JoyBop

Well I do see what you are saying, but we are all doing what we can medically for our kids. I don't really see the connection either. Our child does have diagnosis, and we are treating all of his symptoms and also undergoing huge immunological work ups to make certain we are doing all that we can medically. I'm very lucky to have a huge team of pandas specialists and am not being denied anything. The schools are mandated by law to accommodate any disability in school. Doctors have far more restrictions on them as they are bound by malpractice and limitations in proven treatments, insurance companies, ect. Somehow we are fortunate enough to be well cared for by doctors despite these lacks in knowledge and accepted literature on PANDAS. The school however has failed to actively deal with specific behaviors and inabilities that are directly affecting his ability to function in class and is also infringing upon all other students rights who are being distracted and disturbed by my child's performance in school. So while I understand your reference and frustration, it doesn't get them off the hook for their responsibility to uphold IDEA or my child's civil rights. It's not like we don't have a long list of medical diagnosis. It's not just adhd or a straightforward behavior problem. Its a culmination if a list of medical diagnosis that are prohibiting my child from accessing his education and we have the right to take action. I'm also not a hot head that goes in yelling and making accusations. I'm a very level headed and professional, yet firm parent. I am trying to support our teacher and am very careful not to accuse her of any shortfalls. It's not her fault she is left with this situation in addition to 20 other students to deal with without the help of another adult aside from one half hour block. It's not fair to anyone involved I'm only asking for an additional set of hands to be added to the classroom and I don't think its that unreasonable. I pay a hefty amount if tax dollars and feel no guilt in demanding that they accommodate my child The reason in so horrified is that we live in an affluent community and have always been so proud of our schools We have fabulous, dedicated teachers and supportive parents. I really did expect more than a deaf ear and a cold shoulder. we have diagnosis of anxiety, OCD, mood disorder, adhd, psycho-motor agitation, and severe depression I addition to auto-immune encephalitis of an unknown cause causing mental status changes. (yes this is a legitimate medical diagnosis). That ought to cover our bases from a medical standpoint.

Jag, I somehow missed your most recent response, not sure if we were typing at the sometime? Anyway, you do get where we are! I don't care wether they call it am IEP or 594 so long as they help him. His 504has items that are there in the event of a crisis in school, but so nothing to address his everyday needs to get through the day. Now we have lost almost half the school year. He has also missed tons if school which only compounds the situation. Many things were discussed at the 504 meeting but only those accommodation that were in a writing and suggested by our dr made the cut. I wasn't on my game enough to demand it got put in writing bc I wanted to give the teachers a chance to make it happened. It's not that is didn't trust them in the first place and I didn't want to be over demanding. It was hard enough just to get them to meet with me in the first place! Now that nothing has been done, I get emails on a daily basis from our teacher telling me what is going on in a class. She is making it quite clear that she can not handle this alone. I'm sure her hands are tied and she has obviously requested help but has been denied. Now she is giving me the information I need to go for the services myself. In all honesty, this I the case of an unreasonable psychologist at the school. The teachers all want to best for him and to be able to get through their classes and give other students a peacefully environment to get their work done. I hate to see him flounder for another couple if months. The more they blow it off, the more help he is going to need to get him back on track. I just think that's a crummy way to support kids in need.

My kiddo does have periods of depression but he is on long term abx so I can't really decipher the cause. In fact, I can't find a cause at all other than the PANDAS symptoms tend to cycle up and down in his case. I suppose If I suspected the abx were causing emotional symptoms I would ask my dr if we could try a different one. What is the bacteria you are treating for? Only certain a bacteria cause a doe off affect. Strep isn't one of them. There are a lot of people on this forum that are experts in that area and could help you find ways to support him if that were the case. I just wonder if the depression isn't just the result of a all of the symptoms of pandas. I know it depresses me!

