SurfMom

Random notes while cleaning the kitchen..... I am reading all of your posts like new-found treasure maps. Very, very helpful. ADD presence is helpful. We had never seen this before and it is actually frustrating her as she is much aware of the fact that she is falling behind due to her being out of school for a couple of days but being unable to focus long enough to get it done. We will definitely pursue Lyme, Myco, EBV and I will educate myself on each of those tonight. Thanks for the NIMH study. Unfortunately it is limited to age 12. A shame since she exhibited every single symptom. DH and I believe she is one of the rare over 12's because she is a late bloomer, and petite at 5'3" and a tad over 90lbs. I am in the dark about the molecular/chemical processes involved with the abx but I am learning quickly. Appreciate the specifics on each.

We are still just starting the process. Before the grand episode that led us to the PANDAS diagnosis, Sierra had just been diagnosed with ADD and is still exhibiting severe inattention (new behavior). Questions: 1. Did any of you see an onset of ADD or ADHD in conjunction with the onset of OCD/Tics? 2. When or did you begin ADD medications in combination with other treatments (abx, Motrin)? 3. Are any of you seeing that ADD/ADHD is more episodic in that it wanes as the other PANDAS symptoms wane? Thanks in advance!

That you all are one step ahead of us sure helps validate the steps in our journey! We were fortunate on the first hunch and phone call to fin a physician who has already treated a PANDAS patient! Sierra has an appointment on Thursday. We are grateful that we have found a willing and experienced physician, bit We have also already started the new patient process in hopes of, as ko kindly offered, getting on the cancellation list. My husband is calling Dr. T now. In trying to keep my humor about us, DD had a sliding episode yesterday. "It's a good thing we are famous since we are on TV all the time." I said, "Sierra, I want you to think. Why would we be on TV all the time or famous." She replied, "Because we are outside all the time....and you didn't look very good on TV, Mom." Ouch. Remind me I need foundation and mascara before I go running.

Good morning! I am up in those hours you are all familiar with, waiting for Sierra (pseudonym) to wake up hoping for a bit of improvement. THANK YOU, THANK YOU for the information on Tylenol. We will start the day with Motrin with the proper dosage. The abx is going to be a delay for a day or two but I too am concerned that we are on the wrong path with amoxicillin. And, yes, we dropped her immediately off Zoloft with the PANDAS diagnosis. Thanks on that heads up too! As many of you may have experienced, I am already getting resistance from physicians. Her pediatrician basically let me know I was a neurotic mother for requesting her to be seen this week (she has yet to see anyone post ER) and to sit back for a few weeks until the amoxicillin does its work. After the course of amoxi she will see DD in 3-4 weeks for another titer screen. Uh, no she wont. She is fired. By then she will have a pediatrician who remembers that her job is to promptly treat and follow-up with her young patients, and understand the level of concern that parents rightfully have for their children whose brains are under siege. We also were told by our (now former) family physician while we were asking to be screened for strep that PANDAS does not exist because it does not have official designation. Stunned, I quipped, "Then it must be confusing to parents whose newborns don't exist until they have an official designation on their birth certificates." We are on the phone this morning with Dr. M and Dr. T. I am already very touched by your generosity and kindness to share your advice and expertise. This is not a baton any of us want to carry but I assure you I will gladly take it and pass along every bit of information I have as we make our way around the track. I just hope that for each of our kids, the laps are few in number. She is up, a bit more sunny, asking for her first OCD shower of the day but says she is hungry...in a program officially called "Stuff the Turkey" to add back the weight she lost in the last few weeks. Back in bit .

Our 15 year old daughter, adopted at age three from Russia, unknown health history, perfect health up to six months ago. Straight A student, athlete. World's easiest kid to raise. Strep infection in March, round of amoxicillin 500 mg. No problems since. Two weeks ago she started have trouble with school work, expressed tension with friends, performance in sports deteriorating. In a matter of a week she shows every sign of PANDAS (which I had never heard of), except the most prevalent: OCD and tics. Bizarre behavior sends us to ER thinking her drinks at school are being laced with drugs. Psychiatrist things depression puts her on low dose of Zoloft. Two days later the school calls and says her speech is incoherent and gait is strange, pediatrician worries about neurology...possible brain bleed or tumor. On the way to the hospital we notice strange tics and she is worried about germs and dog hair in the car. In a matter of hours at the ER she has OCD and tics that most would not pick up on but I recognize immediately. Her whole facial expressions have changed. While waiting for a CAT scan, I say to the doctor that she has been so healthy, only one thing ever which was a bout of strep. Stops in his tracks, orders the titers and though without symptoms, she tests positive for strep antibodies. Just as we are checking out, her fever spikes for the first time: strep. We are told to add Tylenol to her regimen to help with fever/headaches. Now on day three of amoxicillin 875 mg. We are seeing minor improvements but today is a bit of a setback from yesterday. We held back on the Tylenol yesterday as her headache and fever began to subside and coincidentally, her moods and OCD (obsessed with wrist pain and hand washing) get somewhat worse. So here we are, ticking along the year-long minutes, praying for improvement, self-educating and looking for experts. Her pediatrician is already saying that this should clear up with one dose of antibiotics and not to believe everything I read on the internet. We are contacting Dr. Murphy in the morning as she is our closest expert. I would like to hear from you all about positive/negative experiences but will also search this sight. Our gut feelings not to attribute her illness to hormones, PMS, typical teen behavior etc. led us to a fast diagnosis just as the onset of the OCD and Tourette's kicked in. We are going to be as diligent in treating this as a systemic ongoing condition. In other words, we plan to treat and manage the cause not the symptoms. Thanks for the platform to share information and suggestions. I am dressed in armor and ready for war . Thanks to all of you in advance!