JAG10

Ange, Check out an older thread from Buster: http://www.latitudes.org/forums/index.php?showtopic=7468&st=0&p=60702&hl=+%20+eosinophils&fromsearch=1entry60702 He was researching eosinophils absolute. Perhaps you could PM him to determine what he discovered? How is your dd doing now? Jill

Score one for JAG10 I'm sure you're aware, but dog ticks can also spread TBI's, specifically some of the co-infections. GRRRR Don't let the kids throw their hats/visors or batting helmets on the grass either. We lay out a tarp to try to minimize the lice/tick/gross PIAs from hitch-hiking home with anyone.

Is there anything other than strep A that will result in a rise of ASO and anti-DNAse B titers? I seem to recall more speculation regarding anti-DNAse B titers than ASO, but I can't remember why.....

I was keeping score for my dd's softball team and flicked one off the score book. Ewwwww!!! Didn't look like a deer tick though, too big. Gross!

Stephanie, I followed your above posted link, read your letter addressed to PANDAS Moms and wanted to give you a chance to explain your position. It reads harshly toward a community of parents who are trying to make sound decisions on behalf of their children. If you take every symptom and every diagnosis and every treatment of every individual child/parent partnership and roll them all into one....what you get is a caricature of this community that makes us sound like loons and undermines the legitimacy of the illness(es) we fight to have recognized by those outside our community. As people have posted above, many friends chimed in thrilled for your kids' recent success. Honestly, KUDOS! But as PhillyPA so brilliantly put it weeks ago, we cannot all "hop on one foot" every time one of us experiences some success. May I be so bold as to say most of us have seen the neuro-typical/normal child inside our kids at one point or another and that is what compels us to continue to pursue that state for our kids consistently. We all pursue longevity of neuro-typical health and happiness for whatever remains of each of their childhoods. Collectively, we aren't sure how many different problems we are dealing with here; posed hypotheses will neither be completely wrong nor completely right, that is a certainty!. You are a committed warrior in this PANDAS/PITAND/PANS battle. We MUST all share our stories with humility. JAG10

GUD, One thing I wanted to add after reading your comments on the other thread about insurance....it is true, it depends on how the physician is coding the dx. We have BCBS Keystone which is a direct HMO. My girl was not approved for a single 1 or 2 day infusion but rather "12 treatments within a 6 month time frame." I'm not exactly sure, but I'm guessing that each day of her 2 day treatments counts as one of those 12 treatments, wouldn't you think? I've also seen other folks post that they were approved for a period of time versus a specific treatment, if that makes sense. One good thing in this crazy journey of ours, it surely seems like folks are having an easier time getting approval; either the docs are getting better at making their cases or the insurance companies are feeling pressure from another source. Good luck!!!!

From Pg 63-64; I have one girl + band 41, one negative (both seen during that 11/09-4/2010 window.) Both whose symptom elevation correlate to their antibody profile; particularly the anti-DNAse B. I realize it is reported the antineuronals causing chaos, nonetheless that correlation is there for mine just the same. It appears of the pool of 181 patients, 47% did NOT have elevated strep exo titers, which is higher than the 1/3 rate reported in the past. But if I read the article correctly, the improvement rate from abx was only reported for those 53% who did have elevated titers and "improvement" was recorded for 88% of that group. I put "improvement" in quotes because X% improved of significantly messed up is still....well, really messed up when it's your kid.

I was just talking about Ferritin with another mom tonight. Surprise, surprise...the symptom list is very similar to our favorites: lyme and pandas. It is for iron. I heard a tv doc reporting tonight that people on a gluten free diet tend to run low iron which can result in many behavioral/neuropsych disturbances; ADHD, memory, concentration.....the list goes on and on. Do you have a copy of the lab results or just the script ordering the labs? You can ask him to email you the lab results as well and he will do this.

Is it related to failing titers to those 14 serotypes of strep pneumonae? Do you know what test results was he referring to? Lots of our kids have failed responses on that test; many failed 10/14, 12/14, 13/14 some even every single one.

