tag:blogger.com,1999:blog-459388974184844362024-03-13T13:25:13.595-07:00Wish For AllieWe are healing our daughter Allie that suffers from epilepsy (seizures), developmental delay, behavior and mental health issues. Diagnosed with a rare gene mutation on the PCDH19 gene, PDD NOS, and autism.Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-45938897418484436.post-22714713280831703142017-09-14T20:21:00.002-07:002017-09-14T20:28:06.747-07:00Just a normal Summer with PCDH19<br />
Why do we have weeks without seizures than BAM, every week with seizures?<br />
That is the grey hairs on my fucking head. I can swear this is my own blog.<br />
Weeks in summer without seizures due to this epileptologist Dr. Walleigh pronounced like the Disney movie Wall E. Denver Childrens Hospital. She said "I will put Allie on a birth control pill before I put her on another anti seizure drug".<br />
Yep. Birth control! Holy fucking shit. Really?? It worked the entire summer without seizures because of that one little pill. She was spotting in August. So the doctor said take a break from the pill let her menstruate. BAM fucking seizures. Weekly now. How do we get back to no seizures? Try another pill. Ok. Nope that did not work. Ok put her back on the pill that did work. Ok. Poor Allie had terrible mood swings. Had to pick he up from school twice in a two week period because she was running out of the fucking middle school. OMG. Can I get her any relief?<br />
Back to square one. Calm her down. She is on medical marijuana called drum roll please - <span style="background-color: white; color: #43454b; font-family: "source sans pro" , , "helvetica neue light" , "helvetica neue" , "helvetica" , "arial" , "lucida grande" , sans-serif;">Haleigh's Hope. I will provide the link here. </span><span style="color: #43454b; font-family: "source sans pro" , , "helvetica neue light" , "helvetica neue" , "helvetica" , "arial" , "lucida grande" , sans-serif;">https://haleighshope.com/ <a href="https://haleighshope.com/" target="_blank">https://haleighshope.com/</a></span><br />
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<span style="color: #43454b; font-family: "source sans pro" , , "helvetica neue light" , "helvetica neue" , "helvetica" , "arial" , "lucida grande" , sans-serif;">So we do give her a medical marijuana (yes the State of Colorado gives us permission with a valid RED CARD) with a little supplement of THC to help her not fucking crawl out of her skin. It works. </span><br />
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<span style="color: #43454b; font-family: "source sans pro" , , "helvetica neue light" , "helvetica neue" , "helvetica" , "arial" , "lucida grande" , sans-serif;">Side story, because that's what I do. One night after school she was jacked up. Not listening being totally irrational crawling out of her skin. I literally saw her climbing over our backyard fence wanting to visit and walk over to Nana's house. NANA lives in fucking MN. We live in Colorado. Ok not happening Allie. I am alone with a four year old t-rex and Allie climbing over the fucking fence. Eric (hubby) love him to death, is at his guys night out playing board games. Whatever. Soooo success story here, I give her a little extra HH and extra drop of THC. Calms her down. YES. Thank you whole cannibus plant. I did not have Eric come home from his guys night out. I handled it myself. Allie was calm. Peaceful on our bed. Talking via FaceTime with her beloved Nana in MN and Uncle Aaron. OMG. Thank the universe for living in CO and having access to this plant. </span><br />
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<span style="color: #43454b; font-family: "source sans pro" , , "helvetica neue light" , "helvetica neue" , "helvetica" , "arial" , "lucida grande" , sans-serif;">Peace out Summer 2017. </span><br />
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Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-64550784892426359802015-12-31T12:54:00.003-08:002017-09-14T20:26:25.661-07:00PCDH19 DiagnosisAfter 12 years we have an answer to a few things. A seizure gene panel was done after I requested it. Children's of Colorado Melissa Gibbons the genetic counselor called me (October 2015) and said, "Joni, you were right. She has a mutation on the PCDH19 gene."<br />
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It was 12 long years of "fishing" in several hundred ponds.</div>
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Now we have one pond to focus on.</div>
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Does treatment change? Nope. Not right now. </div>
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Not until we can find out more about this genetic mutation.</div>
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Here is more about PCDH19 from the alliance we are committed to</div>
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<a href="https://www.pcdh19info.org/">https://www.pcdh19info.org/</a></div>
Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-26698389161257922612014-05-14T10:02:00.000-07:002014-05-14T10:02:01.023-07:00Neighbors - the good and the badThe past 10 years neighbors have always been there. Four houses, four different cities. Some neighbors are nice, others not. Why are women, mothers against each other almost like turf wars? Shouldn't mothers be all on the same team? I have two stories to "vent about".<br />
In 2007 our Allie was age 4. She was finding out how to be friends. The little girl down the street was a year younger. Allie as she always does, told the little girl she didn't like her brown skirt. The mother came up to me and said, "I do not want our girls playing together from here on out". I am not kidding! I told the mom how sorry I was. I explained she has a neurological disorder and she says what is on her mind. This was before an asperger's diagnosis. The mother did not want to hear of what I was saying.<br />
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The years go by. And we get really great neighbors here and there. The latest story puzzles me. Allie now is 10 and at school. I offered to watch a neighbors baby at 3:00 pm while she takes her other two children somewhere. I have a baby at home myself. No problem. The babies can stare at each other! That morning around 10:30 the phone rang and it was Allies school teacher. "Allie had a big seizure just now, she is sleeping". I called E to tell him please go get Allie, (generally more seizures follow). I phoned the neighbor and explained that Allie has seizures, she is at school and E went to pick her up. I am sorry I cannot watch your baby today". This crazy women, got so flustered she could barely speak. I don't know if she really understood what a seizure was. I call her crazy because she actually hung up on me. HUNG UP!! How old are we? I sobbed after that. I don't know why. I guess I felt like shit.<br />
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So moving forward I will not allow myself "out there" anymore. I will not push our selves on anyone because I do not know how they will do with special needs kids. No more!Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-34939925168281566242014-04-13T06:52:00.002-07:002014-04-13T06:52:51.856-07:00Seizures from RAW Cookie DoughAllie and I made chocolate chip cookies. We even got our chef's hats on too! I was getting the pans out and she was stirring and I saw that she snuck some cookie dough. Then she said can I lick the spoon and the bowl? I said yes. I should have said no. Allie had shooting stomach pains an hour after eating it. Then at 1:00 in the morning she threw up all over her bed about three times. Then the entire night every hour she had severe explosive diarrhea for the next 24 hours. Her seizures came the next day. They were every hour. The worst seizure episode in her entire life. We had to give her Diazapam 4 times in 48 hours. The side effect is stumbling, dizzy, slurred words and sleepy. Terrible 48 hours. It took a toll on all of us.Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-91869562267376569592014-03-24T18:56:00.002-07:002014-05-14T09:45:32.288-07:00Moving to ColoradoBetter seizure treatment for Allie. After 10 years with epilepsy and 10 failed seizure drugs. Our discussion with her neurologist in 2012 was talks of VNS implant. Surgery.<br />
So when we saw an amazing documentary from Dr. Gupta <a href="https://www.youtube.com/watch?v=tAFu-Ihwyzg">https://www.youtube.com/watch?v=tAFu-Ihwyzg</a> - we were set for the west!<br />
Let us try a plant before surgery! Medical marijuana is helping kids with seizures. Low on THC high on CBD this strain will cut seizures and not get her high. The thought of less seizures is the only goal in sight as of today and we are hoping to find that this June!<br />
We are pulling up deep roots and moving to Colorado June 2014. We Sold our house in 33 hours after listing it! New baby, new school, new lifestyle...whew! More to come!Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-49914682435995148922013-11-06T09:27:00.004-08:002014-03-24T19:31:10.153-07:00Medical Marijuana for Seizure ControlI am so overwhelmed with joy when I found out about the use of medical marijuana for seizure control. Here is the link for the documentary that Dr. Sanjay Gupta's CNN Special on "Weed". And Weed 2.<br />
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Weed - August 2013<br />
<a href="http://youtu.be/Z3IMfIQ_K6U">http://youtu.be/Z3IMfIQ_K6U</a><br />
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Weed 2 - March 2014<br />
<a href="http://youtu.be/tAFu-Ihwyzg">http://youtu.be/tAFu-Ihwyzg</a>Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-18128825461856451802013-06-25T08:10:00.001-07:002013-06-25T08:10:14.158-07:00Peanut Allergy Gone!Allie was one year old, 2004, when I gave her a taste of peanut butter. Within one second she was scrapping her tongue trying to get it off. She was crying. We saw some hives around her face and neck. Three hours at the St. Cloud Hospital ER she was discharged with a peanut allergy as a diagnosis.<br />
