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feedjke

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  1. 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.
  2. 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 rega
  3. 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 l
  4. I am southeast of Columbus. But I'll drive where ever.
  5. 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 appointmen
  6. 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 p
  7. 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
  8. anyone? I know hes more an autism but I was told he treats PANDAS.
  9. 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
  10. 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 kn
  11. where do I get the cunninghams test? and what will it tell me?
  12. 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
  13. 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.
  14. My son gets headaches (not quite migraines) I get migraines though so he could get them from me also.
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