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I sent a certified letter requesting the evaluation and believe it or not, got a denial dated the same day they received my request. Tell me they had time to review my 20 pages of medical and comprehend PANDAS before making the decision. Again same principal.

I am wanting to get an IEP for my child. My son was diagnosed 4 yrs ago and I had to pull him out of the district because believe it or not even with information on PANDAS and DR. info given to the principal she took it upon herself to determine that my son was doing it deliberately (tics, etc) and decided if he continued he would be punished for it. Yes I did just say that, unreal huh?. Now my daughter has been diagnosed and is in the same district with the same principal and I want to get her an IEP. Otherwise I feel that she will continue to treat my child how she feels fit with no regards to her condition. Shes also a identified gifted student who started getting failing grades and major behavior problems yet this sent up no red flags and did not even warrant a parent teacher conference. Any help or information that you may have used would be greatly appreciated.

Okay, I have a son who has had PANDAS for 4 years and we live in Ohio and have about zero help here. Luckily he is somewhat mild and still fully functioning. Its me that usually ends up not function after dealing with all the behavioral and emotional issues. So he is 12 and I have a 10 year old daughter as well. She is a behavioral mess. We finally have a diagnosis that is def ODD and borderline to yes on the ADHD. However now that I have been jumping into all the new PANDAS information I just wonder if it could be PANDAS? how would I know the difference she has had many undetected or late detected strep infections since neither one of my kids show any normal symptoms such as sore, red throat, fever etc. I cant even get help for the PANDAS kid I have how would I even go about finding someone who could look at a possible connection. Although my PANDAS child is rough, my 10 year old is a nightmare. I do not medicate her and dont want to unless I have ruled out every other theory. Is PANDAS likely in siblings?

I am southeast of Columbus. But I'll drive where ever.

Okay I was told on numerous occasions that the PANDAS will resolve with puberty, something with the blood brain barrier. But after browsing the forums I see older children still battling with their PANDAS is that no longer considered the "CURE" I thought all this time I was waiting it out and my son now 12 would be back to what ever new "normal" this disorder has left us with but, now my hopes are dashed and I feel absolutely devastated. Is there anyone out there that is financially struggling how do you get your child the treatment they need? Its 400 upfront to even schedule an appointment with the one DAN Dr. I found in Ohio.

Okay my son was identified with PANDAS in 2nd grade. That means the doctor told us that's what it was but refused to write it down as a diagnosis since as he said at the time the verdict wasn't in on this one yet. His symptoms are rough but I would say mild after reading Saving Sammy. He has tics and bouts of anger, emotion, and well for lack of a better word overall weirdness. For example he likes to follow me around constantly asking me the most insane off the wall questions and looking like I should really know the answers. Don't get me wrong its rough to see him struggle and all the pain with all the tics and well what I wouldn't give to have my kid back. Hes now in 6th grade and we basically cant get any help here in Ohio. No one is willing to do any more than antibiotics for a positive strep. Our funds are limited but I am desperate. We have had the year from ######. In June my husband who is self employed and the only one working fell and broke his back. That ended in 12 days in ICU and 2 months off work with -0- income. That same week my 3 year old decided she couldn't walk anymore and after 2 trips to children's ER they found a problem in her knee that as they stated has never been seen in a three year old. So a experimental surgery finally got her walking a month later. Then my ENT decided to take out both my older kids tonsils. My daughter 10 did fine after a 2 week recovery. My PANDAS son hemorrhaged on day six and went into emergency surgery and then hemorrhaged again and then another emergency surgery and then hemorrhaged again you get the picture. A week in children's and they finally find a blood condition causing the extensive bleeding which we have not had fully worked up yet. Oh did I mention my 10 year old daughter puts me through a daily dose of ###### as she has been recently and finally diagnosed with ADHD and ODD. I need to find something I can do and someone here in Ohio to help me. Can you guys recommend anyone? Im currently having to homeschool my son as well and would love to return him to regular school but dont think he would be able to get an IEP since he is gifted and even symptomatic breezes through his school work. Yet I made the choice to homeschool due to our schools bulley problem (including the teachers) and their very strict attendance policy. Any help and ideas Im just losing it here.

me too!!!!

