Kiera

Just read this article on PANDAS that states tonsillectomy is almost a standard of care for PANDAS in Europe : http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain 1) Of the parents that chose this route on the board - what has the outcome been? Have exacerbations reduced? 2) What do the expert PANDAS Drs say about doing tonsillectomy 3) If your child is like mine, who reacts to even being around strep and never gets sore throat or typical strep symptoms, would a tonsillectomy do any good in these cases? Thanks for any imput!

My ds's 1st diagnosis was SPD at age 2 (he's now 9) but when he gets a PANDAS flare the sensory stuff goes through the roof and calms down to baseline with remission of PANDAS symptoms. As regards OT, worth trying. The SPD foundation is trying hard to get SPD as an independent diagnosis in the DSM V edition, due out in 2013, in which case it'll be recognised and have a code to be billed for. Right now, OT is usually billed under a variety of other labels eg fine motor delay, as in my son's case. However, after a couple of years of covering it, they stopped this year and state it's excluded, so it's a case by case basis with the insurance companies! As with alot of these neuro disorders - cause unknown, but I'm sure as previously mentioned, inflammation has a lot to do with it, or at least aggravating it!

Great idea for a thread! My son sits on one of those large exercise balls when doing homework, so he subconsciously is constantly balancing himself as he works. Or I use one of those vibrating massagers on his back as he works - basically the opposite of what a typical kid would want - distraction while working! As for coping with the constant draining of your emotions, I like the glass of wine at the end of the day remedy!! Seriously though, when my frustation levels build, I always think of how much worse off he could be. Sad to say, but I'm sure everyone knows of other kids with either terminal or severely disabling conditions and at least we have some fun periods in amongst the rages. Looking through photo albums of fun occasions also helps and finding joy in the moment when he hugs you or acts silly and immature but still makes you laugh, just accepting him for his quirky, uniqueness and accepting that he doesn't have to fit into the square box of life!

Stephanie2, when you're all feeling better, just wondering how on earth do you get a small child to take 20 - 25 remedies (at the beginning)?? I tried the DAN protocol with my son, and we had to stop at 12 supplements (he couldn't swallow pills) and I was so stressed out everyday trying to get everything into him by crushing, opening capsules, drops etc etc to a skinny, picky eater with texture sensitivities!!!

Great news! Just wondering why some do PEX as opposed to IVIG? What's the reasoning as to which way to go? Thanks.

The "sudden onset" criteria also delayed diagnosis for my ds, but also the "presence of chorieform movements" was difficult to interpret for me so I put PANDAS to the back of my mind until the 2nd exacerbation 6 months later following a chest/ear infection and same pattern of behaviors followed. It seems there's such a range of symptoms in our kids that the criteria needs to say "may include, but not necessarily include xyz.."

My ds 8 falls in the category of multiple diagnosis (sensory, anxiety, speech delay, ADD, GI issues, some ODD) all prior to PANDAS, yet given all these difficult behaviors, the PANDAS symptoms stuck out like a sore thumb as being obviously something serious going on, and with treatment with steroids and antibiotics, he returned to his baseline before PANDAS, with all his old conditions as before! The obvious PANDAS symptoms were : sensory issues became extremely exaggerated with new sensitivities like smells and tastes that were never there before, OCD appeared out of the blue concerning contamination fears, OCD episodes looked like psychotic episodes not typical OCD, rages - oh the rages!! Slamming doors, throwing things, yelling, Meltdowns worse than usual - hiding under the bed, in closets crying uncontrollably and a persistant throat clearing, sometimes eye blinking tic appeared! All this happened simultaenously, following a strep infection, so there was no doubt for me this was PANDAS and not just a ramp up in his usual disorders. But the big question - is PANDAS just another disorder he happens to have unrelated to his initial diagnosis - highly unlikely, OR is PANDAS another presentation of something grossly wrong in our envoirnment that's causing an explosion in autism, allergies, autoimmune disorders, asthma, ADHD etc. The latter I'm sure and only time will tell!

Tiffany, Sounds like you're on the right path and with a ped that actually thinks so too is great! Just read all you can about PANDAS, see if there's any improvement with the antibiotics, try some ibuprofen, see if it helps, then take it from there. My ds 8 is also on cefalexin, he started twice a day, after a few months we lowered to three times a week prophylaxis and when PANDAS flares goes back to twice/day. You may see a gradual, slow improvement over several months (as in my son's case) or if not, then you can explore IVIG as an option, but you've made the right start! Good luck.

Well my ds is definitely in the over-reactive column! His skin and blood tests are off the charts reactive to almost every major food group, yet he'a never had an anaphylactic reaction to anything! So he eats everything, as he's underweight. I've never been able to make sense of the whole allergy thing and his allergist wasn't much help either. Hopefully one day they'll be able to figure it out

ajcire, that's funny! It's also strange that it's the same tics each time with a PANDAS flare-up, even though he's had various transient tics over the years, but it's good in a way because I know it's PANDAS now. Also the cough/throat clearing one can easily be interpreted as just an annoying cough so not as embarrassing!

My ds sometimes gets the eye blinking tic (which is just frequent, very strong blinking) along with a cough tic when his PANDAS flares up, and I think a lot on here have the blinking one. Your child's sounds like a more complex tic if the blinking/head nod and grimacing happens all at once.