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We followed a pediatric allergist, Dr. Mary Keating every year. The doctor would take one blood sample to see how sensitive she was to the peanut. Fast forward to age 9 and the blood test showed that she had grown out of her peanut allergy.<br />
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Next step, was called the peanut challenge. What a dramatic title. On June 20, 2013 we drove to St. Cloud to Dr. Keating's office. Allie was given a 1/2 of a peanut, then the doctor took her vitals, looked for skin irritations, and looked down her throat for any type of reaction. Every 15 min for the next hour this would continue. The final was a larger dose of peanut then wait one hour to see if there was a reaction. Her throat felt funny, but other than that irritation nothing else. The doctor said she can now officially have peanuts! She passed. This makes our lives a little easier.Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-62169320791225557812012-11-28T12:39:00.001-08:002012-11-28T12:39:16.221-08:00EndoscopyNovember 16, 2012 Allie was admitted to Amplatz Children's Hospital at the U of MN in Minneapolis MN. The procedure was an endoscopy with biopsies of her small intestine. The procedure went very well no issues. Stomach looked great, no evidence of any other issues. Test results came back negative for celiac disease and lactose intolerence. We thought this was going to be an answer to unsolved mysteries. Again no answers.Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-63818417186138539062012-10-05T07:43:00.001-07:002012-10-05T07:43:55.921-07:00Allie does not know when she has seizures. When she has one, she is very tired and usually complains of a severe headache. It is hard to see when she has a seizure because they are only about 10 seconds and she looks around.<br />
This morning, I may have missed one prior to school. I sent her to school so now I sit and wait to see if school will call me if they see one. I wish Allie would know when she has a seizure. This may come as she grows older, she is only 9.Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-62684904296562912372012-09-26T08:47:00.000-07:002013-08-08T11:41:12.572-07:00"You, who has pushed beyond what's humane". Alanis Morissette, Guardian.<div style="text-align: center;">
<i>"You, who has pushed beyond what's humane". Alanis Morissette, Guardian.</i></div>
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We has parents with a complex, special needs daughter has been pushed beyond what's humane. What we go through on a day by day basis would break any normal human's ability to be sane after years and years of this kind of parenting. Allie's temper-tantrum's are not a typical tempertantrum. We call them rages now she is 9 years old. Her face, eye's, and body goes to through a metamorphis. She is stronger than her "normal" calm self. It does remind me of the 1970's show the Incredible Hulk.<br />
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We have a system for how Eric and I communicate to each other what emotional state Allie is in currently. GREEN means she is feeling great, and she is happy. YELLOW means she starts arguing and saying mean things to people around her. RED is self injurious, kicking, biting, head-banging and no self control needs restraint to keep everyone safe. At home I see her when she is on her way to rage. I keep it "at bay" when dad is away at work. He works a 10 min drive away. Somedays I text him, "yellow" and he text's right back, "on my way."<br />
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We lived for two weeks with Eric's mother, Nana while waiting to move to our new house in Plymouth. It was the first time Nana witnessed Allie's rage transformation. "Her eye's changed Joni, it was not Allie", she told me after a rage episode. I know, I know. This was a physical change that for the first time someone other than mom and dad saw.<br />
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Last night Allie was restrained during a rage. The rage and temper-tantrum lasted 2 hours. Eric and myself exhausted beyond what is humane. Allie bit several walls, wood railing and bed. She bangs her head on the carpet really hard so till she has bruises and red marks on her forehead. So angry.<br />
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Why is she so angry?<br />