Dr. Demio is a well known and well respected DAN Dr., that might be where you have heard the name. I saw him before for my now 20 month old at a vaccine consult when she was about 4 mo. She had her first round of vaccines and we never did another after our consultation. It was shocking how wonderful and heartfelt he was. He held my little girl not because he needed to, just because. He showed us things that our ped had missed and when I later mentioned them he was like oh yeah I see now. Very detailed and I think he took well over an hour with us. He was running behind and had patients waiting but never hurried or rushed us out. I know he believes in PANDAS I just dont know what treatments he leans toward. I like the Biomedical approach, I just dont know how that works for PANDAS.

anyone? I know hes more an autism but I was told he treats PANDAS.

I am considering seeing Dr. Demio. My son usually presents with symptoms behavioral and tics, we test for strep comes back positive on gene prob treat with antibiotic and 3 days later tics gone, behavior better. This time daughter had strep son was negative but still had behavior and tics, tried low dose antibiotic and did nothing. Still ticking approx 2 month later. Got PET scan normal. ASO 200, Anti-dnase 148. Neurologist wants to use resperdal. Tics are there but mild all movements, no ongoing vocal. possible throat clearing but only does it for a few minutes then I dont hear it for another day or so??? This just doesnt seem like the right Rx to me. I dont want to just treat the symptoms, I want to get to the bottom of this! Im considering Dr. Demio, I know he will not jump to give Rx, he will look for the root of the problem. But I'm also worried he wont perscribe antibiotics/ steroids or whatever if need be? please let me know any experiences or opinions. Anyone have any luck negotiating fees, its like 600.00 just to walk in the door.

erica240 (my kindred spirit) Let me see if I can hit this nail on the head. Although you dont want anything to be wrong with your child at least PANDAS would be a starting point, a place to start and move ahead. Something you can tell someone who inquires about your child, instead of "we have no idea whats wrong with him" Perhaps your like me (admittedly very Type A and probably some OCD tendacies when it comes to neatness, germs etc) I can't deal with what I can't understand. The constant not knowing, starring at my child for one more tic one more sign that makes more sense. Not knowing which direction of the hundreds to go in. Knowing that this is my responsibility to help my child (not to mention what if it becomes an issue for his younger siblings) what if I chose the wrong one? Anxiety Anxiety Anxiety. Anger at the doctors that look at you like your a loon or one of those moms who wants her kid to be sick for the attention. I deal with black or white, I dont do well in shades of gray. I am suffering, this is affecting my health, my function and our entire family. We all are struggling. I vote do the test. I think your already doing better than me as you know where to get this test. It can help in diagnosing PANDAS but I really dont think there is anything available to rule out PANDAS. So if in your heart of hearts you still believe it, pursue it regardless of the results Sorry for the rant but I feel better now just got off the phone with a Dr. who wanted me to try Resperdal, although he wont rule out pandas he said we just treat the symptoms for now. Why dont I just put a bag over his head, then I wont see the tics problem solved right (why bother getting to the real problem).

where do I get the cunninghams test? and what will it tell me?

Are you secretly me???? Normal results yet convinced its pandas, Dr. problems, insurance problems, husband problems. Son had normal strep, daughter tested positive. The whole amox would have killed the strep crap, so it cant be pandas. Banging head. I think we are living the same life...and oh we have NO dr. either

T.Mom, I'm a little new to the board am I suppose to know who Diana and Beth are? Maybe its a stupid question or maybe its just too late to be thinking this hard? What about Dr. K do I just call and ask for an appointment? Im willing to drive Im just worried about being able to afford to get in the door.

My son gets headaches (not quite migraines) I get migraines though so he could get them from me also.

Thats part of the problem, Im here in Ohio and have no one who will treat, let alone on our insurance. I'm convinced its PANDAS until you show me something that makes more sense. How do I find an immunologist in my area?

