| MacKenzie's Journal 2 | |||
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Tuesday, February 01, 2005 ( 7:10 PM ) Beth K.. future updates can be found here, but you may find more on the new Xanga site which can be found here.... http://www.xanga.com/home.aspx?user=mackenzies_journal # (0) comments ( 6:32 PM ) Beth Respite care.......... that's what they call it. We're using it tonight. Try to update you by cutting and pasting from my other journals... January 10th: Saw Dr. Chugani today. He took Mac off the Risperdal cuz she has gained more than 15 lbs in just a little over 2 months on it. Not good. Started her on Clonadine which is actually an anti-hypertensive for children, but for some reason has mood control qualities too. We'll see if it works. January 12: There was a HUGE accident on the freeways here.. did you guys hear about it in the national news? It was on I-96 outside of Lansing.. due to fog.. something like 200 cars involved on both east and west bound lanes. Two people died sadly, hundreds were injured, there were lots of people driving WAY too fast. HEY EVERYONE.. if there is fog.. SLOW DOWN, turn on your headlights on LOW BEAMS, not HIGH beams, and get off the friggin cell phones! We have video of a woman passing a cop car, talking on the cell phone, going 25 miles an hour faster than she should have been, and slamming into the backs of three cars! STUPID. OY! January 14th, 2005: I wrote: Today, get up for work, car doors are frozen shut. Thankfully I finally got my driver's side door open, but Sarah had to ride in the back, like I really was MOM TAXI. She didn't seem to mind too much. Work, sump pump alarm still going off, work, called the plumbers, home for meeting with Errin (Mac's therapist), during meeting get a call from Mac (long story short) she leaves school, runs home, makes it safely thank God!, but cry fest cuz she's been called names at school, Errin sees first hand the crapola we get dished out from her on an almost daily basis, solve that crisis, come back to work, Scott takes Mac back to school. Mac calls later and sounds totally different (is she really Sybill?!) and says she had a good rest of the day at school. (?? huh? yeah, Sybill) Sarah is at an away game tonight cheering.. maybe they will win again.. doubt it tho. Lots of laughing and goofing off at work today.. stomach hurts. Yeah. Well, hello cuz. Tired of crises. Need a break. Maybe I will just DRINK the bottle of Calgon. Think it will work? January 17th: K, update time. Friday.. pretty interesting day in regards to miss MacKenzie. Home for "intensive home-based therapy" with Errin... get a call from Mac that she is having a bad day and blah blah blah. Try to talk her into going back to class.. blah blah...she ends up RUNNING away from the school and COMES HOME! OMGa! She had to CROSS Saginaw to get here. The school had the NERVE of calling and asking me "is she home yet" WHAT? OMG!!! Scott somehow talks her into going back after we talk to her and she bawls her eyes out. She calls later "Mommy, I had a good rest of the day at school." Good God! She IS Sybil. Friday night.. stomache hurts. Rest. (I have NO idea what I am going to do with Mac) K, now Sunday: Slept in kinda late. Well, you know.. up late reading (yeah, right.. I can't sleep). Sarah, Mac, JJ and I go to the mall to spend Mac's allowance on Bertie Bott's All Flavored Beans (GROSS). Jadyn kept getting the nasty ones like sardine, vomit, grass. Mac got ones like spagetti, lemon drop, good ones. Hmmmm... go figure. Sarah finally spent some of her gift card at AE, but we had to go to Eastwood for her to do that. Silly girl.. can't spend money when she has it, can spend all MY money when she doesn't have her own. Go figure. Went to the Bilary (thats how Mac says it) to get the other movie for Sarah's xtra credit and a few other movies to watch. Then we went to Barnes and Noble for books. Read the most hilarious book in the kids section... "Walter, the Farting Dog". IT WAS GREAT! Found another "Pigeon" book too.. those are funny too. There was an ice skating rink in the parking lot, didn't park on it cuz we would have slipped around and afraid we couldn't get out. Someone had parked there when we left. Whatever. Came home.. Sarah did MORE studying for her finals (she better do GOOD!). Made homemade mac and cheese to go with Scott's burgers for din din. Then MacKenzie thought it would be a good idea to state that she wished she had a gun cuz she would rather kill her self cuz we wouldn't let her ride the Razor scooter in the house anymore that night. So, 1-1/2 hours of talking about hurting herself and "I would rather go to the hospital".. finally she went to bed. She exhausts me.. completely. I think I made the mistake of telling her that she had been good while we were standing in B & N. It started pretty much right after that. After Mac went to bed, Sarah and I retreated to the basement to watch Shakespeare in Love. AWESOME movie. January 19: Yeah... so today. No, back to yesterday... Mac had a B-A-D day at school and I got like 20 bagillion telephones calls from her, the school secretary, the school SAP (yeah, thats really what her title is) (acts