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DS was 7 being evaluated by psychiatrist due to severe separation anxiety. 'what do you mean he won't stay at a birthday party or at a friends house without you? Aren't you the adult? Tell him he has to stay and then leave' unfortunately, We knew nothing about pandas at the time...so.... I left another appt with a professional that was suppose to help my son...Feeling like it was my fault just like I felt after leaving all the other appts with all the other professionals.

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Me: "I'm thinking this is really something big...I mean big like his brain...BIG."

Principal: "It's something." <with a bit of an eye roll>

(Conversation I had while I carried my kicking/screaming/struggling kindergartner out of the school after he'd refused to come in from recess...the principal carried my purse & his backpack. I'd been called to just come talk to him & get him inside but I wasn't about to leave him there for the rest of the day. He was calm when I got there out on the playground with the principal holding him. Was calm while I talked to him & held him. Agreed to go down the slide one more time & then we'd leave, but then FREAKED OUT again when I tried to leave with him. This was not the only time I'd been called to the school. We were undx'd at the time & hadn't heard of PANDAS...I was thinking tumor. He did end up with an anxiety dx, which was aggravated intensely by the school--I'm sure you can imagine. We eventually stopped punishing him at home because he was in so much trouble all the time at school. We homeschool now.)


"We just need to pray about it." (School nurse after I'd been called to the school for Jesse after a different meltdown. We were still undx'd.)


"It's not PANDAS because he's had negative strep tests." (Ex-Ped explaining why my son did not have PANDAS. I had finally found PANDAS on the Internet when I connected his Dec strep to the behavior change that began in Jan...this was May. We visited the dr EIGHT times from March-May to discuss behavior changes & to check for strep after exposures at school. She'd said the behavior change would have had to have happened within a month of strep...I was like EXACTLY!, but to her, it wasn't PANDAS.)


"We have PANDAS patients (twins) who get an eye twitch when exposed to strep, but it goes away as soon as they get antibiotics." (Ex-Ped explaining why my son didn't have PANDAS when I brought my asymptomatic son for a strep test because he'd had cough and then began a vocal tic, breathing tic, obsessions, compulsions, rages, tantrums, defiance...just no sore throat or fever. And of course, the swab was negative, BUT...the culture grew, & they called me on Sat to tell me he did have strep! Got abx at this visit by about breaking down & asking her to run titers. We hadn't seen her for 3 months because the summer went well after I got him out of school. He got sick at end of Aug & this was mid-Sept when the rages came back & I took him to dr. I should say I'm not knocking the kids who just get eye twitches with PANDAS tho'...not at all...just figure there's more to it than an eye twitch or there will be someday maybe.)


"His rapid strep today was negative. However we will send for an ASA and an anti D Nase testing to see if he has had a recent infection. I do not think this is a classic PANDAS presentation. Mom is just very frustrated with behavior right now....He looks pretty good to me here in the room today." (Ex-Ped in notes from the above visit before she knew he was positive for strep.)


"It's not PANDAS because his titers aren't high enough....His symptoms would have cleared within 24-hours of being on an antibiotic if it were PANDAS." (Ex-Ped per phone call when I called back to talk about the positive culture & PANDAS. Got referred to neurologist about an hour away who I learned doesn't really believe in PANDAS but apparently treats other patients she has with it(?). Was also told <again> to call a psychiatrist for SSRIs. Those particular symptoms did clear within about 5-6 days after starting meds (just not in 24-hours), but they were of course followed by a bunch of other symptoms & then 2 months of &$#%@ until we got IVIg in Chicago. In her notes about this call she wrote, "His strep actually did grow overnight so he has an acute infection, just not a past infection. Mom is again very upset about this. Is really wanting this to be PANDAS." Like anyone would WANT it to be PANDAS. And wouldn't a current strep infection trump a past strep infection for PANDAS?! Plus, the only reason she ran titers was because she didn't think he was positive for strep, but he WAS positive for strep! Geez.)


