kimballot

WAIT.. it gets better - now they have mass hysteria! http://www.buffalonews.com/city/article707323.ece

P Mom started another link on this and she had cited the local town paper. I found the article on that paper and they quote a local neurologist who is the head of neurology at the University of Rochester saying that they used to think strep could cause tics, but that has since been "disproven". This is the same institution from which Dr. Kurlan collaborated when working on his infamous longitudinal study. Apparently he did not send a copy of his CANS article back to his colleagues in Rochester, or they would know that strep and other infections CANS now cause tics!! I wonder if these girls had the full CANS workup... or maybe not, since they are in their later teens and therefore must not qualify for a "childhood" diagnosis. PANS has been suggested several times to officials here. Apparently falling on deaf ears. Here is the article http://thebatavian.com/howard-owens/expert-discuss-tic-outbreak-le-roy-meeting-scheduled-wednesday/29916#comments and here is the comment section.... Go at it folks! http://thebatavian.com/user/register?destination=node%2F29916%23comment-form

If you click on "history of changes" in the upper right corner and search around - it looks like the study ended in May of 2010. Perhaps we will still see results published at some point??

Hi Dawn - I can only give you our experience: 1. He found highly elevated C3D levels initially, indicating a large number of immune complexes - meaning DS was either fighting a really bad infection or he was having an autoimmune response. He also found mildly low IgG numbers overall, but found that DS was deficient in 11/14 s. pneumoniae specific IgG levels (which made sense since he had chronic sinusitis). About 4 months later he found mildly decreased IgA as well - and we had to keep an eye on this before starting IVIG as IVIG can be problemmatic with markedly decreased IgA. 2. 1.5 Grams/ Kilo 3. We do live out of state and that was not a problem with our insurance. I would love to move IVIG to our home town for every other visit (we go about every 6-8 weeks). I have a local doc (psychiatrist) who is willing to write the orders, but I've not yet contacted insurance to broach this. Dr. B would not write the orders for the out of town infusion, and it is my understanding that the insurance approval is physician-specific, though I am not completely certain. I would love to hear if others have experience with this.

My son always had flaming ears and cherry cheeks when he ate something with lots of food coloring. It was always worse when he was fighting infection - like his immune system was just at the breaking point!

Melanie - Nice to hear that he is doing better. Please continue to keep us updated.

We, too, live in an area that was under heavy influence by one of the CANS authors and it delayed my son's diagnosis by about 6 years while a cyst ate away at his sinuses because the only symptoms were PANDAS symptoms and the neurologist said it could NOT be PANDAS because he did not have strep throat and his ASO titers (take one time - 4 years earlier) were not elevated. The neurologist was a colleague of one of these authors, and basically offered to put my son on SSRIs but REFUSED to do ANY bloodwork to check for infection or immune problems. We did not do SSRIs, left and found Dr. B who had to spend 1 1/2 years undoing the damage. My son is doing much better now. That is why I am at least a bit hopeful that the CANS article seems to push for looking for infectious triggers - including (but not limited to) strep. Regarding anger and disgust over what we have lost and the role these authors have played in that in the past - yes - I completely get it. I cannot even begin to think of how different my life would be if we knew 6 years ago (or 13 years ago when we first saw symptoms) what we know now. However, that does not mean that the article is all bad. I still see it as a step forward- not a step back - though it is is clearly ill timed and confusing with the conflicting name.

LOVE IT

I agree - CANS you say "we need to pretend we are in the lead again and give this thing our own name before all the folks who have been working tirelessly to move forward say that it can be triggered by any infection and call it PANS"??

Yes - I have struggled with the shift away from autoimmune as well... also a shift away from infection-triggered (which seems pretty clear, yet not assigning an exact cause). Calling it "acute-onset" (whether it is CANS or PANS) is so very broad. If my child witnesses a traumatic event and then has a sudden onset of OCD or Depression - isn't that an acute-onset of a neuropsychiatric symptom? I can understand removing the autoimmune if we really do not know the role of antibodies vs. cytokines vs. methylation... but it seems to me that the idea that this is triggered by an infection is pretty clear in all the articles and definitions of CANS and PANS... but it is NOT in the title.

YAY!! It is REAL!! It is coming!! Yay!!

