Jgoodall08

Thank you beerae, Your breakdown of the drs are helpful. Do you know anything about Ohara's practice? I'm confused as to what they actually do. Update: we just got all the labs back. The Dnase was neg, the aso was positive but the dr said they did the wrong test and it didn't give a measure of how positive it is. He has never been treated for strep in his life. He's 6. He isn't having any symptoms now so is it safe to take a wait and see approach and if he starts doing crazy stuff again do the right labs and hope they treat him based on that? Is it safe to say the stinkin flumist probably caused two weeks of craziness? I'm sure you ladies know what I'm talking about... But thoughts and worrying about him consumed me 24/7! Everytime he told me something hurt or bothered him I was worried sick. I was thinking everything from Pandas to a brain tumor to cerebral palsy because he's intellectually disabled.

Those CO drs supposedly want to hear from people who have similar symptoms to the CO kids. I think there's 4 kids in the north east too dealing with something similar. Very scary and heartbreaking:(

Praying for answers and for a cure

Hopeny I tried to send you a pm but got an error saying you couldn't Receive any. Are you able to tell me more about how Oharas practice works? I was kinda confused when I looked at the website.

So I called Bouboulis and the receptionist said I have to bring my entire family in and have everyone get bloodwork. We are a family of 7. She said 800-1000$ per person. Ok so 7000$ not including the appointment before I even talk to the guy. Really?????

Lyme was done through Quest. I am not sure exactly what they checked for. The recent CBC and strep labs haven't come back yet. How long do the strep labs usually take? When they come back I will ask more details about the Lyme too. I guess I should just call and get an appt with Dr. Bouboulis. The neurologist ordered an MRI to put my mind at ease. But he would have to be sedated. Do you guys think that's necessary at this point?

Thank you so much for all of your replies. I am in CT. I've read Dr. Bouboulis is great but also read he has a very long late. I am hoping that if the blood work comes back off, they will just treat him. I don't know what to do if they don't.

Hi Everyone. I am wondering if pandas is what is going on with my son. A brief timeline: End of June he had a bad sore throat with white patches, fever, & headache. The throat culture was negative. The dr was even surprised. Since then he had two itchy rashes that started on his face. Dr wasn't sure what it was. Said maybe it was poison ivy and we treated it with prednisone because it was near his eyes. The last time he had this rash was 11 days ago. He also got the flumist when I brought him in for the rash. THe next day he had stomach aches and was just crazy. He was very emotional. He would tell me various things hurt and then he would freak out and cry and tell me that they don't. He has always been alittle anxious and a bit ocd about different ailments but this was just crazy. He also began a facial motor tic. All this stuff freaked me out big time because I had no idea what was wrong with him. I called the dr about the tic and she wanted to test him for strep. That was also negative. He did his for about 3-4 days and then it was just headaches and light sensitivity. So I started freaking out about brain tumors. The dr and neurologist are telling me he's fine. A Lyme test was done and that was neg and his cbc count was normal.for the past few days he has no symptoms, he's acting normal. Sometimes I see him touch the forehead in the same spot the tic is. I think he may still have a slight headache but I'm not positive. He's acting 100% normal. He is diagnosed intellectually disabled so getting accurate info out of him is a challenge. He looks pale to me with darker than normal circles under his eyes. My husband said he looks normal. I'm panicking because I think he may have had strep back at the end of June. I just don't understand how tonsils covered in white stuff isn't strep. So I'm worried he has an infection in him that needs to be treated. I cried to the drs and demanded they do more blood work. So we just did the strep ones, cbc, and something that checks inflammation. I didn't get those results yet. Am I just crazy? I feel like I'm in a nightmare and can't wake up because I simply just can't stop worrying about him. Do any of you think I should be doing anything else for him at this time, like Motrin in case there is inflammation going on? I wish he didn't look pale. Oh and he does have a bit of strawberry tongue, the nurse didnt seem alarmed by it.The drs pretty much said they don't know if they would treat him if the strep came back high... It depends how high and that point it may be a question for infectious disease people. I wish I could just pay a dr online to just give him antibiotics "just in case". Thanks for listening. Thanks for reading.