melmix

I am so sorry for what you are going through. I live about 20 mins from Dr T so we see him. He used to have a different office staff where it was really hard to get a call back or to get a hold of him but he just switched a few weeks ago and it has gotten better. Since I live close I make a lot of appts. and I can usually get in within the week. He does work on Sat. and Sun. also. If I remember correctly he is at a conference (I think in DC) two days this week so he may be a bit more packed but you could call tomorrow and see. My husband works out of DC and we do this ride regularly - it is 4 hrs on a great day and up to 5 or over if you hit bad traffic or construction. Not sure if he is right for you but it is an option. Also I used to live in the town Dr B works in and that is just about another hour from here is you want to make that drive (never seen him and don't know about his response time). There is also a specialist at Yale which is just a bit further north than Darien where Dr B is. Good luck. Melmix

This is exactly what my son was on meds wise - he has strep, mycoplasma, and viruses. The biaxin was for the mycoplasma which can be very hard to treat.

I had a friend who at one point had her son (no medical issues) end up not walking because his leg hurt so much. It ended up being a virus that somehow was in his knee. I had never heard of it before but I guess the knee is a place where you can get this pain from a virus. Good luck.

Getting the Strep tests done is a good first step. There are three that test for strep - not sure if he got them all but if not you could look into the others (my son came back high/positive for all). Another two that kids get a lot with PANS are mycoplasma and coxsackie. If it is high he needs to be treated you just need to find the right doctor. There is also a "pattern" to PANDAS immune systems - not sure exactly what it is but my doctor checked. The symptoms can be so varied I think the bloodwork is the right thing to do. In most states (if not all) you can request the bloodwork yourself also. I have also found some pediatricians know a lot about PANDAS and some don't - so it is good to get the right doctor.

My son is taking Biaxin for the mycoplasma and I think that is the first choice med for this in Dr T's opinion.

So my son was diagnosed with PANDAS by the new functional neurologist. His old Psych doc said she is a quack and is just selling me supplements. He said there is no way he has PANDAS and that without obvious tics he does not have OCD even with hair pulling and his hoarding type issues. I am going to see Dr T in Ramsey today as he is very close and got me an appt right away. I hope I get something to help but already know my Psych doctor thinks anyone who has seen hundreds of PANDAS cases is also a quack since he says it is so rare he could not have seen that many cases. What is the reason this has to be so hard?????

Thank you so much for the responses. This has been such a tough road. He was tested for Lyme through a blood test (not sure which one) and I am sure that there will be a lot more information with the stool and urine. I have actually tried the 23andme genetic testing - got it for all of my family except my son - his spit apparantly didn't have enough genetic info twice so they declined to try again. I am still trying to get it done although I have mine and my husbands and we do have some issues although I know my son does not have problems with the C677T and A1298C since the doctor also checked for that. I just gave him a dose of ibuprofen - I figure I can do that for a few days with no harm to his stomach just to see if it helps. Will post more on Thursday after I get stool/urine. I so we can get something to help him.

Hi all - I am new to this board and am looking for some help. My son has been to therapists and psychiatrists for years with not much changing with a mood and discipline problem. He was finally diagnosed a year ago with bipolar NOS and has been on medicine -some of which made him worse and some that did not help at all. Finally took my son to a doctor of functional medicine and she took a ton of blood (and stool and urine - still not back). I also noted (had to ask the pediatrician about this) that he had strep one time in early 2011 - similar time frame to when he started having issues (pulling his hair out in a large circle on his head). He has only been on antibiotics twice - once for the strep and one ear infection. He is 7 1/2 years old. Since then it has been hitting yelling being mad irritable etc. All of the doctors did not think it was a possibility of something like PANS as we did not notice an immediate onset (we did with the hair pulling but took him to a therapist since we thought it was anxiety induced). I have not spoken to her but got the tests back and I have this info: TSH 4.81 <4 ASO AB 859 <150 DNASE B AB 447 <376 M PNEUMONIAE AB (IGG), EIA 2.12 <9 HERPESVIRUS 6 (IGG, IFA) 1:160 1:110 Past Infection Cytomegalovirus AB (IGG) 1.68 <.91 Cytomegalovirus AB (IGM) 1.2 >1.1 Positive My psychiatrist says all kids have high levels of these and that it is not an issue. Does anyone know if this means he has an issue with inflammation in the brain? Anyone have these results from their kids? I know I should just want and talk to the doctor next week when all the tests are back but I am searching so hard for something. He was asked to leave camp for the summer since they could not control him. Thank you so much. Melmix