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I'm curious to hear how other children are doing in regards to ADHD like symptoms,(executive functioning) particularly in school. I'm talking about the kids who were not diagnosed with ADHD prior to onset of PANDAS.


Prior to PANDAS DS was a good student and never had any problems with focus or completing assignments. Since his dramatic onset of PANDAS last Christmas, regardless of whether he is in a flare or not, he is completely unable function in school. He is able to suppress or hide his OCD, anxiety, and rages outside the home but is not able to reign in his psycho-motor agitation and inability to focus.


I have heard VERY LITTLE from school. Report cards came home this week and I finally have some info. The teacher wrote "he does work well one on one with an adult to complete an assignment in class. Attending during a lesson can be challenging, however he is able to gather enough information to complete his work in class. He has had success with typing his work in class." So after a whole term they are finally telling me that he is unable to complete a classroom assignment independently. Now that I have been avoided for the whole first term he is loosing ground quickly. Not to mention he missed 13 out of 45 days of school.


From what I am hearing now, he is wandering around the classroom during instruction time. He doesnt seem to connect with the standard routine such as bringing his binder and homework into class in the morning. It takes 12 or more reminders just to get him to take his materials out of his back pack. I have no idea if this is all executive function or due to internal anxieties but this is his new baseline whether we are seeing craziness/flares at home or not.


Im looking for any insight any of you have on the matter. Im particularly interested in hearing if your kids with these types of issues have them all the time, or just in flare. Also, what do you have in place for the school to handle this? Im going to request an IEP. He has a 504 but at this point we are needing some educational supports.


Any thoughts? Sorry this is so long.

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My ds is young, going on eight, so their is the age factor to take into consideration when it comes to executive thinking. That being said, my Ds, when NOT in a flair ranges from High energy (but not hyper) to very calm, focused & emotionally regulated. When NOT in a flair, school does not present a problem for him. He is not the child that sits down does his work, and you barely know he is there, but he is very functional. When IN a flair, all goes down the tubes, and he looks like a typical ADHD child with behavioral problems. It appears that at this time, he is in some strange "fight or flight " mode. He is disorganized, cant focus, and agitated.


My ds had MAP testing done and HE was IN a flare...Interestingly, his scores dropped 40% points putting him in the lowest 30% in Math, and his reading scores were an equal disaster. My ds has been recovering from a Flare for about 3 weeks now. I was just informed that they are putting him in HIGHER level math. HA!!! His teachers words were, "Despite how much class time he missed and on the days that were so difficult for him that I did not think anything was registering, He is doing great!" So go figure.


So my conclusion is that potential is potential....when your son recovers he will catch up quickly....

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I totally agree that when this all passes he will catch right up because he is so bright. But this is going to be a long road and he doesnt seem to be functioning in school even when he is not in an active flare. You worded it perfectly! He is He is disorganized, cant focus, and agitated.

What is MAP testing? Did you know he was in a flare when he took them? We have avoided testing our ds during flares, but may consider doing so through a school eval to be able to access services. I would expect to see a dramatic decline as well, if he could even take the whole test.

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sorry - I don't have much time right now.


It takes 12 or more reminders just to get him to take his materials out of his back pack


I don't believe it should not take 12 or more reminders to get anyone to do anything -- i'd see those as clues that your son needs help to function in that environment.


which, actually, may or may not be done with a 504. one of the first thing I would recommend is seeing if you can get a good understanding of if the teacher, school personnel are on the same page with you that these are issues that indicate your son's health decline, or if they are thinking these are issues of his choosing to behave like this. depending on your relationship with the school, I would think that would be your first step in determining evaluations of how your child is actually doing.


psycho-motor agitation and inability to focus.

these are issues that need strategies in particular environments -- specifically classrooms. do you currently have accommodations in place working with these?


a 504 will provide accommodations - which depending on the circumstances, can lead to remediation - but does not actually provide for remediation itself. an IEP works with helping learn skills that are lacking.


good luck.

Edited by smartyjones
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Thanks Smarty. IT sounds like you have BTDT.