Hi ziva, My dd11 had a known tick bite in 2006. There was no rash and the tick was not engorged. The pediatrician gave the standard AAP advice, "no rash, no treatment." I have a BIL with Lyme disease, so I called him. As someone who suffers from Lyme disease, he was frustrated by my ped's "do nothing" attitude. What harm would a preventative course of abx do? Anyway, he suggested I send the tick itself to Igenex for testing, which I did and it came back negative. If I pulled a tick off of my kids today, I would do two things; 1) I would save the tick and have it tested through Igenex (you don't need a doctor's script and it isn't that expensive, somewhere around $75) and 2) I would investigate what a preventative course of abx looks like in a fresh bite, it is probably different and much less complicated than what is prescribed for those treating chronic lyme. I'm not positive about this, but I believe any Lyme testing wouldn't reveal much about a fresh bite? I think a certain period of time has to pass by before the results are indicative one way or the other. And even after (whatever that certain period of time is), there doesn't appear to be any conclusive way to rule out Lyme that everyone can agree upon, thus all the previously posted robust debate. You are then left with "more likely" scenarios and "less likely" scenarios that ultimately leave the final decision to you. Do you remember when you were pregnant and the OB asked you "When your baby is delivered, do you want to save the fluid from the cord?", you had to make a decision based on your family's hx and weigh whether you could afford the cost of that service versus the risks of not doing so. Thorough Lyme testing and evaluation by an llmd will probably cost you the same amount of $$$ as saving the fluid from the cord. If your health care dollars are limited, you need to spend them wisely. Unfortunately, there is nothing anyone on the forum can tell you that is going to circumvent the fact that you need to do your own cost/benefit analysis of your time and your financial resources. FYI- Even though I had that report from 2006 that stated the tick was negative, I had my dd tested through Igenex Nov. 2010. For the Lyme testing and co-infections, it was over $900. Her testing was CDC and Igenex negative; that in combination with my assessment of her symptom set and clinical hx was enough to satisfy me that we need not invest anymore time or money in pursuing Lyme or Lyme specialists. Some on here will disagree with that decision. We spent the $900 because 1) Dr. B asks for it if you can upon initial consult, 2) she had a known tick bite and 3) all of what I had read on this forum. Some will say any IND band or Band 41 need to be investigated by a LLMD, so unless all testing comes back completely neg. and clean as a whistle (doubtful), you will find those on this forum advising you to continue to invest your time and money pursuing Lyme. There are no conclusive Lyme rule outs. As far as symptoms go, I think the best you will be able to do is "more likely" and "less likely." Best wishes that everyone finds their child's path to wellness.

I would concur with pandas16; my dd11's symptoms are remitting in that exact order- tics, then OCD, then ADHD/executive functioning skills. 15 months into treatment, we are still working on resolving those organizational/task completion, time management and working memory areas. The tics and OCD remitted fairly quickly with her first HD ivig last May. My girl was sick a very long time before we knew what this was, but the trend continues to improve. Something else to remind yourself of with this EF skill set is that for our middle school kiddos, the expectations in these areas specifically increase at an incredibly rapid rate which may dwarf some of the progress that is occurring. I just have to remind myself what a hot mess she was this time last year and acknowledge how much she has improved. We had a big accomplishment this week; she had a math test on calculating area and volume of different shapes/containers. Although she was one of the last ones to finish, she did not need extended time in the resource center, remembered all of her units of measurement and she scored 44/45!!! I think she was just as proud of not needing extended time as she was of her score. We are continuing with HD ivig as her bloodwork indicates immune system dysfunction. We have 2 more scheduled and then we will reassess her status.

Who switched to Biaxin...your husband or son? Congrats on the posistive results thus far.

Tpotter, You are correct. I did the same thing! I thought ACN changed from an annual campaign drive to a situation where the "donation" sign will always be up. I bet you many folks are confused because they just gave like 3 months ago.

Wow, I thought strep resistant to anything in the penicillin family was unheard of???? This is big news, no?

Great points, T Mom! I was just wondering yesterday....if the OCD conference is on the west coast, does that mean there will be no NIMH pow-wow afterward??? That would be a shame. Your Band Leader will need quite a skill set. The medical background is not enough. Strong interpersonal skills will be essential as doctors and even organized groups of parents have become wed to ideas and protocol, some more open to evolve than others. I also think a standardized measurement of behaviors utilized by treating doctors would be valuable, especially for those who are dealing with this beyond initial onset. My two cents would be that an OCD scale is too narrow. I switched doctors for my dd11 and she had already had some treatment, but was not completely well, that stubborn 75% mark. When we met with Dr. B, it was very valuable to be able to share the BASC results obtained before any treatment to illustrate not only what her parents thought, but also her teachers, especially for those behaviors that aren't going to stand up and wave during a doctors visit. It just seems there needs to be a broader measurement of the psychological markers. Below are the areas measured by the BASC-2: Clinical Scales:Areas that focus on disruptive behaviors or internal problems •HyperactivityThe tendency to be overly active, rush through work or activities, and act without thinking •Anxiety The tendency to be nervous, fearful, or worried about real or imagined problems •Attention Problems The tendency to be easily distracted and unable to concentrate for an extended period of time •Withdrawal The tendency to evade others to avoid social contact •Aggression The tendency to act in a physically or verbally hostile manner that is threatening to others •Depression Excessive feelings of unhappiness, sadness, or stress •Learning Problems (Ages 6–21 only) The presence of academic difficulties, particularly in understanding or completing schoolwork •Conduct Problems (Ages 6–21 only) The tendency to engage in rule-breaking behavior •Somatization The tendency to be overly sensitive or to complain about relatively minor physical problems or discomfort •Atypicality The tendency to behave in ways that are immature or considered odd Adaptive Scales:Areas that focus on positive psychological features and skills •Adaptability The ability to adapt readily to changes in the environment •Study Skills (Ages 6–21 only) The skills conducive to strong academic performance, including organizational skills and good study habits •Social Skills The skills necessary for interacting successfully with peers and adults •Functional Communication The ability to communicate basic thoughts, knowledge, ideas, and feelings in a way others can understand •Leadership (Ages 6–21 only) The skills associated with accomplishing academic, social, or community goals

