To avoid turning this into a horrifically long novel, I’m going to try to approach this as a questionnaire. Since this nightmare began, we’ve had various questionnaires to fill out – so I’m becoming a pro. Of course I’m always willing to answer any questions you might have.
Onset of symptoms date: Approximately around Spring of 2006.
Symptoms Started As: Teachers noted that she had absolutely no sense of personal space and that it was starting to upset the children around her. She started running out of the classroom and being more defiant. Crying spells and self-mutilation (she picked her lip until it bled).
First Response: Took DD to her pediatrician, recommended a strep test despite the fact that there were no other typical symptoms such as fever, or nausea. The test came back positive and antibiotics were prescribed.
Reoccurrence of Symptoms: About four weeks into Kindergarten (October 2006), DD began to have meltdowns in class. The behaviors were significantly more violent and full of rage. Those behaviors included: Screaming, Kicking, Crying, Spitting, Hitting and Throwing and Tearing Items. It would take her anywhere from 10 to 45 minutes to “come down”. Afterwards she would be exhausted, sad and appeared not to remember what happened. Teachers would say that it was like the “headlights were out”. I thought the same when I witnessed the first meltdown, except I added that I also felt she looked like she had just gone through a seizure or was possessed temporarily.
Doctors Seen: I can’t recall the specific dates and in which order but DD saw the following types of doctors:
The teachers still stayed in close contact – just in case.
School in our area begins in mid-August. DD started this year (2008) doing fantastic in the initial weeks of 2nd grade. Around mid-October we started noticing an immediate “tanking” of her “normal” mood and self. Her meltdown was different this time. At first it didn’t last long (maybe 10 minutes). This time is was a more silent and angry fit, more calculated. We hoped it was just a fluke and that she would be OK, but unfortunately her fits were turning for the worst. We took her back to Dr. Koch and he again prescribed antibiotics. This time it doesn’t appear to be working. Perhaps it’s just holding her at bay. Her fits have returned to mega-meltdowns and we’re back on the warpath of getting her help.
Other Notes: DD has had multiple blood tests performed on her. I believe they were called ASO/Titers. The levels were astronomical. I wish I had those on hand to give you specifics but I don’t have them. I just know that one was supposed to be under 100 or 250 and her numbers were 800+, and then another was supposed to be between 100 and 250, or something, and it was over 1000+. Throughout the long term course of antibiotics, the Dr. ordered for intermittent testing and we were showing the levels were coming down, but extremely slowly, and not by much. We had another test ordered recently (October 2008) and the levels were still above normal, but were in the 500’s – so not as astronomical.
The school, my husband and I decided that we want to retest her for the Child Studies testing. The purpose for the retest is to see whether or not special accommodations need to be made at her school. Right now the teachers are struggling with DD running out of the classroom and they can’t just leave their class to chase after her. They have to call to the office and get help. If the child studies testing showed a need for a classroom assistant to be added, they’d have to do it. It’s not a label I like associated with my daughter, but we’re at our wits end. We FINALLY got her upgraded to the “big girl bus” after riding the special needs bus for two years. The reason they put her on that bus was because DD refused to stay seated and they didn’t have any adult assistants to help keep her seated on the big bus. For now the big bus arrangement seems to be working, but just barely. They’ve allowed her to bring her Nintendo DS game to play and keep her occupied.
We all agree that DD is a brilliant and sweet little girl. She is nurturing to the other students, and enjoys being creative. When she’s in a “slump” we notice that all of her moods are heightened – she’ll be extremely sweet, or extremely OCD (cleaning mostly), extremely angry, etc. It feels bi-polar but it’s obvious to us that it’s not. The antibiotics (on the first go) seemed to be really helping, and kept the ugliness at bay. In fact we felt we had conquered the beast.
To us, that shows us that she doesn’t need psychotropic medications to turn her into a zombie for the long term benefit of others around her.