sosudden

Oh thanks for your responses! Dr T ran a bunch of labs 2 weeks ago. 3 of the hand-foot-mouth were positive. Band 41 was positive. All other tbi were negative BUT are these the reliable tests re:lyme? I get confused about that!

9 year old daughter diagnosed PANDAS/PANS in January 2012. KNOW it wasn't her initial onset in retrospect BUT she became almost nonfunctional and homebound and just "gone" until~~~ IVIG Feb 16th and 17th 2012. Tics, writhing movements, raging, disappeared in days!!! She was able to talk to us again. Interact and smile! Other symptoms waxed and waned and disappeared. OCD got better but never gone. June 5th 1st MAJOR exacerbation after swimming at large public pool :-(. 2 days later HUGE yucky tonsils (rapid strep negative) and several fever blisters (fever never above 99.5. Ever.) Then something new happened ~~~ postural tachycardia!:-( She asked me to feel her heart and it was bounding out of her chest and shooting as high as 178!!! When layng down it would slowly get down to 120 but as soon as standing it would go way up again. She couldn't do anything. Awful. 2 ER visits and Cardiology consult = autoimmune respnse to ??? trigger caused postural tachycardia which according to cardiologist will probably happen again. ECHO was normal. Increased Zithromax to 500 a day and got awful tonsils out. Took about 2 more weeks and heart rate suddenly normal again ~~ 60-98 beats per minute. OCD still awful. BUT NOW, for the past 2 weeks, she has been having the feeling of not getting enough air, sudden and stabbing CHEST/RIB PAIN, and tingling/shooting pain through her arms and legs???!!!?? The tachycardia is creeping back. Labs from July show current Mycoplasma. ANA index 2.5 times normal at 58.7 so definite autoimmune, right? But what??? OCD is awful ~~~ fear of dying effecting EVERY MOMENT OF EVERY DAY :-( I read some older posts, one from tpotter sounded a bit similar.... Any one else have this with some answers? Next step is adding an immunologist I suppose?? Thanks! Laura

Thanks LLM! I tried 5 HTP with her and the 2nd night it made her loopy!! She stayed on it 3 more days then her postural tachycardia started and we stopped it. ERP!!! I have a question about that. How do we find a good therapist? Do they usually take insurance? (Not that it matters!) And how do we do ERP when her fears are so "magical" or "transformational"? (as we have learned to call them). And now her fear is surrounding her heart and lungs and that they will stop working. She has been seeing the same psycholigist since December which is when she had the sudden onset. Some days just going about her day is ERP as she can have fears/OCD about EVERYTHING???!!!

Daughter has been suffering from postural tachycardia - meaning when she stands up her heart rate shoots way up. Just what an anxious kid needs!! It has been going on since June 10th and has gotten as high as 178!!! We have seen cardiologist and a local neurologist and both think its autoimmune related, an area in the basal ganglia region that controls heart rate. Anyone else have this out there??

I know this question has probably been asked before. I have read mixed results and some very scary stories of psych meds making our PANDAS/PANS kids worse so I am very nervous to try anything I have been giving her valerian root extract once or twice a day and I think it helps a bit but not enough right now. This is the most non-stop OCD anxious she has been (am I going to die? Are my lungs going to stop working? Why does it feel like this or that?? and on and on)). She will stop in her tracks and clutch her chest. She will cry and look petrified for hours. One doctor mentioned resperidol. One doctor mentioned Luvox. Another doctor mentioned valium. None would actually prescribe though. Her psychiatrist appointment is not until Aug 29th. Thanks!

Oh that is great to hear!! Yay for your brave girl!!!