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<b>UPDATE 8-8-13 </b>: It is almost her 10th birthday! Allie has come far <b><i>without rages for almost a year!</i></b> Her last rage was when we moved the week of August 31st 2012. She has "fits" we call them now days, and, mostly at school. We are very proud of her for keeping calm for us.Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-51539589319409469352012-04-13T07:51:00.001-07:002012-04-13T07:55:21.865-07:00Stupid MeWednesday we drive 30 min to adaptive dance class. It is a 45 min class that the kiddo's get their exercise and also get ready for a dance recital. Wednesday at school was good. The car ride at 4:30 she slept. I did not really think she had a seizure, I just thought she was really tired. We get to dance on time, I watch them dance and this day she did not want to participate. She was complaining, and wanted to sit with me and not do anything. I told her she needs to participate. 15 min into the class, she approached me sitting on the sidelines -not responding, blank stare, glossy eyes she looked pale. Clearly a partial complex seizure. No response for 15 seconds. I excused ourselves, told the other moms she had a seizure, they understood because they have been there too. They offered help, I just needed to get her Lorazapam 1 mg as soon as possible. I did not have one with me! OMG!! STUPID ME! I told my self over and over. We got into the car. Allie is really confused. She does not know yet, age 8, what happens when she has a seizure. I explain to her like I do every time, "you had a seizure, your brain shuts down and reboots again just like a computer." I buckle her in she is super tired and sleeps in the car. It is 5:40 pm, HWY 100 North is a fucking parking lot! SHIT!!! I tell myself. Rush hour. Please don't have another seizure. OMG... I am so stupid "why do not have Lorazapam in my purse?" I am just really mad at myself... I know better....I know better. I call Eric, "Eric look at the traffic map, tell me how to get out of this fucking traffic". "Take HWY 7 West, to 17 North. It is all green." I get off of HWY 100 and West 7 and he is right - it is clear. Thank god. I am driving into the blinding sun. I look in my rear veiw mirror positioned right at Allie's sweet face...OMG she is having a seizure. She is grabbing her seatbelt, omg, this is dangerous. I am going 55 miles an hour what if she unbuckles herself? I reach back with my hand she grabs it and is pulling my arm; hard. She does this during a seizure. This one I think is about 30- 40 seconds long. She releases my arm, pulls softly back and falls asleep quickly. I call Eric in a panic. "She had another one, my god they are 1/2 hour apart." These are called cluster seizures. We HAVE to stop them. "Eric meet me with the bottle of Lorazapam.". We argue at where and when. Of course I am freaking out. I am mad at myself. I am mad at the world. He is the closest punching bag. "I can stay on the line with you." Eric says nicley. "Thanks." I will take this support. I am driving in territory I don't know. I see 101 North. Good. I know this road. It is narrow and winding around lakes. Very pretty today, I think to myself. I wish I was on that beautiful lake boating with a family. "I am so stupid why don't I have Lorazapam". I have a clearing, I go around cars and drive past the speed limit. Met Eric at a gas station. I give her Lorazapam, I tell her to swallow it. she swallows it, I forgot that it is suppose to be given buccally. This would insure a quicker route into the blood stream. "God I am so stupid, why did't I give it to her in her cheek?" I am not thinking clearly, I tell Eric.Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-54018458668232960242012-04-04T11:38:00.001-07:002014-05-14T09:42:58.635-07:00Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-85211830919850083502012-04-04T07:30:00.002-07:002012-04-17T10:28:18.100-07:00Anti Seizure MedicationLamictal and Depakote when she is on higher doses she has severe aggression. Depakote 125 am and 250 mg pm she was really aggressive. We took out one 125 mg pill and we have a much calmer Allie. Also, past 62.5 mg twice daily of Lamictal she is unsafe and has aggression. We are trying to figure out another med for seizures without the aggression.Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-87585053534696752262012-03-07T07:42:00.002-08:002012-03-07T19:05:43.925-08:00"Duckaling Jack o'latern Soup-Head"<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCNKOwEjBYfOOqI6vuzMvEWl9HRx_h8YLaWFTmFhft75xjtIAZhlnOm8-YEgof37ROU1UsEp_tvbj4R_6oXspcMrC3aq5DjroX86vm0UAvswC3gdwKN5UBv24d9UCVSID_MrPwIaqrYg/s1600/duckling.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCNKOwEjBYfOOqI6vuzMvEWl9HRx_h8YLaWFTmFhft75xjtIAZhlnOm8-YEgof37ROU1UsEp_tvbj4R_6oXspcMrC3aq5DjroX86vm0UAvswC3gdwKN5UBv24d9UCVSID_MrPwIaqrYg/s320/duckling.jpg" width="320" /></a></div>When Allie was a baby, someone dear to us (don't recall whom), gave our new bouncing baby girl the softest, bright yellow, stuffed animal duckling. At about age 3, Allie named this duck. Which was great because up until then, every stuffed animal was called what it looked like. For example, the brown bear was called "Bear". Her white bunny was called "Bunny". So we as parents were glad to hear she named her stuffed duck. And, we knew right away that she had the creative gene in her. She named the cute stuffed animal "Duckaling Jack o'latern Soup-Head". WOW! We laughed and giggled of course. We had no idea where or what universe those words came from. We were delighted to say the least. This name has stuck throughtout the years. We still have "Duckaling Jack o'latern Soup-Head". It has faded and lost some softness due to all the machine washing. But it still has a place in our home. A few other notable names she has come up with for her stuffed animals are: "Blueberry" which is a soft dog, "Catty" for her two caterpillars, "Fluffy" for her white dog, and "Blankie" for her baby blanket. These items bring her calmness, security, and comfort which is the best and easiest medicine to manage!Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-1186667371665459252012-02-24T12:58:00.002-08:002012-02-28T12:51:29.385-08:00Streptococcus x7 in Twelve Months<div style="border-collapse: collapse; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Seven positive strep tests within a 12 month period between 2007 and 2008.</div><div style="border-collapse: collapse; color: #222222; font-family: arial, sans-serif; font-size: 13px;">The pediatrician who was treating my daughter at this time used a paper/folder system - no computer. I asked this pediatrician, "Will you do a count of how many positive strep tests came back over the past 6 months?" She counted three. I insisted she look further; turned out, she found three additional positive test results for strep. It was time to remove her tonsils and adenoids.</div><div style="border-collapse: collapse; color: #222222; font-family: arial, sans-serif; font-size: 13px;">We made the surgery date with an ENT specialist. The day before her surgery, the surgeon called and said, “Your daughter’s platelets are too low and surgery at this time would be too risky. She needs to be admitted to Children's Hospital in Minneapolis for this surgery.” My stomach turned sour.</div><div style="border-collapse: collapse; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Thrombocytopenia is the medical term used to describe a low platelet count. Allie's platelet count was 120,000 platelets per microliter. Normal range is between 150,000 to 450,000 platelets per microliter of circulating blood. The anti-seizure medication, Depakote, was making her platelets low which is a side effect of many anticonvulants.</div><div style="border-collapse: collapse; color: #222222; font-family: arial, sans-serif; font-size: 13px;">We made the surgery date with a new surgeon at Children's. During the week of the surgery, Allie received another positive strep test. That made seven positive strep tests within the past 12 months. The surgeon said we needed to postpone the surgery until she finished the 10-day antibiotic treatment and received a negative strep test; then we could reschedule the surgery.</div><div style="border-collapse: collapse; color: #222222; font-family: arial, sans-serif; font-size: 13px;">It took an additional two weeks to finally get her into surgery which took place on June 24, 2008. Dr. Timothy Lander was great! My daughter has had only four positive strep tests since her surgery in 2008. Not a 100% cure…but way better!</div>Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-12175975184547130272012-02-23T18:53:00.002-08:002012-03-11T18:27:52.546-07:00Hair<div style="border-collapse: collapse; color: #222222; font-family: arial, sans-serif;">Hair care is a battle everyday of our lives. Allie has beautiful hair she inherited from Dad and Nana. How could I cut it off again? Backup to age 3 and temper tantrums daily. We said, "Let’s cut it off.” I look back at those pictures and I just think, “Never again!” So now she is 8 and ½ years old with long, snarly hair…especially in the back underneath. I finally found a great product after six years of going through every children's detangler there was on the American market! Drum roll please... "It's a 10." Yes, that is the name. It’s packaged in a beautiful, blue bottle. This stuff works. Expensive, but worth every single penny. It’s only sold in salons at this point.</div><div style="border-collapse: collapse; color: #222222; font-family: arial, sans-serif;">Another topic is showers. For Allie to shampoo and rinse her hair by herself in the shower is not a good idea. Dad took over one night and wanted to give Allie her privacy. She was so proud she announced to us both that she washed her hair all by herself without help. We cheered and made a big deal. However, I was combing her hair and discovered the top back of her hair was full of suds. If anyone can relate to a child with autism, and an independence moment like we just had, I did not want to ruin this one. I combed through the suds, getting out as much as I could without saying anything. Was it greasy the next day? Yes. Did I care? Nope. I still inspect after her shampooing, and still have to go in with our handheld showerhead to get all the suds out…No big deal!</div>Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-6685504114997436982012-02-14T13:12:00.004-08:002012-03-11T18:32:39.845-07:00Her first seizure story<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTi2uEQMDAq8TdexNPp2YVi2PxslgDFHShzm5oKYf9PYiA-c0npyC2M2R31uF6P3Ho0bsSh5Mejeko_ANmx2X7OGI1ZryJWDaiLLT78DIU0m7Yr57UvG-TDzm2CIhD7PX9ggxHlBvczA/s640/blogger-image-1250806041.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTi2uEQMDAq8TdexNPp2YVi2PxslgDFHShzm5oKYf9PYiA-c0npyC2M2R31uF6P3Ho0bsSh5Mejeko_ANmx2X7OGI1ZryJWDaiLLT78DIU0m7Yr57UvG-TDzm2CIhD7PX9ggxHlBvczA/s640/blogger-image-1250806041.jpg" /></a><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"></span><br />
