[Warning: TIME article about kids & mental health]

There's a TIME article in the 11/1 issue that came in my mailbox today entitled: "Keeping Young Minds Healthy" by Jeffrey Kluger. NO mention of PANDAS at all. Actually makes the statement that "OCD-type behaviors before age 8 are often no cause for concern, since rituals are a normal part of growing up." It deals with depression, GAD, OCD, Bipolar Disorder, ADHD. Talks about cognitive therapy and drugs as treatment for those disorders. AND...let's get a drumroll please...an ABILIFY ad at the end of the section...ad mentions how it works with Lexapro, Zoloft, Prozac, Effexor XR, Paxil CR. Cherry on top.

 

WOW, how easy it would have been to add a box to the article with info about PANDAS/PITAND as serious condition(s) that result from strep/infections...how it manifests with many mental illness symptoms.

 

And IMHO this isn't a great article for the real conditions mentioned as they do occur as standalone issues. The article opens with an example of girl who was in 5th grade when she became confused about her sexual identity even tho' she knew she wasn't gay. She found out when she was 30 that it was a form of OCD & went into CBT for it & grieves the time lost to her condition. I'm sure you'll get your own copy & read it, so I won't take all the gems and share them. Dr. Oz even has an article in this Health Checkup section. WOW.

 

And there's been a campaign to get TIME to write a PANDAS article, right? I suspect they'll get some more letters. WOW.

[found a CHAPTER on pandas]

I checked that same book out from the library last week...didn't think to share it here. Sorry. I agree that it gives a good description. There are a few things that made me go "huh?" tho'...just like you. I checked one of my PANDAS docs lists & he's not on there.

 

It says that current estimations show that less than 1% of children who get strep throat could get PANDAS, but he also acknowledges that he "[does not] believe we have yet made the scientific connection to many of its psychological manifestations, which would send this number higher." With an estimated 4million babies born each year in this country (rough estimate from a few Google searches) then if even .005% (half a percent) could get it, that's 20,000 kids just in the US. Seems like a lot to me and I've never seen a figure like that before. What constitutes a "rare disorder"? He also mentions that the child must have precisely the right immune response genes on chromasome 6. (I'd never seen that either.)

 

I would love to be in a room full of people who understand PANDAS and the doctors and researchers and talk about all this stuff. That would be awesome. Imagine all our conspiracies converging. I would think the key to unlocking it would be in there somewhere.

[Oh, the crazy adventures of a P.A.N.D.A.S. kid...]

I hope that this post finds you feeling better on Saturday morning. {{{{{HUGS}}}}}

 

It sucks that you have to go thru this, but you are a very self-aware young lady who can at least recognize that all this sucks. Believe me, not everyone is so self-aware, & that's very likely part of the disconnect with your friends. That doesn't make it feel better when you're alone on a Fri night. And believe me I know that feeling. I was dateless in high school, friends did stuff without me, blah blah blah. I didn't date much in college either until I met my now husband...on a blind date...seriously! I'm sure there were many girls & boys sitting home last night...that doesn't lessen the fact that you were...just sayin' tho'.

 

I wonder what you will do in your life with all this amazing knowledge you have and on your quest for learning. I for one think it will be something GREAT! The world is definitely better for having YOU in it!

 

P.S. I checked out The Encyclopedia of Infectious Diseases from the library last week & was so excited when I found it on the shelf that I got all fluttery inside.

[Discontinuing service with dr]

Got the meds from ENT & with start with an a.m. dose in the morning. Appt was okay...ds threw a rage/tantrum over not getting to see me get my allergy shot. Running late & I ran in while ds & dh parked the car...didn't even occur to me to wait for ds tho' I know he loves to see me get the shots. Even asks them to give me more when I already get 2! ) AND I talked to a pediatrician who knew what PANDAS was but didn't have any patients but it was a good talk & we have an appt on Mon.

