NurseMomof4

Hi, I read your blog and I am a mom of 4 kids, my 14 you was dx'd with PANDAS a year ago ( I can remember the date). I am sending you that virtual hug and telling you not to give up hope. You are a mom, and you will find that inner strength when it comes to fighting for your kids (maybe not so much strength when it comes to fighting for ourselves, but it's a different ball game when it comes to our children). I am a nurse and I have never been to a naturopath, until this rocked my world. I kept telling my pediatrician that something was wrong and I believed it to be from the strep and Influenza he was just diagnosed with. My son was old enough to tell me something was wrong "in my brain" and the sudden changes were WAY out of character for him. I tried getting into a therapist but the wait was forever. Against my better judgement the pediatrician wanted to try Zoloft and then increased the dose a few days later. It was like pouring gasoline on a fire! My son ended up with Seratonin Syndrome (which I told my peds what it was and we had to get sent into Boston). I wanted all of the SSRI's out of his system and I wanted answers. A friend suggested a Naturopath. I e-mailed him my story, he got us right in and looked at my son and said I am going to help you, and then looked at me and said you need to call MGH tomorrow, I think your son has PANDAS. He was the first person to figure it out. He was amazing.......he put him on supplements to detox his liver, neuro calm, tested his food sensitivities, tested his gut (very high yeast), even did acupuncture which I never thought my son would agree to. He was willing to try anything to feel better. The naturopath really saved us time and got him on the right track. I have been told that siblings are likely to also get PANDAS, and when the child is exposed to a virus or bacteria, they start "flaring" (showing signs of when they first developed it). The one thing I have noticed (and my son verbalized on his own) was that Aleve 2 x /d made a big difference in his behavior and how he felt. I would ask your pediatrician to test both kids for strep (in the blood as well as the throat, nose, rectum). Strep hides in various places...sinuses/ears, etc. That has always been my gripe with pediatricians.........these kids test positive, they give them an antibiotic, but no-one ever tests them after the completion to see if it if fully resolved?! They don't even tell people to change out their childs toothbrush 48 hours after they start the antibiotic so they don't re-infect themselves. Anyway, Strep may not be the only cause, but I would start there and then get in to see an infectious disease doctor for further more in-depth testing for other causes. There is so much more I could say to you, however I really wanted to just tell you that you are on the right path and don't give up! Wishing you better days ahead