MississippiMom

How much does the IVIG cost and where did you have it done? Was Dr. Benaim involved in that in any way?

I'm glad to be here too!

Dr. Benaim explained the Flu Mist this way: When a PANDAS child gets the flu it is "10 times worse" than when a non-PANDAS child gets it. Because of that, she believes the good outweighs the bad. She has apparently seen nightmare situations. Anyway, so far, so good. Tomorrow we begin Augmentin 875 mgs for one month. If it works well, we get a script for one year. If not she has other options. There does not seem to have been any negative repercussions from the Flu Mist. She does not give the shot to PANDAS patients. I didn't ask why that was. It was a big day and that question just didn't get asked. I have only been on this forum since April 2012 (I think). It just makes sense to me that there will be many protocols from the doctors chasing this disease. They learn from our children. Dr. Benaim seems sincerely concerned about the PANDAS children. I think unless the protocol is overtly strange, we owe it to her and DD to listen to her and try it. Honestly, in this case it couldn't get much worse. We are already pulling our hair out and hanging by our fingernails off the PANDAS cliff. Any movement in the forward direction is welcome at this point. I'm just so tired! So, for now, we are praying for the best possible results from Augmentin! I will try to keep up with this forum even after I go back to nursing school in a couple of weeks. It's a good place to bounce ideas around. Cindy in Mississippi DD 11

So, we finally got in to see the ONLY Pandas pediatrician in Memphis this week and were so glad just to be in the room with a doctor that wasn't looking at all of us like we were green slimy aliens! Our daughter has been seeing two doctors, one a therapist, and the other a psychiatrist, since I first started posting here in April 2012. SOME things have gotten better, but most things have just morphed from one symptom to another, with the new one often times worse than the previous one. The doctor, Elisa Benaim, wasn't taking any new PANDAS patients, but she finally agreed to see our daughter. She spent a long time with us and really dug into DDs history. She said we are almost definitely dealing with PANDAS, although she could not say 100% positive just yet. The first thing she did was give her the flu mist and a 30-day round of augmentin which she begins taking on Monday. She's taking Zoloft and Trileptal, which is supposed to boost the Zoloft. It's given for seizures and BiPolar disorder as well. DD's birthmother was bipolar. I pray that isn't what we are dealing with, but as it might be, I suppose the Trileptal is good to have in her system. Life has been just awful, really-really hard, these past few months. Her OCD symptoms are escalating. I am her primary trigger, and therefore the target of most of her rage. All the tics are gone now, but we are having rage issues in their place. PANDAS is a disease with which you cannot become comfortable. It is constantly changing so you just never know what you might see next. On top of everything, our family unit is crumbling under the strain of me being in school and not having an income, my partner's mother being in the hospice stage of cancer, and our DD having PANDAS. I probably don't need to tell you THAT is NOT helping DD! She HATES HATES HATES change of any kind. She was always like that even before we noticed the tics. She thinks she can "fix" it, but, of course, she cannot. I personally think we should just hang on and see how it all washes out, but I am not the one making the push, so it is what it is. I cry myself to sleep almost every night. Surely there is a silver lining somewhere! Hopefully the Augmentin will do the trick. I can say that we have both noticed that she really is much more like the little girl we remember when she is on antibiotics. We are supposed to keep a daily log of what we witness with the Augmentin and Dr. Benaim will take it from there. She mentioned other protocols, but this is where she starts, and it'll be just fine with me if I never have to find out what the other ones are! Here's to 2013 being the year things go back to some type of normalcy in our household!!!! Cindy in Mississippi Daughter 11