MomtoJake

It is possible that something is going on with his memory, but I haven't noticed anything. I am going to watch him really closely. He expressed to me this morning again that it is a feeling upon waking up in the morning and that he really can remember things, but it is a "feeling" that he won't be able to. So strange and I guess hard for a 6 year old to describe! I am certainly going to read about working memory issues and see if it applies to him. And as for school, unfortunately no help there. He goes to a Charter school that has no OT or PT at this point. That is another whole issue all together! He could get these services at the public school he is assigned to but it is a "D" rated school in a drug and crime riddled neighborhood. The Charter isn't great in terms of dealing with the PANS, but at least he is safe, he is learning and it is A rated. His teacher is very willing to learn and work with us at this point so we are lucky in that respect!

My Pandas/pans DS who is 6 told me today that when he wakes up every morning he "feels like I is not going to remember things except I know I do remember" He says it is not a fear, but a "feeling" that makes him feel "strange" He says he is not worried about not remembering he just gets a feeling that he is not going to remember things. Does anyone have any experience with something like this? We are in the middle of an moderate turned mild exacerbation right now due to a virus that just hangs on. Not really sure how to help him with this. We named his OCD so I did tell him that His OCD "Goofy face" is telling him to feel that way and he can just tell him to buzz off and stop. Hopefully that will help but other ideas welcome! It must be a very disconcerting feeling for him.

Yikes!! So sorry to hear that-- it really makes things that much more stressful- especially with the house torn apart! We are doing a long over do bathroom remodel right now that has our house in chaos. I am waiting to see who my DS first grade teacher will be so my stomach is in knots. I have requested a particular teacher but won't find out until this Friday who it is and school starts next Monday. My DS Kinder teacher last year said the one I have chosen is the ONLY one who will work. So I am right there with ya on the stress level. (Oh yeah as I type DS is chewing his shirt off, a sure sign of a flare ahead........) Good luck with everything -- hope it all goes as smoothly as it can!

His IgG was positive for parvovirus B19. It is 4.6 Negative is <0.91 and positive is >1.1. This is Fifth's disease and it was going around his school this spring, but he did not have it. Last year my husband started having debilitating joint pain and and swelling out of the blue. He was diagnosed with Parvovirus B19, but without the classic symptoms of Fifths. In other words, he had a severe auto-immune reaction to this so I would say that this is a significant finding in the blood work! In my husbands case it did take awhile to subside. I think I should have my DS tested- this just occurred to me since my DH issues were pre DS Pandas... hope someone more knowledgeable than me can weigh in!

Came across this on Youtube- a fabulous 4 part presentation on rage, meltdowns and Aggression in Tics and OCD by Dr. Tanya Murphy. Here is the link to Part 1. I am not done with the whole thing yet, but there it contains good information along with Power Point Slides. I had to pause frequently to read them. Lots of info that I did not know. After you watch part one, just go the upper left hand corner of the video box and it will lead you to part 2, 3 etc.

We stayed at the Ronald McDonald house right by Rothman Center (two houses are actually really close!) We had a vehicle, but when my husband joined us- he flew into Tampa and then took the super shuttle to the RMH. That was cheap ($50 or less) but might be difficult with a PANDAS kid- depending on the specific issues he has. it is close, though I would try to time it not in the evening for rush-hour. There is a big bridge from Tampa to St Pete's that I bet gets nasty in the evenings. The traffic IS horrendous past 4 pm. We drive to see Dr. M because we are in FL- We have completely changed how we do this due to the traffic and the fact that you get stuck in traffic with the sun directly in your eyes the whole time since you are heading directly west. Other times of day will be a breeze. I also highly recommend seeing Dr. M!

