The school called me for the third day in a row. My son’s teacher told me that my he was screaming and thrashing and completely out of control because he “needed” to eat lunch in the school office, and that it was prohibited. She said that his eyes are wide and full of fear and she could tell that his medicine was doing something to him. Before I left to pick him up, I called the behavioral specialist (I’ve gotten in the habit of calling her a social worker, but she’s not really one) who is in charge of my son’s behavior plan, which is a prerequisite to seeing a psychiatrist. (You may have read in a previous post that the pediatrician who has been administering and adjusting failed med after failed med, finally gave up and decided that my boy’s case is beyond his expertise. He then referred us to a psychiatrist to take over the ADHD issue. It has been three weeks since we did the intake process at the community mental health (the only place our insurance will cover) and we are not even allowed to schedule an appointment with a doctor until the behavioral specialist draws up a treatment plan.) The first call this week was to warn that if his behavior continues, they will have to send him home. The second call was because the boy was in a panicked state & said he needed to be with his mommy. The third call was apparently a surprise to him, because when I walked into his school with his sister still in her pj’s and bare feet (due to the emergent situation.) He saw me and said, “What are you doing here?” “Well, honey, the school called me.” He turned to his teachers and counselor, who were hanging back a bit in the hall, and yelled: “Why did you call her? I’m very angry at you!” It all went down hill from there. I had to carry my son out of the school, kicking and screaming. The teacher carried his baby sister and watched helplessly while I buckled my thrashing hollering child into his car seat. I drove directly to his pediatrician’s office and called them to let them know what’s going on. The receptionist took the phone to the doctor, and he quickly decided that there was nothing that he could do for us, and his only suggestion was for me to take him to the UofM ER for a psyche evaluation. They asked if the boy was threatening to hurt himself or others, and the answer was no. They told me to discontinue all ADHD meds immediately, and said goodbye. I was completely on my own with a child that was screaming at the top of his lungs, “I hate you and you hate me, we hate each other!” When I responded, “No baby, I love you very much.” He would just scream louder: “I want you to hate me! Why won’t you hate me!” “Hate me!” There was much more, but you get the gist. I did what I felt was best. I went home because baby girl was in her pj’s with no shoes and no extra diapers, no baby bag, plus I had no ID on me. I left the screaming boy in the car (he was saying that he refused to get out anyway) while I put his sister into her crib for a nap & turned her fan on high. ( I should explain that she actually fell asleep during all this racket because the boy has the entire household completely sleep deprived.) I ran back out to the car and unbuckled the boy and carried him into the house and into my bedroom, which is farthest away from the sleeping baby. I held him and stroked him and reassured him that I loved him no matter what, and that there was nothing that he could do or say to make me not love him. He calmed down a bit but was still professing his hate for me. He stated that he wanted to go outside and be away from me. I said, ok, you can go out in the yard, but you can’t rage… if you do, I’ll come get you and you’ll have to be inside with me. So he went outside and I started cleaning the house again, but was watching him to be sure he didn’t go out the gate and run away. He was sitting on the porch and I looked at him and smiled, and he said, “Ok, I guess you can love me and I can love you too.” The rest of the day was spent very closely monitoring and interacting with the boy. It was exhausting. He was manic. We were one misstep away from a complete meltdown, I could tell because his eyes were wide and wild looking. He even played franticly, quickly shifting from activity to activity, often losing his train of thought and not even remembering where he set his toy down. Several hours later, the counselor called me back and I did my best to explain what happened, but I feel that she still doesn’t understand how bad it was. Then the teacher returned my call. She and 3 other people had been in a meeting for an hour and a half, solely talking about what the next gameplan is with the boy. I told the teacher I was going to keep him out of school for the last day of the week and let him “detox” over the weekend, and that we’d talk Monday morning about whether he was ready to come back or not. She said that the other witnesses to his behavior thought I should have taken him to the ER. I feel that I made the right choice by taking him home. When the boy was screaming about “I want you to hate me!” All I heard was, “Please, please love me, I need you to show me that you can love me even at my worst!” And most importantly, this psychotic break was brought on by medication and if I took him to an ER, they would just give him more medication. My son doesn’t need a diagnosis of “bi-polar” to be heaped on top of his ADHD, when clearly the meds were the cause of this.
The second medicine the doctor prescribed for my 5-year-old was Amphetamine ER (Adderall) 5mg. We started this new drug over a three day weekend so we could observe its effects before we sent him to school on it. We went out of town to visit friends and exchange Christmas gifts. The boy was an emotional wreck! His dad tried to take him to one of his favorite activities, a hockey game, and later that weekend he took the kids bowling. Both events were ruined because the boy would either throw an all-out fit, or start sobbing (very outside of the norm for our son) if we dared to say “no” to any of his many requests. He would get something in his head and there was no discouraging it! He’s always been strong willed, but it seemed that all of his personality traits were intensely magnified.
