Our Journey with a Sensational Child

Unreachable

Unreachable

The Adderall seemed so promising at first…but alas, it didn’t work out.

This is what I wrote to SuperE’s pediatrician in early September, about the 2nd week of school:

“The main reason for my son to take medicine is so he can perform well in school, learn what he should, along with his peers.

At this point he can’t, won’t, do math that he learned in kindergarten. He’s in second grade. He could do this a year ago and throughout his first grade year. But now he’s disrupting class, plus he’s making, and has already made, a first impression with his new classmates of being a troublemaker.

We waited over the summer with a new medicine that we knew wasn’t working well, so we could get a baseline of information from school. In the mean time this summer, in our new neighborhood, it was established that he was not welcomed in the group of other boys his age.

Last year I was looking forward to a year in a school where he would be appreciated for his strengths and not his idiosyncrasies, and I got that. Now I am just hoping that he can stay up with the rest of his class and not get kicked out of school. Or maybe he could make a friend. I’ve given up the thought of the assessments for the Davidson Institute, though 5 months ago the Gifted Development Center thought he was capable of meeting the challenge.

He wasn’t a troublemaker before. He was a nice sensitive child, a very bright person who had his peculiarities, but could learn and didn’t prevent others from learning.

Now I get a call or email from his teacher every single day. How is this considered okay?

We’ve changed all that was positive with his medication. We removed him from the medication that worked pretty well and put him on medication that doesn’t, or perhaps just a dosage that doesn’t. Why are we not making changes now to fix that? What good is there in waiting? I see a lot of harm being done waiting. He’s being uncooperative and I’ve received complaints from school, Tae Kwon Do, and most recently soccer. We are establishing habits, bad habits, of his own behavior, and of other people’s reactions to him. We are doing harm.”

Since I wrote this note, the pediatrician referred us to a psychiatrist who could work out the appropriate medication.  We went back to the Concerta, but only the 36mg dosage, and that was a little better, and then we augmented it with Guanfacine.  We are ending our 2nd month with this and it is definitely workable, but it also appears that he’s getting used to the medicine and it’s less effective as time goes on.

I had a short conversation with his teacher recently about how things are better now compared to when school started, and she noted that it was night and day, and that previously, he was “unreachable”.   For his sake, I hope we never have to go through that again.

Medication Break

TakeBreakThe new dosage of medicine (Concerta, 54mg) in the grand scheme of things was apparently a pretty high dosage.  We changed doctors because of a move, and the new one said she wouldn’t prescribe that amount for a 6-year-old child, as she thinks it’s too much for his size.  She suggested that since it’s summer, we try to do without medication for a few weeks, or perhaps the whole summer.  I was not happy with this at first, but warmed to it after a bit of thought.  If we tried a new medicine later, perhaps it would be good to compare the results to results with Concerta, and also with a non-medicated day.

So, on a Saturday morning we didn’t give him his medicine.

Following are the results, all out of character:

Day ONE off meds:

• Destroyed a leather chair by drawing in pen all over it. Poked a hole in it too.
• Shredded a magazine
• Didn’t seem under control
• Couldn’t finish ONE task, even with lots of reminders and help. E.g. Breakfast, getting dressed, putting something away, cleaning up the spilled breakfast, going into the other room, closing the door,
• He ate two lunches and 3 snacks and was hungry before dinner. (Good news – much better appetite)

Day TWO:

• Throwing handfuls of rocks into the grass
• Smashing wadded up tin foil into our new trees
• Didn’t seem to hear when I was yelling at him to get out of the way of the door of a grocery, several times

Both days 

• Nervous energy
• continuous noise / talking
• Banging on things, or things together
• Continuous movement
• Disregard for boundaries, destroying things

Positives: 

• Sparring for Tae Keon Do was very aggressive.
• Greater appetite

Wondering about Day 3 of medication?  Ha!  That wasn’t going to happen.  We started on Adderall on Day 3. And that was great news as with the lowest dosage, we saw wonderful improvements, over no medication, but he said he liked the way he felt better than when he was on the other medicine.  Wow, great news!  He didn’t give much in the way of examples, but when I asked things like “do you feel better inside?”, and “do you like it better than the other medicine”, he said yes. I also asked if he felt better on the outside of his body but he said No. I was trying to get to the jumpy/nervous energy behavior, but I’m not sure I succeeded in communicating that.

After almost a week on that dosage, we could tell when we picked him up from camp that he wasn’t as under control as he had been previously.  He agreed and we upped the dosage once per the doctor’s recommendation.  So far so good… His account of the impact of the latest medication: “I try harder.”  Let’s see how long this works well for him.

I wish we’d changed medication (versus continuing to increase the previous medication’s dosage) sooner, but you just can’t tell how it will work out.  We try, we assess, we learn, we improve.  And we are patient.

