Tag Archives: dosage

The Good, The Bad and The Ugly

The Good

It’s summer! Yay! (I don’t care what the calendar says – school is out, so it’s summer!)  The kids can sleep until whenever because I no longer have to rush to get them dressed in the AM – Rick can dress them when he gets home if I don’t get around to it.  And the only lunch I have to make is mine!  I left the house at my usual time this AM and got to work almost 20 minutes early – hurray for no school zones!  Also…it’s time for my favorite “sport” of the year – swimming. (I say “sport” not because swimming isn’t a sport…but because it’s not really a sport when I do it.)  I love going to the pool, lake, river, beach – wherever.  I just want to be in the water.  When I was younger, my sister could always outrun me, but she couldn’t out-swim me. (Pretty sure this has changed now that she’s gotten into surfing.) The water is always the one place I feel remotely athletic.

 

The Bad

Whew, boy, is it HOT by the end of the day!  Mornings are fantastic – 70’s and a bit breezy.  But by the time I get to my afternoon break and go for a walk, the air is so thick with humidity and heat, I get winded by the time I’m back at the office.

And the kids don’t seem to realize they can sleep in!  (By “sleep in” I mean 6:30am – that would be heaven!)  Colin was up at 5:30 this morning – he was sleeping on the couch again.  Not sure what to do about that. 

We also had a series of storms sweep through recently that left our fence in quite a state. Thankfully, no other damage was done, but now we have to figure out what to do with the fence on our own because our insurance deductible is too high to even bother going that route.  Rick has a friend from work that’s going to come out this weekend and hopefully not charge an arm and a leg!

 

The Ugly

The church-sponsored day camp (free to the public – donations only) that Colin and Ryan went to last year is not happening this year.  I was really worried this might happen.  It was such a blessing last year.  Colin was kicked out of daycare the summer before that. 

The 2nd day of camp last year, someone walked up to me and said, “Are you Colin’s mom?”  My heart sank.  Please, don’t kick him out, I thought.  Instead she said, “I wanted to ask you something, but I hope I won’t offend you.  Is he…autistic?”  I was still worried.  “Yes,” I said.

“My daughter, is, too, that’s why I was wondering,” she said.  “Don’t worry about him.  I will keep my eye on him.”  I just started crying.  I don’t know what we would have done last summer without that camp.

And now this year…we have to figure it out.  The good thing is that Robbie is out of daycare now, so we can afford to hire a sitter for the summer.  Just someone part-time so Rick can get to bed – he can continue sleeping when I get home.  We don’t have anyone lined up yet, but have a hopeful or two.  One lady was recommended to us by a good friend, but she flaked on showing up yesterday as we’d agreed to and she currently doesn’t have a phone – she calls from her mom or brother’s house.  And she’d have to bring her 8 yr old and newborn baby with her.  Just…so many red flags.  Still not counting her out – she’s supposed to come over today for us to meet.

Last night, after she flaked on me, I posted on FB asking friends to let me know if they knew anyone interested in a 20hr/wk babysitting gig.  One of my local friends gave me the name/info for a local high school girl that she’s friends with!  I’ve messaged her – hopefully if she doesn’t want the job, she will know someone who does. 

The Ugly, though, is going to be most of this week.  Rick is home with the boys today – no sitter or other means of distraction for them today.  Colin had everyone in the house on edge by 7am with his antics – he woke up full throttle today and was still bouncing as I left.  We’ve tried adding an Adderall booster (short-acting tablet) to the XR capsule, but giving him more Adderall just seems to make things worse.  His meltdowns increase and it doesn’t seem to do anything to put a damper on the ADHD.  Adderall seems to help his focus, but not his hyperactivity. 

Thankfully, tomorrow my mom (who just had surgery this past Thursday) volunteered to take them from Tuesday afternoon until Wednesday afternoon.  I hope she doesn’t regret that!  My stepdad is pretty good with them – he has an amazing amount of patience.  That will just leave us Thursday and Friday to get through.  Then, hopefully, we’ll have something in place starting next week.