Jfaringa it was my understanding that the functional behavioral assessment is to try to determine what is motivating the behavior and then to find out the best possible positive behavioral plan. Example: collect the data from different places throughout the school, form hypothesis as to the reward the child is getting from the behavior and then test that hypothesis to see how a plan could be implemented. our dr said its not to diagnose the condition. So if the child is exhibiting what appears to be attention seeking behavior. They would note what happens when the teacher responds, then note what happens when it is ignored if its a safe option. If the child continues the consistent behavior when ignored it can be assumed that the child has other reasons for the behavior and not the immediate reward of attention. Given that scenario, I think its worth the eval. If nothing else perhaps we will learn more about his behavior in school. Do I understand this correctly? Jag, I'm afraid you are not understanding our point. First I have to disagree with your idea that special Ed is reserved for those achieving two grade levels below. If that were true, shame in our country for waiting until it's too late!! I have an 11 year old with an iq over 140 and he was getting cs. He qualified as twice exceptional in our state and is on an IEP due to extreme executive function disability as his only issue. He is now getting all As in middle school as a result. What a horrible parent I would be if I let him lag two years below grade level. I am also not looking for a one on one aide. That would be an awful thing to make the child dependent on another person. I am simply asking for a an aide to placed in the classroom to help the teacher. How can she be expect to teach my child or any other child if my child is on the floor 20 times in a 45 minute period. I know many people who get services without a fight bc the people in charge of making these decisions have the right intent, not just preserving funds for those who are functioning two grade levels below. My child did not have any learning disabilities in the past but now has such severe executive function disability, psycho-motor agitation and hyperactivity that he is unable to do anything by himself. He is entitled to the same education as everyone else. If he needs to be put into smaller instruction classes or have an extra person on hand to help him stay with the class, then that is what our legal right is. My son has diagnosis from at least 7 doctors stating clearly that he has conditions that qualify him under our states law as "other health impairment" if not severely emotionally disturbed. They have documentation well beyond what belongs in his student file, yet the school continually asks for more. I refuse to give up in my child just to save the school a few fee bucks or hours of their precious time. I know their job is hard, and I do admire all of their that work with these kids. But I don't appreciate the gatekeeper mentality who would actually like to wait until my child is functioning at kindergarten level before offering him the help he is entitled to. Jag, please understand in not angry with you. I'm just stating my feelings, and as many of you know, it's a hot issue when your child is being blown off in school. Granted, they have proceeded with the testing, we just wanted to see a proactive approach to support our child in the meantime. Instead, our principal was unprofessional, didn't even answer the question, and when she did she was totally uninformed. If she had answered our request with any kind if knowledge or understanding of the situation, I would not be so angry.

So many great comments here I'm overwhelmed. I've already brought out psychiatrist is to it although the teacher hasn't returned any if her calls yet. She has been an advocate in schools but is not purely an advocate. I was thinking if having her handle it now and if things don't go well I can bring an advocate in after I refuse the plan if its insufficient. I know i need to call in the head if student services from the district. I honestly don't care what they think of me at all. I have 4 kids in this system and I intend to make some noise. It all stems from the psychologist. She does not have the kids interest at heart. It makes me sick. They asked if they could only do the executive functioning part of the test but I said no I want all the testing. The dr is also going to order functional behavioral assessment. I may have to bring in my own observer as well. What a mess. Not what I needed to be fighting right now. As if 2 kids with pandas isn't enough

You are right on. They don't have a clue AND and trying to dodge their responsibilities. There were many things spoken at the 504 that would have been helpful that assumed would have been carried through but never made it in the plan. Now they have to do an entire eval and give him services when this all could have been handled. So frustrating!