My son is still in regular school and everyday I want to pull him out. The H1N1, all the bullying and hes always picked on, the ignorance of the district, (Would you believe I have a sit down with the teacher and principal because this was the first time I had to send him back to school still symptomatic due to the antibiotics not working this time and the very next day the teacher sent my son to the principal's office because his eye crossing tic was making her uncomfortable. The principal told my son that he had better stop it or would be punished. My son told me and I just couldnt believe it, when I called to explain again that it is not something he can control she said and I quote "In my opinion he is doing it deliberately." I said yes you must be right he must like being called a freak and being constantly picked on. I was so angry I havent been able to call or go to the school since. Im afraid I will come unglued) And lets not forget the total joke of an academic program, my son is still not doing in forth grade math what he could do with me in kindergarten. He tested 3rd-4th grade math level in kindergarten and in all of those years he hasnt even been given an extra worksheet to challenge him. They tested him at my request and nothing more. I should also say this is a small school in a podunk little farm community. My husband is afraid if I home school he will lose social skills. Everyday I worry about him at school, now more than ever I feel like that school is a germ infested ticking time bomb

anyone???

My son is already in a pandas episode but still goes to reg school. We have I believe 3 cases of H1N1 confirmed and 5 being tested. Now they will be doing vacs at school with the nasal vaccine should I worry about ds exposure to the kids that got the vaccine for the first few days or so. What have you guys learned so far as how this may affect PANDAS children? We are NOT getting the vaccine! But on the other hand Im worried that if we get the H1N1 it will be critical do to all the autoimmune things going on already. I'm considering home school at this point but I'm reluctant since my son already has issues socializing. If there it a bully within 5 miles he finds my son, all day every day. Now hes having the tics so we might as well send him to school with a bullseye on his forehead.

Anyone have an IQ test done without symptoms present and then again during a pandas episode? I know there is always some discrepancies in the test just curious? My son is definitely gifted and I always wonder what is PANDAS (if thats what he has, 2 years and no diagnosis on paper yet) and what is just quirky giftedness. My daughter is gifted as well and we wish we could call her PANDAS at least we could put a name on it, to date we cant figure her out (neither can 2 counselors or her doctors).

Has anyone done the PET scan with Dr. Chugani? We did it Oct 16th and havent heard anything and was told by a staff member that there probable wasnt anything on the scan or he would have called. Did you have one done, what did it tell you or not tell you. This is driving me nuts. All along we have thought PANDAS PANDAS PANDAS due to the behavior coming in episodes and then the positive strep with each episode. This last episode was by far the worst and he had a negative gene probe? But his sisters was positive? My ped didnt really want to treat him but relenquished a mild does of antibiotic and it didnt work this time like it always has for the past 2 years. Not that I want my son to have this but I have that need for an answer to put a name on it and begin understanding it. If the scan showed no inflammation I dont know where to go?????

Although I see the merit in all the reasons to change the name above, I opt for the less sophisticated route. I just cant stand the fact that every time I discuss PANDAS I think furry cute black and white bears? Who can take that as a serious medical condition? When ever I tell someone I notice they seem thrown off as soon as I mention the name as if they had to pause for the furry bear images!!

okay, i got my dr to give me cephalexin a 10 day dose and I gave him some Ibuprofen (300 mg for 115 lbs is this enough) I will see where that gets us until I can get in to a Dr maybe Dr. Latimer if I can get to Maryland. So in the meantime I would like to try some Vits and other natural products. Any suggestions on what and how much and when? I saw something about Kefir?

Im about 45 min SE of Columbus but I will drive wherever I need to. erica240 I know what you are saying, Its just so hard and I always feel like my friends look at his behavior as hes a bad kid or Im a bad Mom. They just dont understand why I cant nip it in the bud. PANDAS is so complicated, if I said he had ADHD they would be like oh I see, I say PANDAS and they think Im crazy just making excuses. Its so overwhelming and I feel like its cut me off socially. When ever we go somewhere with other kids Im just waiting for something to start and argument and when it starts he just wont stop and kids and moms are looking at me like this kid is crazy.