TxPANDAMom

The diagnosis by phone is after he has you do blood tests locally and has the results...He spends approximately 1 hour on the phone with you - sometimes more than one phone call - which is more time than you will get with most doctors in person. Tics were a major symptom for us ... however - we never had to take any type of tic or seizure medication...in fact - the antibiotic was the main drug used to get the tics and about 15 other symptoms under control...like I said - PANDAS doctors are not easy to find and appointments can be 6 to 8 months out...I still feel Dr.K is worth talking to...

If you believe you may have PANDAS, I would find a PANDAS dr. to do the testing...speaking from experience - Dr.s that aren't familiar with PANDAS (which seems to be the majority) will dismiss the idea of PANDAS all together. Dr. M. Kovascevik in Illinois will even do phone conferencing if necessary to help determine if it may be PANDAS. We went a full year of doctors in the Houston medical center without a diagnosis...from neurologist to psychologists and then some...We have had the tics, as well as OCD, hypersensitivity, focus issues (which you may be seeing - my daughter went from a 4.0 in school to not being able to read a book or watch a 30 minute tv program), anxiety and depression (which you may also be seeing - my daughter talked of dieing several times...)we also had balance issues, voice regression and changes in speech pattern. I would get it checked out from someone who knows PANDAS..it might be as simple as using the antibiotics to get results....don't be afraid to let them try the antibiotics...if you can get it early enough, i have heard that can clear up all the symptoms for some kids...if not, there are other treatments that are seeing positive results...Sorry - I am long winded too...BUT - See a PANDAS specialist!!!!

Ashley - I have a 23 year old with PANDAS. She has only had noticeable symptoms for the last 5 years - we never saw anything as a child. So we too had a hard time diagnosing this problem. But there are older children & adults with PANDAS. It took us a year to have it diagnosed and it was only after I saw a segment on the TODAY SHOW that I researched the possibility. PANDAS doctors are hard to find everywhere! not just Australia. A great resource that has helped me emensely is PANDASnetwork.org. It is run by parents of PANDAS kids. Very informitive and they pull information from everywhere they can get it. Anyway - we were diagnosised officially by a Dr. in Illinois (and we are in Texas). His name is Dr.Miroslav Kovacevic. He is well respected in the PANDAS community. He also does phone conferencing. He treated Sara (my daughter) for 3 years with antibiotics and finally an IVIG. We saw definite improvement with the antibiotics and 6 months after the IVIG we went 1 full year with no symptoms at all. Saras symptoms were quite severe, and kept her from a normal life of any kind. Her symptoms came on suddenly in her 3rd month at college as a freshman. They included joint swelling, balance issues, anxiety, tics, focus isuues, confusion, OCD, hypersensitivity (light, sound & touch), seizures,depression (occasionally to the point that was suicidal), voice regression - speech patterns changing - sometimes lasting 15 minutes, sometimes days. Of course we had to bring her home from college - run extensive tests - she was hospitalized for 5 days, had MRI's, eeg's, tons of blood tests... after 5 days they tell me she is has a B deficiency but can't find anything else. We went to specialist in neurology ( one wanting to call it scitzophrenia) One dr. tested her for parkinsons because of her movements, and balance....BUT - after Dr.K had us run some blood tests and checked her titers and a few other levels - we got our PANDAS diagnosis. He started he on antibiotics which pretty quickly gave us results though they never totally cleared all problems. We flew to Illinois a couple of times to see Dr. K but did most correspondence by phone & email. We currently have a dr 3 hours away which we love - Dr. Kendal Stewart in Austin, texas. We are currently trying Hyperbaric Oxygen treatments - we are totally off antibiotics - she recently went gluten free - she does take a very low dose of Xanax that seems to control the anxiety when needed. But life in 2013 has been great. Sara is working again, driving again and hopefully on her way to a normal life. We do see her menstrul cycle having some effect on the symptoms...I've been checking into this link as well...since children are the ones getting all teh tests, not sure I will find much. Hopefully some of this has helped. Good luck and know there is Hope out there and people who are working to cure and find answers to this crazy disease.

Kathy - I can't give you the name of Tn doctor - I am in Texas and using a doctor in Illinois - he also does phone consults....we have been using him for almost a year now - we have had GREAT improvement in that time - my daughter just turned 21....His name is Dr. Kovacevic...here also is his email - mkovacevic@aol.com

For those of you that have had IVIG treatments - how many have had a second round and how soon after the first did you decide to do this....what were the signs of needing a second round.... and did you see results from booster. We had out first IVIG in May - it is now October. We have DEFINITELY see improvement since the treatment. In the last month we have seen some FLIPPING as Dr. K calls it. The old symptoms come back for short periods...sometimes just for a few hours. We are still seeing signs of improvement though very slow in coming and the flipping always makes you nervous....Any signs out there that a booster might be beneficial? THANKS for feedback in advance!

Thanks for responding - Who did you see in Kingwood? and are you still using her?

We use Florastor and have had great results...one capsule morning and one at night. We have been on this for 11 months now

I am the mother of a daughter with PANDAS. Symptoms started in October 2008 - FINALLY got a diagnosis in November 2009. One of our biggest problems...she just turned 21!! How many parents are out there with OLDER PANDA kids....We live in Kingwood, Texas...about 20 miles from one of the largest and most well known medical centers in the country...we are being TREATED by a doctor in Illinois....all they could tell me in Houston is what she did NOT have. It seems no one down here has heard of PANDAS, and 99% of the information online states that it is a pediatric disease for infants to puberty..I am here to tell you it is NOT just for little kids and it really worries me all of the teens and young adults who have probably been missdiagnosed and are probably now on some really hard mind altering drugs or worse. HOW CAN WE GET SOME STUDIES STARTED FOR OLDER KIDS..We would volunteer! How do we get more doctors interested in PANDAS....WHY do some denie it even is a real disease?? After starting my daughters treatment, we have seen MAJOR improvements (the antibiotics and IVIG)..I feel if there were just more studies and more exceptance, this whole process would be at the least, cut in half and she could get back to a normal life...it is so sad that at this point in her life when she should be out in the world with great things ahead of her, we are dealing with this...