Once I stopped giving Zack the Neurontin he quickly calmed down to the normal level of chaos, rather than the bizarre and euphoric state he had been in while taking the new medication. This was another validation that it was the medicine making him behave so bizarre.
I am a person that does things, if there is a problem I fix it, maybe that is the stereotypical characteristic of a first born, which I am. It seemed to me that if I researched enough, and prayed hard enough I could get Zack well, or better.
So, from one of the countless books that I read, many children “rage” after eating certain foods or dyes, so of course I changed his diet to a gluten free, wheat free, sugar free, and caffeine free diet. I was reaching, anything to help my child, food dye, grains, detergents. I remember sitting in a dermatologists office asking for a battery of test to see what he was allergic to, and the doctor asking me “You think an allergy is causing his rages and behavior problems?” and I , through tears, replied “I just want to know what is wrong with my child.” I was willing to try anything to help him. Let me say, this is not easy. To feed a family on a gluten free, wheat free diet, additive free, coloring free seemed impossible, just about everything it seems has one or the other in it.
He use to love chicken nuggets so I decided to make my own with Soy flour. I spent an hour dicing then flouring and frying chicken nuggets, just for everyone to turn there noses up at them,and the response was of course “No way!!” even my husband. I admit, they weren’t very good.
I started feeding Zack all kinds of vitamins, everything I could read about that may help stabilize moods, Lethicin, Blue Green Algae, Omega3 and countless others. This was always a trick trying to open the capsules (since he could not swallow them) and trying to disguise them in a home made milk shake, juice, yogurt, pudding, whatever I thought might get passed him. All to no avail, he could always distinguish the “different” taste. I gave up on the diet after about two weeks of seeing no results, not to mention having virtually nothing to eat. I love a challenge, but this was really getting difficult. Not to mention that it made no difference in his mood swings, irritability or rages.
Zack also has this obsession with always wanting something. It seems every day he thinks of some new toy, gadget, collectible that he needs, he MUST have. He will focus on one thing and can not think of anything else. He will cry, beg, plead, scream, on and on for something. I have learned this is called “Mission mode”. When these children get in this state of mind that is literally what it is, a state of mind that they are unable to get out of. The brain is unable to make that switch from the obsessive thought, no matter how irrational it may be. He will literally get stuck on a “need” or want for days at a time, MAJOR Cognitive Inflexibilty. It is exhausting dealing with this.Once the thought is out, gone, passed, it is over and the “thing” wont be mentioned again. It’s simply waiting it out, however long and stressful that will be.
I joined several support groups online that were suggested in the book for parents and loved ones of people with bipolar disorder. Zack still did not have this official diagnosis; however I truly believed this was the illness he was suffering from. I spent hours on the computer in chat rooms and list serves “talking” and reading problems from other parents of children with bipolar disorder. I became consumed with what they had to say. I started fearing we would have to send him away to a residential treatment center like some of the other parents.
Some of the children were very violent, to the point of pulling knives on there parents, or brandishing other weapons, the parents were afraid to sleep at night. These were things that had never happened to us. Zack had never tried to do such physical harm, with a weapon, and I have never been afraid that he would intentionally and severely hurt me. Yes, during a rage, he would hit, kick,throw things and bite, but I truly believe he has no control over himself when he is in the middle of a full blown rage. If anything, rather than harming me, he seems to love me too much. He is constantly smothering me with kisses, holding my hand and always wants to be near me. To this day he is very affectionate, even at 17. His anxiety is always high and needs to know where I am almost all the time. I decided to stop reading and contacting these groups, they were doing me more harm than good most of the time. I realized that I could not compare my son to those I was reading about. We have no guarantees about what may happen in the future, how bad or how good he may be. We live each day one at a time. We cherish the good, calm days and put the bad ones behind us. (cont)
There he is on his 15 th birthday, he LOVES his Georgia Bulldogs