Following Bunny Trails

“I don’t have ADD, it’s just that…OhLookAKitty!”

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I May Have Some Explaining To Do

I still haven’t filled the prescription for Dexedrine 5mg, the stimulant medication that the psychiatrist gave us.  Part of the reason is because I haven’t been shopping lately, or been anywhere near our pharmacy.   The other reason is because I really don’t want to put him back on a stimulant so soon after the last one made him manic.  I was informed from the behavioral specialist, that the psychiatrist will kindly ask us to seek a second opinion [permanently]  if we refuse to give the medication that she has prescribed.  I guess she feels that she is asking us to do what she thinks needs to be done for the boy’s ADHD, and if she takes her time to diagnose a disorder, then we will be considered “non-compliant” if we don’t follow her professional opinion.  I guess I can understand that.  She is a psychiatrist, that’s her job, to prescribe psychiatric medication.  I’m either going to have to fill that prescription and at least give it a try, or I’m going to have a lot of explaining to do.

It has been a few months since the manic episode, and my life has drastically changed since he has been off medication.   The big change is that I can no longer just take off and go to this store or that store and pick up things whenever I want to, I have to schedule shopping trips and public outings.  I either have to make sure my mom is available for babysitting, or I have to wait until after dinner, so daddy can watch the kids.   I did take the boy shopping on one occasion, and it went relatively well.  I had to constantly redirect him back to the cart, and tell him to keep his hands off the merchandise, but there were no fits and no “cleanup on aisle 5” incidents.  I would call that a success, even if it was stressful for mommy.   I am ok with the lifestyle change.  I am ok with having a rowdy boy at home.  I’m fine with the fact that we might have to cut a graduation party short when we see signs that the boy’s becoming overstimulated and it’s time to go.  I’d rather schedule my shopping trips on a day when the boy is feeling good and isn’t being obstinate or sassy, then to medicate him into good behavior or complacency and have to go through the “come down” time every afternoon when the medicine is wearing off and he is hypersensitive to noise and is spacey and cranky.  I love the weight gain, growth, and appetite that I’m seeing with my normal, unmedicated son.

The hubby and I were really hoping to go at the boy’s ADHD from a natural standpoint.   Our first step was removing the dyes and adding Nordic Naturals, Children’s DHA to our daily multivitamin.   Removing the food coloring has naturally lead to less sugar intake, but recently it’s been difficult to keep the excess sugar consumption down because of all the picnics, graduations, and parties. Plus, there’s the natural inclination toward ice cream when the temperatures soar in the summer.   I have slowed my blogging recently because I have been doing some research and reading (mommy doesn’t have a lot of spare time, so it’s kind of ‘either or’ at this moment’).  I have always secretly believed that my son can “grow out of,” or more like “develop out of” his ADHD.  I have also come to believe that there are ways to help the brain develop the areas that may be lacking, or where brain synapses are underfiring.   Keep in mind that I am not a doctor, and certainly not a brain surgeon, but as we read and research and educate ourselves, most of us form our own opinions and beliefs.  I hope to keep you informed as I learn and test out new theories.

Dexedrine 5mg tablets

Dexedrine 5mg tablets (Photo credit: Wikipedia)