I would encourage you to go ahead and push for the 504. I did the same as you and had unofficial agreements to accommodations with my DS teacher last year in Kindergarten. He goes to a Charter School, which must abide by public school rules. Near the end of the school year I told his teacher that I would like an official 504 so that we could make all her her great accommodations "legal" because he would have a different teacher and no one can guarantee staying in the same school. She contacted the ESE coordinator and we met and made it happen. There does not have to be any testing, but team members (ESE coordintor, school psychologist etc) may want to observe your DS). I was told that I needed a medical diagnosis on doctor letterhead, which I had- Dr. M dx my DS with OCD (pandas related), transient tic disorder (pandas related) PDDNOS and ADHD. More than enough, lol! You just need to show that your child needs accommodations or a major school life activity (in our case, learning) will be impeded. Your child does not have to be failing, in fact my DS is great in academics. But his learning will be impaired if accommodations are not made. Does that make sense? PM me if you want more info. I will be more than happy to send you a copy of his 504. Edited to add list of accommodations: Seated next to a positive role model Cue student to stay on task Check comprehension of directions before beginning task Write assignments on the board, check for them in planner Reduce homework as needed Extra time for assignments and tests as needed Provide a wide variety of lesson presentations Arrange for breaks between assignments and as needed with a safe space or person Bathroom breaks as needed Teacher to explain sensitive topics that may induce OCD behaviors 1:1 after lesson (DS obsesses over topics like Stranger Danger (he is scared of being abducted) or like if you eat too many calories you will be "fat" (he is way too skinny already!) Notify parent of strep or other serious illness in the classroom Individualized Behavior Support Plan

Wait, My DS has this also! It's been unexplained for so long! C.R.A.Z.Y. How everything that has been unexplained for so long relates back to the PANDAS. I know, so crazy! And this one is scary right? I have video of my son presenting with this while his arms were doing strange movements and him calling out to me in the middle of it so scared of what was happening to him. At first I thought he was doing it on his own but then it became apparent that it was not. Several docs confirmed chorea and choreiform movements from this and several other videos. Thank you for all the replies. Can I just ask - when did you/do you see these movements? Are they there all the time or do just certain emotions or events seem to trigger them? Thanks. The only thing I still really see is the facial chorea, although I think it has turned into a tic, if that makes sense. With my DS ANYTHING can start for one reason and turn into a tic. I do see it more when things are stressful. At onset of PANDAS in September, they were constant until he started Augmentin. Hope that helps!

Wait, My DS has this also! It's been unexplained for so long! C.R.A.Z.Y. How everything that has been unexplained for so long relates back to the PANDAS. I know, so crazy! And this one is scary right? I have video of my son presenting with this while his arms were doing strange movements and him calling out to me in the middle of it so scared of what was happening to him. At first I thought he was doing it on his own but then it became apparent that it was not. Several docs confirmed chorea and choreiform movements from this and several other videos.

Had my 504 meeting today for my DS who is in charter school in Kindergarten- it went really well I think, I got all the accommodations I asked for. The school district had 2 compliance officers there so I despite a heads up from the teacher that the administration was unsure about "keeping" DS, the presence of the officers I guess had a real effect. The ESE coordinator however has issues- not sure what her problem is- whether it is intentional or whether she really just doesn't get it. I was explaining how we are working on the OCD by having DS name it (He decided on "Goofy Face" so that he can fight against what it "tells" him to do. I explained CBT and that we are beginning to take steps with DS to help him understand what is going on and that he can "talk back" to the OCD. She wrote in the conference notes: "J hears a voice in his head that tells him to do bad things" UMMMMM OK??????? Of course I had her change it, but really??? Then the teacher tried to get me to put him on Ritalin. (The teacher has been great though, I do have to say). I have explained things to them, shared articles etc. Is it really so hard to understand compared to other issues? Maybe it is. Sigh. Thanks for letting me vent. Here are the accommodations for those who may be interested. Seated next to a positive role model Cue student to stay on task Check comprehension of directions before beginning task Write assignments on the board, check for them in planner Reduce homework as needed Extra time for assignments and tests as needed Provide a wide variety of lesson presentations Arrange for breaks between assignments and as needed with a safe space or person Bathroom breaks as needed Teacher to explain sensitive topics that may induce OCD behaviors 1:1 after lesson (DS obsesses over topics like Stranger Danger (he is scared of being abducted) or like if you eat too many calories you will be "fat" (he is way too skinny already!) Notify parent of strep or other serious illness in the classroom Individualized Behavior Support Plan

For my son his facial chorea type movements presented as his mouth pulling down on one side as if he were having a stroke. He also presented with one arm flipping behind his back. His choreiform movements of the hands (when his arms were held out parallel to the floor) presented as if his hand were playing the piano. I hope these descriptions help!!

Too funny!!! And you are right, it could have been the less tame word for "poop" !