LIKE AGREE

LIKE AGREE

Part of the problem with commenting on an article without being able to legally post the entire manuscript is that things get left out. I apologize. It is true that throat culture was not in the table of tests, but that is because the table was meant to supplement the reading - and they do discuss - so here it is.... In the beginning when they discuss PANDAS (as in - only triggered by strep) they note that in order for strep to be the only cause of the exacervation.... The reappearance of symptoms should be tem- porally linked to evidence of a recurrent GABHS infection, whereas throat culture and anti-streptococcal antibody titer results are negative during periods of remission. Later on - when talking about the difficulty with diagnosing strep they say.... Several publications have emphasized that diagnosing a streptococcal infection is not straightforward.18,19 Without throat culture results, GABHS pharyngitis is difficult to differentiate clinically from pharyngitis caused by other pathogens. Positive throat culture results, however, do not eliminate the possibility of the individual being a streptococcal carrier (harboring GABHS for many months without symptoms of infection or an associated immune response). The use of anti-streptococcal antibody titers (Antistreptolysin O [ASO] and antiDNAse- to define an infection is also complex. For example, serial increases in a patient’s antibody titers more accurately define infection than does a single absolute elevated antibody titer; measurement of both ASO and antiDNAse-B are more accurate than either alone; anti- body titers may have a slow rate of decline; group A, C, and G streptococci all produce antigenically identical streptolysin O; GABHS carriers can have protractedly elevated anti- streptococcal antibody titers; and levels of these antibodies are normally higher in school-age children than adults.19,20 As stated by Johnson et al, ‘‘unless studies of any proposed association of GABHS infection. incorporate very frequent and intensive prospective observations during an extended period of time, the likelihood of incorrect interpretation(s) is significant.’’19 I do NOT like that they miss the fact that many children have NEGATIVE throat cultures because strep is not sitting on the surface of the throat or tonsils but may be lurking elsewhere... but I guess that is where the titers come in.

Yes... I agree that they do clearly state that routine use of antibiotics are not recommended when the underlying condition is not known. They state: As in all medical conditions, therapy for CANS should be based whenever possible on the specific diagnosis. For patients in whom the primary diagnosis is undetermined or there is no known therapy for the primary condition, symptomatic therapy is indicated for those indications causing distress or functional disability. Recommended treatments for OCD are selective serotonin reuptake inhib- itors; for ADHD, stimulants; for chorea, dopamine receptor antagonists, valproate, or tetrabenazine; and for tics, cloni- dine, guanfacine, or a dopamine receptor antagonist. Because the existence of a PANDAS condition remains con- troversial, the routine use of antibiotics or immune- modifying therapies (corticosteroids, intravenous immuno- globulin, plasma exchange) is not recommended. In the fu- ture, any therapy for idiopathic CANS, especially those directed specifically toward infectious or immune etiologies, should be evaluated in well-designed clinical trials before their general prescription. I hope practitioners do not take this to mean that you should not look for an underlying cause and treat it. I think they are saying that not everyone with tics or OCD has PANDAS (CANS) and that we should not automatically put everyone on antibiotics, steroids, or IVIG or PEX. The word "routine" here is certainly not clear. I don't think even the strongest PANDAS Docs "routinely" put kids on IVIG before trying antibiotics, steroids, and such. Also I don't think most kids with PANDAS end up at a PANDAS doc - so by the time they get there their case is far from "routine". I am not sure how doctors can do otherwise at this point. If every doctor aggressively looked for infection (including mycoplasma and lyme) among children with sudden onset tics or OCD using the tests these authors have identified and then treated the infection... we would be way ahead of the game (though I would like to see immune status panel and C3D at least included in the tests). Regarding whether these authors care for our kids or care more about their careers... well... I've also not been impressed with past actions and I also approach anything by these authors with skepticism.

