Kayanne

I have 4 children, and 3 of them have tested positive for strep 3 times (rapid-strep test). She is the only one who tested positive a fouth time. After the second round of positive strep tests, I asked if I should return for a follow-up, and I was told no. By the third round, the kids were put on Rifampin, and I was told that would take care of it. I even had my sons (ages 4 & 1-1/2) in for their well visits after the my 4 year old finished the Rifampin, and the doctor said their throats looked "great", so he wouldn't do a rapid-strep test. I then breathed a sigh of relief, and began to focus on my daughter's issues. Ironically, My Husband and I were in to see the same doctor for a "talk" consult about Becca earlier that day. I thought the "infection" part was over. On the morning of Friday, May 8th, my daughter mentioned just once that her throat "maybe hurts a little". That afternoon, was the last time she tested positive. On the following Monday, I insisted that the doctor do a rapid-strep on my other three children, and when they were negative, I insisted that he also send out a culture. They also came back a negative. So it seems that the Rifampin did work for the other 2 (my baby never tested postive, but was perscribed a 5 day course of OMNICEF on March 11 because his throat also looked red). But to answer your question simply, no, I have no evidence that she was ever free from the initial infection. I do not know what you mean by "antibiotic effect". Could you please clarify this for me? As far as blood tests, the doctor ordered CBC, C-reactive protein, strep titers and thyroid. When I asked if we should do a screening for any vitamin or mineral deficancies, he kind of "snorted"--I believe that I do want to find a Nautroupathic MD to run a nutritional anaylsis. (pardon my spelling) Thanks for your words of encourgement! - edited to remove personal information

My 6 yr old daughter started all-day kindergarten this year, and was doing very well. When I met with her teacher at the first marking period in November 2008 she said, “This conference is 100% positive.” As the year progressed, there was nothing to indicate that there were any problems. Starting on March 11, 2009, she has had four rapid-strep tests come back as positive. She has been given OMNICEF, AMOXICILLIN, AUGMENTIN combined with RIFAMPIN, and finally CLINDAMYCIN. We are awaiting the results of a throat culture taken on May 22—the doctor’s office opens on Tuesday—although I will try to call tomorrow. We started to get "frustrated" with her sometime around the middle/end of March, beginning of April for the following behaviors (some were not new): • She began to confess thoughts, and things that were very minor. She had excessive and unjustified guilt (this was not new, however it was more pronounced). • She would be very emotional. She would have a crying "fit" over something very small, and refuse to tell us why. (This also was not a new behavior; however, in the past, we always knew what she was crying about. This time it was much more frequent...and actually, she hadn’t had a “fit” in a long time.) • She couldn't make a decision--she wouldn't choose between two things, she wouldn't say "yes" or "no". She kept saying "maybe, I don't know" or "maybe, yes or maybe no." (completely new behavior) • She began to take a really long time in the bathroom, and she would just frequently sit and cry...we needed to tell her to finish up. (Completely new behavior). Because some of her behaviors were not new, and my husband and his family have a history of anxiety (and as a child he had a problem with excessive guilt), we were not alarmed right away. April 21, 2009--I was approached by my daughter's teacher because she was concerned that ever since she came back from Easter Break (April 14, 2009) there has been a real change in her behavior. That really got the ball rolling. We met with her doctor, teacher and school counselor. We met with and set up appointments with a cognitive behavioral therapist. The pediatrician told us about PANDAS, and he believed some of her behavior could be thought of as obsessive thoughts. Blood tests were ordered, and she was found to have a high strep titer count. We were referred to CHOP (Children’s Hospital of Philadelphia). The appointment was set up with the Infectious Diseases specialist. I called down to CHOP to be sure that this was the right department for PANDAS. I was assured that it was. May 22, 2009—we went to CHOP. First we met with 2 female residents. We gave them her medical file, lab results and emails from her kindergarten teacher. We also spoke at length about her changes in behavior. However, they really kept steering us back to medical history. Then they examined her, and left to confer with the specialist. The doctor then came in with an additional resident (specialist and 3 residents) and did his own examination of my daughter. She passed with flying colors. His professional opinion was that because she didn’t meet the criteria set out by Susan Swedo he doesn’t believe that she has PANDAS. He said to set her up with a pediatric psychiatrist. He then began to explain that either way, there is no real treatment. IVIG and Plasmapheresis are very risky with side effects, and not really helpful. And the use of long term antibiotics has not been proven to be effective—based on some study that switched from antibiotics to a placebo, only to find no change in behavior. Needless to say, my husband and I are beyond frustrated—we “wasted” time waiting for this appointment to see a specialist about PANDAS. Only to be told that even if she did have it, there is nothing he can do…Why would you even meet and examine a child with possible PANDAS, if you know that there is no course of treatment? I feel like she was used as a lab rat, and that we got nothing but a “brush off”. What do I do from here? My heart is telling me that this is PANDAS! I’m really scared. Her behaviors seem to have worsened. She is really jumpy/startles easily. She seems to have difficulty with short term memory. She needs to be prompted to do everything. She just stares into space. I tried to get her to draw or write, and she couldn’t do that unless I told her each word to write. She will run and laugh with her younger brother, but that is the extent of her playing. Over the weekend, we met with my husband’s family at a campground for a few hours, and she wouldn’t play on the playground without a lot of coaxing. Many members of the family could easily see the changes in her. Does anyone have any input? I would greatly appreciate it. I live North of Philadelphia, PA. Thank you!! - edited on to remove personal information