 

So...some good things happened today. And ds had a good day other than the rage/tantrum at the least opportune time, which is when they usually happen. Tho' I think it at least let them see what PANDAS can do. DS has always been well-behaved at that office.

 

Thanks everyone! Keep on truckin'!

[Need to vent - IEP meeting yesterday]

I'm sorry that happened. I had very high hopes for you as I read your previous posts. Sadly, this is what the IEP process is like for so many people! Our ds(6) did go to Early Start for a speech delay when he was 3 (had some minor dev delays overlapping because once they find something they keep on adding to the list, then dev delays trumped the speech delay--hindsight is 20/20 & I understand so much more now!). IEP meetings are a nightmare even when they go well. You may ask around and see if there are any advocates that can go to the next meeting with you. We never did that, but I can see how it would be very beneficial to have a 3rd party there with a pure mind on the best benefits. Maybe even a friend can go with you...you can usually bring whomever you like. Why not build up your side of the table the way they do theirs? LOL!

 

We withdrew ds from Early Start after some upsetting issues when OT began in the classroom. Looking back, he was probably in a mild exacerbation from about Nov - March of that year. (We suspect early onset.) I do wonder how PANDAS is handled in school since it's not always present. We were undx'd last year & it hit the 2nd half of the year in kindergarten & let's just say it wasn't handled very well at all. I would think that even if you have the dx with an IEP in place for the dreaded exacerbation, that once it hits, the IEP isn't followed very well because we're all creatures of habit & they would be used to the model student that used to sit at that desk. As parents, even we do the same thing. Behavior at school is a BIGGIE and standing in line and being quiet and sitting still and basically all other round peg in round hole behavior...in early grades behavior seems to be more important than actual learning. So...exacerbations shut down most of that good beharior for our kids. IEPs are hard even if it's an ever-present condition...the transiency of PANDAS has to make it so much more difficult. I'm homeschooling & will do Montessori if/when we go back to a classroom. (Were on waiting list for Montessori this year & is a hidden blessing we didn't get in yet.)

 

GOOD LUCK!

[PANDAS/PITAND exacerbations]

Yes, but I agree that it's likely normal for kids (& adults) to behave differently when stressed, tired, hungry, etc.... I don't know that ds acts any worse than others unless maybe age regression makes it seem worse (or is it immaturity...hard to know).

 

Remember the immune system is activated by inital exposure, so even if they're not "sick", it's hard to know when the immune system is fighting an invader. The antibodies can be there attacking the basal ganglia even tho' all the tests for infection are negative or maybe they just got a shot/vaccine or a virus is present. The immune system "powers up" so to speak to check the invader & goes thru the "files" to see how to fight it or if it even can in case it's a virus.

 

I'm gonna watch our Magic School Bus episode "Inside Ralphie" again...we have the book too. (I think we have almost all the MSB books!) It has a great explanation of the immune system. Gives me the idea to use MSB web resources when I go to explain this more to ds(6). He'll be able to relate to Ralphie for sure.

[Discontinuing service with dr]

Vickie - I was told to get steroids here. He will fax order for pre-IVIG blood test tho'. I don't know about after-care abx...am assuming he may give us a 'script for up there, but that I'd need a local one too. I do need just a regular dr for ds no matter if Dr. K does the meds.

 

Arial95 - I was actually thinking about it today & should add to my wishlist that the dr be willing to learn & work with me. There's gotta be someone who would be interested in the case. They'd be working with Dr. K at first (& as we have to consult)...can learn from one of the best. You probably already know this, but you're lucky to have a dr that involved. Wow.

 

Thanks everyone!

[Homeschooling with PANDAS/PITANDS (and possibly Lymes)]

I finally came to grips (after trying to force it) that ds wouldn't be able to GO to school in that state, so I needed to lighten up as far as having a schoolroom at home. We are in our first year of homeschooling...and all I can say is thank goodness we are.

