Tag Archives: Intuniv

Once again, where to begin?

I guess I’ll start where I left off – that’s a good place, right?

We stopped the extra dose of Seroquel and that helped for a bit…but over the past few months, Colin’s mood continued to worsen.  He got into the habit of going to his room to break things when he got mad – usually his own toys, but still not a good habit!  We’ve continued with him going to play therapy every week – we alternate which brother goes with him – and that seems to be helping quite a bit with his verbalization and his relationship with both brothers.  (We’re getting less “I don’t know”s and more “I’m angry because ____.”)

A couple of weeks ago, we told Dr. L about the mood swings – Colin was often angry/sad at the drop of a hat – and Dr. L decided we should take him off the Clonidine and try Intuniv.  We started with 1mg/day for the first week, then up to 2mg/day after that.  As we eased into the Intuniv, he had us ease off the clonidine.  We stopped his morning and afternoon doses immediately and then eased off the bedtime dose. 

His mood improved within a couple of days – he stopped having meltdowns and seemed generally happy again.  His hyperactivity, however, was off the charts again.  After a full week on the 2mg of Intuniv, we called Dr. L and asked what he thought we should do as Colin wasn’t focusing at school and was very hyper.  He decided to up his Adderall XR to 30mg.  He hadn’t prior due to his weight, but considering he was on 100mg/day of Ritalin just last year, 30mg of Adderall didn’t sound quite so drastic.  (They do not make a 25mg of the XR or we would have tried that first.)

So far, things seem to be going well.  To recap, he’s on 30mg Addreall XR and 2mg Intuniv in the AM, then 50mg of Seroquel at night.  He’s still having some issues in the evening, but he’s doing pretty well the rest of the day – no wild mood swings, a LOT less anger…if anything, he’s a little too silly at times – I’ll take it!  He seems happy – that makes me happy.

 

And now… to explain what *I* have been up to the past few months.

Near the end of last year, I started having issues swallowing – food would get stuck on the way down and it was sometimes a bit painful, but mostly just annoying.  By March, I was tossing my cookies a few times/week and could not handle eating if there was even an ounce of stress – I’d taken to eating dinner after the kids were in bed most nights.

Mid-March, I accepted the fact that I couldn’t put this off any longer.  I wasn’t sure what the issue was, I just knew I was tired of this esophagus mess, so I called my GP.  He suggested I go see a gastroenterologist. I actually had one in mind because in 2005 I had some issues and wound up getting a colonoscopy where they found a polyp (benign) and removed it.  I’d been instructed to come back in 5 years…but time had gotten away from me and I just never went back.

First thing Dr. S said when he saw me was, “You’re 3 years late for your colonoscopy, you know that, right?”  Yes, yes…I told him we’d fit that in with whatever was involved in fixing my swallowing issues.

After a few inconclusive tests on my esophagus, I went for my colonoscopy.  They found 2 polyps this time.  One was malignant.  Suddenly I went from having throat issues…to being diagnosed with colon cancer at the ripe old age of 33. 

I went for another throat test that week…and a CT scan of my abdomen.  The CT scan came back showing no other signs of cancer, thankfully.  The throat test concluded that I have achalasia – essentially, the sphincter that connects my esophagus and stomach malfunctions.  (When you swallow, it’s supposed to open. Mine only opens when it feels like it!)  But that would have to wait – I was meeting with my colorectal surgeon the following week.

When sharing my medical news with family, I found out my great-grandmother (paternal) had colon cancer when she was a little older than I am now. She had surgery and no further issues – lived to the ripe old age of 98!  My grandmother also has polyps often, but none have become cancerous.

The things we don’t talk about!  No one discusses medical history that isn’t life-threatening, do they!?

I had surgery in April and spent the following 6 weeks in recovery at home. (Gee, Sara – you couldn’t throw together a blog entry during those 6 weeks??  No, apparently I couldn’t! lol)

On the 4th week, I went for an endoscopy with balloon dilation – one of the methods for treating achalasia.  The other option was surgery (overnight stay at the hospital), but I just couldn’t stomach the idea of spending any more time in the hospital at that point, plus my colon surgeon had recommended that I try balloon dilation first.

Thankfully, the first round of dilation seems to have helped about 75%, I’d say.  I’ve only had to vomit twice since the procedure, though I do sometimes feel food get stuck…at least now it almost always goes down.  I’ve been told that I’ll likely have to go back and have the dilation done again in the future, but I’m good for now at least! (The procedure essentially tears the muscle.)

My pathology report came back clear as well, by the way – they removed 19 lymph nodes from around the area where the tumor was and all came back showing no signs of cancer.  Yay!  I’m still waiting on my genetic testing results to come back, but otherwise I can stop thinking about all of this for the next year (I will be back for my follow up colonoscopy next year!!).

As you can see, it’s been a pretty crazy past few months for us.  I’m back at work now and the kids are enjoying their last week of school. I can’t believe Summer Break is almost here!  We were able to push Colin’s week at camp off until late July (he was supposed to go next week originally) so that I’ll have vacation time accrued again by then.  We’re hoping to take Ryan and Rob to CO for the week – a “normal” family road trip, if you will.  I want them to get to experience things Rick and I did as kids and that’s not always possible with Colin.  My mom is local and told us not to worry – she is listed as an emergency contact at the camp and can be there ASAP if anything should go wrong.

 

So that’s me.  Now I just need to find time to read through everyone else’s blog posts!  I’m quite far behind. I’ve checked in on a couple of you here and there, but not as often as I should have.  I spent the first 4 weeks of my recovery sleeping, more or less!

Hope you’re all doing well!

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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!