Fingers crossed!

Adderall Auction

[No, no, I’m not actually auctioning off Adderall…hold your horses!]

I almost feel like this is an auction.  5mg! Do I hear 5mg?!  Okay, 10mg, 10mg? 10! Can I get 15mg, 15mg, anyone? You! 20mg – do I hear 20mg? SOLD! 20mg!

We went up to 20mg, twice/day, over the weekend and saw such an improvement!  Midday report from school also came back saying he was having a wonderful day today.

Yesterday, Colin did something I haven’t seen him do in months.  He sat down and completed a puzzle.  This used to be his favorite thing to do – he can knock out a puzzle faster than just about anyone I’ve ever met.  And then a few months ago, he stopped enjoying it as much.  When he would sit down with a puzzle, he’d get frustrated or distracted when he was part of the way through and give up.  Yesterday, he picked one of our more difficult puzzles – a map of the world – sat down and knocked it out.  He was so focused!  He even sat down and read a book at one point this weekend – without any instruction or guidance to do so.  He wanted to. 

I was worried that the meltdowns would return in the evenings when the meds wore off, but so far so good. What little anger/upset he’s had, he seems to be able to control fairly well.  I’m still worried about his sleeping.  I wish sometimes that we could rig a camera in the living room with motion detection.  I could have sworn I heard him up around 3am this morning, but the dogs didn’t budge or notice at all, so I figured I was dreaming.  He can be pretty sneaky when he wants to be.  He was up entirely too early over the weekend, too.  6-7 hours of sleep is not enough for a 7 year old.  (It’s not enough sleep for Mom and Dad, either!)

I ordered some books this past weekend – I’m hoping they may help us explain things better to Ryan and Robbie.  I’ll do a full review once we’ve tried them out, but here’s what I picked out.

Otto Learns About His Medicine by Matthew Galvin – A story about medication for children with ADHD.  In this book, Otto is a little car whose engine runs too fast and no matter how hard he tries, he just can’t stay on track and keeps getting in trouble at home and in school. Otto finds a special mechanic that helps him by giving him medicine for his engine.

Why Does Izzy Cover Her Ears? by Jennifer Veenandall – This is a story about a little girl named Izzy who is often misunderstood as she attempts to deal with sensory overload.

I found a few others that I want to try, but thought I’d start with these two.  I’ve tried in my own words – Rick has, too – to explain what Colin goes through to our other boys.  Best we’ve come up with is that you shouldn’t judge people – or make fun of them – for being different…and you need to have patience and be kind. We’ve explained that Colin can’t always control himself and that he says things he doesn’t always mean.  I’ve tried using the word “autistic” a time or two, but those conversations never seemed to go smoothly. We want them to understand him so that they can learn how to have their own relationships with their brother.  I read through probably two dozen book descriptions trying to find ones that matched our boy.  A lot of the Autism acceptance books out there deal with the non-verbal side of the spectrum, it seems.

I also bought a book for myself.  I’m hoping the boys will enjoy it in a few years – I’m not sure they’re ready for it yet.  I couldn’t pass it up.  They might be ready sooner than I think.  The boy in this book sounds a lot like Colin.

Rules by Cynthia Lord – “Twelve-year-old Catherine just wants a normal life. Which is near impossible when you have a brother with autism and a family that revolves around his disability. She’s spent years trying to teach David the rules from “a peach is not a funny-looking apple” to “keep your pants on in public”—in order to head off David’s embarrassing behaviors.
But the summer Catherine meets Jason, a surprising, new sort-of friend, and Kristi, the next-door friend she’s always wished for, it’s her own shocking behavior that turns everything upside down and forces her to ask: What is normal?”

 

Do you have books that you’ve used to help others – your other children, classmates in your child’s school, family members, etc – understand your child’s disability?  What words do you use to make sense of it to siblings?

