Tag Archives: metadate

It’s all about perspective

Yesterday was a scorcher.  By 7am, it was already 85 degrees outside.  (We got up to 106!!)

When I left my cool, 75-degree house yesterday morning, I walked outside and went, “UGH! It’s so HOT out here!!”

Then…sometime between yesterday afternoon and last night, our A/C stopped working.  Lordy.  I woke up in a sweat during the night. Thermostat said it was set at 76 and yet it was 85 in the house.  Not good.  At that point, it was only about 80 degrees outside!

After a sweaty, muggy morning (I opened up the windows, but we don’t have any windows in the living room), Rick arrived home from work and I walked out the door to head to work.

It was about 84 degrees outside when I left this morning.  I went, “Oh my gosh, that feels so good!”  There was a slight breeze and the air felt COOL compared to the couple of degrees warmer it was in the house (and the fact that we had very little air circulation).

Similar weather as yesterday, but a whole new perspective.

 

Our sitter, Kay, has an 8 year old brother that has ADHD.  She thought she knew what she was getting into with Colin!  She’s told us a few times that Colin’s ADHD is much worse than her brother’s.  Rick and I were laughing the other day that she probably goes home from our house each day and hugs her little brother!  He likely seems like a cakewalk after 5 hours at our house.

But, similarly, there are children that I’ve seen that make even Colin seem like a dream.  I may have mentioned before that I was once at an ABA center where a young girl in the lobby could only scream/screech – that was her only means of communicating.  So, again, I’m thankful that Colin can communicate and can usually articulate his needs fairly well.

It’s all about perspective!

 

We have our next psychiatrist appointment tomorrow.  We’ve gone completely off the Adderall – it was just not working out for us.  It seemed to help his concentration but not his hyperactivity.  And the more Adderall he took, the more emotional he became – more outbursts, anger, sadness, etc.  The Seroquel seemed to help a bit, but not much.  The doc agreed with us switching him back to Ritalin.  He’s back on the 80mg of Metadate CD in the AM and then 20mg at noon of Methylphenidate…and another 10mg around 3pm.  Just trying to help him ease through the day and not crash. 

Part of me feels like we’ve just gone backwards – we’ve not only gone back to what we were on before, we’ve added to it.  But at least it helps.  And once we know what’s working the best, maybe we’ll try Concerta (still ritalin, but longer-acting) or maybe less Ritalin and add Intuniv or something along those lines.  Not sure.

For now, things are better than they’ve been for a while. I really feel the Seroquel has helped him with his outbursts when combined with the Ritalin. He seems to be in a much better mood.  Sleep is still an issue most nights.  The lock on his door at least provides some peace of mind.  Although, last night – after putting the boys to bed – I went to lay down with Rick for a bit.  I kept thinking I heard a noise, but the dryer was going and we figured that was it.  I was only in our room – with the door open! – for about 30 minutes.  After Rick left for work – around 9:15pm – I discovered that Colin had snatched the Wii remotes and disconnected the Wii cords…and was in his room playing with his Legos instead of sleeping.  So much for leaving his door unlocked until I go to bed.  I guess it can only be unlocked if I’m in the living room, standing guard!

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More on Medication

I haven’t offered much of a med update in a while because I’m not sure what to say.  The 20mg Adderall XR doesn’t seem to be doing the trick.  It’s almost as if he’s unmedicated.  I’d say we should increase the dose, but his meltdowns have been coming back more and more – I’m worried that more Adderall will just make that worse.  He goes from manic to angry in a flash.  He moves and talks non-stop. He has zero impulse control. He’s messing with his brothers, the dogs, electronics – anything he can get his hands on. 

And I’m not sure the Clonidine is the solution we were hoping for, either – he’s getting up every night within minutes of us (or me) going to bed and sleeping on the couch.  That means he’s not really sleeping when he goes to bed (there are at least 2-3 hours between his bedtime and mine!). 

Yes, he’s staying in his room because the pill makes him drowsy, but he’s still suffering from insomnia.  And I’m not sure why he wants to be on the couch, but I think it’s likely the equivalent of his old sleep-with-his-face-under-the-door move he used do (it’s been a while since he’s done that). He doesn’t want to miss anything.  I’m not sure if it’s paranoia or anxiety or what it is that causes that fear of missing out.  If someone leaves the room, he immediately asks where they’re going and why. (He’s done this as long as I’ve known him.)