[Just a little miffed]

Prayers to you & yours peglem. Thankful for those are doctors and do help patients (sick human beings) & their families.

 

I pulled the Hippocratic Oath off of Wikipedia. I've been curious about it lately & the whole "First, do no harm" thing. Here it is...read it and weep:

 

 

HIPPOCRATIC OATH (Modern Version)

 

I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

 

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

 

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

 

I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

 

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

 

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

 

I will prevent disease whenever I can, for prevention is preferable to cure.

 

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

 

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

[Discontinuing service with dr]

EmersonAilidh...you are pretty cool yourself! Courageous too! And hey...persistence got my ds the dx. Everybody gets knocked down...how quick are you gonna get up? (Love that song!) And the problem is that the PANDAS ABC's are more like the ZYX's...they want that square peg in the round hole for dx and if it doesn't fit exactly as stated in paragraph 3 then NO PANDAS FOR YOU!!! To be fair, not all but some...I guess.

 

When I got the immunologist/rheumatologist/allergist (yes, all 3 in 1 dr) referral from the pediatrician's office I'd called (who didn't even try to woo me)...I thought he might be kind of excited to get a PANDAS case. And I thought maybe I could get him to start doing IVIG locally. Sure it might not benefit me now but for the good of others that follow behind me. (I'm a dreamer...still not a hugger tho'.) Then the nurse called back aout 2 hours later & said he thought I should call a neurologist & gave me 2 names...not even the numbers. Grrrrr. I even already have copies of Saving Sammy to give to drs...maybe I should say "but wait...act now and you'll also receive this free book" at the end of my narrative. (I used to be in marketing...maybe I should do a flashy PowerPoint. Singing telegram in a PANDA costume? It's late & I've had little sleep due to ds's insomnia during exacerbation & it's showing.)

 

I am planning to ask the ENT for names but am not sure if they give referrals or are used being the recipient of a referral. (I am pretty sure my appt will be a go...am just p-a-r-a-n-o-i-d.) GOOD idea on the special needs group too...definitely can check that out and ask a few friends. I don't think there are any DAN drs, but I can check the university (tho' it was their peds unit I called today that played "pass the patient" with me). I've asked FB friends and have had a few suggestions/warnings that cancelled out each other...that was kinda funny. Plus, people don't understand this, so I think they're hesitant to get involved, OR the way the FB News Feed is now I'm lost between Mafia Wars and quiz results. <sigh>

 

That's why I love this group. I know I'm a big taker right now because I'm new...but I plan to help those who come behind me. (See above...I already was trying to build a state-of-the-art IVIG center!) I'd like to see at least one or two PANDAS-friendly doctors in each state/major city...maybe not for treatment yet (eventually that) but for support & follow up at least. Since we're such a "rare" disorder, that should be doable, right? Right? <Hello...hello...is this thing on?>

 

P.S. I'm in central KY. (GO CATS!)

 

P.P.S. whateverelseologist...wish I'd thought of that And I'm so entrenched to think of PANDAS as the enemy that I had to reread the "yes, the cute cuddly bears" thing a few times before I finally got it. Geez.

[Discontinuing service with dr]

Question: Did you have to "discontinue service"* with your pediatrician prior to getting your PANDAS dx thru an expert? If so, how did you then find a dr who would touch you with a 10-foot pole? Did you just settle for a 9-foot pole? Do any of you have tips/tricks/advice on this slippery slope?