I don't think the strep infection would necessarily correlate wihna throat infection, but you should still check both. Also, you should ask for bloodwork looking for Lyme, mycoplasma or other signs of infection. My dd was 2.5 when she got PANDAS and is now almost 5 so I know how impossible the behaviors can be at that age. We did have a behavioralist work with us before we knew what we were dealing with. She did CBT but not for OCD specifically because we thought we were just dealing with anxiety and sensory issues. It's very hard to find an effective therapist for this age but if you can, its great to have some strategies for helping her to self regulate. You can on me for me ideas that worked with out little one. Nothing fixes them but you can help to minimize the environments that cause the anxieties when in a flare. Example; we could not take dd into any public place where there was even a small gathering of people bc she would freak. She needed lots of personal space and would attack anyone who intruded so being aware of that space and teaching her how to ask for it was helpful. There err many other techniques we applied the helped for a parenting perspective in maintaining some normalcy in the house, but again, nothing fixed her. It's all about giving the. The support they need to deal with it, and making boundaries and rules very clear to further reduce stress. Our dd had miraculous results from tonsillectomy. Her tonsils were very large and we did a sleep study bc our insurance only paid for tonsillectomy based on sleep apnea. Thank goodness she had it!! Mt son had the same thing done but it don't help his pandas one bit so go figure.

Q, how do you measure the short term memory? Is that why math is so so difficult for these kids? We tried ridlin for our son and it didn't do anything. Also clonidine and intunive. The latter helps some with hyperactivity and rages but not enough to justify the side effects for us. Now tapering off completely after being in maximal dose.

Chemar, We have 504 and it has done nothing. I was told at my teacher conference that the 504 isnt coming close to cutting it and he needs services. You are talking about a child that is not functioning in the classroom. We are way beyond accommodations at this point. Accommodation are things like additional time to complete projects, preferential seating, hand gestures, ect. He now needs smaller group instruction and constant attention from an adult. His report card said he is able to complete classroom assignments with direct one on one supervision from an adult. It takes the teacher 30 minutes to pack him up at the end of the day. They did have the chance to make the 504 work, but they blew it and now he is way behind in his studies. I have looked at that link many times. They are some great 504 accommodations, but again, do not begin to allow this kid to access the program. On top of everything else, his behaviors are now causing social problems that are creating a whole new host of misery. He feels he is loosing all his friends, everyone thinks he's annoying, and people are spreading nasty untrue rumors about him. Teachers are picking on him for all of the things they are supposed to be accommodating, hence the 504 is useless. Example, he was made to sit in time out in gym because he was chewing on his hands. Another time he was held in for recess (against his accommodations) because he was unable to finish his classwork. He never completes more than a line or two of his classwork, which is another reason he needs more help. Im not looking for a one on one aide. Im looking for a full time aide that follows the class through all areas of the school that knows his plan and unique issues and can assist him in work as well as help him process and deal with the new social situations he is finding himself in. At this point, I feel his civil rights as defined in section 504 of the Americans with disabilities act have been violated. Can you tell how upsetting this is to him, and to us? Has anyone else had this type of experience?

What can I say? I am horrified by how my school is handling all our situation. I continue to get emails from our teacher telling me that DS needs many, many reminders to accomplish even simple tasks such as hanging up his coat or opening up his binder. He is a very bright child, but is not able to pull himself together enough to access the program. Thankfully he doesnt have melt down or panic attacks in school, but he is unable to sit in his seat, follow simple directions, or follow along with the class independently. I have requested an IEP eval, and that is underway, they have until Feb 5 to get the testing done and meet with me. But in the meantime, I have requested an aide be placed in his classroom right away, until the formal plan is set. I do not want him to loose another 2-3 months of instruction in the meantime. Obviously, his teacher is begging for help! I have gotten ignored and put off since the beginning. They did agree to do the testing, but as far as my request, the school psychologist told sent me an email on Nov 21 that our request was being forwarded to the principal, who was copied on the email. He had just been placed in different math class that has 1 teacher per 4 students (the results have been instant and huge, which proves thats all he needs is more help) and that there is an aide in his ELA block. I have been waiting since Nov 21 to hear back from our new Principal who seems to be clueless and doesnt even answer emails. She finally responds on December 5, after a very strong message asking what the answer was, and says, "Oh, Im sorry, I thought Mrs. XXX already told you that there is already an aide in his class during all other times of the day other than math class." Are you kidding? Did she not even READ the messages? I told her, no, I heard there is an aide in ELA only. Are you saying there is already a full time aide in his classroom? She states she will have to check with the teacher on Monday, but she reread my previous email and saw that I was looking for more help in all places such as lunch and gym. She went on to say how inappropriate that would be and wondered what our therapist would have to say about that and how it might affect his independence. (No, I think we should just keep on punishing him for standing while he eats his lunch and getting yelled at for asking too many questions in gym!!) So I here I am, waiting to hear a legitimate response to how they are going to care for my child until testing is complete, and the principal just drops the ball completely and changes the subject after giving me completely false and judgmental information. I responded by saying that at this point, I feel this should be discussed in person with our doctor. I didnt even mention that the aide in ELA is the one who is writing nasty comments in my sons writing journal. Our therapist specifically called to discuss a positive feedback system for ALL assignments. The 504 states ALL staff that come into contact with him will be aware and follow this plan. NONE of this has happened!) I am outraged!! I thought we lived in such a wonderful town with the most supportive and fabulous school. I am beside myself and dont know what my next move is going to be. I havent even asked how much our psychiatrist is charging for these meetings, but at this point I dont even care. I need help!!!! I am beyond outraged. Sorry for the rant, but somehow I knew you guys would understand.