The First Psychiatrist Appointment

Well, we made it through our first psychiatrist appointment.  We walked through three hallways and came to a stop at a very warm office.  It was warm by choice.  Our doctor was from India.  She has a very pleasant soft voice and a easily understandable accent.  She asked me about the medicines we tried.  I had to go off memory because I didn’t print out his medicine sheet in advance.  Plus, I had miscalculated the amount of time it would take for me to cajole my son into getting dressed and putting socks and shoes on, and then I couldn’t find my wallet, of course.  My son gets his ADHD from somewhere, right?   After I stumbled through the list of failed medicines, she turned to me and asked what our day to day problems and concerns are.  I looked at her and back at the boy and whispered, “I really don’t want to talk about him in front of him.”  She sent him to the play room next door, where we could him playing through the paper thin wall.  She turned to me and I said, “he is the most strong willed child I have ever had the pleasure of knowing.”   She asked me some history, yes he has been strong willed since a collicky newborn.  I told her that he was up and over the rail of his crib and by 18 months it was converted into a toddler bed for his safety, and that’s when the power struggle over sleep began.  I told her that we completely gave up on trying to enforce naps at age 2,  and about his night terrors until age 5.  She asked how my pregnancy and birth was, I told her about the emergency c-section and the cord being wrapped around his neck three times.  She wrote that down in her notepad.  Then she said that she was going to bring the boy back into the room and sent me out to the play room.  In the play room I could hear through the wall that the boy was explaining the fish he caught over the weekend.  “I caught bluegill and red ears.”  I heard her ask, “Wedder?”  “Red Ear.” “Redder?”  “RED EAR!”  I giggled to myself, poor boy, doctors don’t fish-hahahaha!   I could also hear her redirecting the boy on several occasions.   They called me back into the room and the doctor said that he was very very active.  She attempted to read him a Dr. Seuss book and he wouldn’t pay attention through even one page.  She added that most of her other ADHD children love to be read to, but the boy refused to pay attention.  I informed her that he has hated Dr. Seuss books since he turned 4, he goes so far as to pull them off the shelf and throw them on the floor…I have no idea why.   I added that if she was reading a nature book, he would have paid attention and been very involved.  Am I making excuses for the boy?  Oh, speaking of excuses… I forgot to mention that the behavior specialist attended the appointment with us.  She did mention to the doctor, the seemingly uncontrollable noises and outbursts.   The doctor asked if he often fixated on a sound or word.  The specialist told the story of her observing the teacher reading a book to the classroom, and the teacher read “Moo…goes the cow.”  And the boy started mooing and refused to quit mooing until he was sent into the hallway, where the specialist peeked in on him and he was still mooing to himself.  I interjected that I had ADD as a child, and I quite often fixated on a word and couldn’t get it out of my head.  I believe I was 18 years old when I first heard the word “persnickety.”  I started giggling and could absolutely not stop laughing!  I happened to be in a college Creative Writing class at the time, and the professor eventually asked me if I was ok.  How embarrassing!

But I digress [bunny trail]…  The doctor reaffirmed the diagnosis of ADHD, and added the word “severe.”  (The behavior specialist raised her eyebrows at the diagnosis, and said something like -I’m paraphrasing- “that’s it, only ADHD?”  {I told you it’s not tourettes, darn it!} )   She told me that we had a choice between Tenex (which is the generic, non time release form of Intunive- which caused him to have delusions of his “brain” being a separate entity from his body… *see More Trials With Medicine)  Or another mild stimulant.  Great, just what I didn’t want.  This medication is called Dexedrine 5mg, and we are supposed to give him 1/2 tablet every morning.  It starts within an hour an lasts for 4 hours.  I have not gotten the prescription filled yet.  I don’t know what to do.

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Now That’s Commitment!

Since my last post was called, It’s Not Tourettes!  I have a story for you about a brilliant 5-year-old I call, “The Boy.”   This takes place when he was on an ADHD medication called Focalin.   If ever you don’t think your children are listening, I got another thing for ya’!  I must have, at some time, expressed concern about the medication possibly causing “tics” when the dose is raised.  I was told to keep an eye out for them, and if any occur, stop the medication and call the doctor immediately.   Well, when 5 mg of Focalin ceased working after being the drug we would have called “the one” for the last two and a half months, the natural choice was for the pediatrician to raise it to 10mg.  But we had some issues with Medidate when they raised it from 10 to 20mg, after it ceased to work after a month or so.  So I took it upon myself to cut the pill in half, I was told by the pharmacist that this would cause no problems, as it was not a time release pill.  I decided to start with 7.5mg and ease up to 10mg if needed, though I was secretly hoping it wouldn’t be needed.  After 3 days of 7.5mg, the boy’s teacher called and said there were still problems.  Darn.  I raised the Focalin up to 10mg as the doctor suggested and sent the boy to school.  He comes home in his usual, I’m-coming-down-from-my-meds-leave-me-alone daze, and says school was “fine” when asked.  He went straight to his Nintendo DS and began playing video games.  As he was playing, I was watching him and I saw that he was repeatedly thrashing his head to the side.  Uh, oh, is this a tic?  I observed him some more.  He continued jerking his head from left to right, and I noticed that he was working his jaw.  I should explain that he was just getting over a nasty cold, so I asked him, “are your ears clogged up from blowing your nose?”  The zombie-boy responded, “I dunno.”  (In other words, “Unga bunga, can’t talk, Playing!”)  But kept right on twitching.  The next day I observed him again, because I had assumed he was working his jaw and thrashing his head to clear his ears.   As soon as he started that DS he thrashed his head, and continued through his whole game time.  I asked, “why are you doing that with your head?”  He responded, “because I have to.”  “What do you mean, you have to?”  “I need to.”  “Why do you need to?”  “Because it feels good when I do it.”  “Doesn’t it hurt your neck or give you a headache?”  “No.”  The next day, while the boy was at school, I called the doctor and told them what I had observed.  They told me to discontinue Focalin.   When he came home from school I let him watch tv.  He whipped his head to the side a few times, but nothing like the DS.  He eventually bored of the TV and moved on to the DS (I know, what a great mom, right?)  As soon as he gets on the DS he starts violently thrashing his head to the side.  I say, “can you stop doing that with your head?”  He says, “No.”  I say, “It can’t be good for your neck muscles or your head to be rattled around like that!”  He ignores me and goes right on playing and twitching.  I get an idea.  I grab the phone and walk out of the room.  I come back a couple of minutes later and say, “I just got off the phone with the doctor, he says that it’s the DS that is making you do that with your head.   He told me that as long as you were jerking your head like that, you can’t play video games.”   And I took it away for the night.   Do you know that the next day he came home from school and never jerked his head again?  Now That’s Commitment!   He must have heard me talking to someone about being worried about him getting “tics” from his medication.  I don’t know if he just got this idea stuck in his head, or if he was enjoying all the time I spent observing him, or if he’s the world’s best actor…but THREE DAYS?   I don’t know if I should be very impressed or very scared!  I told the behavior specialist who kept mentioning Tourettes Syndrome as a possibility, “Don’t even mention Tourettes in front of my son.”  I have this crazy feeling that if we talk about it, and it’s overheard… oh I hate to even think of the possibilities!