FYI, another option to explore is see a neurologist if his only symptoms are tics. With my ds's first flare up of PANDAS (he had multiple symptoms)he had a coughing tic that took 5 months to stop, even though his other symptoms were subsiding more rapidly, and even then, it stopped because of an ADD drug we experimented with (for his ADD) called intuniv, it stopped the tic in a week, however we discontinued it after 2 weeks as it made my son too sleepy, but the tic never came back until his next flare-up of PANDAS 7 months later! It is a pleasant side effect of this drug (also called tenex or guanfacine) and maybe just a short trial may do the trick. just a thought!

My ds's blood and skin tests virtually matched up. The first obvious thing to do would be repeat the skin test as the histamine is the control, which failed, so maybe the vials were expired, defective etc, it is possible. Also, allergy testing is just a snapshot in time, they can change over time or even an adult can develop new allergies at any time.

Definitely No more shots for my PANDAS ds 8, who's currently in exacerbation! PANDAS is all about immune system over-reactivity so why risk it? I'm even mulling whether or not to continue vacinating my non-PANDAS daughter, since there's a strong sibling component! My ds's PANDAS Dr believes Dr Wakefield (British Dr who caused vaccine scare way back)will someday be vindicated as he's sniffing down the right track and subsequent research will show that!!! Better wait till more research is out there.

Sorry I can't help as I too am confused about titers! My ds 8's titers were elevated last summer when diagnosed (not terribly high). He responded well to antibiotics, we never checked titers when he was asymptomatic, to see what his baseline is. Now he's in exacerbation again and the titers are still elevated so my question is - what does this all mean? Does it mean he's a carrier? Is our goal to get the titers within normal? What if he's asymptomatic with elevated titers, should we worry about that? Hope someone else can chime in with answers.

Thanks guys, that's what I'll do!

Hi all, My ds 8, has just had his 1st exacerbation of PANDAS since diagnosed last July. We've bumped him up from prophylactic dose keflex to therapeutic dose. My question is how long generally should I keep him on the therapeutic dose? Until symptoms subside completely/ a few weeks/months etc??? My PANDAS Dr just gave me the script with several refills but was kinda vague as to how long! I'm sorta steering the ship here and am kinda winging it! Any help appreciated.

I'm just wondering all the exact same things myself! DS 8 was diagnosed a yr ago, responded well to antibiotics, recovered over several months to almost normal, then on prophylactic keflex, 3 times/week since then. Well his first flare-up of PANDAS since diagnosis was right before Spring break (he gets OCD, rages, sensory dysfunction off the charts and cough tic). Strep was rampant in the school, we upped his antibiotic to therapeutic dose, weathered the storm, went on Spring break and things settled down. PANDAS Dr said no need to swab throat since he's already on keflex, also absolutely no symptoms of sore throat, infection etc, nothing. Back after Spring break, everything OK, then BAM again, last week, tic back, rages etc, etc. Sure enough, the kid sitting next to him had strep last week! The letter always comes home too late for me to pull him from school! So now back to therapeutic dose for a couple more weeks. But all this leaves those same questions, what is the prophylactic dose of keflex really doing??? I think he's just reacting to the strep, not actually getting the infection, so does an antibiotic do anything for this??? But like you said, it's for sure correlated with strep, and very sudden, so without a doubt it's PANDAS in my mind!

I started using melatonin recently for my ds 8, and was amazed that it worked like a charm even at a very low dose! I use the drops, 1 drop = 100mcg, 3 to 4 drops an hour before bed does it. Even if you're weary of it, you could try it just for a short period of time to readjust his schedule and then stop?

Excellent, funny article!! My ds has two disorders not yet in the medical books! 1) Sensory processing disorder does not yet have an insurance code as it's not in the DSM IV, they're hoping to get it listed in the V edition, due out soon, after a decade plus of trying!!! Who knows how long it will take to get PANDAS listed? The older I get, sadly, the more I realise how little conventional medicine really knows, and I work in the medical industry! When Dr.s can't find a cause, it hurts their egos to say so, rather than explore more, or refer to other specialists!

I skimmed through the article she sent you, in fact I would just point out to the nurse the conclusions of the article - in the heading - it didn't say it was not a true disorder but actually warrents more research, just like rheumatic fever did in it's day, I bet she just read the first line mentioning "controversial" and then made her own presumptions! Use her own article to back YOU up!! Good luck!

Without a doubt,rages, aggression = major PANDAS symptoms!

Hi NMOM, my ds 8 was diagnosed last summer, like yours. He recovered to about 100% over several months with an initial 5 day steroid course and then antibiotics. However, just this past week he's started with a little of the old symptoms, two kids in his class have recently had strep (one sat next to him) and now he has a runny nose and cough. We're going to his PANDAS Dr tomorrow! So in a nutshell, this is how PANDAS goes. Just like in Saving Sammy, even now, when he gets strep, he gets OCD, NOT a sore throat! So just take heart that you now know this and can plan accordingly as opposed to countless other people out there who have no clue about PANDAS and who's kids deteriorate into total dysfunction and end up being drugged up on anti-psychotics, etc. You are way ahead of the game, so pat yourself on the back for your persistence so far and life will get easier as PANDAS gains more recognition. This is just a bleep in the radar, but I totally understand that sinking feeling in your tummy upon appearance of symptoms again, I had it last week! But we must soldier on, you can do it!

P.S. Did you get my last pm message?

I just read recently where you can mail order the cheek test, go to wwwmyceliac.com, no Dr signiture, you pay yourself (I think around $400) do the test yourself and mail it in. This tests for the genes for celiac, a negative test can rule out celiac definitely but a positive test just means you have the genes that predisposes you to celiac but don't necessarily have it. Only definitive way to diagnose is small intestine biopsy while taking gluten! Blood tests can screen but not 100% accutate.