kimballot

Lisa Marie - I am feeling for you. It sounds like you had a bit of good luck with someone recognizing PANDAS early and a it also sounds like you are a resourceful person - getting an appointment with Dr. B so quickly. Good for you! You will soon be in good hands. Please let us know how it goes.

You were the first person I connected with on the forum and I have been following you all along. My thoughts are with you and your family. I will be following closely- please tell us how things are going! All the best!

Wow! I never heard of these! So much to learn - we did not have THESE ANA tests, so I really do not not know the difference between this and C3D.... Anyone else know?

Nice! good job!

My take on this is that C3D is an accepted test to show a general autoimmune response that can result in deposits in the joints and joint pain. The cause of the response could be rheumatoid arthritis, lupus, or other autoimmune disorders. Once a C3D is elevated then the doc tries to figure out what is causing the elevation. Regarding the ANA (I am assuming you mean Cunniningham's antineuronal antibodies), that would be a specific test to state what the underlying cause of the elevated of C3d is. The problem is that the ANA is still in the research stages, so it is not a diagnostic test - and PANDAS is not an ICD-9 approved diagnosis. So.. with the elevated C3D we can safely say that my son has an "autoimmune disorder", which is a diagnostic classification, and is eligible for insurance intervention and for letters to the school, etc. Also, (interestingly) while my son had an elevated Came Kinase of 156, he ONLY had anti dopamine -1 elevation, and that was only 4,000, which is just one dilution away from the upper limit of 2,000 in the normal subjects.... so there may be more going on than what we see in the ANA. So much to learn!!

yes - I do remember that he told me this was probably the cause of my son's joint pain. It was good to know that it was not all in his head - as we had been thinking, and made me feel better about giving him ibuprofen when he complained of joint pain. Here is a link with a simple explanation of the test - not much info, but I can understand the stuff on here! http://www.answers.com/topic/immune-complex-detection.

HI - the PANDAS docs most often used are: Dr B - Dr Bouboulis Dr K - Dr. Kovacevic Dr L - Dr Latimer Dr T - Dr Triffileti I'll send you a PM with some of my thoughts.

Hi Amy - very interesting new behavior there! If it coincides with the change in meds, then I'd call Dr. B on Monday if it is still there - just to let him know. He may say give it a few days, but you should let him know about it. I'd also take a short video clip of it... in case you ever need to look back at it for a detail that you are not aware of right now.

That is so interesting - high Cam K but not high C3D.... someday we will have names for all these PANDAS patterns and then we will be able to understand everything so much better. I wish there was a researcher taking all of this information on all of our kids and putting into a great big database so it could help us and others in the future!

WOW!! you are so lucky! It can still smell it from about 9 years ago - it reminded me of stinky feet! You are so fortunate that your daughter is taking it! I remember that it did work well... so hopefully it will work for you!

Hi - we had c3d of 55, so similar situation. From what I recall from my conversation with Dr. B it is evidence of an autoimmune response - which can be used as evidence for PANDAS for future treatments. I really do not understand the specifics either. My goal this summer is to learn about the immune system so I can understand this stuff better! After you talk to Dr. B if you could post what you learn it would be great. I know many of us are trying to understand this test - it seems that the PANDAS docs are starting to order this and so far I have seen many kids with on this forum with elevated C3Ds. I am wondering if any of the kids on this forum do NOT have elevated C3Ds.

I feel for you. The waiting is the hardest part. I knew the day mine was coming and we were driving back from Dr. Bs in Connecticut. We stopped at every res area and restaurant with internet along the way to check for the email! Ours was in the PANDAS range, but not everyone's is. Remember that even if the Cam Kinase score is low it is just one piece of the puzzle. Also, you will get the Cam Kinase score first, but you probably will not get the anti neuronal antibody numbers for a few more weeks. The meaning behind the anti neuronal antibodies is less clear, but even if the Cam Kinase is within normal limits, you may see atypical reaction sin the anti neuronal antibody numbers.

This is an off-topic question about clindamycin - is it still in liquid form or is it in a pill now. My son took it many years ago and it was a very thick liquid that smelled horrific. I am wondering if they have made it more user - friendly!