OK - I was able to get the full text article and I just read it WITHOUT wanting to vomit or hit someone- so that is a good sign considering the authors. It does seem to be an attempt to bring the two sides together (call me Pollyanna) by giving credit to Swedo et al. early on by saying: "Although this disorder was conceived years ago, investigators at the National Institute of Mental Health deserve credit for formally establishing a set of criteria that could be critically evaluated." They then go on to identify the 5 criteria (below) and then give the limitations of each of the criterion... most of which we have discussed on the board. For example: (1) prepubertal onset, usually between 3 and 12 years of age; I think most of us realize that the onset can be before 3 or after 12... we've seen it in the kids on this board. (2) obsessive compulsive disorder (OCD), a tic disorder (lifetime diagnos- tic criteria), or both; They question why these two are picked as hallmarks of the disorder when so many kids have periods of tics and OCD without PANDAS and when saying "Further, it is not clear why required psychiatric symptoms should be restricted to OCD. A broader set of neuropsychiatric symptoms, including general anxiety, phobias, developmental regression, poor con- centration, emotional lability, and sleep problems, with an emphasis on OCD may be more appropriate. (3) sudden ‘‘explosive’’ onset of symptoms and course of recurrent sudden exacerbations and remissions; they question this because there is no clear definition of "explosive" onset. (4) temporal relationship of exacerbations with GABHS infection; The authors actually do a decent job (IMHO) of explaining why it is so dang hard to diagnose a strep infection..... and talk about the need to do at least 2 ASO/DNASE B titers to look for a change over time. What they do NOT do (and I don't like) is talk about how some kids do not mount elevated ASO / DNASEB even with an infection due to immune deficiency... but that is another story. (5) presence of neurologic abnormalities during periods of symptom exacerbation (tics, hyperac- tivity, choreiform movements).] The authors seem to mostly question the choreiform movements here - questioning if they are really chorea and if some of the kids actually have sydenham's chorea. They then try to save face from their earlier work by discrediting strep as the only trigger (no kidding... have they NOT been reading this board??) and they site their own earlier works that back this up. They do acknowledge mycoplasma and lyme, along with other infections, as triggers. Then they go on to propose CANS - which - as everyone has mentioned - does NOT include the autoimmune component and is slightly different from PANS, which we are all starting to embrace. I think Dr. T also touched on the idea that the autoimmune was being dropped in PANS in one of the recent videos (http://www.latitudes.org/forums/index.php?showtopic=15930)... saying that the idea of antibodies being the cause may not be entirely correct and it may have as much or more to do with cytokines and other immune chemicals. I guess that is up in the air right now... though I fully believe this is an immune disorder. Singer et al also went on to recommend some tests for CANS and I am listing them below. They say: "After a complete history and examination, the diagnosis of CANS mandates a comprehensive laboratory evaluation (Table IV). Whether the entire suggested diagnostic battery should be obtained in all individuals remains unclear. When symptoms are severe, incapacitating, persisting, or accompanied by somnolence, seizures, and/or a movement disorder, complete testing should be performed. For individuals with a movement disorder, a videotape of the symptoms should be reviewed with a neurologist having expertise in the field." Here are the tests they recommend in Table IV - I am not thrilled with the lack of immune tests, but there are some other good ones here: Blood Complete blood count Basic metabolic panel Liver function tests Ammonia Sedimentation rate ASO Anti-DNAseB Thyrotropin Anti-thyroglobulin antibody titers Anti-thyroperoxidase antibody titers Toxicology screen Antinuclear factor NMDA receptor antibody Other: when indicated, testing for mononucleosis, Borrelia burgdorferi, Mycoplasma pneumonia, etc. Urine Urinalysis; Toxicology Heavy metal screen Lumbar puncture (assuming concern for a CNS infection or lacking a clear etiology): Cell count with differential Glucose Protein Gram stains Cultures Viral PCRs Immunoglobulin G index Antibody titers (NMDA, AMPA, GABAb receptors) Brain imaging MRI preferred CT if concern for acute hemorrhage or trauma EEG Video For patients with movement disorders

I have to agree that my local doctors are much more accepting since my son has seen several PANS experts. I think the local docs were all afraid to make the initial diagnosis, but now that there are several doctors all concurring, the local docs are much more interested and when I see a new local doc they actually ask me questions like "when did you first start to realize the behaviors were tied to infection?" and "How many exacerbations has he had?". It is very validating at this point, I have to say. As everyone else mentioned... I always bring the latest article to the doc... in fact - we are seeing a psychiatrist tomorrow. I am thinking about brining the Jenike & Dailey newsletter from IOCDF (http://www.ocfoundation.org/EO_PANDAS.aspx) since it talks about PANS - does anyone else have any suggestions for something recent that he might be interested in?

Thank you - Dr. T... and I don't know if the Mom (Maggie Glynn) is on the forum- but if you are - Maggie- thank you as well. You are a wonderful representative of all of us and I wish your son continued health and good management of his PANDAS (PANS).