"Based on history, I do not suspect this to be PANDAS. I suspect that illness in general is a stressor that may result in exacerbations of anxiety and behavior issues, but I don't see any clear association with strep infections infections in particular." (Our local 2nd opinion dr wrote this in the notes from our visit. Ummm...isn't that kind of the defition of PANDAS?! Illness exacerbates anxiety & behavior issues! And my son DID have very clear associations with strep, but apparently, I was the only one who could see it. The dr also went on to say that she felt my son was autistic/PDD-NOS due to his speech delay <that he had when he was 2 & cleared totally with therapy/age...he was 6 at this visit> & a few other issues that we pretty much attribute to early onset PANDAS now, especially since he'd been screened 3 times by drs qualified to dx autism & they said NO autism. This was all after I gave her a 2-inch binder full of medical records & a spreadsheet that not only documented the 2 dx'd strep cases he'd had within the past 9 months & the resulting behavior changes, but I also included a spreadsheet that documented every illness & behavior changes we'd noticed since he was 2.5 and had his first ear infection. Obviously, we chose not to move our care to this practice, despite the fact that the dr told me she did treat other PANDAS patients. Really?! She also missed an ear infection that was dx'd at an Urgent Treatment. Grrrrrr.


"PANDAS isn't his expertise." (Receptionist at my family doctor's office told me this when I called to explain our situation after being dx'd with PANDAS, & we were trying get my son a steroid burst for symptom relief. She didn't let me talk to the nurse or dr myself, but relayed my story. As you know from above, we'd silently fired our pediatrician. Then I silently fired this doctor. From this dr, I got referred to the local university pediatrics...when I called they said call an immunologist...immunologist said to call a neurologist. We finally got meds from our ENT, who got to see our usually sweet boy in full "autistic-like" rage at his office the day we had our visit.)


WHEW! Luckily, when we got our dx, Dr. K said he was 95-100% sure it was PANDAS because there was nothing else to explain all the symptoms & did IVIg. DS is at 11 weeks post-IVIg & while he's had some blips, he is so much better than he was & we are still hopeful. :)

Edited by SarahJane
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My ds6 and ds7's pediatrician (no longer their pediatrician):


I've had two other patients with severe tics that completely went away with antibiotics, but I think it was just coincidental.


Now I have to say....that one is my favorite!!! Where is the dunce cap for this guy????


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  • 3 weeks later...

I know this has been posted for awhile, but I really need to vent!


ENT 1 - This cyst in your son's sinuses does not appear to be causing any problems.

Me (mom) - It isn't causing breathing problems, but my son has an auto-immune disorder and I need to determine if cyst is infected or not and we want it removed if it is.

ENT 1 - It is not infected

Me - How can you tell?

ENT 1 - He can breathe fine.

Me - Can you do a test?

ENT 1 - This is not necessary. Why do you think it is infected?

Me - I don't know that it is, but we have to rule it out.

ENT 1 - Why?

Me - Because he has an auto-immune disorder.

ENT 1 - What auto-immune disorder?

Me - It's a rare disorder called pandas.

ENT 1 - Confused look

Me - When kids have this disorder and they get sick or any type of infection the antibodies mistakenly attack the basal ganglia in their brain, which can cause sudden/severe ocd and tics

ENT 1 - ..... And what makes you think your son has this disorder?

Me - Because we saw a specialist in Chicago who diagnosed him with this.

ENT 1 - And how was he diagnosed?

Me - He was put on a course of steroids and his 90% of his OCD went away.

ENT 1 - I've never heard of such a thing. We'll keep an eye on the cyst. If he starts to have any symptoms, we can take another look. Oh, and be careful of those steroids mom, they are pretty dangerous!


ENT 2 - Looking at CT Scan - ah yes, I see the cyst here. And what exactly is the problem?

Me - Well, my son has an auto-immune disorder, etc., etc.

ENT 2 - Well, I would have to agree with ENT 1, if he doesn't have any breathing problems or any pain, then there is no need to remove.

I do see that his right nasal passage is swollen (cyst on right side); I will prescribe antibiotics for this and see him in two weeks.

Me - Great.

ENT 2, two weeks later - How are things?

Me - Things are so much better, since my son has been on antibiotics, everything is much better. Don't you think that means there is some type of infection?

ENT 2 - Why?

Me - Well... because the antibiotics made things better?

ENT 2 - Well, his right nasal passage is still swollen. Try using nasonex to see if this clears it up.

