Tag Archives: Adderall XR

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!

Where to begin? (med change & other issues)

After the most recent issues, we requested an ARD meeting at the school.  The meeting was attended by me, Rick, school principal, diagnostician, psychologist, speech therapist, Colin’s general education teacher and special ed teacher.

When we first arrived, the principal sat at the head of the table, Rick and I sat on one side.  Mrs. E (sped teacher) came in and sat right next me.  That made me happy – she’s so helpful and supportive.  She cares so much about Colin.

During the meeting, we learned a lot.  Colin’s been exhibiting other strange behaviors we were unaware of before.  Seems everyone’s noticed a changes in him over the past month and half. He’s been regressing.  His OCD tendencies have been getting in he way of his school work.  He’s momentarily not recognizing people or places.  He’s seeing people who aren’t there. (When he ran from school recently, he was looking for Pop – my stepdad – in the woods. Another time, he was adamant he saw Rick out in front of the school and needed to go talk to him.)

It was suggested that we take him to a neurologist.  We agreed.

The school maintained that his services wouldn’t change with an autism diagnosis.  The school psychologist also suggested that Colin may actually be suffering from FAS (fetal alcohol syndrome), which can mimic Autism.  He seems to feel that too many rush to label children as autistic (he blames that for the increase in diagnosed cases) because it’s the “in” thing to do.

Here’s the thing, though.  I’m not Colin’s birth mom.  I do not take any diagnosis personally because he was never in my womb.   Rick and I had nothing to do with him until the worst damage had been done. (I say that because I’m sure we’ll mess up our kids in our own way, but it would never be through negligence or anything done intentionally!!)  So, if it is FAS, great, let’s find out and move on from there.  I’ve been reading up and I don’t believe FAS fits.  Sure, he exhibits the behavioral aspects of FAS, but none of the physical characteristics. And all of those behavioral aspects are similar to Autism, so I’m not sure how FAS can be assumed or thought to be more likely than Autism. For all we know, it could be neither – his psychiatrist pointed out that he could just have MR (mental retardation).

How are we to know without testing?

And the school still does not want to test.  They went through the list of 13 items that are to be considered on the IEP of an autistic child and either gave us the info for how to reach certain groups or explained how he could qualify for certain services without a diagnosis, etc.  The school psychologist also said he meets with another boy every other week for 30 minutes to provide behavioral/social therapy. He’s decided to add Colin to the meetings because he feels it would help both boys. (The other child is also in 2nd grade.)

On Thursday, we met with Dr. L (psychiatrist) to discuss the changes everyone has seen in Colin lately.  We brought along a letter from his special ed teacher as well.  I think that really helped some of our concerns sink in for him – a third-party was also noticing issues.

Dr. L started by acting shocked that no one else had mentioned we should see a neurologist before. (Um, HE never said that, either!)  He suggested we speak to our pediatrician and ask her for a recommendation.  He also said we need to submit a formal request to the school asking that they evaluate Colin – no matter his diagnosis, if we don’t know what we’re dealing with, we may be missing something.

He also wanted to change Colin’s meds.  From everything we’d told him and from what he’d read, it just sounded as if Colin’s anxiety level was off the charts.  When the doctor asked if kids at school were mean to him, Colin said no.  He said, “Are they bothering you?”  Colin said yes.  “How are they bothering you?”

“They make noise,” he answered.  That’s been another factor affecting his academics – he’s been acutely aware of any noises in the room and hallway lately.  The diagnostician said she could hardly complete the yearly tests she gives him – in a quiet room – because every time someone walked down the hall or the A/C kicked on, he would stop and ask what the sound was, why it was happening, etc.

We’re back on Adderall.  We told Dr. L that the biggest issue we had with Adderll before was that it helped his attention/focus, but did nothing for his hyperactivity.  Dr. L has had Colin on a very low dose of Clonidine in the AM lately, and said that should help with his hyperactivity.

As of yesterday, he’s taking:

  • .05mg Clonidine, 25mg Seroquel and 15mg Adderall XR in the AM
  • .05mg Clonidine at midday
  • .1mg Clonidine and 50mg Seroquel at night

Yesterday was a pretty good day.  He was relatively calm and collected most of the day.  He even sat down to work on building things with Legos again (something he hasn’t done in quite a while). He slept through the night, but woke up at 5am.

Unfortunately, he also seems miserable.  Ever since our bout with Resperidone back in March, I’ve been more aware of his moods, not just his behavior. (The Resperidone made him absolutely miserable. I hadn’t realized HOW miserable until we took him off of it and saw goofy/happy Colin again.)