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It’s Not Tourettes!

I’m really nervous for tomorrow’s psychiatrist appointment.   Months ago, my son’s pediatrician asked us to continue our ADHD care with a psychiatrist after 5 different medications that he prescribed were considered “failed” because of undesirable side effects– and the last one caused him to suffer a “manic” episode.   It has taken us two and a half months to get our first appointment.   I have thought about cancelling it on a few occasions.   I’m nervous and have imagined a scenario where the psychologist spends some time with us and then says, “lets try this drug, it might work better for him.”  Or worse yet, I’m afraid that they are going to try to pin a diagnosis on him that is more severe than what he actually has.  I know, it’s totally unfair of me to make assumptions.

My fears are not completely baseless though.  I have written before, of the  behavior specialist that we must meet with in order to even make an appointment with the psychiatrist.  She came to the boy’s school and observed him during gym class.  He was running around like a maniac and making high pitched, almost chirping, noises.  I can not possibly spell the noise out to give you an idea of how it really sounds, like they do in the comics and Sunday funnies, but I can tell you that this noise has gotten him into a lot of trouble.  He has done it in class and disturbed the peace quite a few times with this weird little noise.  The boy once explained to me that it was his bat superpower and he uses it to repel bad guys.  (That’s what you get when you cross Batman cartoons with The Wild Kratts!)  The teacher tells me that she thinks he can’t help but to make that noise.  I agree with her somewhat.  When he’s overstimulated or stressed, he will still occasionally make that noise, I feel like it’s a “tension breaker” for him.  But when I tell him to stop, and use 1, 2, 3 counting, he stops the noise.  The behavior specialist who observed these noises, thinks that he might have “something else going on” and has mentioned Tourette Syndrome on several occasions.

Attention deficit and Tourette Syndrome do go hand in hand in many cases.  They do have similar symptoms, they are both neurological disorders.   But for crying out loud!   Tourettes?  Cut me a break!  ADHD is all about impulses and trying to control them. Making weird, inappropriate noises is par for the course with young children with ADHD.  I am not saying it should be allowed, or go uncorrected.  In fact, what I really want from the meetings with the psychiatrist is for someone to teach him how to cope and control his outbursts, be it noises, or temper, or need to run or move or tip his chair over (and over and over).  Drugs don’t teach children how to take this energy that is welled up inside and direct it, or to hold it in until it is a more appropriate time.  After our recent terrible experiences with ADHD medicines, I’m not really ready to jump right into another prescription.  I would like to give him some time to grow over the summer and be the wild, fun, free, funny, intelligent, inquisitive, inventive boy that our unmedicated son usually is.

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The Outcome of the Assessment

I wrote about the positive behavioral assessment in my previous blog post.  This is a continuation of that post, it was becoming quite lengthy.  First of all, the assessment is supposed to be done by a “team of people” according to the rules and regulations.  Ours was done by the school psychologist.  I am not going to be angry about this because we most likely “tied the school’s hands” by going to half days and also by requesting the assessment so close to the end of the school year.   Since the beginning of the year, we have had “a team” of people helping us with our ADHD diagnosis.  We had a psychologist that did not work for the school, but was called in on occasion to help with special behaviors.  He came to the school and  observed the boy and wrote up a report suggesting to us and his pediatrician that he would very likely benefit from ADHD medication.  Several teachers that were familiar with the boy filled out Connor’s test sheets.  And during the times we were trying different medications, the teacher kept a close eye on him and was in constant contact with me.  No, I don’t feel jilted by the school system at all.

