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Momwith - oops - my dd has been copying a problem from her homework into a little book and then solving it. I (stoooopid) told her not to, thinking it was an avoidance type thing. Huh, guess it's apology and "mummy's not so right" time Thanks

thanks for the responses we'll try some extra support over the summer. She has had issues in the past with speed for writing but when we focus our efforts and get her really confident then she picks up. Momwith - yes, I have wondered if the PANDAS/cognitive ability thing is being made worse and thus noticeable for her 'cos of OCD/anxiety. I read a good description in a Tamar Chansky book where she says it like this (my parapphrasing 'cos I can't quite remember it) I think I am less able to cope or handle things than I actually am/I think the problem is greater than it is. Sorry if this is obvious to folks but it really struck a chord with me and although it wasn't truly new as an idea (I am very much like this myself, only taking on things that I know I am good at), I hadn't quite framed it like that, and my dd and some of her school stuff suddenly made more sense. Thanks again, we'll keep plugging away.

Is it flushing? Full body or just limbs? (sorry I'm not going anywhere with this just wondering and clarifying for those that might know)

Hi - our dd8 has had PANDAS/PITANDS for at least 4 yrs (dx 2008). For the last 2 years, her flares have been generally low but fairly frequent and she hasn't achieved 100% baseline for the last 2 years but is fairly close at 95% ish between flares. She is reading 5 grades ahead, is good at writing, science etc. She seems to have no issue learning facts in subjects other than math. She gets the concepts of math well enough but is slipping behind, seemingly 'cos she can't seem to learn the math partners eg just KNOW that 7+4 = 11 (she has to count on) and can't seem to get the times tables. It isn't an issue for me. I feel they have way more than they should have to deal with anyway and believe, and have told her so, that you can't be great at everything. However, she is feeling the discrepancy. She says she isn't confident, she can't concentrate for math at school (but does concentrate well for other subjects) and it is stressing her. She says she is one of the slowest in her class. Is this a PANDAS thing? Can just 1 subject suffer? Have other parent seen this with math alone? If it is PANDAS related, is there anything specific we can do to support her other than treating the PANDAS? Thanks

Hi - both my dd and ds had a lot of sensory stuff with exacerbations when younger. Doesn't seem to be a big part of the picture now for either but dd especially was down to 4 or so items of clothing, no socks, only sandals etc. Hairbrushing and bathing were a very difficult issue at times too. For ds it has more centered on vestibular insecurites and only a little tactile defensiveness... definitely came hand in hand with PANDAS.

can you have your child's titers tested and if high enough to show immunity will your school/state requirements accept the test results?

Hi - not a long term solution but a stop gap while you are doing other thigs but many find some relief with Ibuprofen. If your child can tolerate it, we dose 2 or 3 times a day. It really seems to help our PANDAS ds. We make sure that we are giving it with food to lessen any negative impact on his stomach. He tolerates it well and it really helps to take the edge off.

Hi - Dr Golan in seattle is an integratvie who is fairly Lyme aware. We saw him for our PANDAS ds and liked him a lot. he has a web site http://ralphgolanmd.com/ hope she gets some help...

Hi - found this on web. don't know it's validity but... Diagnosis of Vitamin D Deficiency What’s the Right Test to Diagnose Vitamin D Deficiency and Why? Laboratories offer two tests to determine vitamin D level in the blood. In vitamin D deficiency, one of them is low whereas the other one is often normal. Most physicians don’t know the distinction between these two tests and may order the wrong test. Consequently, they may say your vitamin D level is normal, when it’s actually low. The right blood test to evaluate your vitamin D status is: 25 (OH) vitamin D (25-hydroxy vitamin D ). The other blood test for vitamin D is 1,25 (OH)2 vitamin D (1,25 dihydroxy vitamin D). This is the wrong test to diagnose vitamin D deficiency! Why? There are two reasons why 25 (OH) vitamin D and not 1,25 (OH)2 vitamin D is the right test to diagnose vitamin D deficiency. Reason 1: 25 (OH) vitamin D stays in your blood for a much longer period of time (half life of about 3 weeks) compared to 1,25 (OH)2 vitamin D (half life of about 14 hours). Therefore, 25 (OH) vitamin D more accurately reflects the status of vitamin D in your body. Reason 2: As vitamin D deficiency develops, your body increases production of parathyroid hormone by the parathyroid glands situated in your neck. Parathyroid hormone increases the conversion of 25 (OH) vitamin D into 1,25 (OH)2 vitamin D. Consequently, 1,25 (OH)2 vitamin D level in the blood will stay in the normal range (and can even be high) even if you’re low in 25 (OH) vitamin D.

my ds 4 has that symptom set - ADHD, aggression, ragey, some OCD. If it weren't for his older sister's classic PANDAS onset and symptom presentation I doubt he'd have been dxd with PANDAS. His known triggers are strep, flu and yeast. Others, too, that we haven't pinned down

can you tell us where the pain is.. is it all over or joint or muscle?

Hi - yes our ds4 is also a spitter at times.. it feels ticcy sometimes and at other times more OCD ish (eg when he spits food down the toilet). When life gets truly lovely in our house and he's bouncing off the walls, I'll be the target on occasion, when the tics coincide with increased aggression. Lovely It does resolve when all the other symptoms resolve. The food aspect worries me the most. He doesn't do it often and only at the height of spittiness. I think it's a sensory thing more than true OCD. He feels as though he's got too much in there but nevertheless, knowing how this beast can morph, I'm concerned it'll become a bigger issue.