 

I'm all for the get-rid-of-them attitude if they hinder and interviewing them beforehand...how much do you reveal tho'. I want someone who believes in PANDAS & who will follow post-IVIG protocol from Dr. K & provide routine care & be ds's regular dr. I don't think my wishlist is too long. That means I'm being open & honest when talking to their office vs. showing up as a new patient with a big SURPRISE. Today, I literally got told by a pediatrician's office to call an immunologist's office who then told me to call a neurologist's office. Ya know those latter will have crazy long waits...and these people knew I already had the dx & IVIG scheduled for next month. And even if I saw an immuno or neuro, I still need a pediatrician. Discontinued service with my own family doctor yesterday (was looking for band-aid fix until I find regular dr & see if I could get steroid burst thru him with ok from expert)...person who answered phone took info vs. letting me talk to nurse & then called back & told me it wasn't my dr's expertise (ROTFLMAO!) and to call a pediatrician (now why didn't I think of that...duh! ). I refuse to go back to the dr that acted like I was crazy to even mention PANDAS twice just so she could tell me NO twice...apparently their practice has PANDAS patients/twins who present with an eye tic/twitch when they get strep that goes away completely within 24-hours of an abx. Not judging that because someone's lightest day is someone else's darkest & maybe there's more to it but...HUH? My 2nd opinion dr also treated PANDAS patients...glad I went to a 3rd opinion/expert! If our ENT dumps me at our Fri appt, then I am up a creek without a paddle. I really like our ENT & go to him myself...crossing fingers even tho' the nurses haven't called me back for 3 days now. Hello Rock & Hello Hard Place...let me squeeze/lodge/wedge myself in between ya two.

 

* I tried using the euphamism "technical difficulties" to explain what happened with our pediatrician, but it didn't work. I sometimes think I'm the only one that gets my jokes.

[IEP Meeting_PANDAS Supports]

I'd also try to get things like math & handwriting deterioration/frequent urination/perfectionism/etc... that may occur. Showing a list of symptoms can help cover that. In public school last year, my son tended to have trouble during the afternoons...when they did handwriting & math. Perfectionism was also an issue. I can't say it was totally related to his undx'd PANDAS at the time, but it's suspicious to me even tho' his academics didn't suffer. I suspect there was at least one strep carrier in his class because the exacerbation lasted 3+ months with good days, bad days & horrible days. We didn't have an IEP but were heading to a 504 if we'd stayed in public...anxiety dx prior to recent PANDAS dx. Glad I'm homeschooling this year!

 

GOOD LUCK!

[Incredible thirst. Need to drink water]

I would say my ds probably did/does consume more water. I've noticed him getting drinks from the bathroom during this current exacerbation. Back in the spring, he would say he was really hungry too.

 

So the frequent urination symptom could be the very obvious byproduct of increased fluids? We did have that symptom. To go further, the adrenal glands are on top of the kidneys, so could they also be affecting the urge somehow due to their funtion in fight/flight/fear/stress response? My son started saying his "heart was pumpy" a lot when he was first being affected. He angered more easily, and it was more intense. I was actually researching adrenal tumors & brain tumors before I found PANDAS. Really need to take an anatomy class!

[New and Overwhelmed Please HELP!]

Depending on where you are in TN, Dr. K in Chicago might be closer. He'll do a phone consult. (I'm in central KY & am using him...IVIG next month for ds(6).) There are some up front costs for the consult, but they'll send you an invoice to submit to insurance. You do have to coordinate prescriptions & such with your own drs...hopefully, you have some that will work with you regarding the PANDAS. Good luck!

[Torticollis and Plagiocephaly]

DS had neither.

[Tonsillectomy?]

My ds(6) had adenoids out just before he turned 3 (left tonsils). Then he had tonsils out when he was almost 4.5. He was sick on & off from age 2.5 to 4.5...then he was mostly well (allergies, minor stuff) for 1.5 years. Then 1st dx'd strep in Dec '09 (exacerbation) & then strep again Sept '10 with ear infection right behind that (still in exacerbation)...now PANDAS is dx'd. IVIG scheduled for Nov. I will say that his behavior was horrible after the tonsillectomy...was likely a post-surgery exacerbation.

[Hmmmm!]

Okay...tetanus ONLY. I called Urgent Treatment. WHEW! BUT I wonder if exposure to that could opened up his immune system to the cough (that might have been just something going around) and then the strep that followed . Endless questions...no answers.

