mack5mom

Finally the Dr. agreed to try antibiotic therapy.He prescribed 250 mg. of Zithro for 30 days.Any one else tried this?

Thanks Carol,wish I had this in hand on monday when the pediatric Cardioligist told me he couldn't advise me on my little girls PANDAS because it was unrelated.

We go to the pediatrician for a follow up tomorrow,first visit since my daughter has been diagnosed by the neuroligist. Just wondering, anyone out there had their PANDAS childrens tonils removed and if so did it help?I want to ask the DR. but just wanted first hand results too. She is again showing cold like symptoms.I guess thats the autoimmune part of it. Thanks guys,Gwen

Hi Kim,she has Mitral Valve Prolapse, it was her checkup.Things went well, no changes to her heart.The cardioloigist had heard of PANDAS but he offered no help.Said it was unrelated so he couldnt advise me.

We are in east tn. very close to sw virginia.(near Bristol and JohnsonCity tn.) Has anyone tried chiropratic care or theraputic massage?My insurance doesn't cover the massage therapy and our resources are running low but if it could help I will find a way.

Hey,Guys its me again.Just wondering if any other PANDAS children suffer from paranoid behavior?On top of my daughters germ phobia,now she thinks people are laughing at her all the time.She constantly looks at me and says "its not funny". Not sure but I think she is getting worse. Also the pain in her legs seems to be getting worse. She has her 6 month check up at the cardiologist today,it will be very interesting to see what he says.I have a family member thats married to a chief of staff of a local e.r. and Im gonna contact them and see what his thoughts are and if he knows of anyone that specializes in treatment. Looking over all the posts,I have realized this board is a case study just begging to happen. Thanks.Please pray for us.Im still new to this and sometimes I am desperate for help.But I feel so helpless.

I'm wondering if you meant thyroid disease or all 3 conditions? I'm so sorry your daughter is going thru all of this and wanted to say welcome to the forum. kim Thanks for the welcome Kim.The Neuroligist is checking for all 3 conditions.Its actually a recheck,her ped. already checked her for these and also checked her b12,potassium,menengitis, and so many other things I cant name them.

They did actually check for EB and mono(twice).Thanks, any other ideas?I appreciate your help.

Thanks for all the replys,sorry for the quick post last night.Her pediatrician didnt actually diagnose her.He referred her to a ped. neuroligist.We waited 2 months for that appointment.Not sure if she did the strep titers(sp?) she ordered lots of tests though.Some were retests.She is checking for Lupus,RA,and thyroid disese(which I have).These results should be back in 3 days. In dec. my daughter started twitching her eyes.Then she started having extreme pressure behind her eyes along with headaches.In Jan. the numbness started.Her toes on her left foot,then the foot and leg.Next comes the other foot/leg.Next hands then arms.Sometimes her ears are numb too.She also got VERY weak.Her white blood count dropped from 5,000 to 1,000.Drs. said she had a viral infection.Took 2 weeks to get those back to normal. She lost 8 pounds in 2 weeks. Her handwriting has become awful.She does not want to be alone at night.Shes not afraid,just lonely.This child (in the past) has always been so independent and self sufficient.But the clingyness only happens at night. She actually cries some nights b/c her legs are so stiff and painful.this from a little girl who has a very high tolerance for pain. Now she has started obsessing about germs.She doesnt want anyone but me to touch her food or 'breathe" on it. Four years ago she was diagnosed with Mitral Valve Prolapse.Im now wondering if PANDAS was already in her then,we just didnt know it yet. The neuro mentioned Topamax for the migraines too.We decided against it,I had a bad experience with it. I have been searching for info on supplements,all I have found is omega 3 but I cant even find the correct dosge. Thank you all for your support.I dont feel so alone now.

Hello,I am desperate.My 9 rear old daughter has been diagnosed with PANDAS by a ped. neuroloigist.But the doctor didnt offer any help at all other than antidepressants and anti seizure meds. I need a doctor that is familiar with the disorder.I live in east tennessee and I am close to sw virginia. Any help is appreciated