Hi! First and foremost I say follow your gut feeling!!! We haven't been on this path as long as some but all along the way - even with some family and supportive enough pediatrician - I have had to follow my gut feeling and push for what I think will help my awesome 9 year old daugher!! Briefly --- DD fell "off that cliff" October 2011. By December she was "GONE!" Psychologist kept saying "There HAS to be something medical going on!!??" My husband and I kept saying "This just can't be right??? 10 different psychiatric diagnoses within a matter of a few weeks??!!" A super-smart, normal, outgoing, strong, brave, confident 9 year old suddenly unable to walk normally, make eye contact, sit at a table, watch TV, play on the computer, take a shower, carry on a conversation, eat without rituals, GO TO SCHOOL??? Ticcing and twisting and standing on her head and writhing on the floor?? I will never forget January 24th 2012. I googled "OCD AND MOVEMENTS" and Saving Sammy popped up. I just had to read a few sentences and then watch the video of Sammy moving and I screamed - LITERALLY SCREAMED - and just knew this is what my DD had!! :( Luckily the very next day I had researched and printed off enough evidence and went straight to pediatrician. Had to hear "PANDAS is controversial" speech. BUT he prescribed 20 days of Keflex. This helped for a few minutes every day after day 11, but no real strides made. I wanted my daughter back!! Dr K's name kept popping up in my research. My daughter was so BAD and nonfunctioning I WANTED IVIG ASAP!!! For us, the phone consult was worth the $$!! Just to talk to someone that UNDERSTOOD!! After trying to explain this to anyone around us, well, it was wearing me down!! DD had IVIG Feb 16th & Feb 17th. BEST THING WE COULD HAVE DONE FOR HER!!! By the end of the 2nd infusion DD was back!!! She could make eye contact and talk to us!!! Beautiful!!! Within 2 days the writhing movements and headstanding was completely gone!!!! Daily migraines - gone!!! Huge dilated pupils back to normal most of the time within a week!!! For DD, it was the tics and movements that stopped first. Then the fearfull thoughts slowed way down. She became completely "present" and so able to fight the OCD bully like she had not before. She definatly had her saw-tooth pattern of healing. And she is till a work in progress fighting the OCD fearful thoughts. BUT, she was able to finish out the last 3 weeks of 4th grade with her class, going in just a bit later than the others. Fast-forward to June 5th...DD 1st real PANDAS flare since IVIG Scary and awful. Swam in public pool (mistake) all day and within hours of getting home -- BAM!!! GONE!! The pacing, the rage, the distant look, the anorexia, the detaching... 2 days after PANDAS symptoms appear - huge swollen tonsils with yellow spots, sore throat, tongue sores and fever blister!!! :( Upped anibiotic dosage...and called an ENT!!! Luckily we have a PPO and did not need a referral because Pediatrician was unwilling to write for one. Took about 2 weeks for DD to climb out of her flare. Got her to wondereful ENT who said "Well, this is a no-brainer!!! We need to get those tonsils out!!" Music to my ears!!! Just knew infection had to be hiding out somewhere!! SO today DD had tonsils and adenoids out! Dr said they were HUGE, CRYPTIC and FULL OF WHITE AND YELLOW INFECTION!!! EW!!! But YAY!!! Throw those things in the trash!!! Let the healing continue!! ((hugs)) to all those BRAVE PANDAS families out there!!! To be continued....

daughter had bounding and fast heartrate yesterday with dizziness and near passing out sitting down, calming down, drinking water --- nothing helped OH it was awful for her. took her to ED and her heart rate just lying there was 130's-158!!! You could just feel it bounding out of her chest and it lasted for about 6 hours Her blood pressure was fine, her urinalysis did not show dehydration as Dr was of course thinking... Now of course I know anxiety can increase heartrate.. This was different... And she had been having more and more episodes of this over the last week or so just out of the blue - rapid bounding pulse... SOOO anyone else have this on Zithromax? Cardiology consult July 12th for echocardiogram and probably an event monitor to wear for a week... Any other advice?