It took us a long time to finally get into the school and make them understand the situation. We had tons of notes from specialists and they know that its serious and they have not tried to refute it. Our relationship with the school psychologist is not pleasant although we have a great relationship with the classroom teacher. He is in a new school and they needed some time to get to know him and see how he functions. The 504 is fairly extensive but is mostly to protect him from being singled out and "yelled at" as that causes embarrassment, depression, and obsessions of self harm. He is supposed to have things like extra time, be able to sit by himself or with limited visability, lessened homework, ect. He is not to be penalized for missed school work and his progress is to be monitored especially after multiple absences. Which brings us to where we are now. Hes missed many days and he just isnt functioning. He spends all his mental energy suppressing his OCD and anxiety to the point that he is somewhere in outer space.


This poor teacher is amazing, but has a handful of very challenging children and has no aide or assistant. That is what has to change! ITs the other teachers that are making his life by circling everything in red pen and pointing out every flaw in his work further making him feel like a failure. Big zeros on the top of every page and many question marks and exclamation marks aren't helping the situation. The expectation is that when he is well it will all come bounding back but we have to encourage him to do the best he can and not penalize him for errors or incomplete work. At this point I am feeling like more needs to be done because this just isnt going well.


I have my 15 minute conference with his teacher the Wed and will be requesting an IEP evaluation at that time.


Im just scratching my head because it seems like so many of these kids function so well in school in between flares and my kiddo seems to get worse and worse.

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Our son was a great student, excelled at Math and very organized (not OCD way) before his severe flare two years ago. He deteriated in all areas. Antibiotics, Antivirals and diet helped with all behaviors and his blood work showed a drop in titers yet he continued to "spin" in confusion. Our Dr then put him on a SSRI because it brings more blood flow into the frontal lobes of the brain that have been affected. I have read that some on this forum have had luck with 5HTP to naturally do the same thing. I read a post here not to try while on a SSRI so I can't say if it helps. Anybody else have luck?


We also are on an ADHD medication Intuniv that has helped a lot. He improved quickly in every area but Math. We are taking Algebra over since he had a D and we can't discern if its from missed material during a flare or difficulty in concepts. I hate taking the medication but his confidence has started to come back as he now is getting A's and B's.


How is his diet? I posted an interview available today with a MIT Dr who explains how Glyphosphate in GMO food creates ammonia and formaldehyde in the brain and blood stream disrupting methylation.


Hang in there.

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Thanks 3bmom. Diet is somewhere I could stand to improve. I will have to look for that interview you mentioned. We havent looked into methylation yet.


We have tried many meds. He is on Intunive and low dose of Zoloft in addition to Keflex, Omega 3 and Vitamin D. He was also on Clonidine but when he was hospitalized for his T&A they discovered his heart rate dropped too low so we took that away until we get the results of the 24 hr heart monitor. We also lowered his dose of Intunive to be safe. It doesnt help him much at all but the higher dose makes him very sleepy. We are supposed to be trialing him on Abilify starting over Thanksgiving but I was still hopeful that something miraculous was going to happen post t&a like my dd experienced.


None of the meds have helped at all and I honestly question if they are even worth it. My feeling has always been, if I can help him with some of his symptoms and make his life better while we are working on fixing the problem, why not? Of course the meds can end up causing their own problems. AT least I was willing to give it a try. Hes on very little at the moment.


Im guessing his lack of focus is also coming from all of his fears of what others are perceiving him as. He worries about making mistakes, breaking rules, getting trouble, looking "bad", saying bad words, ect. The school doesn't "see" these things but I think they are manifesting in ways that are preventing him from accessing the information.


I am wondering if any other kids go back to their baseline work habits/abilities after a flare has passed. I am wondering why my kid doesnt snap back into the program when all seems well...

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Things that jumped out at me with your last post. You mentioned that the psyche meds have never really helped much....So why stay on them? I only ask for two reasons...it seems that from what I have read, Psyche meds don't seem to help Pandas kids much, or consistently, correct me if I am wrong. Also, the main reason I have stayed away from them for my ds is because of my personal experience....About 25 years ago, I had a clinical depression. I was put on Imipramine, which I believe is an SSRI. What I remember was that while it did lift my depression, I had big mood swings with it. Nor did it do anything help my self-esteem, which took quite a hit with all that accompanies a clinical depression...anxiety, paranoia, lack of self confidence. I especially remember being so self conscious about how others were perceiving me, and that was just AWFUL. It paralyzed me, and it steals one's ability to be spontaneous...never mind the brain jam that one experiences when all you can think about it why do I feel so awful, and what are people thinking...it just gets in the way....I was out of school when I was dealing with this, I can't imagine that.