Rowingmom, thanks for the link. I looks like PAlalia fits the bill. I had no idea! Im shocked as he has never had tics before.

Keep in mind another neuro may not repeat the test for the reason of spinal fluid pressure. You'll want to consider that before choosing. Also. Could you ask the dr to still run the o band test? With lab work they sometimes hold onto the fluid or specimen and additional tests can be ordered after the fact. Is there another dr wou would be willing to call this one and insist?

Hmmm. Interesting. These just started happening in the past few days and I didn't ask him about them bc I didn't want to make a big deal about it or draw attention to them. He did it in the car yesterday, and while attempting to homework and maybe a few other times when he was in his own little world. Thanks for the input. He's never he ticks before. I didn't think he was in a flare as things are just starting to settle down even though it's still not easy. But we have in the past few weeks been weaning him of all meds excepts for abx. We've taken him off clonidine, Zoloft and he is only on intuniv for a couple more days.

My 8 year old has started chanting these words or sounds that sound Chinese over and over. I don't think they are real words. Sometimes he says three or four different sounds together and at other times it's just one. For example "me me meow, me me meow, me me meow" other times it's "me miou" He does not have any tics. He is also complaining that no one wants to befriend him at school because he make funny sounds and voices all the time. This is all new and seemingly strange Have you ever seem this?

Rowingmom, I know! But I can't bare to make him start over with yet another therapist. Its #5 already! Mostly because of therapists own lives they have had to stop seeing us (maternity leave, sick spouse, ect) but he is willing to do the work with her and expose himself to fears ect. But to get back to the topic on hand, my therapist says he does fabulous until I enter the room. Its true! I know! But she doesn't understand pandas and never will. I've been tested for strep and titres and I'm never positive. I'm just the lucky person who gets the pandas poo dumped on me 24/7!

First about the MRI the doctors at the PANDAS conference said that it takes a very specialized radiologist trained to measure the volume of the basal ganglia. You won't necessarily find inflammation by your average radiologist since visually there is almost no difference in a few increased percentages. They showed us a fee slides of normal brain and inflamed and they specifically said only those specifically trained to measure these increases would be able to find it. Its great however that there were no other abnormalities. Regarding spinal fluid pressure, was your child sedated? I've heard that the pressure is increased when they are sedated. I've also heard that the pressure can be much, much higher and still be normal. (I think I recall the normal range can now be up to 36 on average but threshold can be even higher, closer to adults pressure than previously expected) I would definitely pursue a second opinion and I would also want those o bands tested. Ask qannie about her experience with this as I believe he child was found to have the I band without the protein abnormality.

3b thanks for sharing that. It gives me hope! We have a therapist but she blames it all on Immature behavior and poor parenting. On that helps me so much !!