 

My son got OCD about digital clocks after 4-yr-old vaccines...had to cover with Post-It notes. There was DTap, IPV, MMR, & Varivax then...which is only 4, but I think they did 6 shots that day. And I'd had a brief thought not to do them since we'd just been talking about some recent behavior issues...and he'd been in the office for a URI 4 days before that well-visit. We got his tonsils out a few months later...had 1.5 good years after 2 years of illness. He did a quick peek at the digital clocks after his 2nd H1N1 shot in Dec '09 & I covered them up again...it passed. This was 2 weeks before strep dx...behaviors started a month later but we didn't find PANDAS for 3 months & then were told nope...not it. Grrrrrr. But we have the dx now...have treatment scheduled. Happy thoughts. Happy thoughts.

 

Very interesting read Priscilla! Thanks!

[Hmmmm!]

But how would they get their tetanus shots? Those are the ad that are running...foot about to hit a rusty nail. This is one reason to get a tetanus shot. There may be millions of reasons to make sure your tetanus vaccine also helps protect against whooping cough." Goes on with the convincing ad copy. These Tdap ads are running in mags now (not Dtap). (Parents Nov '10 is at least one of them.)

 

 

GAAAAAAAAAAA...I had a tetanus shot in August...a week before my son got sick. I'm gonna try to find out if it was isolated tetanus or this Tdap. OMIGOSH. My head is spinning!!!!!

[Are you in KY?]

Any Kentuckians out there? If so, PM me. Please. Want to compare notes...am in Central KY. THANK YOU!

[Flipping the pages back at 9 month's post IVIG?]

I'm so sorry. No words of advice (our 1st IVIG is in Nov). You have my best wishes, most positive thoughts, & prayers! Virtual HUGS!

[OT?]

My DS(6) usually has fun at OT. And insurance covers it. I guess I just wanted to be sure that I wasn't missing something that I should be doing. After we get IVIG, we'll see if he needs OT. (That's of course after I let him out of his human-sized hamster ball...I WILL get one of those after the treatment, right?) I am very hopeful that we'll see great strides & much improvement after IVIG...just like many of you. And if we need to revisit OT, then we will. But he threw a rage at one session based on them wanting him to do something one way when he wanted to do it another way, and it caused way more drama/stress than we needed. Luckily, the therapist knew that's not how he usually acts since it wasn't our 1st session. I am glad for everyone that sees progress with OT. It definitely serves a purpose in many cases!

[vision changes]

I'm quoting below from Wikipedia/Basal Ganglia. It makes sense to me that vision would/could be affected by PANDAS since the BG has a role in eye movements. I don't know if I have really seen that mentioned as a symptom (everything starts to run together). It does make me wonder how vision therapy works for ADHD & other learning issues if it is a brain thing. (Some of you know from an earlier post that I have questioned OT for PANDAS due to it being abrain thing.)

 

Eye movements

One of the most intensively studied functions of the BG is their role in controlling eye movements.[5] Eye movement is influenced by an extensive network of brain regions that converge on a midbrain area called the superior colliculus (SC). The SC is a layered structure whose layers form two-dimensional retinotopic maps of visual space. A "bump" of neural activity in the deep layers of the SC drives an eye movement directed toward the corresponding point in space.

 

The SC receives a strong inhibitory projection from the BG, originating in the substantia nigra pars reticulata (SNr).[5] Neurons in the SNr usually fire continuously at high rates, but at the onset of an eye movement they "pause", thereby releasing the SC from inhibition. Eye movements of all types are associated with "pausing" in the SNr; however, individual SNr neurons may be more strongly associated with some types of movements than others. Neurons in some parts of the caudate nucleus also show activity related to eye movements. Since the great majority of caudate cells fire at very low rates, this activity almost always shows up as an increase in firing rate. Thus, eye movements begin with activation in the caudate nucleus, which inhibits the SNr via the direct GABAergic projections, which in turn disinhibits the SC.