OK PEGLAM there just has to be something to this as well, another PANDAS-proof connection... My daughter before IVIg WOULD CONSTANTLY HAVE TO BE UPSIDE DOWN!!!??? She was always pushing on her eyes, closing her eyes, MIGRAINES... It was actually one of the things that got me saying "there is more to this than just sudden onset OCD and TICs!!!" Her psychologist saw that too, that there had to be something medical wrong). She was upside down or in painful yoga-type poses ALL DAY!! Even in the car she would climb in and stand on her head (of course had to wait for her to turn and sit right and buckle in which would take a while as we know with these kids;) AHHHH!!! She would be upside down every chance she got! She couldn't even sit at the kitchen table - she would have to slither along the floor or just lay on her back and stick her legs up in the air. Oh so crazy STUPID PANDAS!!! I just want to cry remembering how bad it was and that she had to suffer so badly :( IVIg put a stop to that(headstands)immediatly!!! The "dark circles" took longer to disappear, but not too much longer... They have come back tho since June 5th :( Before PANDAS Sara was a totally normal (though super high intelligence) 4th grader.... Had to do homebound school starting in January (although missed more than 20 days of school before that)... Was able to finish her last 3 weeks of 4th grade with her class, going in about 10:30am!!! SOOO slow steady improvement until June 5th...

Has anyone had a viral panel? What labs should I ask for? Just had EBV drawn Monday and waiting for results.... I just hate doing 1 lab draw at a time... Have no one local that is knowledgable or willing to learn... SOOO thankful for this forum and all those willing to share...

peglam, you mention distorted vision... just curious about this because my 9 year old daughter had issues before IVIg and then again starting bad about 2 weeks ago. This is how she describes it: Black circles that she can not see through, sometimes a few, sometimes everywhere!!! Dark shadowy type "figures" It was SOOO bad before IVIg you could just watch her physically startle, it was very distressing to her Is this from brain inflammation? My daughter is just in a bad spot right now and I am back to researching and making connections like crazy... Thanks for your thoughts!

FIXIT, I FEEL your steam too!!! So frustrating!! My 9y/0 daughter had to go 4 days without antibiotic (started vomiting and became green/yelow on augmentin) until I could get a doctor to call in Zithromax for her!!! :( No one local that I have found... Traveled to Chicago for IVIg with Dr K in February... Helped tremendously!!! Until June 5th :( Went swimming in big public pool and within hours of getting home she was BAD?!?! THEN 2 days later still bad, sore throat, huge fever blister, yellow spots all over her swollen red tonsils :( Took her to pediatrician who knows her diagnoses (did not diagnose her BUT I am keeping him in the loop whether he likes it or not;). Her rapid strep was negative - doctor refused to send off for culture or draw any labs?!??!! It was just treated as an "OH WELL.." grrrrrrr!!!!! OMG and her pupils were HUGE 2 nights ago And food fears (anorexia) coming back.... Time for my silent scream "AHHHHHHH!!!" OK. HUGS to all the amazing PANDAS parents and the BRAVEST kids in the world!!!

Topeka is not far from us! We live in the KC Metro area. I may see if she would like to email your DD17!! As I have said in previous posts - DD had IVIG on Feb 16th & 17th - many symptoms disappeared almost immediately, we did have the "flipping back the pages" (as Dr K calls it) over the past 3 months, but she continues to improve!! I would say her one true symptom that remains is the FEARFUL OCD THOUGHTS grrr!!! Ocassional rage-ish and racing thoughts, none of which was present prior to PANDAS, will appear but we/she is able to talk herself down. This crazy, weird disorder is just so strange!!! Soooo, maybe I will start with an email and maybe we could eventually get a few of us and kiddos together over the summer?

OK just wanted to say that my DD was on Augmentin for 3 months and her anorexia got SO bad as well as her color OMG she looked GREEN & YELLOW and PALE and just awful!! After narrowing down her supplements to nothing --- we figured out it was the Augmentin!! Switched her to Zithromax and no more of those AWFUL symptoms!!

Thank you LLM!!

OK central Texas... road trip!!!

Just curious if anyone would like to get together in the midwest??? My dd would benefit from a friend!!

WOW the dark bags under the eyes that sounds so familiar!! Hang in there mama!!! Your love will actually help save your precious kiddo!!!