Me - But, what about the cyst? Can you please run a test to determine if it is infected?

ENT 2 - I can't just do that!

Me - Why not?

ENT 2 - Because the cyst is INSIDE his sinuses, I can't just go in there!

Me - So, how do I know if it's infected or not and whether or not it should be removed?

ENT 2 - Listen, you are going to have to see a pediatric ENT for this, I don't perform surgery on kids.

Me - Oh... Is ENT 1 a pediatric ENT? that is who we were originally referred to

ENT 2 - Oh no, there aren't any around here (we are in Lansing, MI (the state capitol)), you'll have to go to Detroit for that.

Me - Okay, can you please give me a recommendation?

ENT 2 - Sigh... You really want this looked into?

Me - Yes!!!

ENT 2 - Okay, I will have my secretary make a call to the children's hospital in Ann Arbor.

(Haven't seen ENT 3 yet...)

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I have been so depressed since Thursday after a comment my own MOTHER made. My son has trichotillomania but MAY have stopped pulling after IVIG (so hard to know for sure). I bought Latisse to apply on his brows to help them grow in faster (I haven't yet got approval from ped. to do this). I told my mom and she said, "I think you need to stop obsessing about all of this." First time in my adult life I ever told my mother (88 years old) to shut up. This damned disorder has caused so much damage over the years. Sigh....

Edited by Phasmid
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At the early onset of our ds pandas, when our ds refused to go to school and had sever anxiety my former best friend said,


"maybe he wouldn't have so much anxiety if you had made him attend birthday parties and participate in sports"


"maybe if you had been more of a parent instead of his friend he would dowhat he's told"


did I mention FORMER friend. she just shook her head like I was trying to find an excuse for my ds lack of social skills.

Must be nice to have a perfect life and exceptional children, clearly she's cornered the market on child rearing!!

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Me: the tics are still there, no better. separation anxiety may be a LITTLE better.

Dr.: oh, don't pay attention to the tics as an indicator....she's doing better...


Me :(in my HEAD..not out loud)---hmmm....and you know this from the 2 minutes she sat paralyzed with fear in your office...do you LIVE with her.....

Me : (again in my head, but wishing I'd said aloud): don't use tics as an indicator?? well, the sudden onset of about a dozen tics almost overnight was THE REASON we went beating down the pandas path! Pandas...sudden onset of tics and/OR ocd....what about the kids who ONLY have tics......

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I'm so glad I'm not the only one who hears these things!!


My all time favorite was from a "behavioral pediatrician" pre-PANDAS dx: First plan: "Leave her in her room until she agrees to put on her clothes. She needs to know who is the boss" After one week: "You might have to duct-tape her clothes on and make her go to school" (no I am NOT making this up - we did not do this of course). After two weeks following "the plan" and I tell her its not working she tells me "you obviously need to have some serious hand-holding and I'll have to unearth someone to help you with this". Needless to say we never saw her again...

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Somehow couldn't resist this post today.


Pediatrician: "I don't know that your son gets sick more often than other kids, it just maybe causes you a little more trouble when he does" (since when does a sick kid mean having to call the police to your house?)


Same Pediatrician on another visit: "So why are you here? If I don't give you antibiotics are you just going to go trolling for them somewhere else?"


Nurse at Pediatricians office after I called begging for help:"Wow - that sounds like you're describing PANDAS!" Me: "It IS PANDAS!!!!! Your office has known this for 7 years!!!"


Renowned PANDAS Expert: "PANDAS kids don't have good days. Just bad days and really bad days."



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From a woman Dr. in Jersey who CLAIMS to be a PANDAS expert...Don't see a correlation between rages and Pandas. Also did not seem to think that my 8 year old niece who began to exhibit the same exact symptoms as my daughter could have gotten it from her.(My daughter lived there for 9 months due to contamination fears in our home) Saved the best for last..Took my daughter to a childrens service center when she was 10 and had severe ocd symptoms that came on very quickly and I had no clue as to what was happening to her and after an hour meeting with the director of the center she told me ...there is nothing wrong with your daughter she is just trying to control you...2 weeks later she lived with my mom for 6 months because she was unable to function in our home.

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