Hi Friends, I have my dd7 in mind with this question. Regarding the concept of a "shifting of the baseline behavior", this is used to describe the baseline "normal" child who has an illness, has a notable increase in behaviors, the "illness" goes away on its own and then the child's behaviors subside significantly, but the child never completely goes back to the "normal" child they were; maybe they remain somewhat anxious, or are a little clingy, or just don't seem to be as attentive as they did before they got sick. I used "illness" because sometimes it can be treated and sometimes it can't. I'm thinking of my younger girl who has had mild symptoms in the past that cleared up with abx. Last strep infection was August 2010; that same month she contracted molluscum and in September, she had her tonsils removed. She has been on abx since. Her bloodwork comes back clean as a whistle; she's even negative for band 41. But she still has some mild symptoms that were not there prior to last August (holds her urine too long, not as attentive as she was, a little anxious.) So, if the baseline shifts, what exactly does that mean is going on medically??? I mean, I understand getting better and getting worse, but this status of mildly symptomatic confuses me. The only thing I can think of is this; she still has the molluscum. Even though she was treated by the dermatologist, she has some blisters between her cute little butt cheeks and they won't treat them there....as long as there are a few there, they just seem to continue to spread a little and linger around. So...that means the virus is still active, yes? Well, from what I've read, this can go on A LONG TIME!!!! I read up to 4 years!!!! This is the only thing I can think of that is challenging her immune system. These mild symptoms aren't really getting in her way too much. She has many friends and does well in school. She just looks like this bright kid who also happens to be a ding-a-ling. But last summer, she presented as sharper, on the ball....you couldn't get anything by her. So, I don't like this "shift in baseline" even if she is performing academically. Do you think it's the molluscum? Any suggestions??? Jill

I wonder if there is an entire course in the pediatric tracks of medical schools that indoctrinates them to believe if they prescribe abx without verifiable bacterial infection or for more than 10 days, they will be responsible for unleashing the plague and the extinction of mankind. Between the vaccine schedule and the refusal to prescribe abx, I really think 20 years from now we will look back and rightfully blame American pediatricians for what has happened to our children. Trudy- My condolences about your father.