Just needing a moment to vent I guess.... I am SO greatful for this forum --- you guys connected me with Dr K!! My DD had IVIG and is doing SO much better!! I just feel like I could make her ALL BETTER if there were enough research and standards and well.... AHHH SILENT SCREAM!!!!! I have 3 other kids and life has to continue for them. She IS doing better I just want 100%!!!! Any kind words appreciated!! I just feel so GUILTY sometimes... Am I doing enough??!! ((HUGS)) Laura

Hi! Just a shot in the dark BUT --- anyone from Kansas or Missouri that can recommend an ENT open to PANDAS? DR K believes daughter may be harboring infection somewhere possibly tonsils?? Daughter's general pediatrician basically said NO WAY to referring for a T&A!! So many people have stated that when tonsils were removed they were scarred, etc... Also found this blog.. I hadn't heard of this Doctor before... http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain/comments?page=2

Well put! Very similar doctor response here!

I can say my daughter's pupils were HUGE before IVIg and within the 1st week after they were smaller. I remember looking over at her in the car and gasping - I thought OMG her eyes are BROWN again!! We are 12 weeks out from IVIg and there have been a few times here and there where her pupils were dilated but never like before IVIg. I hope you see her baby blues again soon!!! My 9 y/o had IVIg on a thursday and friday. On that following Sunday she had the most fearful scary panic attack she had ever had - and she had had quite a few! I attributed it to the IVIg making her more "aware" of what was going on, if that makes sense??

My 9 y/o daughter was great at math, in the math club etc before struck with PANDAS. Then she suddenly could not be in the math club anymore! It was so strange she would just get SO anxious about numbers and math, etc. Right before she was at her absolute worst she would repeat things like "Give me a math problem! If I can't solve a math problem I am not smart anymore!" And I mean repeat and freak out!!! Then this changed to number phobia We could not say certain numbers or it would make her shriek and have her "bad thoughts". Once again I have to say these poor brave kids!!!! Each one of them are fighters and braver at this young age than most people EVER have to be!!!

OH reading your post makes me want to scream!! Why are doctor's so reluctant to treat our severly ill kids with WHATEVER works?! Be it antibiotics, PEX or IVIg???!! This is a devastating mental disorder that can be HELPED!! Not only that but why don't more doctor's want to take the lead - do more research - connect more dots??? It is just so frustrating and maddening!!! There have to be factors that are related - as to why some kids get it and some kids don't - and we need research done!! Like Genetics? Vaccines? Autoimmune response? Why the weakened BBB?? Yes I understand that some of these kids may be predisposed to OCD or anxiety as the case may be --- but WHY do they suddenly have personality changes and a slew of other psychiatric diagnoses piled on them ALL AT ONCE?? As for my daughter I could check off almost EVERY SINGLE SYMPTOM AND THEN SOME when it comes to describing PANDAS!!! Going from "normal" to what happened to her seems it could only be because of a "encephalatic brain injury!" I believe that is what Dr K told us too. Silent scream time "GRRRHHHHHHHHH!!!" Ok now back to fighting the fight for my girl!! Thank you to all the parents/family members that post on here and keep the ball rolling!!!

There are some good points on this topic. Before I knew 9 year old daughter had PANDAS one of the myriad of symptoms she presented with was bipolar-type behavior. She would cycle from manic (not happy, just manic) to depressed (so down she would make comments about not wanting to live) to manic to depressed - several times within a matter of hours!! Her psychologist did say that typically the cycling moods are not rapid like that. So my daughter went from happy independent 4th grader, loved school, class representative, QUEST program, special chorus, able to do homework anytime anywhere even with younger siblings running amuck, avid reader and amazing writer, question asker, "cruise director" as we like to call her TO suddenly severe ocd, tic disorder, major depression, "bipolar", raging, odd, running away, writhing movements, unable to physically sit still half the time and the other half of the time unable to move from her hiding spot on her chair, unable to walk rather had to hop and spin and fall and slither and do the splits and painfully twist her head and neck, panic level anxiety, phobias. Well, just had to vent! What brave amzing kids we have!! I am so grateful for this forum!!