On the last day of the school year, I brought in our final snack for the classroom and attended a meeting with 4 of the original group that met with me when I requested the assessment.  Plus I was introduced to the new special education teacher.  The good news is that the boy qualifies to keep his IEP (Individual Education Plan) under the category “otherwise health impaired.”  The bad news was that the boy was tested for academics, and he is a bit behind where he should be.  No surprise there, first of all, he’s nearly impossible to test.  And secondly, he spent more time outside the classroom this year, than inside.  The special education teacher told me that she wasn’t 100% sure what was going to happen next year, because her program was changing at the end of this school year.  She said that she would either be in the classroom with the boy, or have him come outside to a room with her for anywhere from 30 minutes to 3 hours, 4-5 times a week.  She would help redirect him to his schoolwork if she was in the classroom, or help him with extra studies that he may fall behind in throughout the year.  She would also teach him strategies to cope with the stimulation and teach him appropriate responses to authority and how to keep from making the noises and outbursts that got him in so much trouble this year in the Young 5’s class.  The special education teacher was very kind and offered her number in case I had any questions over the summer, she offered to attend our counseling sessions with us even.  I really like the thought of him being taught to cope and function with ADHD, but I’m wondering if the vague “30 minutes to 3 hours” a day was going to be enough.   I actually asked, “What about the other 6 hours he’s expected to sit and pay attention in the classroom?”  The formerly argumentative special education director just looked at me and said, “We will have to figure that out next year.”   I left the room with my original feelings reconfirmed, I’m going to have to homeschool.

I followed out the boy’s Young 5’s teacher and as we walked back to her classroom.  I asked her, “what do you think about all this?”  She was hesitant, but answered, “I think, unless something changes over the summer; either they find a medicine that works for him, or he grows out of it [hyperactivity], I’m afraid he’s going to have a really rough time next year.”  She continued, “they will probably suggest half days again.”   I agree.  If he was having difficulty with the stimulation while only going half days this year, how is he going to be able to attend a full day of kindergarten, where he will be expected to sit still for a large portion of the day?  Yep, we’re homeschooling.

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Positive Behavior Assessment

We finished out the school year by going for only half days.  I brought him to school after lunch and before recess, that way he doesn’t have to struggle through the morning.  The mornings were a difficult time for the boy because he was called to do “rug time,” where he was expected to sit still on a rug and participate in the morning rituals.  Shortly after rug time was “rotation station,” where the children worked on projects at a table for a few minutes and then they would rotate to the next table, where they would have a different project to work on.  This is a brilliant idea for 5-year-olds because their attention span is so short.  Except with a child that has ADHD/ADD it may take them the entire time at one table to bring themselves under control, and they may have just started on their project when rotation time comes.  Plus, transitioning may sometimes be particularly difficult for children with special needs, so I could see how a “rotation station” could cause frustration.  So we did away with the difficult mornings and just came for some recess, social time, and a little more learning in the afternoon.  Unfortunately the shortened day was still difficult for him.  I had assumed everything was going well because I was no longer receiving the phone calls every couple of days, or even daily.  I found out later that he was still needing to leave the classroom and sit on the beanbag chair in the separated part of his room several times a day.  And that he was running around like a madman in the gym, screaming and clapping his hands over his ears, etc.  The biggest surprise was when I was told that he would be on the computers and if someone so much as brushed up against him, he would scream at them.  I couldn’t believe my sweet, social boy was turning into an angry kid who yelled at his peers!  His teacher told me, “He’s had a pretty rough year, maybe he’s just ‘had it’ with his classmates.”

