tag:blogger.com,1999:blog-36611192011-09-01T13:51:42.573-04:00MacKenzie's Journal 2Interested in finding out how a little girl was diagnosed with epilepsy and how she and her family are coping with the diagnosis and all that comes with it? Here you'll learn all about her: her ''seizure history'', the people in her family, some interesting facts about her, some facts about seizure disorders, and more. To get back to the main pages, click here: http://pages.ivillage.com/bethy767/Epilepsy/index.html Bethnoreply@blogger.comBlogger201100tag:blogger.com,1999:blog-3661119.post-1107304068383861572005-02-01T19:10:00.000-05:002005-02-01T19:27:48.383-05:00K.. 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 Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-1107302905611442242005-02-01T18:32:00.000-05:002005-02-01T19:08:25.610-05:00Respite 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 Bethnoreply@blogger.com1tag:blogger.com,1999:blog-3661119.post-1102436409735901652004-12-07T10:56:00.000-05:002004-12-07T11:20:09.736-05:00Counseling. 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 Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-1100298429331650802004-11-12T17:19:00.000-05:002004-11-12T17:27:09.330-05:00Off 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 isBethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-1100209531989318062004-11-11T16:19:00.000-05:002004-11-11T16:45:31.990-05:00Update 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 theBethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-1099324110664618412004-11-01T10:30:00.000-05:002004-11-01T10:48:30.663-05:00Life 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. ThisBethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-1083626267063796652004-05-03T19:17:00.000-04:002004-05-03T19:29:22.013-04:00MacKenzie 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 Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-873216712003-01-12T17:35:00.000-05:002003-01-12T17:35:50.000-05:00Yup! 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 Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-847888062002-11-19T19:37:00.000-05:002002-11-19T19:37:20.670-05:00Wow! Has it REALLY been that long since I posted?!?!?!.... Yes! It has! MacKenzie did go into the hospital on 9/30/02 for ketogenic diet initiation. We had to "starve" her for 36 hours starting on Sunday... it was pure H*E*double hockey sticks to say the least. Thankfully she went ketotic quickly and was able to eat by Tuesday afternoon. BUT her ratio was/is 4:1 (fats to protein/carbohydrates) Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-814091242002-09-10T12:03:00.000-04:002002-09-10T12:03:20.640-04:00Keto Diet, here we come Yup, the rumors are true. Failed Topamax... onto keto diet. Scott and I are pretty much at our wit's end. The school is just absolutely refusing to accomodate Mac UNTIL the TC gets back from maternity leave. Apparently Lansing School District can't afford to have a fill-in for her while she is gone, OR she is so awesome that no one can fill her shoes. She will be back Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-812417422002-09-06T12:36:00.000-04:002002-09-06T12:41:12.000-04:00School is still going pretty rough. I have not been able to get the psychiatrist that did Mac's neuropsych eval in June to send me a copy yet! This is getting pretty aggravating. The school needs it before they decide what to do with her. At least once a day, Mac has had to be removed from the room to go do her work elsewhere as she is causing such a distraction the teacher cannot teach. On a Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-809779152002-08-31T22:47:00.000-04:002002-08-31T22:47:08.936-04:00School started on 8/26/02. Yes, Mac is in the teacher's classroom we wanted. NO, the first week did not go well. By the second day, there was already trouble. By the third day, I was in the classroom having a conference. Sadly, the teacher believes that you still force a tongue depressor into the mouth of someone having a generalized tonic-clonic seizure (aka grand mal). I let her borrow my "Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-809769502002-08-31T22:16:00.000-04:002002-08-31T22:18:59.000-04:00Okay.. I know that this is MacKenzie's Journal.. but I (her Mom!) have been working with a wonderful group of ladies from over at eCommunities, the Epilepsy Foundation's online forums, on a HUGE project! The project will launch Monday am! I WILL be putting a link to this project on Mac's web site. The project (will not give the name away just yet) is an epilepsy awareness project and it is aimed Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-809768522002-08-31T22:12:00.000-04:002002-08-31T22:36:51.000-04:00Okay... started the Topamax. She is up to 50 mg BID (morning and night). It does seem to have made a slight difference in the length of time she has the myoclonic seizures, BUT the seizures are bigger, just less frequent (hope that makes sense!). Mac is off the Lamictal completely and she is down to 500 mg Depakote BID. Blood work was still not where Dr. Chugani would have wanted it to be, so we Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-804748322002-08-20T10:03:00.000-04:002002-08-20T10:03:09.046-04:00What the Principal has to say for herself Unbelievably, MacKenzie is actually on the list to be in the room of the teacher we requested! Can you believe it!? Now... wondering if this will make a difference. Mrs. T runs a very tight ship from what I have been told, and structure in the classroom will do MacKenzie good. Spoke with the principal last Thursday to get her up to speed on the Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-804745912002-08-20T09:56:00.000-04:002002-08-20T09:56:06.583-04:00Opthalmology Appointment on Wed, Aug 14th MacKenzie has ocular migraines. Remember the colors, flashing lights, squiggly lines, double vision, upside down "things" she has been seeing? Well.. at her opthalmology appointment, it was determined that she has ocular migraines. " Ocular Migraine is a variant of migraine that is not uncommon. It is believed to be caused by the same mechanism as Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-804743122002-08-20T09:48:00.000-04:002002-08-20T09:48:11.780-04:00The Appointment that Almost Wasn't Saw Dr. C on Wednesday the 7th. Almost didn't happen. After arriving at the Neurology department at Children's Hospital, we were sent to outpatient registration because after all the times that MacKenzie has been to Children's, she has never been seen there as an "outpatient". Sign in... wait, wait, wait. Mixup at the desk.. they thought we were waiting for Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-796036012002-07-30T14:11:00.000-04:002002-07-30T14:12:38.000-04:00Not good news; not bad news; just NEWS. Dr. C, himself, called this afternoon to let me know what they discussed in conference. Apparently, the testing is inconclusive as to whether she would be a surgery candidate or not. The EEG data has been all over the board, with focal areas found in left and right frontal lobes as well as left temporal lobe. Her Seratonin PET scan was normal he said, Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-794789292002-07-27T13:19:00.000-04:002002-07-27T13:19:01.536-04:00FINALLY!!! Some answers..... well... we will have some answers on Tuesday, July 30th after MacKenzie's case has been presented on the previous day. Have received an email from Dr. C to start weaning MacKenzie off of the Lamictal, as it has not made a "significant difference" in her nocturnal seizures, AND he said that we could "talk" on Tuesday. Keep your fingers crossed that it is good news :)Bethnoreply@blogger.com0tag:blogger.com,1999:blog-3661119.post-793940972002-07-25T10:55:00.000-04:002002-07-25T10:55:14.620-04:00Hello all! Welcome to the *new* page of MacKenzie's Journal! Here you will find the most updated information on what is happening with Mac vs. Epilepsy!Bethnoreply@blogger.com0