Eli's Journey

by Suzi
(Charlotte, NC)

My son is 5 years old and was diagnosed with bi-polar disorder at the age of 4. He began having rages within 2 weeks of turning 4. When a rage began it was like he was possessed and the rage would last from 5 minutes to 3 hours or longer. When the rage was over its like he had no recollection of what had transpired.


We became extremely concerned when he got angry over which book I would read to him at bedtime and he ripped the doorknob out of our locked bedroom door and broke it in two. He was only 4 at the time and weighed about 37 pounds. We sought out the pediatrician the next morning. We were referred to a play therapist but before we could get an appointment he had escalated and had to be taken to a behaviorial health ER.

He was admitted inpatient at age 4 and placed on tenex. The medication did nothing to help his moods. He was originally diagnosed as mood disorder n.o.s. and ODD. We were told to get video of his behaviors as they could not replicate them at the hospital. We began therapy with the play therapist once he was released from the hospital and began using 1-2-3 magic with no success. His therapist noticed that her suggestions were not working and she noticed that he lined his toys up in lines not to be disturbed. She suggested that he may have a sensory disorder.

At this time he was again admitted inpatient at the behavioral health hospital with the same rages and had given my husband a concussion and threatened to kill me, my husband and daughter (we are all his biological parents / sibling). They ordered an MRI of his brain and a sleep deprived EEG. We had video of one of his outbursts on my husband's cell phone but they refused to look at it. The MRI and EEG came back negative.

At this point I contacted an OT to start work on his sensory processing disorder. We worked with her for about 4 months and noticed marked improvement although the rages continued. We began using a 5 pound weighted blanket at night and also gave him wireless headphones to sleep with as the music calms him--he has to play the same song over and over all night.

We also were able to get intensive in home therapists in our home 6 hours a week for 6 months. They witnessed the rages and saw that they were unprovoked as the hospital had stated that since they could not replicate his behaviors in their environment that obviously his father and I were doing something to him in the home to cause them and either we come pick him up from the hospital or they would call DSS to get him as we had abandoned him.

We got him in with his current psychiatrist and she started him on zoloft which only made him more anxious. She then tried him on vyvanse which made him lay in the floor too tired to move but he raged continuously, if you walked by him he would kick, hit and try to bite. The in home therapists had him meet with their psychologist and she diagnosed him as bipolar as my mother had bipolar disorder. They also made the conclusion from their observations that he was not ODD.

At the time of his diagnosis he again stated that he wanted to kill his family and he tried to choke my 8 year old daughter. His psychiatrist then put him on the depakote sprinkles in addition to the zoloft with no success. We then stopped the zoloft and went to depakote only. Again no change. Then she placed him on depakote and risperadone. We started to see a slight improvement but he continued to have rages, only not as frequent. His rages occurred only in the presence of his immediate family or the intensive in home therapists, not in his daycare setting.

We took him to Florida to Disney and it was a disaster. We got there on a Saturday and was supposed to stay until the following Saturday but had to leave on Tuesday due to the duration and frequency of the rages he was having. In August he started Kindergarten and has done reasonably well. We had tried to get an IEP for him prior to the school year but was told during the evaluation that due to the behaviors occurring at home and not in the school environment that they could not help us. We spoke to his teacher at the beginning and told her of his diagnosis and his sensory issues so that some accomodations could be made. He did fine for the first 6 months but now we are having problems at the school.

His medication was changed to only risperadone in November and increased to 2 times a day. That has helped noticeably but now he is refusing to go to school. We have spoken with the staff at the school and nothing has happened with him or other students that would warrant this behavior change. Either me or the teachers / principal have to physically carry him into the school and they have to restrain him in order for me to leave. He has extreme separation anxiety. We can't even leave him with a grandparent for 2 hours to go on a date without a severe tantrum or rage.

He is screaming for about 30 minutes at the top of his lungs at school that he needs to go to the principal's office or that he needs to go to the hospital. He states every morning that his stomach hurts and his whole body hurts. He is working himself up into such a state that his anxiety is overwhelming him. This morning he said that dinosaurs were trying to bite his head. I asked him if he could see the dinosaurs and he said no but he could hear them. They were growling (as he does in a rage) and that the bites were stinging his head. I assume he is having auditory hallucinations. What I don't know is if it's because they've tripled his morning dose of Risperadone in the last week.

I have tried to reach out to numerous doctors and agencies only to be turned down due to his age. His current psychiatrist has been deployed to Kosovo until at least June and the office only has a nurse practitioner working 2 days a week. We keep slamming up against walls. I know he is hurting and does not want to be this way. Last night he stated that his friends at school are saying that he has fits and it hurts his feelings. This has been the hardest 18 months of our lives.

Comments for Eli's Journey

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Apr 05, 2017
Staying Strong NEW
by: Anonymous

Wow.. This sounds like my son to the T.. our journey began at 3 1\2 years old. . Ian is now 11..
All I can say us Lamical changed our life 2 yes ago. Yes we still go through "episodes" as we call them from time to time. . But nothing like the ordeals we suffered at the beginning and middle. .

Dec 27, 2016
Keep up the good fight NEW
by: Valerie

It sounds like you are incredibly present and thoughtful parents, and I hope your son's psychiatrist returns soon. Sending you strength!