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<div style="text-align: center;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">December 2004 Children's Mpls, MN - 16 months old. 24 hour EEG</span></div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">It was December 4th, 2005; Allie had her first absence seizure at 16 months old. She fell back under our Christmas tree and I thought she was staring at the pretty lights. I will never forget those moments. After that, it was pretty much a blur. My husband has never heard me scream like that. Ever.<br />
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"Did she have a fever today?" the paramedic said in our foyer as Allie lay sleeping in my lap while I’m sitting on the steps. "No,” I said. "It is a febrile seizure ma'am, they are really common. She will be fine," the young paramedic said to me--I think to shut me up. I actually remember feeling at ease, she will be okay. We then rushed to the St. Cloud ER.<br />
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After being admitted to the St. Cloud hospital, the moronic doctors watched her seize every hour for 10 hours throughout the night. My family and a good friend visited us, giving support and advice. We made a decision to make a frantic helicopter ride to Children's Hospital in Minneapolis, Minnesota. Finally, maybe we could get some answers. "No she did not have a fucking fever!" I yelled across the room to an innocent, unsuspecting pediatric neurologist. "STOP MY BABY FROM SEIZING! DO SOMETHING!" I yelled with all my might.<br />
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"Has she hit her head?" the neurologist and five nurses ask. "Yes, she fell back and hit her head on our hardwood floor.” I thought nothing of it. OMG! The CT scan had no evidence of a head injury and no TBI diagnosis. "For all I know you made up that she hit her head. There is no evidence of a head injury on the CT," says the pediatric neurologist. "This is just a coincidence that she had seizures the same day she hit her head; she already had a seizure tendency,” says the pediatric neurologist.<br />
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And the guessing starts. All doctors guess....<br />
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She was put on strong IV doses of Phenobarbital to stop the cluster seizures. She was on the liquid, red-colored yuck Phenobarb for three months. A narcotic in my 16-month-old. That was heavy shit.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Fast forward seven years and seven anti-seizure medications later…<br />
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"Does she have grand mal seizures?" Then they look at you with the big, feel-sorry-for-you stare.<br />
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If I had a dime for every time a person asked me if my child had grand mal seizures, I would be blogging from my beachside mansion in Hawaii and not in my town home in Minnesota. Grand mal-type seizures are the shaking type that you see dramatized on "House" and "Grey's Anatomy." There are other types of seizures: Absence, Myoclonic, Clonic, Tonic Atonic, just to name a few. Our daughter has experienced two types of seizures in the past years. </span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b>1. </b><span class="Apple-style-span" style="line-height: 16px;"><b>Absence seizures</b></span><span class="Apple-style-span" style="line-height: 16px;"> </span><span class="Apple-style-span" style="line-height: 16px;">cause a short loss of consciousness (just a few seconds) with few or no symptoms. The patient, most often a child, typically interrupts an activity and stares blankly. These seizures begin and end abruptly and may occur several times a day. Patients are usually not aware that they are having a seizure, except that they may be aware of "losing time." -webmd.com</span></span><br />
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<span class="Apple-style-span" style="line-height: 16px;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b>2. Partial Complex </b>causes impairment of awareness. Automatisms such as lip smacking, chewing, fidgeting, walking and other repetitive, involuntary but coordinated movements. - webmd.com</span></span><br />
