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Hello. (We're living in the US but from the UK, so, hi!) I think somebody recently mentioned that Dr Kovacevic from Chicago (www.webpediatrics.com) recently went to Europe, not sure where, to talk to doctors there, fact finding kind of thing... maybe someone in the know can chime in or maybe you could mail him or Dr. leckman at Yale to see if they can put you in touch with drs there. Also try Diana Pohlman at the pandas network. I think the link is www.pandas.net. If that doesn't work it's in one of the mail that is "pinned " at the top of the forum discussions. Good luck.

Our dd eats way more during epidodes. I can't tell if it's an emotional thing, she needs the energy 'cos it's draining on her or more like a reverse anorexia thing going on. My sister (who MAY have exhibited signs of PANDAS throughout younger life) says that when she was 7 she just decided to eat (a lot). That was how she described it, she couldn't define it any more than that - just she decided to eat more.....

Breaching the Blood-Brain Barrier as a Gate to Psychiatric Disorder http://www.hindawi.com/journals/cpn/2009/278531.html

Dopamine certainly seems to play a role in both PANDAS and schizophrenia. Off on a schizophrenia tangent but I read about this the other day... http://www.sciencedaily.com/releases/2009/...90311085151.htm

Our dd also had an amox rash that was very hive like. It only stopped when she stopped the amox. She did the allergy test followed by the oral challenge but was found not to be allergic. She has since taken penvk daily for prophylaxis for maybe a month or so until we changed her to azith for its immune mod effects. I believe the non allergic amox rash is thought to occur when you have a virus at the same time such as mono and the body reacts to both.. gets confused is how our allergist put it, the body then reacts as though it has a rash like illness. From wikipedia, if you trust it... Somewhere between 3% to 10% of children taking amoxicillin (or ampicillin) show a late-developing (>72 hours after beginning medication and having never taken penicillin-like medication previously) possibly itchy rash, which is sometimes referred to as the "amoxicillin rash." The rash can also occur in adults.

Our dd6's score was 165%. At the time of the draw she was symptom free and still is a few months later. Our ds2 had a score of 151% and we are currently trying to work out if he is symptomatic or not with a steroid burst. For our dd, when she was in exacerbation, it was moderate OCD,very mild tics and behavioural changes, such as being combative, defiant, emotional. Although to us they felt huge, reading some of the posts on here, I think the behaviour changes were only moderate. Cognitive skills and drawing etc took a nosedive and we had disturbed sleep and quite a lot of sensory issues.

Shame I can't construct a sentence properly, though..... :-)

that made me cry.. to see them discuss PANDAS as though it were as accepted as a real diagnosis. feels like we're really getting somewhere.....

Hello I've been having the same doubts/questions with our 26 month old son. His CamK came back at 151% and he had elevated antilysogangliosides, normal below 320 his was 640. Tonight he took his first dose of a 5 day steroid burst... I'll keep you posted as to what, if any, changes we see.

This all sounds very familiar - even to the fingers down the throat stuff.....

Hello I've always had a few floaters.. for me I mean (from Mayo clinic site) "Eye floaters may look like dark specks or knobby, transparent strings of material floating within your field of vision. These specks and strings move when you move your eyes, so when you try to look at them, they appear to dart away. In most cases, the floaters eventually settle down to the bottom of the vitreous cavity out of the line of vision. In rare instances, eye floaters can become so numerous that they significantly interfere with your vision. Eye floaters most commonly occur as a result of age-related changes in the vitreous, the jelly-like substance that fills your eyeballs and helps them maintain their round shape. Millions of fine fibers are intertwined within the vitreous. These fibers are attached to the retina, the light-sensitive tissue that lines the back of your eyes. Over time, the vitreous changes in consistency and partially liquefies — a process that causes it to shrink and pull away from the interior surface of the eyeball. Most people over the age of 40 experience this phenomenon to some extent. As the vitreous shrinks and sags, it clumps up and gets stringy. Bits of this debris block some of the light passing through the eye, casting tiny shadows on your retina." Mine got much worse after a c section. I always wondered if they were hanging around but increased fluid levels 'cos of IV fluids dislodged them. The flashy light thig can also be due to floaters. I sometimes get this at the edge of my vision but not often... (again from the may site) Usually, these changes in the vitreous occur gradually. But in some cases, a section of the vitreous will pull away from the retina suddenly — causing many new floaters to appear all at once. You might also see flashes of light when the fine fibers in the vitreous tug on your retina. Sometimes, these fine fibers pull so hard that they cause your retina to tear and pull away from the back of your eye. While a vitreous detachment by itself doesn't threaten your sight, it can cause a retinal tear or a retinal detachment — a medical emergency that requires urgent treatment. A retinal detachment can lead to permanent vision loss.