I believe in meds. I truly do. But I do know that they come with a price it seems, and while meds are good, they are not a cure all. That was at least my personal experience.


So sorry for your Ds. I will add him to my prayers....

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I have a dd11 that has big issues with rage, clothing sensitivities, etc. She has lost so much executive e functioning and lost math ability but does not appear ADHD In the traditional sense. She just can no longer function academically. She spent 4 years on psych meds ---but only one ssri (which was horrible). She had been off of all psych meds since feb, but within the past week or so we put her back on a very low dose of abilify to take the edge off more than Advil. Advil would calm her rage but did nothing else. We are hoping to have Ivig before the end of the year.


I am telling this because her brother has been showing the same symptoms, lots of asymptomatic strep, out of control anger, etc. but a biggie for him is more traditional looking ADHD (which I know is pandas). After everything we have been through (and are still going through with his sister). I am ready to try my precious boy on abilify. Not an ssri.


Abilify is a heavy psych drug, too, but not an ssri, and the only reason that we can do it is because of quality of life issues---things have settled a little with my daughter on it, but he is also making the family situation very difficult. So I guess I'm telling all of this to say that I think when things are coming unglued in whatever capacity, it can smooth the way some, but it won't fix it, and without treatment, the psych med dose will probably have to be increased over time til you are the top dose--at least that was our experience.


Good luck, and keep us posted!

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Qannie, I do understand what you are saying. He is in the intunive because it does time him down a notch. We aren't seeing the sleepiness in the 2mf and things are far worse without. The Zoloft at super low dose takes the edge off but he couldn't handle the average dose at all. The point being, we try and if it doesn't work it makes things worse we stop, but we are willing to continue to try until we have tried It all. In the meantime getting him other medical options have been slow coming. Immunology appointment coming this week and hoping something will change.


Tufour it sounds like we are experiencing the same thing. My son is like both of your combined. I've been holding off in the abilify but everyone u speak to seems to think it could be helpful. He will only be starting on 1mg, I just wanted to wait and see his new baseline post t and a which is not a very good picture, by the way. Its nice to hear you are having good luck on it. I was told to leave the low dose Zoloft to see if the abilify would allow it to do its job better. We will see.


My son no longer functions in the classroom it academically although he bounces around the room happily, which is better than what we saw last year which was depression and self hatred. I'll take this over that any day but its time the school acts and stops pacifying us.

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I'm curious to hear how other children are doing in regards to ADHD like symptoms,(executive functioning) particularly in school. I'm talking about the kids who were not diagnosed with ADHD prior to onset of PANDAS.



Before treatment DD12's executive function was nonexistant. And I couldn't attribute this simply to age, because her peers were functioning at a much higher level. She was diagnosed with ADHD at 3yo, before PANS symptoms started, but I think she has been dealing with her infections for a long time, probably since birth, and that either reinfection or the MMR booster sent her over the PANS edge.


Before and during treatment (started age 10) I had to dress her, brush her teeth, comb her hair, pack her backpack; essentially every task that was required to get her out the door in the morning. Or I could remind her 5 times to do something and it would remain undone. Only if I worked along with her was she able to accomplish anything; homework, unfinished school work (her teacher allowed her to bring it home), making her bed, having a bath, practicing piano, even eating. EVERYTHING. She would bring her lunch home uneaten because she forgot to eat during lunch break.


Her ability to concentrate was essentially near zero. Her IEP stipulated that she be removed from class during tests (because the environment was too distracting) and that someone needed to be with her to constantly redirect back to her work. For in-class work she had ear-plugs because her sensitivity to sound was actually painful, and she had to work behind a screen so that the movements of the other kids would not distract her.


I had to go to the school twice a week to organize her books/papers/desk because she was so disorganized, and to be updated by the teachers on what she was supposed to be learning so I could teach her at home - one on one.


It was horrible and made me somewhat crazy, but I did it. We didn't use psychoactives.


