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Case #7 – Girl, Age 7
Onset: Spring 2006
Treatment: Proph. Abx
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:
- Pediatrician (Dr. LC)
Dr. LC has been a large support for us as she’s been able to provide a lot of names of other doctors that she felt might be able to help DD. While Dr. LC believes that there is something to PANDAS, she felt that DD needed a psychiatrist more.
- Psychologist – Dr. N.M.
We never felt like we connected with this psychologist and didn’t use her for very long. DD threw a fit in her office that lasted the majority of the appointment. Our usual response towards negative behavior would have been time outs, counting down, and then as a final resort, a couple firm swats to her rear-end. The psychologist said it was OK if we spanked her, but we never felt comfortable in doing so, the fit went on. We’ve noticed even to this day that the only thing that seems to prevent a fit, or stop one from continuing (because she can’t seem to ‘come down’ on her own), is if we give her a good swat. The school unfortunately doesn’t have the same luxury and has to endure the fit to it’s fullest.
- School Psychologist
Was a fantastic resource at DD’s school. She suggested that we begin “Child Study Sessions” at school. My husband and I would go to the school every couple of weeks to discuss how we can move forward and make sure we didn’t leave DD behind in her education. We would meet with herself, the principal, the assistant principal, guidance counselor, special education teacher and her grade teacher. A “Child Studies Testing” was recommended and approved. The testing reflected that DD had considerable amounts of anxiety and stress, and they thought maybe even bi-polar. They felt that she was not ADD or ADHD.
- Psychiatrist – Dr. SJ
Dr. SJ saw DD a few times and we discussed her condition at length. She felt that DD did not need to be put on any psychotropic meds. She didn’t believe that this was a mental condition, and felt that it was more medical.
- Pediatric Neurologist – Dr. DT
Dr. DT was recommended to us because of the way we described DD’s fits – seizure like. After meeting with us he recommended a 20 minute EEG. Those results were indicative of seizure like patterns in her sleep part of her brain. This caused Dr. DT to request a 24 hour EEG. The results were the same, and he suggested that we do an MRI. The MRI was completed but they didn’t find anything definitive on the MRI to suggest that she was having seizures. He felt that there was nothing more he could do for us. This all occurred in early 2007.
- Pediatric Ears Nose Throat – Dr. JR
We were tossing around the idea of having DD get a tonsillectomy because of her frequent strep throat infections. We had e-mailed Dr. SS (NIMH) to see if she had any thoughts on this procedure and it was hard for her to say. She’d seen it both ways where it helped, and where it didn’t matter if the child’s tonsils were removed. We went ahead and decided to go forward with the procedure. DD had her tonsillectomy in May 2007.
- Psychologist (Cognitive Behavioral Therapist) – Dr. HB
Around September 2007 we started having significant behavioral problems again. We were referred to see a cognitive behavioral therapist for DD. Offhand I can’t recall who suggested this route. After Dr. HB saw us two or three times, she felt that there wasn’t anything we were not already doing. She felt that DD’s problems stemmed from something medical and not mental.
- Pediatric Infectious Disease Specialist – Dr. WK
We felt that Psychologists and Psychiatrists weren’t helping so we got another recommendation from our pediatrician to see Infectious Disease specialist Dr. WK. The first appointment was scheduled mid-September 2007. Dr. WK recommended putting DD on a long-term course of antibiotics. At first he recommended 6 months, but at that time we decided that we would continue through until the end of the school year (May 2008). DD’s antibiotics ended on May 2008 as discussed and she was responding exceptionally well. We had our ‘normal’ child back.
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.
- Pediatric Sleep Neurologist – Dr. DL
We’ve decided to try the neurologist route again in hopes that they can offer a second opinion. Her first appointment with the doctor is Wednesday, November 19th. It will most likely be a consultation and knowledge transfer session.
- Pediatric Neurologist – Dr. LM
We may not need Dr. LM if Dr. L. is able to help. The soonest appointment we were able to get is slated for February 23rd, 2009.
- Psychiatrist – Dr. BS
We’re working on getting Dr. BS the information she wanted on DD’s history – essentially we’re giving her everything we’re telling you. We don’t have an appointment yet, but hope to soon. From what DD’s pediatrician has said, she has experience with PANDAS children. We’ll see.
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.
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