Well, I'll tell ya, Wilma. My daughter is nonverbal and has been "diagnosed" with autism since she was 3 years old. Until she was 10 (when we found my current pediatrician) I really couldn't get a doctor to check anything- everything was attributed to autism...illness just didn't exist in autism, I guess. She did, in spite of being sick with URIs almost constantly (was told its probably allergies because autistic kids get those a lot!), develop skills in reading and math, and even had quite a few (a hundred or so) verbal words that she used appropriately. Around 8yo, that was all lost and she degenerated into a mess of misery and self injury. But we were still seeing things through an autism filter and her OCD was called stims, stereotypies, and perseveration, etc. Around age 10, we had an insurance change and had to switch docs and stumbled upon her current pediatrician. At the same time, I was beginning to hear about PANDAS-the research was very new (was it really only 5 years ago?) and asked the new pediatrician to test for strep, even though she had no typical symptoms. She came up positive and we went through a couple of years of courses of abx whenever she tested positive for strep- which was whenever she was not on abx (well, there were a few negatives in there). She improved on abx every time and then when her behavior deteriorated, I'd bring her back in and she'd test positive and then we'd have another go round of abx. Getting the help of specialists locally was impossible. Her tonsils came out when she was 12. We thought that'd take care of the strep, so did not keep up the abx, and nobody wanted to swab a throat that was healing from tonsillectomy anyway. We had one of the worse flares ever after that. Bad, bad photophobia. Things that looked like seizures, but did not show up as seizure activity during the 8 day video eeg. Constant psychotic rages. After she healed the strep was back and she had bad vag. yeast as well. About eating and sleeping...was an issue her whole life- Until age 6 we kept her on bottles of strawberry protein diet shakes just so she'd get enough nutrition to stay alive- she would not eat solids and though she could drink from a cup, she would only drink water from a cup. Finally got rid of all the bottles when she was 6 and wouldn't drink them anymore because she was sick w/ a sore throat and it hurt to swallow. (that's what I think anyway- doctors did not check her throat because autistic kids have eating issues and the endless drooling is supposedly typical of autism as well). So we found a few things that she would eat- not great nutrition, but the best we could do. And between birth and age 10 when she started getting abx, I think she slept through the night maybe 10 times or so. I honestly do not remember much because I was so fricken sleep deprived myself! Anyway, with abx the sleep got better- somewhere in there we gave risperdal and other psych meds several tries. The risperdal did help her sleep...until it didn't anymore- but hey, it was a nice month! Still, when she has a PANDAS flare, sleep becomes an issue again and so does bedwetting. OCD gets in the way of sleep- she'll be just about drifting off then jumps up in a frenzy to perform whatever thing is OCD at that time, and has a terrible time getting it right. She wakes in the middle of the night to do the OCD, as well- could be she dreams OCD! The reason I said I'm not sure about PANDAS is because just recently she's had some extra stuff going on- looked like sydenham's chorea/lupus/hyperthyroid/diabetes insipidus/arthritis all mixed together. Then she tested positive on a rapid strep test while on 2 ABXs. So a course of clindamycin was administered and 2 days later she had a rapid positive again- but a swab was sent in for culturing and sensitivity testing. The culture came back negative for strep. So the "more than PANDAS" symptoms, together with the fact that we no longer know if any of her rapid strep positives were actually strep...I'm feeling sort of lost. Though her "other symptoms" are slowly improving, her PANDAS stuff (or what we thought was?) is definitely getting worse. In fact I had to take a break in the midst of writing this to deal with a twenty minute bout of SIBs and aggression. I can pretty much gauge how poorly she's doing by how beat up I am. I'm sorry this is so long, (and you're probably sorry you asked) but once i started it just all came pouring out. I hate this crap! Peggy, I read your post yesterday and wanted to respond, but couldn't think of how. I'm trying to think of a word that honors your love and devotion to your daughter and the one that keeps coming to mind is holy. Your strength is so admirable; you are an inspiration to all of us here. You frequently enter my thoughts when I am praying, but in those moments of prayer, it is you that is giving to me spiritually. You are an amazing, amazing woman and mother. Let it pour out. I hate this crap too. Jill

PhillyPA, I would agree. A comfortable stare is completely normal. But my dd was doing them with such frequency and with no control to break them, it became interfering. I would say many of her OCD/tic things stemmed from "normal" behaviors. Who doesn't enjoy a good stretch? My dd was stretching excessively, especially when asked to sit still. I sat next to her in an assembly once and counted 11 stretches in 3 minutes. I mentioned the coughing tic earlier today where it started as a perfectly normal action that turned into an OCD/tic thing. The bar was the frequency and when these behaviors became interfering with daily functioning. I may not want to break out of a comfortable stare if I'm tired or deep in thought but I can in a heartbeat if need be. She could not even though it was resulting in the negative consequences of being criticized or nagged by adults and peers. I suppose that is the difference and why it does not look like seizures over time to the skilled observer.

Oh, pandas16! Is your despair because you don't have a plan of what to try next? That always helps me hang on when things get rough. I also feel like, as a community, early spring and early fall are the danger zones for us all. I work in an Elem school. Sitting in the faculty lounge this week, I listened as one teacher talked about having strep last week, another has scarlet fever, but she's been on abx a few days, another has "some kind of pneumonia" but she's on an abx cocktail too. And these are the adults in the building, for goodness sake! Ahhh!!!! I'm so glad you reached out. This too shall pass. It will. Jill

Yes, Dedee. My dd could talk to us sometimes while staring, but couldn't break the "comfortable stare" I agree, I think it is an OCD thing and it went away with IVIG which makes me more convinced it is a pandas symptom. Jill

Thanks! Karen, was your child's WHAM in March 2007 too?

I wonder if 20 years from now, we'll look back to realize the persistent reluctance and strict application of narrow criteria of our pediatricians to prescribe abx resulted in a generation of cognitive disturbance.

Grrrr Sorry, wish I could say I was shocked, but I don't like to lie.

I would agree. My girls have done better on Zithro also. This disease is so sneaky!!! Is it any wonder we (parents) get treated like we are as nutty as our children appear? So many of our children do not present with symptoms that are "known" to be associated with strep. Whoever heard of a lone cough associated with strep? Yet winter 2007 (exact same geographical area), my dd had the exact same lone cough symptom before her WHAM! Perhaps it was some nasty strep/strep pneumonae/myco-p trifecta. I also wonder this.... my dd has had the simple cough turn into the behavioral "cough tic", just to thoroughly confuse matters. So who knows where that fits in the picture, especially trying to put the puzzle together in hindsight