Tami - I do think strep (and maybe mycplasma) could be stirred up with the surgery and I am wondering if cipro is enough for him. Do you have a PANDAS doc? Many kids are on more than one antibiotic and this may be a time that the PANDAS doc would want to do this. I do remember both of my children having very white tongues and throats - though it is interesting that the yeast medication alleviated this for him. Would it be OK if you gave him yeast medicine for the next week or so? This would especially be good if you end up increasing antibiotics. Don't forget about ibuprofen to reduce inflammation if he can take it. Also - you may want to add in anti inflammatory supplements like quercetin if he has taken them and you know he does OK with them. It must be very difficult to see him in such pain. I hope he can find something to enjoy and take his mind off of it a bit while it heals. Hang in there!

Hello and welcome to the forum. It is such a long journey for us as we try to find out what is causing our children's sudden onset behaviors. The fact that your daughter has other neurological issues may make it more difficult for doctors to recognize PANDAS/PITAND if that is the problem - but one thing I have learned from reading posts on this forum is that there is no one "standard" child with PANDAS/PITAND, and there is no reason for a doctor to brush of your concerns about PANDAS even though your child has other neurological conditions. It is probably best for you to start with the pinned threads at the top of the page and look for a doctor who has helped near you. I would think that a doctor who understands PANDAS/PITAND would do some bloodwork with your daughter to look for signs of current or recent infections such as strep, mycoplasma, and lyme disease. They would probably also do an immune status panel with the s. pneumonaie serotypes. One thing to consider is that children with this condition can have an exacerbation with any infection or inflammation (including allergies), so it is important to look "beyond strep" when you are trying to figure out what is going on. It would be good if you could figure out what the September fever was from (if at all possible). Sometimes our children continue to have reactions even after the infection is gone, because the autoimmune process continues interfering with the neurochemicals in the brain. One thing that can help sometimes is ibuprofen because it reduces inflammation. If your daughter is able to take ibuprofen you may want to try that for a day or two to see if there is a change in behavior. You don't want to use ibuprofen long term because it is bad for the liver, but if you would normally give it to her for a couple of days when she is sick, you may want to try it now. Keep us posted on how she does ~ and best wishes for answers in this new year!

Hello SoCalMom and welcome to the forum. I found this forum about 2 years ago when my son, who was 12 at the time, was in an exacerbation. He'd had PANDAS exacerbations for most of his life, but I was repeatedly told it was not PANDAS because he did not have strep throat when he flared up - usually sinus infections. Having a child with PANDAS can be overwhelming and frightening. However, I've found the best way to deal with those feelings is to educate myself, and this forum is a great place to start. There are other families on the forum from southern CA and I am sure they will have specific suggestions for you regarding doctors and such. They may send you a personal message, and the PM notification shows up in the upper right hand corner of your screen - near your user name. If you are comfortable posting information about your son's case as questions arise, families with similar experiences may chime in. I wish you well and hope that 2012 brings you a treatment plan for health for your child and your family.

Prayers are being sent right now. You are such a good Mom. Hang in there!

Ellen - I am so very sorry to hear this - but I do thank you so for posting. You have been such a strong advocate for your son and such a wonderful source of comfort for all of us. Please know that we are all with you and I hope your post will lead to some answers for you.

Ok... somebody needs to do a poll on this... put us in the camp of 1. Frequent and very high fevers at a young age(104 was not rare) 2. Extremely infrequent fevers now even with confirmed infetion 3. Immune system tested out in normal ranges when younger 4. Immune system now demonstrating deficiencies (IgG and IgA)

DS14 is positive for PANDAS and likely for lyme/coinfection. We have been treating him with a lyme protocol (doxy / azith daily and tindamax on weekends) for a bout 3 months now. He continues to complain of fatigue and attends school - on time - about 2-3 days a week. He is usually late 1-2 days a week, and he misses one day entirely each week. When he is home he sleeps until easily 2 or 3:00 - then gets up, eats, tries to stay caught up on work, and then goes to bed for the night. The problem is that there are days when he seems almost hyper and seems to have plenty of energy. As far as "fun" activity - he is able to go to the skate park on Saturdays for about 4-5 hours... but is pretty wiped when he gets home and usually sleeps all day Sunday (he used to go to the skate park for 10 hours or more easily). I am looking for help to know if: 1. This is really related to the lyme and/or the treatments. I have advocated for DS for a very long time but I really do not want to be making excuses for something he can control. 2. If anyone has any supplements or other ideas to combat fatigue and get kids up and to school in the morning. 3. How long with this last - is there an end in sight... will it just start to resolve on its own or do I need to be investing in some additional counseling (DS already getting some counseling and has a behavior program, but neither is touching this.) Thanks so much to all of you great parents!