Faith - I was hoping to do the steroid 'cos we have possibly seen PANDAS behaviours and he has an elevated CamK. 'Cos he's so young, I'm not sure if I'm seeing just our son or our son +PANDAS. I am hoping a steroid burst would lessen any PANDAS symptoms he may have, so we can see what we are dealing with and have a true idea of his baseline/normal personality. Our ped is a true believer and is happy to do the steroid burst for 5 days and then followup with treatment or prophylatic abx depeding on what the steroid burst shows. If we havea really big difference on steroids she's even willing to do IVIG but I would like to give him a few months before we did that, just 'cos our dd6 did heal so well once on abx. Our dd6 never had a steroid burst but did respond well to abx or just time alone. It usually takes her 5-6 months to heal properly. Our dd6 is currently symptom free and hasn't had even a minor exacerbation in 7 months :-) She is on 600mg of azith weekly split into 2 lots. 300mg on tues and 300 mg on sat. Her last small flares were while she was on prophylactic azith but resolved quickly. We put her on full dose for a bit.

Wendy - I also meant to ask what type of behaviours you were/are seeing in your 2 year old son?

Wendy - the symptoms I think I see are VERY lively, he doesn't stop at all. He's driven to do stuff, very difficult to distract.. not quite sure I'd call it fixating but... He doesn't like loud noises, had a short period where socks were a problem. He isn't a good sleeper but recently has been just awful, with many wakings a night. Also recently, his sister got ill with low level cold symptoms and nausea (nausea and vomitting seem to streppy signs for her) after this his sleep and behaviour got much worse and haven't got better. He's not naughty just wild somehow and when you try to discipline it escalates rather than calms down but not always. I saw this pattern very much with our dd in episodes as we saw a lot of oppositional stuff with her. When our dd had her 1st noticed episode our ds was 9 months old. At the same time he had a really sudden onset of sep anxiety, literally overnight , which we put down to age or 'cos his sister was taking up all my time but now I wonder.... He did the seperation thing again when he had a bad ear infection. Trouble is, so much of what he does could still fall within the remit of normal for 2 but with a high CamK and anti lyso and a sister with a clinical picture, I don't want to take any chances. We aren't on abx yet.. wanted to do the steroid burst first. We intend to do abx tho' regardless of results. If we see improvement on steroids our plan would probably be treatment levels of abx for a period and give him at least 6 months to heal on his own, if he can. Our dd6 has got back to a symptomless state with just abx and time - usually takes 5-6 months. If he can't do it himself, reassess IVIG and other options. If we see no improvement on steroids just do proph levels of abx. What are your next moves with your youngest? Having read your success with abx for your 2 yr old, I'm wondering if we should just do that...or combine with steroid. Wanted to keep the steroid test "clean" so we could really pinpoint any benefits but not so sure now... Thanks for responding... I think PANDAS hits these children younger than we think or at least, can hit them reallt young. Danuta.

Thanks for that... he's really good at taking stuff.. even bad stuff. We've somehow convinced him if it comes in small amounts it's stuff he wants! I think 'cos he sees his sister take stuff, he's desperate not to miss out :-) Cheers for the answer, bit nerve racking 'cos he's so little.

Hello. We are going to do a steroid burst on our ds2. We've seen some hints of PANDAS in his behaviour and he came back with a CamK of 151% and normal antineuronals with the exception of 640 on lysoganglioside, normal being <320. (His sister 6 has a PANDAS diagnosis.) My questions are - Has anyone done a steroid burst on a child this young (26 months)? He's 35lbs ish - what should his dose be? Our ped intends to do a 5 day burst - will this be long enough? How soon after starting steroids are people seeing a remission in symptoms? I apologise for asking questions that have probably been asked and answered before but there are so many threads on steroids and to be honest I'm just pooped at the moment 'cos he's waking me 8+ times a night. Like many parents on here, I've never had good sleepers but every 45 minutes is driving me slowly crazy and a bit lazy.. so sorry again for the questions..... Thanks....

Chemar - do you know why people with TS have this negative response to steroids? Thanks....