Revisiting Medication

We’ve been doing so well for so long, but we recently hit a snag.2013-05-30

Our pediatrician recommended that in the new school, we not share with the teachers that SuperE is taking medication, so that he won’t suffer from any changed opinions related to the label of ADHD.  She also has not diagnosed him, though we’re going through a medication regime.  I’m not sure she’s wrong about this, as I have seen some people’s behavior change when they have applied the label to him.

We just had a teacher conference, and learned that a therapist came into the classroom for 45 minutes to observe all 16 children, and she ended up with the most to say about our SuperE.  She said that he could use Occupational Therapy for fine motor skills so he doesn’t struggle so much with his writing, he could use speech therapy for Ss and Ls, and his lack of attention is “impacting his work”.  He’s the youngest child in the class, at 6, so I’m not sure if he’s being compared to the right level of progress or not, but it’s something we need to look into.

In any case, I contacted his pediatrician again to let her know that there has been an attention issue detected at school, despite the current medication.  Our options are to increase current medication a little, or try a new one.  Yuck.  Okay, we’ll think about this.

I also recently asked SuperE if he notices when the medication is wearing off every day.  He said, yes, and that he notices it because he starts making noises.  Singing, clicking in his mouth, and other verbal sounds, typically.  I’ve noticed that the time before medication has been getting worse, from the perspective of noise and ability to stick to anything for any amount of time.  I asked him if he’d like to see if a little higher dosage would be good, or if he’d like to try something else (without mentioning any issue with how things are going now) and he said he’d like to try a higher dosage. With the doctor’s blessing we increased the dosage a bit and SuperE reported focusing better at school and also “making noises later in the day”.

The pediatrician also noted that kids don’t like to pay attention to things they’re not good at, so she asked the teacher to indicate during what activities there is inattention.  Just during writing, or other times?  After the teacher thought about it, and admittedly two days after starting the increased dosage, she responded that perhaps “inattention” wasn’t the right word and “easily distracted” was better.  Not coincidentally, in my opinion, that morning while talking to the teacher, I was interrupted by SuperE a few times and I said, something like, “Sorry, I’m easily distracted.”  Oops, by bad.

 

Today was a great reminder of the best thing to focus on when parenting, especially with kids with ADHD: Patience.  I’ve known this, I’ve practiced this, but it does not come naturally in many cases, and today was a good example of how easy it is to slide back into a reactive mode.

Mornings and evenings, before and after the effectiveness of his medication, are the most difficult times.  In the mornings, all he needs to do is get dressed, eat breakfast, and brush his teeth, but it takes my constant involvement to make any of those things happen. And adding more time to get them done doesn’t help, as it’s an attention issue.  In addition, sometimes I forget not to tell him something else while he’s working on a task, and then I kick myself afterwards.  It’s hard enough for him to stay focused without his mom distracting him.

He often spills, on the counter, on his lap, sometimes even the whole plate or bowl is lost.

I didn’t tell SuperE that I was doing an experiment, so that he couldn’t consciously impact it.  I just told him that we were out of yogurt for breakfast, and, “Look at this! We have Cap’n Crunch left over from camping!”  He was very happy to bite.  He crunched away about 1/4 of the bowl before something caught his attention and … what was that sound?  The entire bowl of cereal was now in his lap, on the chair, on the floor and on the dog’s back. The dog knows food is likely to fall from him and positions herself in the best place for snacks.

So we learn… his level of interest in the food (whether sugar-related or otherwise) probably doesn’t have a long-term impact, just short-term, on his ability to focus on it.

(This post was written in July, 2013)

Child’s View

LessonsLearnedWe started our son on a small amount of Ritalin before and after the Concerta as the doctor recommended, and I may have seen a little improvement in the first day or two.  But then he asked me, even though I’d explained before, why he needed to take more medicine.  I told him again, that we’d seen he was getting to be so sad before and after the medication recently, and perhaps we could make the transition a little easier for his body with a smaller dosage here and there.  He thought about it and said, “I’m not sad.”  We talked about it a bit more and I decided that he is really in tune with his body and the way he feels, and ended up giving him a choice, whether to make this attempt to avoid the sad emotions more, or to stay with the situation he’d had for the last couple of months. He said he wanted to stick with the previous plan, and we agreed that we’d keep an eye on it and discuss it if either of us feel he needed a change.

I fully expected to see more sadness, more crying, and to have to show him in the moment why it would be best to extend the medication hours, but that’s not what happened.  Things went back to the way they were, and he was fine (read: standard ADHD behavior without the super-high emotions) before and after the Concerta effective time.

I gave it some thought and realized that I keep looking at him through this ADHD lens, and didn’t notice that other stresses were at work on him.  We’d been having discussions of home and school moves that I’m sure have been weighing heavily on him.  SuperE helped me look at things differently, and not just assume that medication dosage was the problem.  I really need to stay in tune with all of those factors as we go through this journey.  Of course, I know that the medication has to be tweaked as his body changes, but perhaps a bit more of a broad view of things should be taken.