The change since she has come out the other side of treatment has been nothing short of AMAZING. Her executive function is now the best in our family. She does most everything without being prompted. Homework, piano, dressing, bedmaking, toothbrushing, bringing in laundry, making salad and setting the table for dinner. She is able to work through most distractions; radio playing, people talking, with no comment.


She still has her accomodations for class work/testing but the teacher is not using them. She is able to grasp concepts in the classroom that previously I would have had to explain to her at home.


I found that during herxing her concentration/executive function would decline even further, but about 1.5 years into treatment things started to turn around.


DD12's problems were so atypical that her school peers were eventually not able to accept her, even though function had improved to essentially normal. We have put her in a new school this year and she is doing wonderfully.

Edited by rowingmom
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joybop -- i'm sorry i'm not that familiar with your ds's story -- how old is he? he had sudden onset about a year ago? what area are you in?


some thoughts I have

  • Im just scratching my head because it seems like so many of these kids function so well in school in between flares and my kiddo seems to get worse and worse. I don't know that I think this is true, especially when getting a kid stabilized. my ds had sudden onset at age 4.5; 5 years ago. I believe he was sick -- brain under attack -- until about age 7. so - yes, he had flares and better times, but I don't think he was in a state of remission until 3 years!! so, he had various levels of functioning but I would not describe it as "so well". it sounds to me that you are very much still trying to get your ds stabilized - yes? I would not expect him to be functioning well if you don't think he is stabilized.
  • do you have outside help from an advocate or from a psych or educational provider?
  • my advice for your meeting Wednesday is to go in prepared with everything in writing that you need to request an IEP eval, but use the time to listen to what the teacher has to say about her and others perspectives on what is going on in the classroom. I would say to not really talk so much about what you see and think. this will give you much more power to know what you need to do.
  • when you request an IEP referral, state you are requesting information in the form of a actual report on his progress -- the actual skills he is displaying or not displaying-- you want numbers and percentages -- you need to know information like, " student is able to independently put his name on paper and date on top of each assignment 3 out of 5 times. he requires 1 prompt on 2 out of 5 trials. he waits to be called on 2 out of 5 trials. he requires 3 prompts 4 out of 5 trials to independently turn in his homework." you want information that can be marked on a tally sheet -- you want it all specifically spelled out -- what is the visual or verbal cue that is given; these are the differences btwn IEP and 504 -- 504 allows for leniency in handing in homework; IEP states an objective toward learning to hand in homework. a 504 is about ensuring equal access to services -- a ramp allows a person in a wheelchair to get into the building; an IEP is about remediating skills -- services to help a person learn to better use his legs -- you need to speak in their terms if you think your son needs help learning skills
  • take his report card and past homework and think about what you find troubling -- turn that into statements that you need information about his progress to justify why you are requesting an IEP referral -- have all this is writing to turn in -- don't talk about it, use that time to ask the teacher to discuss his progress as she sees it
  • do you know how your school uses functional behavioral assessments? it may be that they could be resistant to an IEP because they do not think it is a learning issue that needs to have objectives. in that case, it may be helpful to have similar specific data about his behavior. depending on your team, they may get hung up here in semantics. i'd say try to understand how your team sees this. if this is what you need, you again need specific measurable data about his progress in his behavior in the classroom. try not to get hung up on the use of the word behavior as negative -- use it to your advantage as behavior that is serving a function for him and needs help to best function in the classroom.
  • do you have a diagnosis letter? it doesn't need to say much -- ours just say the conditions and a couple other lines i'll pm you.

good luck!!

Edited by smartyjones
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a couple other thoughts --

  • younger ds is sensitive to vitamin D, although tests low in it -- still trying to figure it out -- if he has too much, above 600 iu, he falls back into old behaviors -- a weird competition, needing to be just like older brother; and very focused on individual acts -- such as reading or a craft -- I mean very focused
  • older ds has a sensitivity to probiotics -- either high level or the specific type -- some type of d-lactate scenario -- extremely hard time cooperating or focusing to accomplish tasks, and quite introverted

I am completely sure these supplements caused difficult behaviors in my kids -- not sure why. and for the D, what to do about it but the behaviors resolved when we stopped/reduced the supplement. younger ds also has a paradoxical reaction to GABA, which is quite unusual.


not sure what any of that means for you, just sharing our experience.

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