JoyBop

T Mom thank you for that! This site has been a gift to me! I out an email in to Dr T since my parents live right near his office. I am even closer to CT and I know there is another doc there. Things have been going well but then just when I think we are out of the woods he has a few meltdowns and panic attacks. To make things more complicated we found an embedded tick on him last night so we have to switch the le flex to ceftin. Thanks again for the tremendous support.

Sorry for the typo. Don't you love auto correct? I meant keeled not jerked.

Thanks for those suggestions. My doc chose jerked bc he took Zithromax in December and it didn't get the job done. Augmenting gave him c diff in the past. Granted he has outgrown his GI issues but we are still being cautious. Thanks for mentioning there is a long wait. I just email dr Ts office. My parents live down the street from his office so it would be easy. Does anyone know what the fees are for consults? My docs here would be happy to follow protocol locally. We wouldn't want to do anything invasive unless ifs is unbearable. So far seeing good results but not perfect. Pr40 I did get the name of a nurse practitioner in hingham MA that specializes in PANDAS. that's all she deals with. Our psychiatrist recommended her as one of her other patients with the same disorder has found her to be very helpful. She works with the child's doctors and oversees the treatment. My doc wasnt thrilled about a nurse practitioner. I Belem e her last name is Chapman on derby st in Hingham if you want to look her up.

Thanks to everyone for taking the time to post your experiences. We are on Day 6 of antibiotics and it does seem to be returning to the sweet boy we once new. Just when I think we are out of the woods he begins another panic attack or fit of rage but I must say that 80% of the time he is behaving like his old self. He still is hyper active and cant focus on school work and his handwriting is now worse than a 5 year old. But overall it is an enormous improvement. His ASO titres came back today at 545. All other bloodwork looks normal. I have so many questions but dont want to make a millions different posts. If you are still with me, please tell me: How long would you say is the best duration of initial antibiotics? We have 2 weeks of Keflex now. We are willing to try a month if needed but dont have a PANDAS specialist on our case. He is allergic to Amox and penic. and has a history of C-Diff so we dont want to try Augmentin. When did you begin seeing a PANDAS specialist and why? What treatments did you try first?

Thanks for that reply. It is so great to be able to talk with people that are dealing with this. We are feeling so alone. For the record, my son has had some strange autoimmune things going on but he never had allergies. Yet certain foods he ate triggered certain responses that are not seen in allergic responses. We saw the chief of neurology at a pediatric hospital in Boston yesterday and he was fascinated with our kids immune system. So is it safe to say that most PANDAS patients have other auto-immune issues? Please tell us what other health issue your PANDA child might have.

Here is a great pedi GI I used to see in Boston. He since moved to NY and started a new department. He was very compassionate and open minded in dealing with my child when he had undiagnosed and severe GI problems. He did every testing, imaging and treatment available. He never gave up on us when many many hospitals and docs did. http://www.mkmg.com/index.cfm/fuseaction/site.physicians/action/dtl/phys/99872760.cfm

Hello all. I am new to all of this. My 7 YO son was just diagnosed with PANDAS.Here's our story in a nutshell... He had mild social anxiety and obsessive thoughts but functioned very well and never needed any help of any kind. He was always a bit fidgety in class but never scored positive on the Vanderbuilt ADHD test. Somewhere in December he changed drastically to the point that we barely recognized him. He began having massive panic attacks, irrational fears (gum, diarrhea, vomit, feathers, and startling noises or movements) He started using baby talk at home, becoming highly irritable, angry, hostile and at times combative. He has to smell and chew on everything, particularly things that smell or taste bad. I could go on and on. Our PCP tried him on Prozac 10 mg. To say that it was a disaster would be an understatement. All of his behaviors became exascerbated and he was highly agitated. I was urged to hang on for 5 weeks to let the full dose settle in. At 5 weeks he became suicidal. Thats when the psychiatrist figured out he had PANDAS. As we put the pieces of the puzzle together we remembered (reminded by our PCP) that our son had 5 days of high fevers during Christmas break, no sore throat or other symtoms. He tested positive for strep. and has never been the same since. However, these behaviors started a few weeks before the fever. We have no idea if he could have had strep all that time. As we suspected the diagnosis, we got his throat swabbed and sure enough, positive. He had been complaining of a mild sore throat every morning for months but never complained again. Come to think of it, I put cough drops in his Easter basket...We now realize that our 3 year old daughter had the same exact thing. Her symptoms resolved around the time our sons began. She took 5 days of Zithromax. At the time she was being treated by a psychiatrist, psychologist and occupational therapy. They were all shocked at her dramatic and sudden improvement. She has strep now as well and we are treating her for 2 weeks for starters. Our son hass been on Keflex for 3 days now and we have seen considerable improvement. He has his ups and downs but I am starting to see the boy I once knew. I am curious hass anyone has seen total resolution to behaviors after antibiotic treatment? How long were your kiddos treated before you saw results? My child is not a candidate for long term antibiotics due to past GI complications and allergies to many antibiotics. Did symptoms ever reoccur? Go away completely? What types of doctors are helpful? Im finding many are inexperienced. Neurology was a waste, ENT is clueless. The Psychiatrist has been great but wondering if there is anything we are missing. Havent done blood work yet. Any advice for an overwhelmed newbie? Thank you in advance for any info you are willing to share. Joy.