that way sometimes too), as well as the teacher. They just really don't know how to deal with her behavior sometimes, and I have NO idea what to tell them (h e double hockey sticks... I can't do much better at home sometimes with her). I ended up having to call Errin to get her advice, she calls me back and gives me some good things to tell the school (basically, in a nut shell, to "deal with it") and they still kept calling. Work ends, I come home, and we are still having issues. I took the girls to MackyDonalds for dinner.. yuck, but yeah. They enjoyed it kinda. Anyway.. Mac got suspended from school for coloring on her desk! What ever! She is out until Monday. Good grief Charlie Brown! We are having lots of problems.. more than I could ever write down, cuz I have to tell so many people about it so many times a day. I honestly get tired of repeating it. But the behavior is such a big issue at this point.. the new medication isn't working and I don't know what to do. HELP! January 20th, 2005: I wrote.........MacKenzie is hanging with me at work today, cuz she got suspended from school (for freakin coloring on a desk!!! good grief!). They are just tired of her behavior and didn't want to deal with it anymore. Wish that I could "suspend" her too.. but hey! I'm the Mom.... can't do that! Anyway, she goes to her Dad's Friday after going to her first outing with the "Girls Group". Hopefully that will be fun for her and she will be able to get that much needed socialization that she lacks. With her ODD, ADD, sensory integration disorder, and the all new whatever it is Obsessive Difficult Temperament.... who knows what we will do with her. January 23, 2005: I wrote.....Have to take MacKenzie to school tomorrow so that she can "clean" the desk that she colored on that got her suspended...hmm...this is the deskthat MacKenzie colored onthat got her suspendedso she could clean the deskthat MacKenzie colored on January 25, 2005: Mac's emergency IEP was today.. no self contained classroom yet. Apparently we have to jump through the "right" hoops to get somewhere.. anywhere. A residential program was actually suggested for Mac? What the?! But that was shot down very quickly. Homicidal thoughts? Are you freakin kidding? Whatever. January 28: yeah.. had to physically restrain Mac on Wednesday night. Not fun. Weird things are happening with her right now. Today: She got suspended from school again 2 days later. She started a "new" class on Monday and today is Tuesday. She is spending the night at a "home" that provides respite care for children through CMH, cuz last night she spend 1 hour plus in a state of "evilness" for lack of a better word drawing pictures of the word "KILL" and little girls or a female stick figure holding knives with blood dripping off, or "kill them" written above, faces marked out. She also wouldn't say a word other than a cuss word or do something to antagonize Jadyn. She also shook Isabelle (one of our kittens) so hard that the cat threw up. We (well Scott really) removed the knives, forks, and any other sharp item we could think of from the house last night. Jadyn slept in our room and Sarah was afraid to go to sleep. Me too.. I didn't really sleep. MacKenzie did tho. She doesn't really remember what happened last night. ????? how Today at school, Mac ran from the teacher after refusing to do her "behavior plan" cuz she said the s-h-i-t word 20 plus times. The principal found her in a locker.. this is after having a 'good' morning. I called Errin.. just went and got her from the school and admitted her to respite care for the night. She was agitated when I picked her up, during the intake, and sad to say, hopefully will show some of the behavior for the staff there like she did last night. I don't know if an inpatient hospitalization is necessary... but it is close. BTW: Seizures are back.. big time. She had no less than 30 myoclonics in her sleep during a nap in my lap last Friday while Errin was here. Have left a message for Chugani. We see the psychiatrist Friday. DOES ANYONE HAVE ANY SUGGESTIONS! HELP!!!!! # (1) comments Tuesday, December 07, 2004 ( 10:56 AM ) Beth Counseling. Counseling is a good thing. It's helping me at the least. Odd things have happened in the past few weeks... one being running across one of MacKenzie's friends from Post Oak. We took the kids to the Silver Bell's parade - it was drizzling the entire time but warm, oddly enough - and on the walk back home, Mac was upset because the Peanut Shop's line was out the door and down and around the block making a more than an hour wait, so we decided to NOT go that evening and come back the next day. Good thing we did because as we are walking back, we run into one of Mac's most favorite people in the world, Xavier. She hasn't seen him in well over a year, he didn't make her last bday party. As his mom and I are catching up and the kids are playing, I learn that Xavier has been diagnosed with Asperger's autism!! HOLY COW! We exchanged our most recent stories and updates, and also found that they had taken Xavier out of Post Oak and moved him to another school district because of the same issues we were having. Wow. I was