nurse and no menstration for 9 months after until I started taking BCPs to bring it on. I needed fertility help to ovulate to conceive my dd6 and did not start menstrating on my own until she was 4 y.o. So, for those 7 years, the moodiness was completely gone. Then, the moodiness returned similar to PMS. But before I had my first child, I was a handful mood-wise. Based on my experience, I thought the comment about the adult pandas daughter finding symptom relief with prenancy was interesting. Does any of this mean anything to your experience? Do you have any history of PCOS? I guess my point is that perhaps you need to look backwards in time at periods of stability for you and see if the pandas docs can derive any meaningful connections. Hormone levels must play some role in this equation.

Lynn, Can you elaborate on the "20 second catatonic state" Lauren exhibited? Had she done this before? My dd10 has done these zoned-out, trance-like, starring spells since she was 5. She's had 2 negative EEGs to r/o seizures and a couple docs have said it was a compulsion. thanks-jill

Santi- the general trend based on past posts indicates that younger children tend to respond quicker to the prednisone burst and this can vary from during the burst to two weeks later. Older children who have most likely been sicker longer tend to take longer to show the positive response from prednisone, like 3 wks after. Perhaps this is similar to the IVIG response where younger children tend to improve quicker and children over 10 can take 6 weeks.

Just when I think there aren't any tears left to shed..... God, please bless and have mercy on Katie and her loving mom.

My dd6 was drawn on a Thurs and results were in the following Mon.

In reading Buster's invasion/colonization post, I think it means a carrier swabs positive (on the surface) but is not actually infected (ASO wnl). So, as long as you didn't swab positive, you are not a carrier. But a normal ASO by itself does not indicate you are or are not a carrier. You need the positive swab w/o the rise in ASO. .......i think Buster, do carriers consistently swab positive over and over?

I remember Dr. T mentioning a few months ago a group at Yale was conducting a PANDAS- like study with ADHD characteristics, rather than OCD +/- tics. Has anyone heard of this? Maybe I'll ask him to elaborate or post a link on his site.

OOOOhhh! Pediatric OT, yeah!!!! I'm not familiar w/Flagyl. Is she still taking it? Or have you pursued other treatments since your discovery? I can relate to your curiosity about other children. I'm a school-based SLP and I have a handful that I have strong suspicions about with regards to their language skills. I see in my own dd10 marked swings in her word retrieval and ability to express herself fluently and with ease (plus the writing & alot of other stuff). I was discussing her with my special education director; she had never heard of PANDAS and we wondered together how many of our students w/special needs could be.....

YES!!! That "drift to the right" away from the left margin, more and more with each line, is really noticible on spelling tests. This is actually a sign the school-based OTs will look for to differentiate "cognitive" dysfunction from pure fine motor issues. My dd10 (at the time 7) drew a picture of a train w/smoke stack. At the top, she wrote a sentence totally backwards, right to left word order with each word spelled backward and it wrapped around to the other side of the page. When I asked her why, she looked at my like it was so obvious and said bcs she couldn't cross over the smoke stack. I showed it to the OT at my school and he said he had never seen anything like that before.

My dd10 is one of those asymptomatic strep kids and we weren't pointed to pandas until 6 months ago. So, it's a little difficult to remember back over all these years and chronical the good times and the bad, which over time have manifested into bad times and TERRIBLE. I have two clues; #1 from kindergarten where every month the children were asked to draw a self portrait on a card. At Back to School Night, the teacher explained how we would see the children's pictures improve with each passing month, adding more and more details and we would receive it as a Mother's Day gift in May. Well, hers did not follow the typical pattern and it reminds me so much of those before/after IVIG drawings on Dr. K's site. Hers looked almost exactly the same only over the course of 9 months, I can look back and tell...ah sept and oct- great, lots of detail, nov, dec, jan-barely stick figures, feb, mar-wow! really good again, april, may, back to messy, asymmetrical figures with no hands or feet or nose. #2- Her homework copybooks from 1st, 2nd, 3rd grade. Homework is written same time everyday in the copybooks. I can flip through the pages day after day and chronical how she was doing behaviorally & cognitively based on the dramatic changes in handwriting. And not only would her handwriting go from pretty good to 'what the heck is that!', but it would also be littered with reversals and sometimes whole words written backwards! In 3rd gr, she would even reverse print letters in cursive! The fine motor- using utensils, handwriting, drawing, has been one of the most objective measuring sticks. When fine motor is clear, concise and put together, so is she.

Oh, worried mommy, I can empathize with how you feel. Sometimes, so good at being compassionate and protective and other times feeling like I could give Mommy Dearest a run for her money! Advice.... for me, the difference in my reactions is me and what's in my head at the time. Anticipating a change in behavior due to a new med or whatever, will increase my sensitivity to her behaviors. Being around her peers is also a "trigger" for me. Both my girls will be in their school's Spring Show this weekend (the whole school is) and as my d10 is not doing so great right now, my stomach will turn waiting to see if she does anything abnormal; nobody else will notice. She seems better around kids much younger than herself, you could try that. I try to do a lot of self-talk, count backwards from 10 or say a Hail Mary before I yell (which I still do plenty). This is kind of goofy, but I burned a "pick me up" cd that I play loudly when I feel like I can't take anymore. Sometimes, I just have a glass of wine.... probably not a good idea this early;) Be strong. You have to take care of you in order to be able to fight for her. jill

Buster- Can you try another analogy with current, this is really hard to understand. Are you saying that if we were looking at the electrical system for a house, if we plug-in the hair dryer (GABHS), that puts a lot of stress on the system. Depending on what else is on that circuit, sometimes so much stress that the breaker (CAM Kinase II) trips. In a pandas house, the wiring to the breaker (auto-antibody 24.3.1) isn't hooked up right, so the breaker isn't tripping and the house is catching on fire. I'm in WAY over my head! I'm just trying to dumb it down so I can understand it. help?