Sep 24, 2016
your child reacts as my Granddaughter NEW
by: Granny

You are not alone and the journey toward wellness for you son means you need all the support you can get for you.
My now 9 year old grandchild was dropped off to us when she was 4 years old. Our daughter was in a mental health crisis - single parent, losing job after job due to needing to leave work because her daughter was acting out at daycare. Now homeless, exhausted and no one in the medical community or behavioral health system agreeing on a diagnosis.
All of that changed when at the age of 6 our grandchild was placed in a pediatric mental health facility. Tenex and a vague diagnosis did nothing to help her. The melt downs, rages, threats to kill others and self, morbid thoughts relative to my own death, rapid cycling - overly happy, extreme sadness, spinning when exiting the school bus, hearing voices at school, locking all the doors and windows in the home one night and the next leaving every area unlocked and strolling down the street in the early morning. It was sheer insanity. Finally, through private insurance, we located a Psychiatrist who accepted pediatric bipolar. Our granddaughter has done well on Abilify (6mg lessened the meltdown time and rids her of auditory/visual hallucinations), Trileptal (150mg in the morning and 300mg at bed), Tenex (1mg in the morning and afternoon, 2mg at bed), and 3mg of melatonin at (bedtime).

Once stable via medication, our granddaughter has been able to learn coping skills. Meditation and Yoga as well as spending 1 hr each day at the playground has helped. Age factors in and what is simply natural childhood behavior and what is actually a mood disorder is so difficult to determine even by those most advanced in this field of medicine.
Use a copybook to record the night terrors, regressions, what occurred before, during and after the meltdown. This log will help you to see if a pattern is present.
May only that of the highest good be with you, your child, and entire family throughout this journey.

Oct 31, 2015
Diet and Rages NEW
by: Anonymous

So sorry you are going through this. I have twin sons who raged like this until they were 8 years old. It. Was. Horrible. When they were 8, I discovered a book called Little Sugar Addicts by Kathleen DesMaisons. It has changed our life without prescription drugs!

The book and website (www.radiantrecovery.com) outline a seven step process in which you gradually, slowly change your child's diet. First you make sure they eat breakfast within an hour of waking every day. Then, you make sure they are getting enough protein (it's way more than you think!) and complex carbs in regular meals and snacks. Many or maybe all kids who rage have blood sugar issues that contribute to their issues and there are so many similar stories on the website. It is absolutely worth a try! Things can get better for your kids!

We also have to be very strict about bedtimes and even though they are 12 they are in bed by 8:00, so they get enough sleep. They may need a snack during the night, also.

Another thing is to choose your battles and avoid power struggles. If you can grant their requests, but are trying to teach them a lesson about their behavior by denying it, this will backfire every time and not teach them anything. They can't control their behavior when they are in a rage and no amount of consequences are going to change that. When they need food or water, make sure they get it immediately no matter what. Always, always carry water and a healthy snack with protein with you on outings. The bit of extra time and planning this takes will be worth it and will help avoid meltdowns if you get the snack into them in a timely manner. Talk to your child's school about sending some healthy snacks for your child and make sure they have enough time to eat a good lunch. Bring a snack with you when you pick them up at the end of the day!

Keep your life as low stress as possible. Overscheduling can lead to major problems. We now homeschool in part because they couldn't handle the school day, the sugary snacks and drinks they had there instead of good food, and had major separation issues as kindergarteners. I wish I had pulled them out sooner. Not that it has always been easy! It has been crucial for us that I find ways to get breaks and do self-care.

Best wishes!

Sep 19, 2015
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Sep 15, 2015
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Jan 23, 2012
Frustrated NEW
by: Anonymous

My name is Nicole and I have a 6 year old daughter named Gracyn. She was diagnosed with bipolar 2 years ago. They began her on abilfy and ritalin because she was also diagnosed with ADHD. For the last 2 years it's been a journey for sure. But, they haven't increased the abilfy since the initial diagnosis and went up on the ritalin (Concerta). Now, for the past 2 months she has had an episode everyday. It's gotten to the point where I am scared to ask her to do anything! I just don't know what to do anymore. I too suffer from bipolar and I know how hard the journey has been for me. I knid of feel like it's hopeless sometimes until she gets older and more treatment options become available. Does anyone have any advice?

Jul 28, 2011
Your Story
by: Liza

I know exactly what you are going through! I have a 6-year old son who has been having behavioral problems since he was 3. He has been to 4 different psychiatrists, has been inpatient twice, has been on at least a dozen different meds and NOTHING is working. He is now currently raging so bad that he leaves marks on me and his 7 year old sister, and whoever else "makes him mad." About 2 weeks ago he threw a 30 pound plastic barrel down a flight of steps at me, ripped the curtains off the wall and put a hole in another wall. He did this because I took one of his toys away. Last night he raged for 45 minutes. He wanted juice and I said no and that he could have water. He didn't like that so went out the back door, kicked a full bag of garbage(closed up)down the steps, turned the hose on and sprayed me until I was soaked. I then carried him in the house like a football and he bite me so hard I was bleeding. By this time, he was already 5 minutes late for bible school. He then said he wanted the water. I told him that we would need to wait until we got to church(5 minutes from my house) to get the water because we were running late due to his behavior. Well that made him even worse. He was refusing to get into the car so I had to put him in the toddler carseat with the harness. He would keep unbuckeling himself though. He was then hitting me in the back of the head, kicking me, etc while I was driving then he kept opening up the car door to try to jump out. Finally when we got the church he was exhausted from the rage and he was fine. He DOES NOT remember what took place the entire 45 minutes that he raged. I'm thinking he has bi polar but the current doctor doesn't think so. Tomorrow my husband and I are taking him to another inpatient facility 6 1/2 hours away from home. I'm hoping they can help him there. It's a tough journey and it will always be, but never give up! If you would like to talk more my e-mail is englertl@allentownsd.org. I would be glad to chat with you maybe we could support each other!

May 04, 2011
Crap!
by: Renee

Hey Suzi,

What was the outcome from Alexander? Is he still taking the zoloft? Keep your chin up, you guys are doing everything you possibly can to help him!! I know it is hard but you have us =) Call me if you want, or you can use the online support group. bpkidsparents@yahoogroups.com

Renee


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