Thought this was interesting. Saw a similar post the other day - apologies if it's the same article.... http://www.health-essentials.info/science/foods/A2-vs-A1.html we're lucky we have a local source for A1 free, organic, 100% grass fed milk. (Little soap box aside - Up until recently, I naively thought all dairy cows were grass fed.... then I saw a truly horrific video of dairy cows and how the vast majority get the truly ***** end of the stick when it comes to animal husbandry.... buy organic.. better for cows, much better for our kids, especially if A1 free it seems.... sorry, soap box has been put away.) thanks

hi - here's a commentary type artcile discussing the study... http://health.usnews.com/health-news/news/articles/2012/04/25/experimental-drug-eases-autistic-behaviors-in-mice

http://stm.sciencemag.org/content/4/131/131ra51 here's the abstract but I think you can register for free and get the whole article Neurodevelopmental disorders such as autism and fragile X syndrome were long thought to be medically untreatable, on the assumption that brain dysfunctions were immutably hardwired before diagnosis. Recent revelations that many cases of autism are caused by mutations in genes that control the ongoing formation and maturation of synapses have challenged this dogma. Antagonists of metabotropic glutamate receptor subtype 5 (mGluR5), which modulate excitatory neurotransmission, are in clinical trials for fragile X syndrome, a major genetic cause of intellectual disabilities. About 30% of patients with fragile X syndrome meet the diagnostic criteria for autism. Reasoning by analogy, we considered the mGluR5 receptor as a potential target for intervention in autism. We used BTBR T+tf/J (BTBR) mice, an established model with robust behavioral phenotypes relevant to the three diagnostic behavioral symptoms of autism—unusual social interactions, impaired communication, and repetitive behaviors—to probe the efficacy of a selective negative allosteric modulator of the mGluR5 receptor, GRN-529. GRN-529 reduced repetitive behaviors in three cohorts of BTBR mice at doses that did not induce sedation in control assays of open field locomotion. In addition, the same nonsedating doses reduced the spontaneous stereotyped jumping that characterizes a second inbred strain of mice, C58/J. Further, GRN-529 partially reversed the striking lack of sociability in BTBR mice on some parameters of social approach and reciprocal social interactions. These findings raise the possibility that a single targeted pharmacological intervention may alleviate multiple diagnostic behavioral symptoms of autism.

Hi fcxefcer, thanks Yeh, my ds has had c-diff before. Joy He's taking florastor, pharmax probiotics, some culturelle in the mix, a live one with prebiotics that the kids love the taste of and as much kefir (milk and fruit water), lassi and konbucha drinks as I can get in him. Thankfully he loves the lassi, kefir and kombucha drinks and has the other stuff without too much fuss. Clindamycin scares me to be honest but I want to really make sure the strep is gone. I hate the fact that you can get sick even weeks after the clindamycin but will just try to be super vigilant with the good bugs and not let it slide.....

Hi - both dd and ds are on clindamycin for strep treatment. Ds swabbed positive on butt, dd negative but flaring. It's 3 doses a day. I'm aware that the half life is short 2.15 hours or so. I'm not waking anyone up but am dosing as early and late as possible. Should I be going to dd's school to maximise spacing or is that going overboard? thanks...

LLM - I've just started the one you recommended "freeing your child from anxiety" and will try your second recommendation after that one. Our ped has about 100 PANDAS patient. Their drs waiting room has a library resource for parents and kids. I may donate a couple of these excellent books to it. They're so helpful. I remember reading the tamar chansky book on ocd when we first got dd's dx a few years back but have been so focused on researching the medical side that this side has been neglected. thanks gain....

Hi - thanks so much for the suggestions. My dd absolutely loves the "what to do... worry too much" book (brain stuck one is on the way). She said tonight it's the best book she's ever read and she's a voracious reader that loves books, so that is high praise indeed She also likes "up and down the worry hill" but feels it's a little young for her but is trying to read it to younger brother (also PANDAS)but he won't listen. "Kissing doorknobs" seemed to have some teen sexual content and thus too young for dd8 but I will keep a note for later years. Mind you she managed to get a Monster High book past me from a second-hand bookstore and read it before we realised it's content is a tad too old for her She is really, really super pleased with the books. I can't believe we waited so long to do this for her so thank you again for those excellent suggestions. She now wants the 'what to do' books for nail biting for herself and for what to do when your temper flares - for her 4 year old brother!

bump

Thank you both. My dd8 is flaring mildly at the moment. Intrusive thoughts (we think, she's calling it the voice) some bedwetting this am, fears at bedtime, some antagonism/attitude type stuff. While her fears are mild at the moment in comparison, I think they're getting her down and she asked last night if there were some other ways that she could handle them or deal with them better. I'll go hunt at the book shop today or amazon them.... thanks again

Hi - My dd also complained of hearing voices, which we think were auditory hallucinations, at one point. They were fairly mild.. usually late in the day, especially toward bedtime and lasted a couple of months or so. She had difficulty in specifically describing them. They seemed to morph into intrusive thoughts and now, recently, she said 'the voice is back' but now describes it as her own thinking but different in some way.

Hi - I was wondering what resources people have used together with their kids or that the kids can read or use on their own. looking for ideas.. any that are particularly good? thanks

happy to sign...

Hi again - no we have used the oral solution for cromolyn. It is odorless, colorless and tasteless so easy to get into kids but has to be 4 x a day. It has to be rxd and is super expensive (luckily our ins paid) it was 800 US dollars for 1 month's worth for a 40lb child. Perhaps another try at nsal spray if ur child will tolerate it being older.....