Wish For Allie

Wednesday, November 28, 2012

Endoscopy

November 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.

Friday, October 5, 2012

Allie 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.
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.

Wednesday, September 26, 2012

"You, who has pushed beyond what's humane". Alanis Morissette, Guardian.

"You, who has pushed beyond what's humane". Alanis Morissette, Guardian.

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.

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."

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.

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.

Why is she so angry?
_________________

UPDATE 8-8-13 : It is almost her 10th birthday! Allie has come far without rages for almost a year! 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.

Friday, April 13, 2012

Stupid Me

Wednesday 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.

Wednesday, April 4, 2012

Anti Seizure Medication

Lamictal 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.

Wednesday, March 7, 2012

"Duckaling Jack o'latern Soup-Head"

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!

Friday, February 24, 2012

Streptococcus x7 in Twelve Months

Seven positive strep tests within a 12 month period between 2007 and 2008.
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.
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.
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.
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.
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!

Thursday, February 23, 2012

Hair

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.
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!

Tuesday, February 14, 2012

Her first seizure story












December 2004 Children's Mpls, MN - 16 months old. 24 hour EEG



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.


"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.


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.


"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.


And the guessing starts. All doctors guess....


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.

Fast forward seven years and seven anti-seizure medications later…


"Does she have grand mal seizures?" Then they look at you with the big, feel-sorry-for-you stare.


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. 



1. Absence seizures 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


2. Partial Complex causes impairment of awareness. Automatisms such as lip smacking, chewing, fidgeting, walking and other repetitive, involuntary but coordinated movements. - webmd.com


When our daughter has a seizure she needs to sleep for about an hour after each seizure. 


2-4-12
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. 




EEG's
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. 

Dirty Dozen

Buy 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 http://www.ewg.org/foodnews/
Organic foods are found in all grocery stores.
Some grocery stores have a larger selection.
I shop at three stores to get what we need for meals. 
For example, organic large pitted olives are only found at Whole Foods.
Organic Kale is not at my Cub, but at Byerly's.
Select few organic breads are at Lund's and Byerly's.

Wednesday, February 8, 2012

Adaptive Dance

Adaptive 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. http://capernaumpeds.com/