Adderall Update #2

At Colin’s school, they give you a daily conduct report by way of a color scale – green is best, then yellow, orange and finally red.

Monday, Colin had a red day.

Tuesday, Colin had an orange day.

Wednesday, Colin had a yellow day… but he lied to his dad and told him he had a green day, so we recorded it (I have an incentive chart at home) as red (lying is not tolerated).

Today, he was already at “orange” by lunch time when Rick went to give him his afternoon pill. He hit another student.  He hasn’t hit in a very long time.  He also misspelled every single word on his spelling test.  He’s having control issues.

Yesterday, I called Dr. L for advice on what to do.  I had to leave a message and wait for his call back.  During that time, I did some online research.  I was aware that Adderall is considered a more potent drug than Ritalin, but I wasn’t sure what the dosage comparisons were.  I found a study online that shed some light.  It seems the general consensus is that Adderall is approximately twice as potent as Ritalin. 

Colin was on a hefty dose of Ritalin.  As I read more yesterday, I came to realize just how hefty.  I read that the maximum recommended dose of Ritalin is 60mg/day.

Colin was taking 80mg in the AM and another 20mg at noon.

He’s now on 10mg of Adderall in the AM and 10mg at noon.  If you do the math based on the 1:2 assumption of potency, that means he’s currently on about 40% of the stimulant he’s been on for the past year. Our hope (and our doctor’s hope) is that the Adderall will prove to be more effective as well as more potent.  Time and trial will tell.

The upside to less stimulant is his appetite has increased.  He’s become a bottomless pit!  He eats dinner – possibly seconds – maybe dessert after…and then asks for a snack.  Of course, we don’t just allow free range feeding at our house, so he understands that meals are at certain times and I try to offer healthy options.  He can definitely stand to gain a few pounds, but I won’t impair his health by giving in to his carb cravings 24/7!

When Dr. L called me back yesterday, we had a good talk.  First, he said that Adderall can cause insomnia, but that would affect him falling asleep, not waking up.  He falls asleep fine (thanks to the clonidine) but has been waking up entirely too early.  He also confirmed that – for Colin – 10mg twice/day is a fairly low dose.  He suggested that we try 15mg twice/day if we don’t see an improvement.  He also reminded me that we’re using the IR (instant release) medication to determine dosage and once he can be put on the XR (extended release) form, we will see less ups and downs in his mood/behavior/etc.  We have a follow-up appointment with him a week from tomorrow, so we can talk about the next steps then.  He told me to give him a call in a few days with an update and we’ll see how things go.

Rick and I have both been doing a lot of reading and wonder if adding Intuniv along with the Adderall might help. My worry about Intuniv alone was that it can lower blood pressure. However, stimulants raise the blood pressure, so the result may be the drugs counteracting each other in that department.

Of course, the idea of adding another pill makes me a bit ill.  But it doesn’t seem 100% stimulant is the way to go if he was able to take 100mg of Ritalin/day and still manage to be more hyperactive than just about any child I’ve ever encountered.

 

On a happier note… Colin has a birthday coming up.  I can’t believe he will be 8! He’s changed his mind a million times as to what he wants, but I believe he’s settled on a Wii Just Dance game (he loves this game).  I’m also thinking about making him a fuzzy blanket.  He loves smooshing his face on the dogs and rubbing on them at all the wrong times/places.  A friend suggested a furry blanket that he could use as a release for that impulse. Nothing too big, but something that’s just his that he can run his fingers through and rub his face on, etc.

And of course, there will be a mad dash through Chuck E Cheese.  All in the name of getting that glorious 10 seconds inside the infamous ticket blaster!

We discovered last year that you can have a birthday party of as little as 4 children at CEC.  We have 3, so we just booked the 4 kid party and called it good – Rick and I shared the 4th kid’s pizza slices and soda and we gave the extra tokens to the kids!

This year, I’m going to invite a new friend I made recently. We met at the park and her son is also a spectrum kiddo – he has Aspergers. Hopefully they can come and he can be our 4th!