JoyBop

Wow, two stories of hope and healing on the horizon. Thank goodness for these special doctors who are willing to listen and help!

Being in the thick of it I can really appreciate your celebration of this moment of success. Thanks for sharing it with us.....I know I needed to hear that someone sees the light at the end of the tunnel for all of us.

Omg I am overjoyed for you! You have shown us all that sometimes you have to take a leap of faith. I am hopeful that this will be a new beginning for you and your family. Take care if yourself and get some rest. We are all so happy for you!!!

Good point 3b. Our psychiatrist works with the district and for the district at times and she is well respected IE they won't mess with her bc they want to look good in her eyes. I may not want to shell out the cash for her to be present but she is willing to submit and plan and make phone calls for free. She's not your typical psych and does weekly CBT and educational plans with her patients so we are very lucky. Given the situation we have already counseled them on what pandas is I will leave well enough alone and make them cater to his needs ongoing. Why should I give them a break when they have shown me they can't be trusted to take care of things. Sorry for the rant, I'm just so frustrated and this is hard enough!

Thanks to all for sharing your IEP experience. Keep them coming! LLM Im trying to understand the basics of dopamine and receptors, what they do, how medications work, ect. I want to make a better informed decision about meds.

Oh the common core curriculum is ridiculous! Dont even get me started! We tested our sons IQ back when this all reared its ugly head and his IQ was on the low side of gifted but his processing speed was slow. It will be interesting to see if/how much of a decline there has been. I have faith that this will pass and he will regain his loss as soon as he can. I feel like Im damned if I do and damned if I dont include an the fact that his need for services may be intermittent. The school has proven to me that they are not acting in his best interest. I am however, making progress in getting him those service. Just trying to figure out the best way to carry that out. By the way LLM, would you kindly post the link about recepters and dopamine again?

I have already received so much help and support from you all on this topic, so thank you! Teacher conference was interesting! To hear that DS is "falling on the floor" and out of his seat at least 20 times or more in any given 45 minutes was shocking! The teacher adores him and sees that hes not a trouble make. (He really is a cutie!) But he is unable to access the program. I have a complicated question I was hoping someone who has had experience with this to answer. For those of you who are dealing with PANDAS as their reason for IEP, how do you specify that the services may wax and wane? I know hes a mess now, but what if he miraculously looks well in a month. I want to ensure they dont take him off the plan. And if we do have that delineated, how do I trust that they are going to accommodate him at the proper time? I obviously do not get enough info from the teachers! I am frustrated to say the least. I have requested a general aide be placed in the classroom immediately until a formal plan is developed. They are already moving him to a lower math class with more teachers and small group instruction. This is sad as he was so good in math prior! Any advice is welcome!

I am in the same boat. Coincidentally, we just went to immuno yesterday for first visit too and had 10 vials of blood drawn. Did you get the results yet? If not, you dont yet know if there is a condition that will be covered. I looked up my insurance policy on IV IG and it specifically bans coverage of IV IG for PANDAS and any post infectious disease. That really blows! But if they do find any immune deficiencies, there is a chance that you will get coverage. Qannie, you are so fortunate!! My question is, will they cover the dosage needed for PANDAS? I understand that its a very different dose than immune deficiencies. I wonder if that complicates things?

Great description posted above For us, ERP is exposure to feared substances. For example, DS is afraid if vomit. First he would touch fake, rubber vomit with one finger with eyes closed for one second. We rate his fear thermometer ( scale if 1-10 or colors yellow to red) both before and after. Typically after a week or so your 1-3 both before and after. Then he would touch with eyes open for one second, then 3 seconds when he's mastered that. Then he would look at a cartoon character such as a baby spitting up, them listen to audio sounds of people gagging, then look at pictures of people not looking well. The child directs which item they want in which order in relationship to the stress level it causes. Keep in mind that they can work so well for so long, and then the bottom falls our when they flare and you have to change directions, start over, or abandon ship. That's where its helpful to have someone with an understanding of pandas. Our current therapist is awesome with DS and he's willing to really put himself out there to get the job done which is awesome! But she totally doesn't get pandas and is quick to put a label on him when things go wrong accusing him of being "immature, attention seeking, coddled, over indulged, ect". Makes me want to go through the roof but I give up trying to explain bc I get accused of making excuses and being an enabler. But I can't bare to have to start over with someone else again, especially since he loves her and does the work. So make sure you have the right person for the get go and spend time one on one with the therapist first. A word of caution from my experience, they all say they know pandas but you soon come to realize they may not.