He’s not laughing like he usually does.  In fact, yesterday, I only saw him smile a few times.  (Until around 7pm when his meds were wearing off, of course.)

It’s a fine line.  I want him to do well at school and have the tools/meds he needs to succeed, but ultimately…I want him to be happy as much as anything.  Today is day 2 of the Adderall/Clonidine combination and he’s been emotional and moody. (And, as I watch him playing the Wii and lining the stools up just so, I worry that his OCD tendencies will always be an issue.) He’s playing his favorite video game right now (pinball) and looks focused but joyless.

We’ll see how the next few days go.  I agree with the doctor that we need to move away from the Ritalin.  I don’t think it’s helping him any more and the amount he was on was higher than an 8-year-old boy should be taking (80mg of extended release in the AM and 20mg of  quick release in the PM).

This coming week, I’ll get my written letter to the school diagnostician requesting that they evaluate Colin.  If they still refuse, we have a colleague of our play therapist that does academic psychological evaluations and can hopefully help us.  I’m also going to find a neurologist and get an appointment as soon as possible.

All this with the holidays around the corner!  At least we have most of our shopping done and – between the two of us – we’ll be home while the kids are out of school (Rick has off the week of Christmas, I’m off the week of New Year’s).

As I said to Rick when we were both feeling lost and frustrated last week: WE WILL FIGURE THIS OUT.

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! 🙂

Another Medication Update (and a visit from Aunt Missy)

Our psychiatrist’s mother passed away over the weekend.  We had an appointment this past Friday morning and got a call late on Thursday saying Dr. L had to leave quickly to help his mother and would not be there on Friday. They rescheduled us for Tuesday morning. 

Late Monday night, we received another call saying Dr. L had to reschedule again.  Poor doc – I can only imagine how stressful that all must be.  During it all, he still managed to return our calls and offer advice, etc.  He wrote us a prescription for 20mg of Adderall XR (extended release) and for clonidine – 0.2 mg this time.  He said if the XR didn’t last long enough, we might have to give him a booster in the afternoons. We’ll see how that goes.  He also said that if the 0.2mg of clonidine doesn’t do the trick, we’ll need to try a sleeping pill instead because he does not want to give Colin more clonidine than that. 

So far, the Adderall XR seems to be working out fairly well.  He’s still adjusting to it – and we’ve had family visiting, which can add to the chaos – but so far, so good.  And the 0.2mg of clonidine seems to help him fall asleep easily.  Unfortunately, he’s still not staying asleep, but I’m not sure if anything can be done there.  He has – twice this week already – gone back to sleep after waking up too early.  That was completely unheard of before.  The fact that he can do this now makes me think this is a good fit for him.  Of course I think it would be better for him to sleep through the night, but going back to sleep is a pretty wonderful alternative!

My sister is in town this week!  To the kids, she’s Aunt Missy.  And boy do these boys love their Aunt Missy! 

She may not have any of her own kids, but my sister’s done more than her fair share of babysitting over the years.  She’s great with kids.  Our boys go nuts when she comes over. 

For the last few years, she was living in Hawai’i and we didn’t see much of her.  She’s always been the cool aunt that sent the kids presents and the times they did get to spend with her have definitely left a lasting impression.  My sister is FUN.  She has ten times the energy I have and can just about keep up with these crazy guys.  They had her playing in the sprinklers, hiding in closets, picking them up, snuggling, etc. All three have been vying for her attention at the same time – it’s both hilarious and maddening to witness.

Ryan and Missy playing in the sprinklers

She’s so patient with them. I love that.  There aren’t many people who can stay as calm as she does around our boys – they could stress out Mother Theresa after an hour or two!  Whenever someone new comes around, Colin goes into hyperdrive – he has to share everything  he’s ever thought was neat or different in 10 minutes or less and ask at least a million questions.  The other two pick up on this and generate their own brand of crazy/silliness.  It’s mostly just them wanting the attention, I think, but it can be incredibly frustrating when all three peacocks are flaunting their feathers at the same time.

Monday night was insanity.  She stayed with my mom on Tues night…and thankfully things were a little calmer when she came back last night.

I wish I knew how to help them calm down in new situations.  The way they all start spazzing out at once makes me dread visitors and/or visiting others sometimes.  This is one of those moments when I think it becomes an extra challenge to have the oldest child as the one with special needs.  He’s the big brother – he’s “supposed” to set the example.  But that’s not possible.  And it’s not easy to explain to little ones why acting like your big brother isn’t always the best idea.