By Thursday last week, we were all pulling our hair out over his hyperactivity, getting into everything, messing with people, breaking things, etc.  Something had to give.

Rick called Dr. L first thing Friday morning and left a message with the receptionist to have him call us.

He never called.

I’m not sure what’s up with that, but it’s incredibly frustrating.

By Friday night, we were trying to think of what to do – we weren’t sure we could deal with another weekend of meltdowns and insanity.  And our sitter Kay was coming back on Monday – he’d driven her pretty insane her first day – so we were worried about her, too.

We decided to go back to something that works better.  I hate changing things around – especially without Dr. L’s knowledge and/or consent – but if he wasn’t going to help us, we had to help ourselves for now.  Ritalin works.  It’s not perfect, but it seems to work better for him than the Adderall.  And we still had a pre-written script from his developmental pediatrician that hadn’t expired.  This was just for his AM pills, so we were without the Ritalin booster for the PM, but we were given some short-acting tabs of Adderall, if needed, to go with the XR capsules (we tried that – didn’t help).

Our short term solution is going back to the 80mg of Metadate CD in the AM followed by 10mg of Adderall in the afternoon. Maybe Concerta will be the long-term solution. I don’t know.  I just know Saturday and Sunday were infinitely better. 

I don’t know what to do, and I hate that feeling of helplessness.  We were ALL miserable – all 5 of us.  Something had to give.  Hopefully Dr. L will have some other ideas to try.  I hate mixing up his meds all the time, but we need to find what works for him.  I don’t want a zombie for a kid – please don’t think I expect him to be zonked out and perfectly obedient 24/7.  I want him to be happy. I want him to have some control. I don’t want him to hurt himself or his brothers. I don’t want him to destroy everything around him (through lack of control). 

I want us to be a happy family.  I want to be able to take my kids out in public without worrying about the meltdowns (I know this might never change and I understand that). 

I want Ryan and Robbie to have things that are special to them without worrying that Big Brother will ruin them.

Ryan and Robbie’s play therapist told us last week that she gets the feeling Robbie is afraid of Colin.  I’ve worried about that myself, but it hurts to hear that from an outside source.  I don’t ever want my children to feel afraid in their own home.

On that note, I don’t want to feel the rage Colin can induce in us all through his lack of control.  I’m tired of the yelling. I’m tired of yelling. I’ve been trying to stop.  I don’t want my kids to think I’m angry all the time.  I’m not an angry person.  I’m just frustrated. 

This started as a med update and has turned into me whining. 

I just hate not knowing what to do.

In happier news, I’ve been scouring the internet for any kind of assistance – classes, groups, etc – for parents and siblings of autistic and ADHD kids.  The coolest thing I’ve found so far is a sports league for special needs kids!  They have bowling, soccer, baseball and basketball leagues.  For the kids that need it, they offer a league level with buddies – a volunteer stays with your kid through the games, etc.  They have altered versions of sports where everyone gets to play and no one’s left out.  I’m really excited about this.  Sadly, we missed the bowling cut off by just a bit – Colin LOVES bowling.  But now we can let him get involved in sports without disrupting an entire team. (We tried soccer last year and it was a pretty dismal failure!)

I need to just step back and take everything one day at a time. I know this.  Deep breath. 

So many people out there have it harder than we do.  I know that. My heart aches for them.  At least my kid can talk. At least he CAN run and laugh and interact with others.  He can (usually) convey his needs to me. 

And he hasn’t scared off the sitter yet! 🙂

“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.

 

“Is it wake up time?”

I feel strongly that medication is a personal choice every parent has to make.  There is no right or wrong – there is just survival and trying to do what’s best for your child, your family, and their future.

I recently made a friend whose son was diagnosed with ADHD and Aspergers. She has decided to go the med-free route because the meltdowns caused by the ADHD meds were too much.  I understand that.  I understand the worry, the anxiousness, the fear these meds can cause.

What I also understand is the way Colin behaves when he’s unmedicated.

He can’t sit still.  At all. Mornings are definitely the most challenging part of our days. When I first moved in, mornings were almost my undoing. 