First thing Monday morning we called the pediatrician and told him that Adderall was “a fit a minute” and we needed to try something else. Next was Dexmethylphenidate (Focalin) 5mg twice a day. Focalin seemed to work the best, and for the longest amount of time. We thought we’d found “the one.” Three months later the teacher called and asked if we had remembered to give the boy his medicine in the morning, because the mornings had been rough for a while now, but he tends to settle down after his second dose before lunch. The pediatrician suggested doubling the dose in the morning and leaving the second dose at 5mg. I was wary about doubling the dose because the last time we raised his medication dosage he became nervous & OCD-like. I halved the second 5mg pill so he was getting 7.5 mg in the AM and 5mg at school. It didn’t make an improvement. So I did as the doctor recommended and raised his Focalin to 10mg in the AM and 5mg for second dose. Sure enough, teacher reported increased agitation and nervous, jerky hand movements. I observed some “ticking” (he would violently jerk his head to the side while playing his DS- I will probably write about this later.) Doctor brought the boy back down to the minimum dosage (5mg) of Focalin and added Guanfacine (Intunive/Tenex).
Guanfacine 1mg ( Tenex or Intunive- depending on whether your insurance will pay for the extended release tablets, ours would not.) is a non-stimulant. My research indicates that it was used for years to lower blood pressure, but only a couple of years as an ADHD medication. Guanfacine acts in the brain to decrease certain nerve signals from the brain to the blood vessels and the heart. It is supposed to work much the same way to decrease nerve impulses in the ADHD patient. The side effects are the type of side effects you’d expect from a blood pressure medication, ie. sleepiness, dizziness, possible fainting, etc. I was not thrilled. Apparently this works well in conjunction with the stimulant medication because they cancel each other out, sort of like the upper & downer effect. This medicine made the boy exhausted. He could hardly make it through dinner, usually crying to go to bed in stead of eating. And if you’ve spent much time around children, then you know that when they’re exhausted they do NOT display good behavior. I wasn’t surprised when the teacher called a week later and told me that they had been having a rough week, but I was surprised by the behavior she described to me. She told me that the boy kept disappearing from class (into the section that the kids hang their coats in, it is partitioned off by a mostly glass wall). She would find him crouched in a corner, pretending to type while grabbing what could only be described as “imaginary thoughts” out of his head and throwing them away. He told her that he was writing a story about how he, a superhero, was going to get rid of all the bad guys in the world. The teacher also told me that the boy was speaking of his brain as if it were a separate entity that was inside his head, but that it had a mind of its own. She was thoroughly creeped out. Time to call the pediatrician yet again.
We enrolled The Boy in the Young 5 program at the suggestion of his Preschool teacher. She said that Kindergarten isn’t what it used to be when she first started teaching. Kindergarten is more geared toward education and less geared to play, now. As she described the new kindergarten, it sounded as if he would be expected to sit in his seat and pay attention, and the children would be marched around the gym [goose-stepping] instead of free-play. She thought that this high energy boy would thrive in a less structured environment like the Young 5’s. I cried. All I could picture is that my son was going to be the oldest kid in his class on graduation day. One friend reassured me that she was held back but ended up graduating on time, and with honers. Another friend suggsted that the boy would have such an advantage, and would more likely be a leader than a follower. The thought of my kid having an extra year to grow and mature before being thrust into academia won out over the possibility of him having to struggle and be stressed. Actually, the one comment that made me decide was from my father-in-law, a man of few words and whom I respect and love very much. I whined to him about my fears of my son getting his diploma just a month shy of his 19th birthday, and I mentioned that daddy and I both were already enrolled in college before we turned 18! He said, with a smile on his face: “And look how that turned out.” [Ouch, but true.]
I got my first phone call after two days of school. My boy was too active for the active-kid’s class. *Sigh By the end of week 1, I was in a meeting at the school to discuss his activity level. The teacher assured me that he was a sweet and sensitive boy, who was full of empathy and compassion for his classmates…but that he was doing cartwheels on the rug during rug time. He had absolutely no spacial boundaries and would get right into the other children’s faces until they pushed him away. He was climbing over desks and accidentally knocking them over, she reminded me that he was not aggressive, just very very active. Over the next two months we had “Connors Assessments” done by teachers, & family members. We had observations done by the school psychologist, school occupational therapist (to help with sensory issues), and an outside (but contracted through the school) psychiatrist. All of which suggested that our son would most definitely benefit from medication. My husband wasn’t convinced. Hubby took the “boys will be boys” stance. He filled out his Connors test with mostly “No” and “Not often” where everybody else was saying “Yes” and “extremely often” on the same questions. Lets face it, hubby thinks the boy poo’s rainbows!
At the end of October, and at the suggestion of 5 of the boy’s previous and current teachers and aids, a speech therapist, occupational therapist, psychiatrist (school’s), psychologist (ours), and our pediatrician, we started our first ADHD medicine. It was the lowest dose of Metidate (methylphenidate 10mg). The difference was immediate. It was amazing to have a conversation with my son and actually have him make eye contact. I hadn’t realized it before, but talking to the boy was much like talking to Stevie Wonder (picture head movements)—Boo! Poor taste joke! The new drug worked for a month or so and then the teacher called me up one day and asked if I had remembered to give him his medicine. Yes, same time, same breakfast, same everything. Apparently his body had gotten used to it. Our pediatrician raised the dose to the next step up, 20mg. The boy showed signs of OCD behavior the very first day. After three days on the new dose, I got another phone call from the teacher. She said the boy was very stressed if anything was out of order, or the other children did something that was against the rules. She told me that he got up while she was teaching the class, and went to the white board and proceeded to put every student’s name card in a row all the way across the board. Then when cleanup time came and went, the boy continued cleaning the floor until every speck of paper or fodder was cleaned off the aged school carpet. There was no stopping him. He absolutely HAD to do these things. I called the boy’s pediatrician and he said, “Oh, that’s not good.” and prescribed the next drug.