Psych Visit #2

I’ve been a little lax on posting because I haven’t felt well most of the week. Yesterday, I finally called into work and went to see a doctor.  Everything checked out – just a bad case of allergy issues – so I got a shot of steroids and an Rx for antibiotics should things not improve.

The upside of being off yesterday was that yesterday was our follow up appointment with Dr. L, so I was able to go with Rick and Colin. Our appointment was at 12:45pm. Rick and I picked Colin up from school at noon and he wound up eating most of his lunch in the car on the way there.

Unfortunately, the good doctor was running about an hour behind, so we had some waiting to do.

Colin got anxious. He kept tightening his lips and looking around. He’d press his fingers on his throat and say he was thirsty. He wanted the TV turned off. He took about seven trips to the bathroom. Rick offered to take him outside for a bit, but Colin declined. He was very quiet…and incredibly nervous. He finished his juice box and wanted more to drink. The water fountain was back by the doctor’s office, so we told him he had to wait.  He stayed quiet, still looking around, wide-eyed, pressing his throat.  I’m wondering if he was having flashbacks to his butterscotch swallowing from the last visit.

The TV show that was on ended and a soap came on.  I could tell the voices on the show were starting to stress him out further.  At one point, someone on screen yelled at someone else and Colin’s eyes went wide and he rocked a bit.  I went to the receptionist and did something I rarely do – I asked her to change the channel.  If anyone should understand, a psychiatrist’s office should, right?  She glanced up and told me someone must have changed it because they never allow soaps. She quickly changed it to PBS.  I asked Colin if that was better.  “I just want it off, please,” he said, so politely.  I explained I couldn’t do that.  He asked a few more times over the rest of our wait, but never got upset.

After our hour of waiting – and a few more trips to the bathroom with Rick – we were called back.

Dr. L asked how the clonidine was working for us.  We explained that the .05mg dose wasn’t working, so we went up to the full .1mg dose after a couple of days and that seemed to help.  For a while, he was waking up earlier and earlier – as early as 4:30am!  But now that seems to have tapered off.  He’s waking up between 6-6:30am, which is wonderful.  I need that 15-20 minutes on my own in the AM.  Before, if I woke up earlier, so did he.  The slightest sound woke him.  He seems to sleep more deeply now. I can shower, let the dogs out, etc, and he doesn’t wake up.

As a result, we’ve been watching a lot more Animusic. Small price to pay!

Next up during our visit was discussion of his ADHD meds.  Rick and I both would like him on something longer lasting.  One of the biggest issues Colin faces are the highs and lows.  He’s on a roller coaster all day – he gets his morning pill…crashes…slowly amps back up until noon when he gets his afternoon dose….back down again…slowly amping back up.  Repeat. 

Therefore we discussed what we and the doc felt were the best options – Concerta or Adderall XR.  Concerta is essentially the same medicine he’s on now (a methylphenidate stimulant – i.e. Ritalin).  Adderall is an amphetamine stimulant.  Dr. L said that with the high dose of Ritalin Colin is already on, it may be a good idea to try a stronger drug like Adderall. He suggested we start with the short acting medication so that we can determine where he needs to be, dosage-wise, and then change over to the XR once we know how he reacts, how much he needs, etc.  We’re making the change this weekend – Saturday will be his first day on Adderall.  Fingers crossed. We’ll start with 5mg in the AM and then 5mg at noon.  If that doesn’t seem to be helping, we’re to give him a full 10mg in the AM and another 10mg at noon. The only real concern I have is that Dr. L said the crash from Adderall can be worse than that from Ritalin. I hope it’s not too traumatic.  I hope he reacts well and that this is a good change.  I’m nervous as hell.

As a side note, I think it’s interesting that Dr. L seems to possibly be on spectrum himself.  His mannerisms and the way he presents things… little things make me think there’s a high probability that he might be.  What really convinced me was yesterday during our session when Colin said, “What’s that noise?” 

I didn’t hear anything.

“It’s the speakers in the hallway playing music,” Dr. L answered.

I listened closer – oh!  I could hear it if I really concentrated!  But to Colin and Dr. L, I have a funny feeling it was the most annoying sound on earth.  He knew exactly what sound Colin meant.  Little moments like that make me feel like this is a good doctor for us. He’s not just someone who’s read a thousand books… he may very well be living through it as well.

Fingers crossed for this weekend.