and still am floored by this discovery. Xavier invited Mac to his bday party, which was 2 days later and she had a blast. We have promised to make sure that they have more play dates. Wondering if they get along so well because of the issues. What are the odds- two children, same age, same school, Asperger's. Now, I realize that Mac has not been diagnosed with Asperger's, but come on. The odds cannot be extremely high that they would have such similar characteristics, behavior, medical history. What's in the water? environment? Post Oak school? Thanksgiving was nice and pleasant. MacKenzie spent a couple of days with her dad. She has had two good weeks at school. I guess the Risperadal is kicking in? I don't know. The therapist asks me "what would you say has made the difference and made today (or yesterday or whenever) a good day?" I have no frickin' clue! I really don't know what sets her off or makes things good. I do know that she is verbalizing her "feelings" more because of a great chart that Scott made from work. It is a chart of emotion faces, kind of like emoticons, glued to the back of a dry erase board. She is to use it in the fashion of when she gets upset and before she lashes out, she is to look at the faces and see if she can pick the emotion she is feeling. It has worked a few times, and has given her the few seconds on occasion she needs before beating her little sister to a pulp, and has verbalized her feelings by saying "Jadyn! You are making me SO frustrated!" (actually, that was kind of cute to see) There have been other times where she has just looked at the faces to see if she could figure out which emotion she was feeling when she was having a "good day". She likes "ecstatic". I like when she feels "ecstatic". The therapist goes to the school and meets with Mac once a week. It was hard the first two times because Mac either enjoyed being out of the classroom or something, and it made the rest of the day bad for her and the teacher. Now, the therapist goes the hour before lunch so Mac has a kind of cool down period before class starts again. Math sucks. She can't do it. MacKenzie promised a little boy $50 if he would push another little girl off the top of the slide. This was before Thanksgiving. He tried. Was unsuccessful thank God. My daughter, head of the Walnut School Mafia. Head hit student. $50?!!?? Where would she get that?! And he believed her! Oy! MacKenzie got pissed at her teacher for looking at her the "wrong way" per Mac's report. She was asked to go to the office for a cool down, refused, was being escorted out, ran away from the teacher, into the bathroom, locked herself in a stall. I had to leave work and go to the school to help get her out. By the time I arrived, she was sitting in the office. She was suspended for 1-1/2 days for that. That was before the "mafia" incident. Two messages in the past week to Children's neurology regarding results of the genetic testing. No call back. Appointment on Friday with med clinic. I know the psychiatrist from contact through my work place. It is an appointment just for me. Mac goes on Monday then again the following Monday. I have no clue what to expect. Counseling is good. I'm telling on my husband this week! # (0) comments Friday, November 12, 2004 ( 5:19 PM ) Beth Off Subject. MacKenzie's greatGrandma Peacock passed away today. It was not unexpected, but still a surprise nonetheless. She had been ill for many months, in a nursing home, and in the last few weeks was not talking, eating, or doing much of anything. MacKenzie is handling her death fairly well, but she is more concerned about Grandpa Peacock and her Grandma. We all agree that Grandma Peacock is playing a nice round of golf today on Heaven's best golf course. I hope she shoots her best score ever. On a side note, MacKenzie has had two great days at school! She has come home with "awesome day" papers :) # (0) comments Thursday, November 11, 2004 ( 4:19 PM ) Beth Update time. Mac has been on the Risperdal for two weeks now. We have seen a little difference. Some days she is just more mellow and even, others are just as if there was no medication on board. Our first visit with the "therapist" from CMH was here at our house on this past Friday. She seems very nice and willing to help. She has made a referral for us to a Behavior Therapist, as well as to the med clinic and the psychiatrist (4 month waiting list we hear). Main thing, we want to know how to handle the behavior, hopefully how to stop the behavior when it starts because I really don't think that we can stop it before it starts, and we also want a definitive diagnosis. The lab work for the Prader-Willi syndrome is not back yet.. I don't have all my eggs in that basket. Yesterday was MacKenzie's fall conference. Her grades aren't as terrible as one would think. She has a B+ in Reading (3rd grade level), B in Language Arts/Writing, D+ in Spelling (no big surprise there), C+ in Math, B in Science, B in Social Studies, and needs to make improvement in most all aspects such as accepts responsibility, completes and returns homework on time, displays courteous behavior, etc. She had a rotten day at school that