I am sorry to hear your son is not doing well on your vacation. Nothing is worse than seeing your son backslide and being away from your home and resources. I remember when my son had a particularly "tic" filled vacation one year. We were staying at a friend's house and he had some sudden breath-holding, neck -wrenching, trunk flexing tics combined with a compulsion to flex forward on every third step. It was horrible, and it lasted the entire time we were there. I ended up cutting the vacation short and heading home. About 2 hours after leaving my friend's house, the tics suddenly stopped - right there in the car. His whole body relaxed. A few months later my friend told me that both she and her daughter had been sick for several weeks. A short time after that she noticed a black spot on the ceiling - yup .... mold was seeping through in their 100 year old historic home! They spent the next several months in complete mold abatement. Take a look at your surroundings. Is there something your child could be reacting to? Try to notice if the tics decrease when you leave the immediate area. You could try to write down what you are seeing and when so that you have it recorded for later - then try to find time / energy to enjoy yourself on some level. Best wishes!

That was a nice break!

Congrats to you and to your daughter! You are an inspiration!

Wow! This is scary. Thanks for letting us know!

My son had ugly, large, cryptic tonsils. We did not take them out until he was 7 years old because they never really got infected until then (he was always on strong ABX for sinusitis). At age 6 1/2 they tried to do a PH probe to check for reflux. That is when they put a wire down the esophogus into the stomach to measure how much acid backs up from the stomach to the esophagus. My son was awake when they put this in and he was supposed to "swallow" the wire as they fed it through his nose. They could not get the probe down past his tonsils because his tonsils were so large and he was gagging and fighting. After a horrible 10 minutes of trying, they stopped the procedure. My son went on to have the WORST PANDAS exacerbation of his life over the next 4 weeks. In retrospect, I truly believe that he was harboring strep in his tonsils and it was somehow dislodged during the procedure. We knew very little about PANDAS at the time. We finally took him off ABX thinking that the ABX may have been one cause of his mental health problems. When we took him off, his tonsils turned white. We knew enough about PANDAS to know they should be removed. He had was on augmentin before and after the tonsillectomy, which probably helped with the process. WE had NO PANDAS symptoms after the surgery and he really had 3 good years after the tonsillectomy with only 1 or 2 sinus infections/ PANDAS flair ups. They were truly the best years of his life and that is what I am hoping to regain with our current treatments - as he is having sinus surgery next week.

I think he is just using an official sounding word for unspecified brain dysfunction. It is not a specific diagnosis. Since there is no diagnosis for PANDAS, doctors use different diagnoses like anxiety due to an underlying medical condition or encephalopathy, or autoimmune disorder - depending on the test results they have.

Did the diagnosis say encephalopathy or encephalitis? Encephalopathy is a bit more general and means disorder or dysfunction of the brain - enchephalitis refers more specifically to swelling. Also, your doc cannot use PANDAS as a diagnosis, because there is not yet a diagnostic code for PANDAS. That is why we need to get the cunningham test FDA approved - to move us toward a legit diagnosis of PANDAS.

Dr. Dawn, Good job with your mommy instinct! I hope this means that your DS will soon be on the road to recovery!

Kay - my daughter (non pandas) had swollen eyelids last year - it turned out to be Mono. Apparently, this is common in mono. She has had them a few times since, but not as bad. She seems to get them with allergies or when she is run down. When I was researching swollen eye lids I learned that Blepharitis is usually due to a local infection of the eye lid... but this was not the case for my daughter.

Hoping ti goes well for you... Is Allie still doing well since she stripped away the PANDAS?

Hi - I recall that MomtoOCDSon posted on this a few months back http://www.latitudes.org/forums/index.php?...mp;hl=cataplexy Also - Dr. T has something in his website about this. My son and I both have mild cataplexy - which is related to narcolepsy- we lose motor control in our hands when we are emotional or tired!

Hi Pat - I agree with everyone above. I would add in that I would get baseline bloodwork before starting abx. ASO, DNASE B, mycoplasma, lyme (I believe it is western blot that they ask for), Immune status panel, S pneumonaie titers (all 14). Some docs also look at C3D immune compounds now. Perhaps your DAN Doc could order those? This will give you a picture of your son's levels in exacerbation.