So sorry everything is so frustrating right now, hugs to you! Keep searching for that right pediatrician. I can tell you it is worth it. I am lucky that my son's ped was fabulous from day one and knew if was PANDAS before I mentioned it. But even if you can find one to get on board that doesn't know a lot, but is willing to learn, it is great not to have to fight for tests, swabs, cultures and ABX. . Those docs DO exist, however few and far between! If you haven't done the allergy testing I encourage you to do it. My pandas doc Dr. M. felt that my DS had a huge allergic component to his PANDAS and she was 100% correct. He came back allergic to practically everything! By avoiding as many allergens as we can now and taking OTC zyrtec and Flonase, and protecting for dust mites, his skin rashes are gone, he can breathe through his nose finally and we have had a huge decrease in PANDAS symptoms, even when other illness occurs which use to send him into a complete tailspin. I will eventually try transitioning him to supplements for the allergies so we can hopefully get off the meds, but for now it is nice to have some relief that comes relatively easily.

I "third" the no Nitros Oxide-- it can severely and suddenly deplete B-12 in susceptible individuals. (Methylation issues, etc). Good luck with everything, sounds like you are well covered with ABX!

Happy Mother's Day to you too Mary!!

Oh I am getting teary too!!! That is fabulous!

My DS who is 6, when he was at his worst would have these so bad that he would shudder and cry out. He called them "scary dreams" even though he was awake. He is now in what I cautiously call a remission from PANDAS but he still occasionally will tell me that he has some, although they do not seem of the intensity they were before. We have developed a system where I put my hand on his head and "take the dreams out" this seems to help him visualize fighting them and moving on. PM me anytime!

My DS had this build up after 4 mos of Augmentin- he had a recent cleaning and it came off very quickly. Dentist said not to worry. It looked so horrible though!

And BTW the Private Messages can be accessed in the upper right hand corner of your screen- took me awhile to find this out!

Hi Kathryn! I sent you a PM-- my son is also 6 and is also PDD-NOS with PANDAS.

My DS who is 6 (DX PANDAS/PANS Sept 2011) had this recently off and on for a month. It started because he thought he had mucous in his mouth and then it would just continue because he said he could not stop. We had to carry napkins everywhere. Thankfully one day it just stopped. It was kind of like it started out as an OCD thing and ended up a tic. Who knows with these kids sometimes! His pediatrician saw it in action and called it a complex motor tic. Thank goodness it is gone because it was really interfering with many things and causing issues at school.

I think for my DS this could be true-he is so bothered by dentist visits. He just went in for a cleaning this week. I did not want to do it, but being on ABX for 4 mos along with major sensory issues with toothbrushing made it really needed. His teeth were so discolored. I put him back on Augmentin just in case, but I explained PANDAS to the hygienist and dentist and provided them with the report from Dr. M and an article from IOCDF.. They were so careful and slow with him and really helped me to keep the stress level down. So far so good!!

I signed! I am in FL and we don't have a philosophical exemption, but our religious one seems to work pretty well, as long as one knows their rights. I have had several friends who have gone in to get it only to be "bullied" by the nurse, or asked by the nurse to name a specific religion etc and they walk out without it. Needless to say, I knew my rights and have mine!

20 well spent minutes, thanks!!!! I've been down the biomedical road with great results, but needed a fresh look at it now with PANDAS thrown into the mix.

I know for my DS who is 6, a part of his PANDAS/PANS was sudden onset ADHD. He has these types of behaviors you describe when he is in an exacerbation-- his teacher says goes from one extreme- active to the other-completely fatigued. He will also sometimes refuse work only to calm down and complete it later. Sometimes his teacher sends him to another class to work in a quiet area. His teachers are totally on board with his DX and we have had several team meetings to discuss strategies that help him when these things happen. They know the refusal comes from an OCD place or when he is overwhelmed, and not from being a "brat". While this behavior is not desirable they have made accomodations for it and use redirection/helping him to make a better choice. My DS says he has a hard time helping it and his brain won't leave him alone and let him work- it is frustrating for him. We work a lot at home on roleplaying what to do and I have a reward system for him when he shows positive behaviors in school. He is learning to "talk back" to his brain. I know there is a big age difference in our kids, but I hope this helps shed some light! My son's teacher can see that he really doesn't have ADHD in the classic sense when he is healthy.