“Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain” – unknown

After the whirlwind of a weekend we’ve had, I need to take a moment and recap our psychiatrist visit on Friday.  It was interesting to get another doctor’s opinion on everything.

While in the waiting room, filling out paperwork, Colin and Robbie (he was off school that day and had to tag along) wanted a candy from the candy dish.  We said okay – just one! – and they each grabbed one.  The choices were peppermint and butterscotch.  We told both boys to suck on the candy – don’t chew it.  In hindsight, it might have been better to just let them chew!  A few seconds later, Colin began freaking out.  He’d accidentally swallowed his butterscotch candy.  Panic ensued.  Screaming ensued. Rick kept his cool while I lost mine. He tried to talk him down, got him a cup of water and soothed him.

The beginning of our session with Dr. L was frustrating. I never feel like we’re able to convey the story of our days concisely or accurately when talking to someone new.  Colin kept wanting to play with anything but the toys in the office.  The doctor seemed very reserved and I almost felt as if he just had no idea what we were talking about at first.

Then something clicked and I suddenly felt like the doctor got it. 

He basically suggested a medication overhaul, but asked us where we would like to start.  We had no desire to change more than one thing at a time – otherwise, how would we know what was really helping?

We decided that what we really wanted for him first was more sleep. If he’d sleep more, everything else just might fall into place.

Dr. L prescribed clonidine – 0.1mg tablets – and told us to start by breaking this tiny pill in half to see how he does.  This is essentially a blood pressure medicine, so I’ll admit this makes me a bit nervous, but the doctor said it’s often used in ADHD kiddos to help calm them in the evening, wind down, etc.  (Click the word “clonidine” above to read an interesting article about it’s use.)

Friday and Saturday nights, we gave him 1/2 a pill.  We saw no results whatsoever.  He was still up until 10 or 11pm, still freaking out about every noise outside (and inside!).  Saturday night he even tried to tell us there was a scarecrow outside his window.  (Admittedly, whenever he says something like this, I tend to panic a bit, too!  What if there’s actually a man standing outside his window??) We checked – no scarecrow.

Last night, we decided to try a whole pill.  We also gave it to him earlier, hoping that might help him wind down for the night. Around 6pm, he took the pill.  We ate dinner shortly after.

I’m not sure if it was because it was taken on an empty stomach or if a whole pill just hit him that much harder than half a pill, but it definitely worked.  He was almost loopy, though.  I kept asking him if he felt okay and he’d say yes.  Asked him if he was sleepy and he kept saying no.  He was moving a lot slower and seemed almost tipsy. 

When bedtime came, he only got up once.  He slept from about 8:30pm until 5:45am. 

We’re going back to the psychiatrist in about a week and a half to discuss how this treatment is going and possibly move on to phase 2 of med changes.

 

The next phase he suggested was changing from Metadate in the AM and Methylphenidate in the PM with just one Concerta in the AM.  He said even Metadate CD (which Colin takes) only lasts for 4-6 hours.  Concerta has been shown to last for 10-12 hours because it is a slower release.  It’s still the same medicine – Ritalin – so I don’t think he’d react poorly or anything to the change.  And having a slower, steadier release of ritalin throughout the day might even out his highs and lows as well.

The last change – and the one we may or may not resort to, depending on how everything else goes – is adding Zoloft or another antidepressant.  I honestly think if he’s getting more sleep and has a more steady stream of ritalin througout the day, the meltdowns and depression might clear up on their own.  If not.. an antidepressant might be something to consider down the road.

 

I’m glad we’re making small changes.  I get knots in my stomach just thinking about it.  I hate trying to explain medication changes to any of my family/friends. Surely they must think we’re just doping our kid up. Do they think we’re crazy to try something off-label on a child? Even if it is FDA approved? 

But who do you trust? Who do you listen to?  If not the doctors and any/all publications you can get your hands on…who?  What can you do?  I don’t feel like we have the option to notmedicate him. I feel like we’re just trying to find the best options for him and everyone around him.  I need to drown out the noise in my head because a) it’s not fair of me to give voices to those I love when they haven’t actually said anything and b) they really have no idea what we’re going through, for the most part.  All Rick and I can do is work together to do the best we can for Colin.

As for the quote in the subject line… I know it’s one that’s been around the block a few times, but I saw it for the first time in a while when I was at Kroger yesterday. (We have one of those big, fancy Krogers that sells everything from steaks to couches!)  It made me smile.  Life isn’t about waiting for everything to be perfect…it’s about enjoying every imperfect moment. We may not have it all figured out – we may never get it all figured out! – but we’re doing our best to have some fun along the way.

 

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5 responses to ““Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain” – unknown

  1. Well, not everyone needs to know your/Colin’s business. I think sometimes it’s best to just get on with it and when people start commenting on how well Colin is doing, you just smile and say ‘isn’t it great?’
    I know it’s ironic to be writing our hearts out on these blogs then keeping quiet in real life, but it’s great too. It’s like having your own personal Greek Chorus!

    • That’s a large part of why I started this blog – I needed an outlet for my thoughts, fears, emotions and challenges. I need to spill the things I don’t feel comfortable sharing with people I feel close to. In fact, I’ve only shared this blog with a couple of my “real life” friends. This is my safe haven.

      And it helps me keep my mouth shut more often around others lol

  2. I completely understand using my blog as a way to express myself without getting flak from people who know me face-to-face. Our son has reactive attachment disorder and PTSD, which together have a lot of symptoms in common with autism and ADHD. When he first came to live with us, he never slept. Clonidine has helped him start getting some much-needed sleep and sensory-reset time. Without sleep, he just can’t ever get any kind of regulation. He also takes a benedryl at bedtime, along with the bulk of his other meds that happen to have sedating side-effects. Less than that and he’s up all night and scared most of that time.

    My older children also suffer from RAD and PTSD, but have fewer sleep issues and aren’t also bipolar like my younger son. They use Zoloft to help with anxiety and depression. It levels the playing field for them so that life isn’t so difficult that they just can’t ever feel okay.

    I don’t think any sane parent wants their children to need to take medication. But I thank God that it is available since my children really cannot function without it. We tried–for way too long. The goal is to improve their coping skills so that they need as few medications as possible at the lowest doses possible, but we have to be where we are for now. They can’t develop coping skills using brains that are going in twenty directions at once, is flooded with stress hormones, is sleep-deprived, and severely dysregulated. We pray and make the best decisions we can and see where they lead. It’s better than being paralyzed by fear and watching our kids suffer without hope.

  3. At the parent conference I went to on the weekend there was a session given by a psychiatrist about meds & autism. One of the things that stood out for me was that if, through medication, you are able to help your child be calm enough to learn, then a lot of their frustrations and meltdowns etc are going to decrease – and they are going to be much happier (and therefore so are the family). No one wants to go there, but if it’s the right thing, then it’s the right thing. You wouldn’t suggest not medicating someone for epilepsy or diabetes.

  4. No question and that’s the problem. It is easy and acceptable to medicate for things like hypothyroidism, which I have, or blood pressure etc. It’s a whole other arena when it’s something that has to do with the brain because a) there is a stigma attached and b) it seems so much murkier.
    Allison, I love what you said at the end: “We pray and make the best decisions we can and see where they lead.” Isn’t that what we all should be doing?

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