We have a routine.  It’s pretty simple. Nothing that happens the night before seems to change the morning routine – we’ve tried it all.

Sometime between 5-6am, Colin stands in our bedroom doorway and watches for a moment before saying, “Good morning, Mommy!” (We had to create a rule of announcing yourself because one morning I woke up to his breath on my face and almost decked him!) The closer to 6am it is, the more likely I am to respond with “Good morning, Colin!”  Our rule – that we try ever so hard to enforce – is that it’s completely unacceptable to wake up before 6am.  Colin, however, will point out a 6 anywhere on the digital clock by our bed and say, “See? It’s 6! It’s wake up time!”

I groggily rub my eyes and look at the clock. “It’s 5:26, Colin.  It’s not wake up time.  It’s still bed time.  Please go back to bed.”

He leaves the room…and does God knows what. 

I call out, “Please go to your room and close the door, Colin!”

***SLAM!!***

(Slamming doors has become a great pastime for him lately.)

I rub my eyes and wander to the bathroom.  I flick on the closet light, hoping he won’t see that there’s light on in our room.  I email my husband to say good morning (he works overnights). I hear breathing that doesn’t sound dog-like coming from our bedroom.

“Colin?”

“WHAT?!” Copping an attitude whenever you call his name has become a routine I’d like to put an end to.

“Please go back to your room. I will come get you in just a minute, okay?”  I try with every ounce of patience in my being to not sound angry or frustrated.

“Okay,” he responds.

When I leave the bathroom, I hear him scamper across the living room. ***SLAM!!***

I grab his pills and head to the other side of the house. I let the dogs out.  Before I get to his room, Colin’s door swings open – lights are on inside – and he appears. “Is it wake up time?”

“Yes, Colin, close enough. Come on – let’s take your pills.”

He takes his medicine and then runs to the living room, throwing himself on the couch.  Somewhere between somersaults, he says, “I want frosted mini wheats.”

“Can you ask nicely?”  I’d say maybe once a week he actually does not need this prompt.

“May I please have frosted mini wheats?” Another flip. Maybe a headstand.

“Yes, you may – thank you for asking so politely.”

As I make his bowl of cereal, I hear him flailing about on the couch.  Sometimes he just sits and rocks, but usually it’s acrobatics.

“Please go sit at the table.  Please.”  It’s maddening – even after all this time – to see someone throwing themselves around like that when I can barely get one foot in front of the other.

I bring him his cereal. I let the dogs in and give them their food. One of them finishes up and goes to say good morning.  He’s swinging his spoon around in the air between bites – I can just picture all the drops of milk flying, even if they can’t be seen. I stop making my breakfast half a dozen times to tell him to leave the dogs alone while he’s eating. “That spoon belongs in your mouth or in the bowl.” “All four legs of the stool need to stay on the ground!”

Several questions are asked through a mouthful of cereal and milk, milk dripping down his chin.

“Please stop talking with your mouth full – I can’t understand you.”

Cereal is swallowed. “Are we going to school today?”

“Yes, Colin. It’s <insert day of the week here>. You have school today.”

“My brothers are sleeping?” (He often makes statements that sound like questions.)

“Yep! They sure are.”

“Why are they sleeping?”

“Because it’s not wake up time yet.”

“How do you spell <insert any number of random words – real or imaginary – here>?”

About 75% of the time I humor him. I won’t spell imaginary words.  I won’t spell BUTT (his favorite word). Or any other word I know he knows how to spell!

He finishes his cereal and by now at least one of his brothers is awake, sitting on the couch, rubbing his sleepy eyes. Usually it’s Robbie.

Within seconds, I hear, “COLIN!!!!!!!”

Colin’s back to doing acrobatics on the couch and/or has his head/leg/foot/hand/etc touching some part of Robbie’s not-quite-awake body.

“Hands to yourself, Colin!”

That never lasts more than a few minutes.

 

My point is… he wakes up full throttle. This is Colin as unmedicated as he ever gets…and he’s a firecracker. He can’t focus. He can’t sit still. His mind and body are both going a mile a minute. He has a million questions and a million compulsions all at once.

If you don’t give him his medication, he actually requests it. 

