Archive for the ‘ADHD’ Category

After eight weeks, we’ve decided to pull A off the Intuniv. Unlike pretty much any other decision we’ve made concerning him, this one was damned easy. There just weren’t the results we had hoped for. I consulted with his teachers, since they see him for so many hours every day, and what I heard was that they hadn’t seen much change in his focus since starting the meds in October. In fact, the teacher he has the most commented that the biggest difference was when he got his glasses and ear filter for the CAPD. So, not a noticeable difference. If she had said that suddenly a different child showed up mid-November, then that’d be a different story.

Along with the lack of focus difference, we were still dealing with the trauma of actually getting the pills down. Those rants can be seen here, here, and here. We gave up long ago and just told him to chew the damned things, not something the FDA recommends, but hell, they needed to get down somehow.

But what really convinced us to throw in the towel were some frightening behavior issues we were seeing. Things like A crying hysterically for hours on end, unable to stop, because his best friend in the whole wide world amen moved away several weeks ago. Things A said like “I want to go to sleep and never wake up” and “I wish I was never born” and “I hate my life.” Red.Flags. He rarely, if ever, cried out such phrases before starting Intuniv. I don’t know if there’s a correlation, but it was frightening enough for us to tell the doctor we wanted to stop, especially since there wasn’t a dramatic change in focus.

So we’re slowly weaning him off the meds. He’ll be off by Christmas and have a couple weeks to recalibrate before going back to school. And…deep breath…we’re not going to pursue any other ADHD meds at this time. While I believe that there is some ADHD something-or-other going on here, I also believe that a great deal of it may just be him being gifted and asynchronous. I’m no longer going to medicate him so that he can try to sit still in school and focus on crap that he’s already learned, or is so simple his brain asphyxiates from lack of something challenging. I’m sure his teachers will notice some increase in lack of focus, and tough shit on them. Ahem.

No more medicating his giftedness and intensities out of him, just to make things easier on us. If this is the way he’s wired, then so be it. Time for us…teachers, family, and friends…to recognize that. He cries that there’s nothing wrong with him, and we shouldn’t change him.

And he’s absolutely right.

I ripped that quote out of the most recent issue of Natural Solutions magazine, and taped it to my laptop so I see it every day. It was in an article about managing an allergen-free diet during the holidays, I believe, but it spoke to me in a different way. In a single sentence, that quote managed to describe exactly why I write here, and the tribe I have assembled around me. I don’t write to embarrass my family, or to show off my kids’ strengths and weaknesses, or to toot my own horn. I write for the sense of community, for building connections, to not be alone. I hope I help build those communities and connections for others as well, so they don’t feel so alone too. Parenting is a tough job, parenting kids with WTF??? needs is even harder.

I can’t begin to express my thanks for the support after yesterday’s hysterics on my part. The emails, the notes on Facebook, the comments here. I will email back everyone as soon as I can, as I like to do that, but a quick update here before the boys come tearing into the house. I did talk to the doctor last night, and agreed this is a challenging situation. Because this is such a new drug, A is only the fifth patient in his practice to be on Intuniv. So the doctor doesn’t have all the answers; in fact, last night he was looking up answers as I was asking the questions. We decided to move his dose to dinnertime, so that mornings are calmer, and because full effect is roughly six hours after taking it. That explains why A was almost falling asleep in school yesterday afternoon; his meds kicked in around 2:30. He held out as long as he could, went to bed at 6:30 and slept for a solid 12 hours. The kid has NEVER slept that long. Ever. The larger pill can be split and taken as 2 smaller sizes. Thank GOD. And I have another pill taking trick up my sleeve that we will try tonight.

This community, this online community, is something that is so difficult to explain unless you live in it. To try to explain to people that I have very dear friends all over the world I’ve never met, who I’d let take my kids out, who I trust completely…it sounds insane. This online tribe of writers, of parents, of people, is so valuable to me, and I’m honored to be a part of it.

You know what’s really awesome? Losing your shit with your  eight year old son before 8:30 am. Losing it so badly that he’s in hysterics and you are sobbing like an overwrought soap star. Losing it so badly that many loud and profane words are said after he leaves for school and you notice the ear filter for his CAPD sitting on your effing desk, where you’d remember to hand it to him in the morning, forgot because of the drama, and then get a phone call from the school that he needs it and crap, it’ll just have to bloody well wait.

There’s a special place in hell for pharmaceutical companies that manufacture ADHD medications that are available only in pill form. Medications for kids that already have an extremely difficult time focusing, for kids that likely have sensory issues that make swallowing a pill an exercise in futility. We put a man on the moon with a slide rule and less computing power than my iPhone, and you’re telling me you can’t come up with a way for these medications to be available in an easier to swallow form? Bullshit!

We’re into week 2 of A’s introduction to Intuniv, and it seems to be working. So far the only side effect has been fatigue, but that’s tolerable as it only hits in the evening and the end of daylight savings has screwed up everyone’s sleep patterns. The most improvement is supposed to come in weeks 2 and 3, and boy howdy, I’d sure like to see it! I know this will be a good fit for him, if we could just get past the issue of taking the damned pill! Last week, once he mastered taking the 1mg dose (smaller than a mini M&M), we were golden. Then came Saturday and the dose increased to 2mg. With a larger pill size (about the size of a Tic-Tac). Oh my hell. Two hours of torture on Saturday, THREE hours of misery on Sunday, and my losemyshitapalooza this morning. And it gets better. Next week he increases to 3mg, which (for the intro pack from the doctor) is two pills, a 1mg and a 2mg. I’m nearly hysterical even thinking about it.

This morning as he walked out the door (after an hour of trying), he chewed it and freaked the hell out (oh my god I chewed it I’m going to get sick I’m going to die please call the doctor I don’t want to get sick). So now I get to call the doctor and find out how bad it is that he did that. From what I can tell from the literature, it just means the extended release medication will be released too quickly into his bloodstream.

This is all getting tiresome, as you might imagine. Eight years. Eight years of fighting for him, helping him, trying to find the answers to help him, experts and doctors and meetings and consultations and medications and seminars and parenting classes and books and websites and…and I feel we’re getting nowhere. When does he improve? When are we no longer fighting his ADHD, his digestion, his sensory issues…when does he get to use and appreciate how gifted he is? When does he no longer have to fight against what holds him back and just soar?

When does it get easier?

I know parenting isn’t easy, I get that. I expected that. But this… And I know how well we have it, too! My kid isn’t disabled, he’s healthy, he’s happy, he’s awesome. We can (for the most part) afford the treatments he needs. But everything, and I mean everything, is a struggle for him. And that saddens me, because I feel I’ve failed him. I’ve failed in finding the “magic bullet” that would help him. I’m envious of other parents whose kids have improved, and feel guilty that I feel that way. I still feel there’s an answer out there for him, I’m just tired of searching for it.

I need to get his ear filter to him. Ten bucks says his first response isn’t “thanks mom!” but “it’s about time!” Sigh.