I can relate to everything you are saying. My 8 year old will have moments and hours even on a good day where he is having raging fits of anger and crying fits. The way I look at it, it's not the "event" that triggers these feelings, it's the obsessive thoughts and emotional lability that is causing it. What I mean is, one a good day, none of these things would bother him, so the way I see it, the event is not the trigger, the PANDAS is. I don't really understand it myself, but I have to come realize for him that these episodes are a clear symptom for him and will come and go as they please and have little to do with reality. My 4yo dd is slightly different. She is 100% most of the time but she will have sudden burst as well. They are almost like mini exorcist moments where her facial expression and demeanor changes all together. They are random as well, meaning she will react at moments that would never normally be a problem. But she. She was in the throws of chronic pandas attacks, I can tell you she flared anytime things didn't go her way. If she didn't get her first choice, if she had to wait a turn, if she was asked to do something, if someone didn't respond the way she wanted, she would to ballistic. But now that she is more in remission than not, they are random again. So I suppose now that I am putting it all out there, they both follow a similar pattern. When in an exacerbation they were especially emotionally Labile any moment they didn't get ex toy what they want. They are not normally spoiled brats but they both come off like tantruming two year olds at these times. When they are more in remission they still have a chronic baseline for moments of fits but they seem to be break through symptoms that occur out of the blue, last anywhere from 10-50 minutes, then disappear as though they never happened. I have found that Motrin helps tremendously. But since we found DS is anemic I'm worried that constant Motrin use for 6 months may have caused a bleed. Going for gi work up this month.

That is so amazing! I hope it continues. Do you think it was a combination of things ?

If you have no other option it might be worth going but clarify upfront how any months of abx he will give you at a time. We have one dr that writes for 1 year of refills. Other drs do 3 months and some do 6. They are all different.

I think it just means that there are many areas in the brain that are under functioning. You would see less uptake in the prefrontal part of the brain with someone who has adhd. The did studies where they would look at the brain again after taking a stimulant and it was working properly after. It sounds like there are more wide spread areas that are not functioning in your brain. How amazing that you had this done ! I hope you get to discuss the results soon.

Thats great if your insurance co covers it. With our plan we had to prove 5 or more positive cultures in a year or have obstructive sleep apnea. Titres were not accepted. Fortunately we had a sleep study and found that he had sleep apnea. Thank goodness for small miracles!!

I have two responses to that last post. One is video your child so you can show doctors ?or the school if warranted) the behaviors you are dealing with at home. Many teachers do realize that kids can appear different in different environments. I know for my kid, he would be devastated and embarrassed if he had a melt down in school or a panic attack over chewing gum, or a crying fit in the third grade. But at home those things are out of his control. The second thing I would say is something that Dr. Swedo said at the conference. She said that we Should tell our children that only 1% of their brain is affected by this disorder and the rest of their brain is perfectly magnificent. I also took this to mean that they are able to compensate for that 1% when they are motivated enough. For my kiddo the fear of embarrassment provides that motivation. This has been the single most difficult issue for me personally in dealing with pandas. Somehow I think it would be so much easier if he were an equal nightmare in school, even though I know that would just rip my heart out more.

Oh you have no idea how many times I have asked myself this question! How is it that he has all out temper tantrums at home but can totally hold it together in school? I went through many phases where I thought he was making this up and putting on a show just for me bc his behavior was so outrageous. Yet everyone else, while they saw he was anxious and a bit hyper, were spared his kicking, screaming and spitting. I've also gone through times of anger because I feel he is taking everything out on me. Most people that know us say its because he knows ill always love him and he can let it to around me. I'm not sure why, but there are many PANDAS kids who have this ability to suppress it all in certain environments. There was a mom who spoke at the pandas conference who told her strory. Her daughter was just like our kids. The teachers would tell her they wish every child was like her daughter but at home it was a living nightmare. I was so excited to hear that there was someone else like us that I reached out and called her! I have found out since that this is not at all uncommon in pandas kids. I know first hand how rotten it can make you feel. It took me a long time to realize he is not doing this "to me", even though sometimes it feels that way. I hope it helps just to knw you are not alone!

Just make sure you know in advance if your insurance company will pick up the bill with that diagnosis.