In the afternoon, when he’s almost due for his smaller dose, he asks for that, too.  I think he feels himself losing control. I don’t think he likes feeling that way. He’s also more prone to accidents, which scares me.  Early in the AM and late at night he’s far more likely to do a spin and slam himself into something (or someone).

I don’t have all the answers. I don’t even have a few of them.

I’m anxious for our psychiatrist appointment on Friday. I don’t know what I expect, but maybe having no expectations is best.

 

Patience

I’ve never considered myself a terribly patient person.

Determined? Yes.  A hard worker?  Definitely. Intelligent? God, I’d like to think so.

But patient?  I just don’t know.

And yet, for the last 20 months (the length of time I’ve been with Rick and his kiddos), I hear that all the time.  I always think, “Oh, if they only saw how impatient I am when less people are watching!” 

I think we have an additional challenge in that not only do we have a child that’s ADHD/ASD, but he’s also the oldest child.  He’s been the shot caller and the center of attention and the leader of the gang for quite a while.  We’ve spent about a year now explaining to Ryan that – while Colin may be 7 months older – heis really the “big brother” in our house.  That’s a difficult talk to have with a 6-7 year old kid, but he seems to get it.  He has a little brother now and so now he’s stuck with the older brother role of needing to set a good example and the “middle child syndrome” feeling of not getting enough attention.

Whew, I’m rambling again.

I worry sometimes that patience is not like love.  Love is limitless – just because I love your brother doesn’t mean I love you less and vice verse.  But patience?  Patience feels different.  And I often worry that Rick and I use up all our patience on Colin and don’t leave enough for the other two. 

Many times, we overcome this by using the divide-and-conquer method.  One of us will take one kiddo to do something and the other will take the other two.  We try to mix it up – it’s not as if we constantly single Colin out.  Colin has a very different relationship with both brothers.  Ryan is so used to him that he’s almost immune to his outbursts and odd expressions, etc.  For the first 5 years of his life, Colin was Ryan’s litmus for “normal”.  Robbie, however, gets frustrated with Colin often.  Although, at almost 3 years apart, they both have that naive love of life and new things.  Ryan is already getting a bit cynical in his “old age” and won’t watch Sprouts or Nick Jr or play with trains like the other two do.  So we mix it up and it makes things easier. 

 

I feel like this latest change in Colin’s meds is helping me renew a vow of patience.  He’s off the Resperidone (as I mentioned in the last post) and we’ve decided to see how he does with just 20mg of Metadate CD in the AM (as opposed to 40mg).  This is day 4 off Resperidone and day 2 on the lower amount of Metadate. 

This morning, I told my husband that Colin seems to be getting goofier and goofier as the meds leave his system.  He responded (via text on his way home from work), “Oh yeah? Good goofy or bad goofy or funny goofy?”  I wrote back, “Funny goofy.  Like ‘you’re a good day pickle’ goofy.”  (This was one of Colin’s catch phrases about a year and a half ago.  He said it to peole all the time. It’s kind of become a family compliment and we still use it from time to time, even though Colin doesn’t.)

Before Colin went on the Abilify (which was before the Resperidone), he used to say the most random things.  He still did on the mood stabilizer, but not as often.  I know the mood stabilizer was helping to even him out – take away the highs and the lows – but I think it also took away a lot of his joy.  Over the last couple of days, he’s been laughing more.  He’s always been very silly – he makes jokes no one gets and just cackles!  I don’t know how to explain it. Over the last year, if I heard Colin laughing, the hair would go up on the back of my neck because it usually meant he’d just done something terrible.  Now, he’s back to that laugh that tells you he just saw something that he thought was silly or he had a silly thought – it’s mostly harmless laughing. He’s more of a handful now on less meds, but he seems so much happier.  And he’s SLEEPING. Did I mention he’s sleeping?

And you know what happens when HE sleeps more?? I sleep more!

And when I sleep more… I have more patience! 

I’m not sure what the answers are just yet, but I think he’s doing well for now.  As long as the horrific meltdowns don’t start back up again, we may be just fine in this groove.  I can handle crazy happy Colin better than I can crazy angry Colin.  I’d like to get us into the ABA therapy eventually – if we can combine that with less meds, we may find our sweet spot yet.