Hello Group A strep is beat hemolytic but there are other ones that are beat hemolytic as well.... I copied this from wikipedia Beta-hemolytic streptococci Group A S. pyogenes, also known as Group A Streptococcus (GAS), is the causative agent in Group A streptococcal infections, including streptococcal pharyngitis ("strep throat"), acute rheumatic fever, scarlet fever, acute glomerulonephritis and necrotizing fasciitis. If strep throat is not treated, it can develop into rheumatic fever, a disease that affects the joints and heart valves. Other Streptococcus species may also possess the Group A antigen, but human infections by non-S. pyogenes GAS strains (some S. dysgalactiae subsp. equisimilis and S. anginosus Group strains) appear to be uncommon. Group A Strep infection is generally diagnosed with a Rapid Strep Test or by culture. Group B S. agalactiae, or GBS, causes pneumonia and meningitis in neonates and the elderly, with occasional systemic bacteremia. They can also colonize the intestines and the female reproductive tract, increasing the risk for premature rupture of membranes and transmission to the infant. The American College of Obstetricians and Gynecologists, American Academy of Pediatrics and the Centers for Disease Control recommend all pregnant women between 35 and 37 weeks gestation should be tested for GBS. Women who test positive should be given prophylactic antibiotics during labor, which will usually prevent transmission to the infant.[5] In the UK, clinicians have been slow to implement the same standards as the US, Australia and Canada. In the UK, only 1% of maternity units test for the presence of Group B Strep.[6] Although The Royal College of Obstetricians and Gynaecologists issued risk-based guidelines in 2003 (due for review 2006), the implementation of these guidelines has been patchy. Some groups feel that as a result over 75 infants in the UK die each year of GBS related disease and another 600 or so suffer serious infection, most of which could be prevented [7] however this is yet to be substantiated by randomized controlled trial in the UK setting and, given the evidence for the efficacy of testing and treating from other countries, it may be that the large-scale trial necessary would receive neither funding nor ethics approval.[8] Group C Includes S. equi, which causes strangles in horses,[9] and S. zooepidemicus - a subspecies of S. equi - which causes infections in several species of mammals including cattle and horses. This can also cause death in chickens and moose. Group D (enterococci) *variable in hemolysis Many former Group D Streptococci have been reclassified and placed in the genus Enterococcus (including S. faecalis, S. faecium, S. durans, and S. avium).[10] For example, Streptococcus faecalis is now Enterococcus faecalis. The remaining non-enterococcal Group D strains include Streptococcus bovis and Streptococcus equinus. Group G Streptococci These streptococci are usually but not exclusively beta hemolytic. Streptococcus canis is an example of a GGS which is typically found on animals but can cause infection in humans When our dd had her 1st episode she came back positive for beta hemolytic strep NOT group A. So it was one of the above but not Group A. We have since been told that labs can make mistakes as the different groupd can look similar on the plates on which they grow the bacteria. Hope this helps....

Dr Cynthia Keller and Dr Sharon Hemplar at Redmond Pediatrics in Redmond Nr Seattle, Washington.

Elizabeth - my uncle and aunt on my mom's side had the night terrors. My mom's other sister had a bad bout of RF as a child, whether this is linked in any way I don't know. They always had their night terrors in response to fevers, I believe. My dd has had minor flares of PANDAS in response to other illnesses but it only seems to happen when the illness is accompanied by fever and if I understand correctly, fevers can lessen the effectiveness of the BBB. Perhaps these night terrors run in families who have weaker BBBs in general.. ?

Hello... Our dd also had very bad nights during exacerbations. In particular she would have night terrors. I thought they were bad dreams followed by fearful crying fits then I read about night terrors and it was exactly what was going on for us. Even now at the slightest hint of a fever she has them but scaled down. There are times when she is coming down with something where she feels hot to me, perhaps not actually warmer, but her temperature has a different quality, sort of more radiant to the touch but the thermomenter says she's withiin normal but thsat night she'll have a night terror. I don't bother with the thermometer for those low ones anymore just whack her with ibuprofen and she doesn't get the night terror. Night terrors run in our family.. an aunt and uncle of mine had them, and according to the literature they do indeed run in families. I thought it interesting that some parents on here have reported that their kids get night or day time hallucinations which often have a green or blue colouring to them. Children often report seeing green monsters or little green men during night terrors. My uncle always saw green elves/men climbing the curtains....

Hello. Our dd had her first noticed episode at 4. With hindsight, I believe, we were seeing things as early as somewhere between 2 and 3 yrs old. If it hadn't been for her obvious OCD and tics at 4 yrs, we could have easily put her behaviour changes down to other things and, in fact, did for those earlier minor episodes. Things didn't feel right but you question yourself.

Excellent.. thanks for those.. we are already patients at NW asthma and allergy but not with that particluar dr.. thanks again, Danuta.

Anyone know of a good immunologist that "gets" PANDAS in the Seattle area? Thanks...

Thank you for the responses.... I have shot out e-mails to Dr. Cunningham's office via Kathy Alvarez ( I can't say enough good things about her and her staff, they have been so great with us), to Dr. Leckman, Dr.K and may also try Dr. Latimer. Elizabeth - we are still waiting on the neuronal antibodies, just the CamK came back last night. It'll be interesting to see what they are like. This morning I keep looking at our son and thinking 'stop freaking, he's just your usual lively, 2 year old boy' and wonder if having been there with our daughter I am seeing demons when there are none. Anyone else have an opinion, please chime in.... Thanks, Danuta.