Wish For Allie

Temper - tantrums

UPDATE August 8th 2013

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.


We kept waiting for Allie to outgrow the temper-tantrum's. 

Age 9 months, May 2004, she rocked back so hard she broke her hight chair.  The pediatrician said she is "advanced" after I told her about her rocking. No autism on anyone's radar.

Age 3 she was on Keppra. I would drive across St. Cloud to my mother in laws house crying because Allie's temper-tantrum's were so violent. Keppra DID indeed increase her temer-tantrums. We did see a mild decrease in temper-tantrums when we put her on Trileptal. She had break through seizures with Trileptal. She is now on Depakote 125 mg once in the am and two tablets at bedtime. She is on a stacking anti-seizure med Lamictal 62.5 twice daily. 

Does anti-seizure meds increase these temer-tantrums? Probably. However it seems to be an evil trade off. Take away the anti-seizure meds have her in a good mood, but then she would be seizing. 

Age 3 - 6 temper-tantrum we saw the following; 
  • throws her head back 
  • banging her head on the floor 
  • scratches
  • pulls own hair out in clumps
  • bites and pinches self
  • scratched self with a pen
  • pulled out a baby tooth and it was not loose
We have video of some behaviors. We recorded these self injurious behaviors and made copies and gave them to the pediatrician at the St. Cloud Medical Group and to Allina in Maple Grove. Allie has been self injurious for years and still is to this day. 

At age 3, she was diagnosed with Sensory processing disorder or SPD is a Neurological disorder causing difficulties with taking in, processing and responding to sensory information about the environment and from within the own body (visualauditorytactileolfactiongustatoryvestibular and proprioception). - wikipedia.org

July 2009 we admitted Allie to MN Epilepsy Group at United Hospital in St. Paul, MN Dr. D monitored her with a 24 hour EEG. The goal was to make sure she was not seizing through her massive temper-tantrums. There was no evidence of a seizure during her temper-tantrums. 

January 2010
Oak Hill Elementary school in South St. Cloud, Allie was in the middle of the hallway hitting her head on the hard floor. School said they could not accommodate Allies needs.

We admitted Allie to Clara's House, CentraCare, partial hospitalization programming for 7 weeks. This was a good program. However there are Psychologist's involved, and they seem to introduce words to her when they shouldn't. 

Prescribed Guanfacine 0.25 mg twice daily. This has helped with the rocking. She rocked from 9 months old to age 6. To this day, if she is rocking in the car, all I have to say "Allie calm your body". I then give her a "hand fidget", which is a stuffed animal or a squishy ball. As of February 2012 we increased Guanfacine to 1 mg three times daily. We did try Intuniv. The Intuniv did cause weight gain. So we decided to go back to Guanfacine. Abilify was non-effective for Allie.

Side story about a St. Cloud Psychologist, circa 2009.  
Dad, mom and Allie met with a new young Psychologist. 
The first words out of this Psychologist's mouth was, "no one is here to hurt you Allie." 
E and I were beside ourselves! 
In my opinoion never have a kid around a psychologist alone. 

April 27, 2010 rage lasted for 3 hours. Partial on a non-public video. 

4/12/10 - 7/9/10 transition into Lamictal. Her moods were improved for a year. Her higher levels of Depakote were contributing to behaviors. We went down on the Depakote and up on Lamictal. She was learning to read and write after this transition. Lamictal 62.5 twice daily, Depakote 125 mg once am 250 mg at bedtime for seizure control. 

Rages; we moved from calling them temer-tantrums to rages. We did this because of how much she is out of control and can really hurt people.

Age 7 - 8 Rages we see the following; (Now I call them Depakote Rages. At the time I did not realize what Depakote did.) 
  • throws her head back 
  • scratches others
  • bites people
  • bites and pinches self
  • spits on teachers, helpers, mom and dad
  • runs out of school
  • steals from school, mom and dad
  • lies
  • tried to steal Cheetos from Target
  • takes off seatbelt in car
  • tears books
  • tears apart her room
  • throws heavy objects
  • attempted to stab dad with a tweezers
  • yells and screams

Age 8 her rages are very dangerous. As she can throw furniture. She is 70 lbs at age 8 and very strong. Mom can no longer restrain Allie. Dad has to restrain her at times for safety.
Allie has verbalized that she will take the car and drive to get what she wants. Usually Cheetos. (she is on a non dairy diet and Cheetos are not safe to eat).

Common question from doctors, "what set's her off?" I reply, "the word no". When Allie is not in control she will have a rage. 

Last time I took her to Target she tried to run out of the store with a bag of Cheetos. I restrained her, I then threw with all my might the Cheetos back into Target, they landed near the check out girl, and pulled her to the car kicking and biting me, all because I said "NO" to Cheetos. 

Currently, age 8 1/2 Allie we have had great days. Ever since we decreased Depakote from 125 mg once am and 250 mg at night, we dropped down to 125 mg twice daily. She is happy and does not rage. 
She is also seen by an in home therapist and is starting neurofeedback to help with ADHD.