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Hi Alison, Well - I finally received my referral to the neurologist. The nurse just called with the blood test results - she had no titers with the ASO and had a count of only 8 with the DNase . . . so it doesn't look like PANDAS. It is confusing because it is clearly OCD and it has sudden onset . . . disappears . . . comes on again months later - overnight, etc. The psychologist said that OCD doesn't normally do that! I guess we'll find out what the neurologist thinks! At least with the eleveated titer counts it would have been a mystery solved. Now to start from teh beginning again . . . Thanks, Elizabeth

Thanks, Alison. Well - my pediatrician was supposed to be in today but she was out again. I spoke to the new pediatrician - he had no idea what PANDAS was but he was great to talk with - he ordered the panel of titer blood tests along with the Lyme disease just to rule it out and a CBC and a couple of others since we were going to be at the lab. It was a new experience for me to sit there and dictate the tests I wanted to the doctor (and one that neither DD or I had ever met before) - but he did it all without question and we go in tomorrow morning! In the meantime I am trying to figure out if I should be referred to a pediatric neurologist or a neuropsychologist? I know that we were seeing a neuropsychologist for my son's adhd. I spent half my morning on the phone with the insurance company but I did get a lot done and have a great neuropsychologist and a great pediatric neurologist at Yale. I guess I should call the office tomorrow and ask THEM which one I should see before talking to my pediatrician. Thanks again - your info has been terribly helpful!! I'll keep you posted. Elizabeth

Thanks, guys. I read your response on the other board as well. The OCD appeared out of the blue when she was 2 years old - after her hospitalization for the strep A infected lymph node. Although she tested negative on the throat culture - her body was clearly fighting the scarlet fever - the plumb sized node was full of the scarlet fever bacteria, she had the rash, and the rest of us had the rash and suffered from terrible strep with positive throat cultures. At the time I didn't know about PANDAS and never associated the OCD with the scarlet fever. The OCD got so bad and then almost as soon as it appeared . . . it disappeared. It has reappeared several times in the past three years - lasting for about 3-5 months at a time but not as bad as the first onset. Then around October - out of the blue - it appeared once again and has rendered us almost functionless! The school psychologist feels that this clearly resembles OCD but due to its "cyclical" pattern and the sudden onset and disappearance - it seems to follow the pattern of PANDAS OCD instead of just OCD. It is like having a completely different child around. We call her Dr. Jeckyll and Miss Hyde!!! And other things that I hadn't thought of before seem to strike a chord when reading the NIMH site - when she is going through this - she is unrinating CONSTANTLY - when she isn't going through this she doesn't have to go very frequently at all. She just was treated for a bladder infection. She never wets the bed but since October it has been a constant. She has developed an inability to go to bed when she was the one we could count on to go to sleep easily and the independent child who never needed me suddenly is glued to me - can't go to bed without me . . . can barely function if she is not on top of me - which is terribly unusual for her. She has developed a tic - this sound with her nose - that I have gotten used to. And then, of course, there is all the OCD stuff!!!! It manifests from a million small things - like how I stir the cream of wheat (I seem to always do it wrong, a mug was thrown across the room and broken because of this and so cream of wheat is no longer allowed in the house), if I put the clothes on in the wrong order then we have to start over, the underpants are too hot in the dryer and too cold if I don't put them in the dryer, there are very specific orders in which things must be done - but they change day to day . . . and that is just the tip of the iceberg! I love my pediatrician. She is an unbelievable wealth of knowledge when it comes to ADHD and has helped my son out tremendously and has come through on some real health problems - as a medical doctor she is the best pediatrician in the area . . . but I feel that she really knows very little about PANDAS. I did read about the two titer blood tests - I am assuming these are what I should ask for? I did contact NIMH and hope to hear back from them. This is a tough one because the school psychologist is just learning about PANDAS from the NIMH website but is unsure of who to refer me to - and wants to rule it in or out before we do whatever it is we are going to do through the school. He just had a severe case of OCD and worked with a family for over 2 years with medication and treatment - it was a nightmare for the family and they just found out recently that it was caused by Lyme's Disease and the child is now 80% better just from taking the antibiotics to treat Lyme's. With the PANDAS - no one really seems to know what direction to turn to diagnosis this. The school psychologist is taking this seriously though - and actually called me today to direct me to the NIMH website. That is at least one step in the right direction. Can they still tell through the titer tests if this is PANDAS - even though her original scarlet fever bout was 3 years ago? From what I understand from reading on the site it should tell me if she was fighting off strep within the last few months? Thanks for the info!!

