Peanut 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.

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.

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.

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.

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.

"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?
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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.

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.

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.