[OT?]

Vickie--could be right about the virus thing. So he went from strep to ear infection to a virus...poor thing. I think he has a sinus thing going on now too or maybe just allergies (and I'm leery about allergy meds). My dh & I are off our abx now, so we'll be picking stuff up & bringing it home (if I ever get to leave the house--must go to grocery store soon!). We were going to try to go to the ENT today, but now I just have an appt for next Fri.

 

We were about 2 months into his exacerbation from the Dec strep when we did the OT evaluation. Jesse does have some sensory issues (that we knew aboutauditory--was definite difference when he was 3 & now just 1 point into probable/more territory), but he had things mostly under control until this stuff hit. To me, some of it is how he's wired too, so you end up treating traits vs. symptoms. When he did OT before when he was little, he was only in for a few months because he was able to do everything fine & even then it was more to help with speech. No speech issues at all now. Now our ADHD questionnaire from the spring is interesting...no ADHD based on the previous 6 months. If I looked at him now & answered the questions, it would probably look like ADHD. I think it's important to get these issues taken care of early vs. letting them fester. I can point back to the ADHD questionnaire & say, he didn't have it 6 months ago, which helps prove the PANDAS case, IMO. If I'd not done anything back in the spring, and just went from this 2nd exacerbation from Sept strep, then I'd have a whole alphabet soup of dx's if I'd never found PANDAS...not that PANDAS isn't a bowlful. So maybe these BIG exacerbations are really a "gift" to get us to take action because if they were mild, maybe we'd not see them as much (and pass it off as growth spurts like we used to do).

[OT?]

We, like many of you probably, did an OT evaluation in the spring before we knew of PANDAS but were seeing school issues. (This was actually our 2nd OT eval as we did one when he was 3 & having issues in preschool--another reason I suspect early onset.) Our ds(6) didn't have any definite differences...just a few probables & usually like by 1 or a just a few points. Social/emotional was probably the biggest issue...shocker. I did have him in OT over the summer, but I still kinda thought that his issues were situational (school anxiety--was before PANDAS dx). I halted sessions last month while I investigated PANDAS. Now that I have the dx, I'm wondering if he even needs OT. His fine motor is good. He may be sensory seeking at times, but that's likely the PANDAS. They noted slight difference in his visual processing, but I read that the basal ganglia contols eye movement--so probably PANDAS, right? (Glad I didn't do the vision therapy exam because I'm sure we would have "needed" it.) Low frustration level...PANDAS. I know the social/emotional stuff is PANDAS. I halted everything because I didn't see a purpose in doing OT if we were dealing with brain issues, which we are. Does anyone out there feel OT serves a purpose with PANDAS? At least until you go thru treatment, I am not seeing the point. Maybe if you have residual issue or need to retrain the brain to forget certain learned patterns. But just if your kid has PANDAS, do you add OT? And I'm not saying anything bad about OT (think it's great!)...just not sure it serves a purpose if the issue is brain vs. true developmental. (And I get it that the brain stuff is kinda developmental, but you know what I mean. If they can't control it because their brain won't let them, then no amount of OT is gonna change that until the brain stops malfunctioning.)

 

Sorry if I seem snippy. Just haven't seen OT discussed here before & am not sure what I'm walking into with this question. I have best intentions...promise. (Plus my son threw up this morning, so woo hoo he likely has a virus or maybe residual effect of my dh having been around everyone who got flu shots at his office yesterday...dh did not get shot. At least he slept last night & will likely sleep all day since he's sick, which will mean probably no sleep tonight...circular.)

[Just need to vent!]

So you're a virtual kicker? I'm a virtual puncher. You handled the situation very well. Not sure I'd have been able to hold my tongue. I'm sure you've thought of 100s of things you shoulda said to her. The staff really should protect your privacy more and should say something to her about the nasty comments. Seriously...none of her business. Hugs to you!