day as well. So much so that her teacher is moving her desk. She will be in a corner, by herself. Well, it actually made a difference in class today. The daily note that comes home states that she had an awesome day! All of her homework was turned in, all of her classwork was done and she finished her homework for tonight in class as well. Weird huh? Bad day, good day, bad day, good day. More good than bad please.......... thanks. # (0) comments 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!). # (0) comments Monday, May 03, 2004 ( 7:17 PM ) Beth MacKenzie continues to do so well! Since last entry more than a year ago, MacKenzie got more than 11 months in on the ketogenic diet. She did fall off the "diet-wagon" more than a few times, cheated herself out of ketosis a few times, but overall did well. In mid-September 2003, she once again cheated herself out of ketosis and we (well, me) decided to just take her off the diet. She has not had a seizure since January 2003!!! MacKenzie continues to take Depakote ER twice a day, she has gained a good clip of weight and is more than healthy now. In January of this year after another horrible beginning of the school year at Post Oak, we chose to remove MacKenzie from that school and she is now in her "home school". She has made great strides in learning since her transfer and is now reading on a 5th grade level, is spelling in a mid 3rd to 4th grade level and is doing grade level math work! What a huge difference from last year! At the end of 2nd grade, it was unsure whether 3rd grade would be do-able. Friends are still an issue though. She left behind two "good acquaintences" at the previous elementary and has not made a good friend at the new school yet. BUT she does not have that many "problem" friends either if that makes sense?! I cannot believe I have not updated this....... In April 2003, MacKenzie was named Michigan's 2003 Winning Kid for the Epilepsy Foundation! She was honored in May at a big gala event with a nice spread of good food, an auction, and an awards ceremony. Both Dr. D and Dr. Chugani wrote fabulous letters in support of MacKenzie's nomination! When Mac found out that she was chosen as one of the Winning Kid's, she said "what does that mean?" "Am I going to be the Princess of Epilepsy? Do I get a crown?!" So of course, we tattled on her the EFA of MI, and of course she got a crown! In June 2003, she helped lead the Summer Stroll for Epilepsy at the Detroit Zoo along with Heidi the other Winning Kid! They were too precious in their tiaras! And that was pretty much it. It had been our understanding that there would be quite a few functions that she would be invited to, but she was not. The EFA of MI wrote a fabulous story on Heidi in their Fall 2003 newsletter which prompted me to write a letter of my own. "Hey! What about MY daughter?" is basically what it said. I was a bitter bitter momma I'm sorry to say. That turned into a hasty invitation to meet the Governor of Michigan in her downtown Detroit office in January 2004 during the middle of the week on a school night. We went of course. It was a weird experience, but hopefully one that Mac will never forget. She got to sit in the Governor's chair, Gov. Granholm declared her "queen for the day" and MacKenzie in turn ordered Gov. Granhold to go clean her room! HA! here's the address for the story.. http://www.epilepsyfoundation.org/aboutus/loader.cfm it is at the bottom of page 5 Actually, the Gov. did invite us to go ice skating at her Lansing residence as they had apparently turned their backyard into an ice skating rink. Cool huh? We never went. Did I mention that only one person out of eight invited showed for MacKenzie's birthday party this March. It sucked big balloons for her (oh, and us too because guess who she took it out on). In the meantime, we have learned that MacKenzie is MacKenzie whether she is having seizures or not. It is definitely MUCH better when she is not having seizures, but she still has personality flaws and issues with behavior. She is growing up quickly though and hopefully will continue to grow in her personality and realize that she has got to treat others the way she wants to be treated (huh, sounds like one of the commandments huh?). # (0) comments Sunday, January 12, 2003 ( 5:35 PM ) Beth Yup! I've done it again! MacKenzie is doing FABULOUSLY well on the ketogenic diet! We are well beyond thrilled :) After a very rocky start, and a fall or two off the diet-wagon, she has achieved seizure free! MacKenzie was even nominated by her peers to receive the citizenship award for her classroom in the month of December. In addition, she will be honored by the school district's superintendent on Tuesday, 1/14/03 at the high school auditorium for making such a marked turn around in her behavior and her academics (we have seen a few perfect scores on her spelling tests recently!). Needless to say, she has a very proud set of parents and grandparents! For those considering the ketogenic diet.. go for it! And again, it is VERY difficult, but if you stick with it... you may be as amazed as we are! :) # (0) comments |
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