When we were experiencing failure with medicine after medicine, and the end of the year was approaching, I put in a formal request for the school to do a “positive behavior assessment.”  Once you request one of these to be done, by law, the school has around 2 weeks to start the process and an additional 30 days to complete the assessment.   These are very involved, so I’ll just give you a general idea of what they are and why I requested one.  First of all, I should tell you that my son has an IEP, or Individual Education Plan, for speech.  He has been in speech therapy since age 2 1/2, when he just completely stopped talking, or even attempting to pronounce or repeat words.  At age 5 1/2  his speech therapist told me that he was completely caught up with his age group’s expectations, and that she was going to release him and he would no longer have an IEP.  I immediately thought to myself, “Woah, this isn’t good!  We do not have his ADHD even slightly managed, and now he is going to lose his education plan?  If anything, we should be adding addendums to his education plan in regards to his ADHD!”   I wanted some concessions made for my son, I need him to be given the opportunity to step outside of his classroom and be able to collect himself when he feels like he is becoming overstimulated.  I may need to request extra time on tests or maybe that he be given his tests in the library.  He may need an assistant or therapist inside the classroom to help redirect him back to his studies.  He may need to go out of the classroom and have some individualized one on one tutoring to keep him up with the rest of the class.  If he lost his IEP now, he would be expected to perform as well as the rest of the class, and without any provisions to help him achieve his goals.  No, I couldn’t throw the boy to the wolves, so to speak.

The meeting for the assessment didn’t go quite as expected.  There were 7 people in attendance, including myself, the boy’s current teacher, and his speech teacher.  They opened the meeting by asking me what I want for my son.  I told them the best I could, that I felt that if some concessions weren’t made, and if my son was expected to perform up to class standards with his disability, that next year was going to be another unsuccessful one.   I told them that I wanted stuff that helped my son this year, like being able to leave the room and relax on a beanbag chair in a quiet safe place, to be in his IEP so next year’s teacher knows what to expect.  I want the kindergarten teacher to have a list of things that helped the boy to be successful, and a list of things that caused him to become overwhelmed.  But I ended up arguing with the special education director most of the time.  She even told me that I didn’t know what I was asking for, and that I was misunderstanding the definition of a “positive behavior assessment,” and even an “IEP.”  She argued that the boy wasn’t going to lose his IEP, and then she argued with his speech teacher about it.  So, thankfully, the boy’s speech teacher took over and got everything in writing and got the ball rolling on the assessment.

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Compulsed by Impulses

Disciplining my son has always been so difficult for me because I believe that his behavior is sometimes fueled by impulses that he can not control, especially as a five-year-old.  I never know if he is the world’s most strong willed child, or if he Just Can Not Quit the behavior.  What makes me think that it could possibly be an issue of his ability to control himself, is because I practice consistency to the point where I’m almost obsessive about it.  I’ve seen the results of parenting without following through on “threats.”  Woe to the parent of the child who isn’t afraid of consequences!  And for a while, it was “woe to me” because no matter how consistent I was with the timing and type of consequence, the boy would push it one step past the proverbial “line in the sand”, and force me to discipline him.  He just Had to say it, touch it, do it, that one last time… it was as if he just could not help himself, as if he were compulsed by impulses!

I found myself wondering why anyone would not just stop!  Why they would push until the threshold of tolerance was crossed and they’d end up in time out, every time!   I do remember when I was quite young, I was excitedly bouncing on our family friends’ couch.  I was told to quit, I was told to quit bouncing a second time, and then their grandpa lightly swatted my behind.  I was hurt and humiliated that this grandfather figure had gotten so stern with me, why hadn’t I just stopped when he told me to?  I can tell you from experience, the person with ADD/ADHD has a hard time actually hearing and processing a command.  My brain was so busy going “Weee…Weeee, this is fun!” that I didn’t even hear the first command to stop bouncing on the couch.  In fact, it was probably just starting to register that a command was even said when the swat on the behind came (and no, it didn’t hurt… just my ego.)  This is why you will often hear me repeat a command three times in quick succession to the boy.  I know #1. that he’s most likely not going to hear the first command, and the processing will start with the second command, and recognition happens with the third repetition.  And #2. He moves so darn fast!  If I don’t get his attention very quickly, he’s gone out of earshot.

Because of my personal experiences with ADD, I have this ability to identify with my son, and I think it helps me to be more patient with him at times.  But it may also be causing more internal confusion.  For instance, if I had no idea what ADD was all about, I might just set rules and follow them strictly.  In stead, I find myself struggling with “is this an impulse or is he being directly defiant?”  Don’t get me wrong, I’m not going to allow unacceptable behavior to continue because I think it may be fueled by impulses, or sugar, or food dyes and additives.   But there have been times in the past where the boy has spent a good chunk of the day in his room because he just can’t seem to behave for even a few minutes at a time.  Maybe what he really needed was a “reset,” and to have some extra special time with mom, but instead I was Mrs. Followthrough.  These are the times when the fine line between disciplining and understanding, correcting and comforting are blurred and confusing.  All I can tell you that this is all a learning experience, and that I’m sure I’ve crossed, stepped on, tripped over, and fallen onto that fine line.