Hi - I'm new here and was wondering how is PANDAS diagnosed and who does the diagnosing? My DD (5) was hospitalized 3 years ago for a week due to an inflammed lymph node under her arm. It was the size of a plumb and when they were finally able to drain it - they found it FULL of the strep A scarlet fever bacteria. (She had tested negative on the throat culture although the rest of us tested positive - we ALL had the rash.) Upon her release - she became a fictional character. For the next 9 months we were not allowed to call her by name - "she" was gone. Then one day, out of the blue, "she" returned along with some MAJOR OCD rituals/obsessions (we had to go down the stairs a certain way, open the doors a certain way - in certain orders, etc.) After about 5 months they practically disappeared. Some issues lingered but weren't a problem. Last year we did have a couple of issues - she wouldn't go to the bathroom for 5 months at school because it wasn't "blue" . . . but nothing that we couldn't deal with. This fall - out of the blue - it hit full force again - we can't say "hot cocoa" - it MUST be "hot chocolate" - we stir the cream of wheat the wrong way, etc. It was dibilitating before but then it all but disappeared. The pediatrician and I have been keeping an eye on it but it hasn't seemed a problem. It is now rendering us almost nonfunctional. I asked the pediatrician about PANDAS - I was concerned becasue it seemed cyclical and she did have a history with the strep A . . . the pediatrician dismissed it because she felt that it only dealt with tics. She directed me to a psychologist. We have state health insurance for the kids because we are self employed and DS doesn't qualify for any individual policy due to his adhd. There are only two clinics and they both have a waiting list of 4 months or so. The school psychologist thinks that this is definitely OCD-PANDAS but directed me back to the doctor to either do the testing or refer me to someone who does this. If she can't help me he is going to try and figure out who to send me to. In the meantime - for my own knowledge - who exactly should be doing the testing? And what tests should I be asking for - looking for? Thanks, Elizabeth

Hi - I'm new here and was wondering how is PANDAS diagnosed and who does the diagnosing? My DD (5) was hospitalized 3 years ago for a week due to an inflammed lymph node under her arm. It was the size of a plumb and when they were finally able to drain it - they found it FULL of the strep A scarlet fever virus. (She had tested negative on the throat culture although the rest of us tested positive - we ALL had the rash.) Upon her release - she became a fictional character. For the next 9 months we were not allowed to call her by name - "she" was gone. Then one day, out of the blue, "she" returned along with some MAJOR OCD rituals/obsessions (we had to go down the stairs a certain way, open the doors a certain way - in certain orders, etc.) After about 5 months they practically disappeared. Some issues lingered but weren't a problem. Last year we did have a couple of issues - she wouldn't go to the bathroom for 5 months at school because it wasn't "blue" . . . but nothing that we couldn't deal with. This fall - out of the blue - it hit full force again - we can't say "hot cocoa" - it MUST be "hot chocolate" - we stir the cream of wheat the wrong way, etc. It was dibilitating before but then it all but disappeared. The pediatrician and I have been keeping an eye on it but it hasn't seemed a problem. It is now rendering us almost nonfunctional. I asked the pediatrician about PANDAS - I was concerned becasue it seemed cyclical and she did have a history with the strep A . . . the pediatrician dismissed it because she felt that it only dealt with tics. She directed me to a psychologist. We have state health insurance for the kids because we are self employed and DS doesn't qualify for any individual policy due to his adhd. There are only two clinics and they both have a waiting list of 4 months or so. The school psychologist thinks that this is definitely OCD-PANDAS but directed me back to the doctor to either do the testing or refer me to someone who does this. If she can't help me he is going to try and figure out who to send me to. In the meantime - for my own knowledge - who exactly should be doing the testing? And what tests should I be asking for - looking for? Thanks, Elizabeth