NYCMom

We experienced this early on, shortly after diagnosis and starting abx. It was temporary btw.

I have only posted once or twice since finding this forum (lifesaver!). I am in constant lurking mode and agree that most comments or questions that i might have seem to be posted already, it is just a matter of reading reading reading to figure out what to do or gage where we are at. Our ds8 was dx July 2009 after sudden onset. I self diagnosed him using google (ah the dangers..) and our lovely ped's reply to my frantic report of his symtoms over the phone was 'classic PANDAS.' So needless to say we did not have the struggle that so many had for recognition of PANDAS and for that I am extremely grateful. Strep titre at the time of dx was 798, cunningham test put him in low pandas range, consistant with our observations. DS was given full dose abx and has been on prophylactic amox ever since. Going in for a fresh blood test today to pin down a new head shaking tic. He has had the classic sawtooth recovery, but this new tic is stronger than we've seen this past year and doc is worried abx are no longer working. Here is a not so brief symptom list: Pre sudden onset: eye blinking tic extreme food sensitivity - smells, textures gag reflex Post sudden onset: symmetrical tics (wrist circling, wrist rubbing, ear touching) hyperactivity (inability to stop moving, etc.) cognitive fog maniacal laughter, smiling regression behavior (baby talk, affectionate) nose picking, sniffing, finger licking anxiety (fear of elevators, nightmares) encopresis nose scrunching tic neck stretching tic irrationally emotional (e.g. - last night he was trash talking about his twin bothers (7yo) and I asked him to go to his room. found him crying in his bed a few minutes later and in a rage at himself saying he was such an awful person and repeating that he couldn't help himself from saying not so nice things about his brothers. absolutely heartbreaking.) Granted some of the above only occur in an exacerbation, of which we are obviously in one and we seem to cycle through tics, losing one for the next. We did allergy and lyme tests, both neg. Give probiotics when i remember, try to limit his sugar, refined foods, intake. In general he is happy, well adjusted, good friends, good student. Until this latest tic, it was hard for people to notice there was anything amiss with him. The biggest complaint from his teacher is 'transition issues' but then there are five other boys in his class that have gotten that complaint. I definietly feel like I have a different kid when he is in an exacerbation and it is hard to watch. I have been struggling to not define him that way and want to accept my child in whatever form I have him and not yearn for the 'normal' kid when i'm dealing with the PANDAS kid. This is my guilt. I can't thank everyone enough for sharing their stories and advice here, there is an amazing amount of strength and effort in this group that is inspiring. I know our experience can't hold a candle to what some of you are going through. I only hope that, with all this information and detailed documentation, families that face this in the future will have an easier time curing their own kids. -Deirdre

Vocal tic was our first sudden onset symptom. We called it his 'fake laugh' and it was a cross between a throat clearing 'hmmmph' and the quick sound you make when you laugh or cough with your mouth closed. At onset he did it most just as he was falling asleep.

Have to chime in here, both about memory loss and migraines. My mom is a migraine sufferer and had a similar attack one year - She had a complete memory wipe one day. I got a call from her sobbing about not remembering anything, day of the week, nothing. Though she knew me and had dialed my telephone number. I had a broken foot at the time and when I showed up at her house on crutches she freaked out because she didn't remember what had happened to me even though she had taken me to the hospital for my surgery. Over the next couple of hours we accompanied her on her errands - she was very insistant on keeping some appointments that she did remember - but every time we mentioned her memory loss, she didn't even remember that! It was that one time, just like yours and has never happened again. Docs said it was not uncommon, this sudden and temporary senility. I have never solved the mystery and I have to say it was as close to a panic attack as I've ever come, until PANDAS of course. As far as PANDAS, my ds8 had similar symptoms to what you all mention, though milder as he is a mild case in general. He used to ask 'what?' a lot, you could tell he was having processing issues. He also gets severe headaches in an exacerbation, but they disappear quickly.

NYCMom ~ How'd you know I saw the Dresden Dolls?! & thank you. It's nice to know that someone's benefiting from all this, haha. & I don't mean that sarcastically, either. I hope your little one is doing well. Had no idea you saw them, so jealous!!! I'm a google fanatic and wanted to check that I got your first name right, so googled it. Which got me to a site that showed your interests (can't remember which one). My kid is great in the scheme of things, thanks. I think we caught his PANDAS super quick, had sudden onset on a Saturday (vocal tic, hyper, really spaced out, maniacal laugh), had him in the drs office for blood tests that Monday. Subsequently learned that our ped is quite on the ball with PANDAS (he actually diagnosed over the phone), so he prescribed abx immediately. We are 1.5 yrs into prophylactics and have ups and downs, but def improving.

Emerson, I know a million parents have thanked you for sharing your experience with PANDAS in such an open, honest way, but I have to be the millionth and one. You have no idea how much it means to hear your point of view. You are incredibly articulate and smart and the strongest 15yo I have ever encountered! My ds8 has the same exact fear of his dad or myself dying, it comes and goes, but it's heartbreaking when it comes. Problem is he doesn't have the maturity to communicate his fears the way you can and it feels condescending to tell him 'it's just the strep honey.' But knowing that if I need to say something more, I can show him a post from this 15yo chick who's going through the same exact fears, feels way more powerful than a lot of mommy's 'everthing is going to be ok' rhetoric. You are amazing! (and btw - i loooove the dresden dolls, 'yes virginia' is one of my fav albums, you have great taste in music! imho)

Wow, talk about feeling like i'm not giving enough - we use yum yum dophilus, chewables, 2pd = 1billion. ds8 also drinks a lot of Lifeway Kefir which says 7-10bill per serving.

Hi Kam, My son(7) was diagnosed with PANDAS a year ago. He has and has had some very similar symptoms to yours. When he first started ticcing (btw he always had an on again/off again eye blinking tic) last year it was a throat sound, we called it his 'fake laugh' while I was trying to figure out what it was. Sounded like throat clearing or "hmmph' if his mouth was closed. Other 'above the neck' tics that have come and gone are grimacing with a chin jut that i call his 'stevie wonder' (must keep up the humour or i fall apart), lip sucking, various other mouth noises, a psycho looking grin and looking far to one side without moving his head. He has been on ammox every day since diagnosed, which is not an instant fix btw, it is a painfully slow improvement with cyclic exacerbations. We have experienced a lot of the symptoms talked about in this forum (adhd, rage, headaches, insomnia, encopresis, hyper-sensory (taste, touch), anxiety, etc) but to a lesser degree than most and so are not a candidate for IVIG. His mild syptoms have always puzzled me as his strep titer when first diagnosed was 700-800, according to our ped the highest he's ever seen. Our peds criteria for even entertaining the possibility of PANDAS (he's a firm believer) is that there must be a tic first (usually head region) and then he will confirm with an elevated strep titer. The child does not need to test pos for (and often doesn't have) strep. The post from peg about PANDAS kids being 'canaries' is dead on. I could tell my son's teacher there was strep in the class before she knew of it. He is very sensitive to being around carriers. We are not out of the woods yet, but I feel we are heading in the right direction. I hope this forum helps you, it was a great relief to me to confirm what I was observing. I was also through this forum able to get my son in Dr. Cunningham's much mentioned study and further confirm that he is in the PANDAS range and yes on the low side of average. Keep reading, keep fighting.