I can see you have a lot on your mind and hands right now. Good for you for getting the right help so quickly! CBT generally has a beginning and an end, unlike talk or play therapy. There is homework that will be very specific as well. It is very optimistic for your therapist to think that 8-10 sessions will be enough, but certainly its a start. Every child is different. What you are describing sounds like my son, which is anxiety and avoidance of topics or bothersome subjects. AT the end of the day, OCD is a manifestion or variant of anxiety so it makes sense that it would make her nervous. I would be very nervous if I felt I had to go through all of those motions, especially in public. Its very hard for these kids to deal with all of this. I would think once every 2 weeks in totally unacceptable. I would urge for once a week, and once you are really making progress and your child is on board even twice a week is helpful to make faster progress. We have been through so many therapists that I finally know the drill. Feel free to pm me if I can help further. You also might ask for a one on one visit without your daughter after the assesment. If its going through insurance, they can not legally charge you without the patient there, so ask if a phone call would be more appropriate. (that way they can be doing other things or be at home during the convo they wont get reimbursed for.) You need to know what is happening and you need to be involved, especially for homework.

Quest has a way if annoying doctors offices as they send messages everytime a test has been ordered, then collected, then received, ect ect ect. The office staff has to individually scan and assign each result to a dr for direction. In our office the docs all decided it was too chaotic so all the quest results come trough after the very last test comes in. Yes, you are waiting in the Lyme, no doubt. It can take weeks. Even though some if the tests are normally returned within 48 hours, most offices opt to have them bundled one time so the doctor only has to review once and the nurse only has to call once. You would think these companies would come up to speed by now! As for therapists, we have been through our share. My rule is I want to stay and at least watch. I want to beta part of the process so I know what's going on. They usually don't do ERP on the first meeting as they have to get to know the child and put the list of problems into a hierarchy. Usually by the third visit they begin ERP and start at a fairly easy subject that they are guaranteed success with. If you start too easy they get bored and too hard they get traumatized so there is definitely an art to it. I would be weary of someone starting ERP on the first visit and without you being aware of the process. Forgive me if I misunderstood something in your post.

Yes, dr latimer said that it would not hurt but she doesn't recommend it mostly because it causes parental stress.

What DI you mean by you wouldn't have any abx to fall back on? Do you mean your doc won't prescribe anymore? Our son had his t and a just before yours. He had been a nightmare ever since, massive flares. Things are just starting to calm down as of this weekend. Not exactly the miracle we saw with out daughter. At the conference they said that kids will flare post surgery due to excessive inflammation so that was reassuring to hear. But our kiddo is definitely worse now than he was before. I hope your son continues to improve.

I would do the same. Finish one then take the other.

Well Smarty, you have certainly earned your name in my book! Thank you for the excellent and specific advice! Yes, we are still working on stabilizing him, although it took us a long time to figure that out. We as parents tend to discuss our kids behaviors as relevant to the worst, causing us to underestimate how dysfunctional the child really is. I am finally realizing that even at his best, the child I knew is not there. (On vacation, but WILL come back!) The 504 we had was just protecting him from more damage and to support him during flares, but it seems that his executive functioning is out to lunch and his self control has gone with it. I do have copious notes from doctors as "suspecting PANDAS" or nuero-immune disorder, or one doc put it. I have a great psychiatrist on board that is always willing to make phone calls and write compelling letters for us, and our family doc (although she has no clue on how to treat us beyond abx) wrote an extremely strong two page letter when the school refused to meet with me earlier on. SO I suppose what Im hearing is that we are not alone, and that many kids in the more chronic state of this disease are lacking in abilities in school even when "well" (which tends to be a relative term.)It just took me a whole year to learn we weren't getting out of the woods that quickly!

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.

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...

Good luck and safe travels!

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.

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.

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.

Dr. Cunningham said at the conference that results are taking 6 weeks or more, not due to how long it takes to run the test, but because there is only one part time person running the tests and the high volume they are receiving. Its a funding issue and she hopes things are able to change soon.

We know a urologist in the military. His name was Major Payne and all the men cringed at the very thought of him.

Let us know how it goes! 3x a day is a lot of work. Will they give him a dose in school?

My kids starting seeing relief in 8 days. 10 might not be enough, especially with Amox. I would find the literature and bring it to her and push for a longer course or stronger abx. Good luck!