Another day, another lesson.

Thank you, SuperE – I will continue to work hard to give you the best upbringing that I can.

 

Medication Update

concerta_18mg_mcn58500

Wow, I didn’t realize how long it’d been since I posted something here.  I supposed that’s a testament to how well things are going on the medication, and probably also to how busy I’ve been.

We started with the Ritalin and things got a bit better, and we ended up increasing the dosage slowly, getting better results each time. His teachers noted that he was doing much better, but could also recognize when the dosage was starting to wear off near the time the next one was due.  We had a little difficulty with the school’s administration of the medication as well, with them forgetting to give him his meds (not for long, ha!) and being bothered by the container I was providing the refills in (what’s wrong with a Ziploc with his name on it?)  SuperE the whole time looked forward to his pill, and asked questions when the appearance would change.  He continued to be able to focus much better at school, and didn’t bounce off walls during the day like he used to. His school work immediately improved.

At one point his doctor and I decided that we’d try Concerta, the time released version of the same medication so we wouldn’t have to depend on the school for his consistent medication, thereby avoiding their impact to his medication as well – and it was less effective during the school day.  We needed to increase the dosage, and then a few weeks later I was hearing that things were sliding back to the old sort of behavior, and had to increase again.  I was getting a bit concerned about the dosage increases, when my doctor told me that he is still on a low dosage, and we had to start off low and creep up to find the appropriate dosage for him.  Also, since he’s growing, the appropriate dosage may continue to change, so we’ll need to stay on top of it constantly.

For a while, everything was going swimmingly. He took his meds every morning, did well at school, and even did well at restaurants which was something that we were able to add back to our family life successfully after he started the medication.

But recently, my little boy started becoming much more emotional, as he’d be coming off the medication.  He’d cry over every little thing, like that he didn’t like what we were having for dinner, that he had to ask twice for more milk, that it was too late to read a second bedtime story, that his favorite stuffed animal was on a different level of the house.  The doctor said he’s reacting, unconsciously, to the change in the way his brain is working, and it’s unsettling.  She suggested a little dose before and after the Concerta, which I believe we’ll try.  Also, since it’s almost summer, I’m looking forward to reducing his dosage since he won’t need to concentrate on school work during that time.  I’m hoping that won’t lead to more of the sensory issues I’ve seen him have while coming off the medicine or before it takes effect, like not wanting to wear socks because of the seam, or feeling itchy all over, or not being able to get comfortable in a seat.

We will see what comes next.

Starting on ADHD Meds

We had a consultation with our pediatrician and though she’d read the reports from the teachers and our surveys, she still seemed reluctant to go down the medication path. She heard that there was pressure from the school and that’s where she was hanging her hat, until I told her of the caffeine experiment.  She noted that it was very telling, as it pointed out how our son’s system reacted to a stimulant.  She was also interested to hear of my family’s history (siblings and their children) with ADHD/hyperactivity and she agreed that it would be good to see what impact medication would have.

We’re starting on a low dose of Ritalin, the fast acting, quickly metabolized type, to see if there are any adverse reactions and to ease into it.  The idea was to start on Saturday, see how it worked for a couple of days, then start at school.  The school is ready to administer the noon dose, though they want us to put a watch with the alarm set on our Kindergartener.  Somehow I was thinking that the school administrators would be more responsible for this than leaving it up to the child.  I suppose they have a lot to deal with beyond just my son.

SuperE has been looking forward to taking his pill.  He’d ask, “How many days until Saturday?”  It could have to do with the fact that the doctor said that some Hershey’s syrup would be a good chaser for the bitter pill, but he also noted, “I’ve never had a pill before.”  He’s always liked new experiences, except when it’s a food that isn’t sweet.

Yesterday we started with the medication and immediately we saw a difference. I can’t say it was an entirely positive difference like caffeine was.  SuperE had become more persistent, obstinate, and less… dare I say it, easily distracted.  I hadn’t considered what it would mean if he was more able to focus.  It meant that he’d remain focused on what was on his mind or in front of him in other ways, and it turns out that the items on his mind had to do with NOT wanting to do visual therapy exercises, and wanting to have our attention to play tag and hide-and-seek.   I also wonder if his activity level was actually higher.  I had the impression that it was, along with his propensity to make noises for noise’s sake.  Though, it’s hard to say, as I’m sure my objectivity was inversely proportionate to the level of stress created in our household by the change.  I’m pretty sure that the rebound behavior was worse than the before-medication behavior.

When I asked him how he felt with this new experiment with the pill, he said, “Good.”  When I pressed for more detail, what felt good, how, etc., he said that his whole body felt better.  It was hard to get more than that, but I absolutely believe that he’s telling the truth.  He feels better, but isn’t able to really put it into words.  I’m hoping this become more clear to all of us, over a short period of time.  I never claimed to be patient.

I look forward to seeing how his time at school is impacted by this.

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