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<span class="Apple-style-span" style="font-family: Arial, Verdana, Helvetica, sans-serif;"><span class="Apple-style-span" style="line-height: 16px;">When our daughter has a seizure she needs to sleep for about an hour after each seizure. </span></span><br />
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<span class="Apple-style-span" style="font-family: Arial, Verdana, Helvetica, sans-serif;"><span class="Apple-style-span" style="line-height: 16px;">Current Meds for seizures prescribed by Dr. J in Minneapolis, MN are Lamictal 62.5 twice daily, and Depakote 125 mg at wake and 25 mg at bedtime. Lorazapam 1 mg p.r.n. at sign of first seizure up to two doses in a 24 hour period. We have found if we do not administer Lorazapam after the first seizure, we will see them once every hour, this is called a cluster of seizures. In her case the 30 second seizure will come every hour on the hour over a 24 hour period. We have found Lorazapam to help her break these clusters or cycles. </span></span><br />
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<span class="Apple-style-span" style="font-family: Arial, Verdana, Helvetica, sans-serif;"><span class="Apple-style-span" style="line-height: 16px;">Over the past 8 years, she has had 5 EEG's. Three of these were 24 hour EEG, which is the electrodes glued on for a 24 hour period in or out of the clinic. She sleeps with them on the best she can. We document everything with the times. The more the doc knows the better he or she can understand what causes spikes or not. Of the 5 EEG's we must have had bad timing because they could never record a seizure while the electrodes are attached. The glue is messy to dig out of her hair but it is water soluble and with alot of patience it does eventually come out. Do not shampoo during the digging out glue process, this hides the glue too much and you will have a hard time finding the chunks. </span></span><br />
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</div>Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0Minnesota, USA46.729553 -94.68589980000001643.7870545 -98.559619300000008 49.6720515 -90.812180300000023tag:blogger.com,1999:blog-45938897418484436.post-42218977350269294832012-02-14T07:59:00.001-08:002012-02-14T11:56:42.226-08:00Dirty DozenBuy Organic! Why is it okay for us to digest toxins, herbicides and pesticides and think that our bodies will not be affected? The Environmental Working Group, a watchdog non-profit, has done extensive research on fruits and vegetables that we buy in our local grocery stores. The EWG has compiled a list from the worst of pesticides to the least. The Dirty Dozen is the top 12 fruits and vegetables that contain the highest level of pesticides and toxins. They also list the Clean 15 which are more safe and could save you the extra organic expense. There is a complete list here <a href="http://www.ewg.org/foodnews/">http://www.ewg.org/foodnews/</a><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMSspcRv4ATb2lg9LysiUCKyCKbG5aJ7DKalQP2hd2cdJpCIIQLgBeAfI78tW3mbjM-YYzpIL6WXtgwFyO4sHD6SiTHdYjmuxBAJh0DG5JeHthuEtoqzUHUTTG9Cn8qSdULSW2pVOabw/s1600/organic.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMSspcRv4ATb2lg9LysiUCKyCKbG5aJ7DKalQP2hd2cdJpCIIQLgBeAfI78tW3mbjM-YYzpIL6WXtgwFyO4sHD6SiTHdYjmuxBAJh0DG5JeHthuEtoqzUHUTTG9Cn8qSdULSW2pVOabw/s320/organic.jpg" width="239" /></a></div><div class="separator" style="clear: both; text-align: center;">Organic foods are found in all grocery stores.</div><div class="separator" style="clear: both; text-align: center;">Some grocery stores have a larger selection.</div><div class="separator" style="clear: both; text-align: center;">I shop at three stores to get what we need for meals. </div><div class="separator" style="clear: both; text-align: center;">For example, organic large pitted olives are only found at Whole Foods.</div><div class="separator" style="clear: both; text-align: center;">Organic Kale is not at my Cub, but at Byerly's.</div><div class="separator" style="clear: both; text-align: center;">Select few organic breads are at Lund's and Byerly's.</div><div class="separator" style="clear: both; text-align: center;"><br />
</div>Wish For Alliehttp://www.blogger.com/profile/06312081240611555310noreply@blogger.com0tag:blogger.com,1999:blog-45938897418484436.post-55378660372493804302012-02-08T15:38:00.002-08:002012-02-25T12:47:57.077-08:00Adaptive DanceAdaptive dance classes are offered to kiddo's with special needs. Classes are held at Barbie Lee's Dance Studio in Edina Minnesota. If you ignore the old walls and dust bunnies everywhere you will enjoy your child dancing. Each Wednesday night Allie participates in dance class with little girls like Allie. It is a great program through Carparnum Pediatric Therapy. They have a recital at the end of the program. <a href="http://capernaumpeds.com/">http://capernaumpeds.com/</a><br />
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