| MacKenzie's Journal 2 | |||
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Monday, November 01, 2004 ( 10:30 AM ) Beth Life is hard right now. MacKenzie, although she hasn't had a "real seizure" in well over a year, is having behavior problems again. Those that have followed MacKenzie's story know that she has had behavior problems almost all of her life. These are just getting worse now. The school change did wonders for her behavior last year; I think also the fact that she was in a K,1,2,3 inclusion room. This year = different story. MacKenzie is in a straight 4th grade classroom, struggling academically and part of it may be because she is no longer going to a resource room to get extra help in spelling, reading and math. While her reading is up to grade level, she continues to spell phonetically (it's almost impossible to read what she writes) and math, well, lets just say, is not her subject at all. She's got the hang of addition, even larger numbers, but she cannot remember what subtraction is. Forget multiplication all together - she can't do it, but was doing small numbers like 2's and 3's last year - not this year. Behavior? It's horrendous. She intentionally antagonizes her sisters, as well as her classmates. She cannot get along with almost everyone right now. She picks fights with her classmates, her teachers, me, her step-dad, and both of her sisters. She absolutely refuses to do her classwork or anything asked of her for that matter. Better watch out if she gets angry... she has lashed out physically at me, Sarah, her regular classroom teacher, her art teacher (art is her favorite subject). I could go on and on. We are seeking professional help again. It is a miracle she has not gotten herself suspended from school at least a half a dozen times in the past two weeks. The teacher did have enough of her last week and sent her home early (more than 1/2 a day early). Her new school is very tolerant, much more so than her other school. She also missed her Halloween class party and the school parade last Friday because she attacked her teacher. Mac and I had an appointment with a psychiatrist last Wednesday morning. After a telephone intake with a psychiatric nurse and speaking with MacKenzie's pediatrician, another psychologist, and Mac's epilepsy doctor, they are leaning towards a dual diagnosis of Oppositional Defiance Disorder and Prader-Willi. Mac doesn't have most of the physicial characteristics that go with Prader-Willi (with the exception of the almond shaped eyes, the thin upper lip and downturned corners of the mouth and possibly small feet and hands), but she fits almost every other behavioral catagory that is required for a diagnosis. I will attach a link to the P-W site for you to see what I am talking about. Mac will also undergo neuropsych testing again in the near future, and they have started her on an atypical anti-psychotic drug to see if we can get a handle on the behavior. She only started the Rispiradol this past Thursday night; we haven't seen too much of a change yet. Psychiatric treatment with behavior modification is a must, but cannot guarantee to help. She will more than likely be put in an emotional impairment (EI) classroom in the very near future, even without a P-W diagnosis. Some may be interested to hear that P-W mimics some of the Asperger's Autism behaviors. My oldest sister is a teacher in Georgia and has dealt with children with this disorder before. Every day is a struggle, either at home or at school, with her getting so out of control, cursing, hitting, blatant defiance of what she is asked or told to do, stealing, lying, intentially antagonizing her sisters and other classmates. Not to mention her obsession with food. She always wants to know when she is eating next, what is she having, and if it doesn't "satisfy" what her cravings are at the moment, a temper tantrum is sure to ensue. The food thing is one of the major criteria for P-W. Dr. Chugani, the epilepsy doctor, ordered the blood tests for the P-W. Not sure if we are doing them here or in Detroit at his hospital. My boss, a pediatric cardiologist, brought in some of his literature and books on P-W and we went over it with a fine tooth comb, and he was able to determine that she has enough characteristics to fit a definitive diagnosis of P-W. This is coming from a pediatric cardiologist. We also found that in only 50% of the P-W cases do the kids have the abnormal 15th chromosome, so the blood test may not make any difference. I have also read that 70% of the children diagnosed with P-W have the chromosome. Looks like it comes mostly from the paternal side. I will not be pointing any fingers, because if I point one finger, I have three pointing back at me (try it, it's true). Mac has started to threaten to harm herself as well. She, in very intricate detail, told me in a fit of anger how she was going to kill herself a week ago. Please just keep her in your prayers. This scares me more than anything. Here's the link to the site, the main page with the characteristics...... http://www.pwsausa.org/syndrome/basicfac.htm You will definitely find that some of them are not MacKenzie, but be able to say, yup, that's definitely MacKenzie. P.S. My family has a history of bi-polar disorder... that hasn't been ruled out either, but they don't think she fits the main criteria. I just want a diagnosis. I don't care what they say she has (or is.... if she's an alien, just tell me how to deal with it please!). #
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