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!

Roller Coaster Ride

That’s roughly what the last few months have looked like.

I logged in to write about it yesterday (as I have a few times before) and once again ran out of time.  However, I noticed something.  Even though I haven’t posted in entirely too long, people are still visiting this blog.  People are still entering searches that lead them here.  Therefore, I should keep writing.  It’s why I started this blog in the first place.  Once upon a time, I was searching for answers and I stumbled upon someone else’s blog.  She was a single mom with an autistic child. And unlike some of the other blogs I’d read, she sounded like me.  But her blog was long since given up.  I wished she’d kept it up – if she had, her son would have been roughly the same age as Colin.  What are they up to now? What have they tried? What worked? What didn’t?  I’ll never know.

(Even as I try to write this, I’ve been interrupted twice already!)

Here’s what I wrote on 12/21, but never finished the entry to post:

This past Wed (12/19), Colin went back to see Dr. L (psychiatrist).  We did something we should have done before, but never had – we took notes almost daily for the 2.5 weeks Colin spent on the new medication schedule.  Mrs. E (special ed teacher) also emailed us a few times, letting us know what she’d observed at school.

The first week, Colin was doing well in the AM, but not so much in the afternoon.  Rick was giving him his afternoon dose of Clonidine at home because we had not gotten the form filled out and faxed to the school yet (this is sometimes a challenge with our doc’s office).  By the second week, he seemed to have issues all day long – the meds were not affecting him nearly as much and he was back to distractions and hyperactivity.

Dr. L has upped his Adderall XR to 20mg/day and upped his dose of Clonidine in the AM to .1mg (he was taking .05mg before).

Yesterday was the first day on the new dosages.  He was downright zombie-like within 20 minutes!  After breakfast, he plopped down on the couch and buried himself in pillows.  When I told him to go get dressed for school, he told me he couldn’t get up.

Yikes!!

I asked him to try and he realized he was fine and able to go about his business, just a little slower than usual.

I got a phone call at lunch from Mrs. E – she wanted to discuss the new medications.  She told me he seemed very disoriented first thing in the morning.  I told her that concerned me, too.

THEN she told me that they’ve been working on double-digit addition for a while now and Colin has not managed to do a single problem on his own yet – he asks her for every step on every single problem, unable to recall what he needed to do each time.  Yesterday?  He sat down and did TWELVE problems without ANY help.

And then he wrote a full-page for an assignment he was given.

I almost fell out of my chair.  I had tears in my eyes, that’s for sure!

Things were good for a bit.  Then the anger started to amp up again.  At our psych visit in January, we expressed concern over the anger and Dr. L had us add 25mg of Seroquel in the AM (he takes 50mg at night).  We hoped that would help.  We also got the form signed and turned in so that he could take his afternoon dose of Clonidine at school instead of after he got home.  I thought maybe – just maybe – we were getting there this time.  Just a tweak here or there!  We’ll be fine!

And then over the last few weeks, school days have taken a turn for the worst.  Episodes of cursing, spitting, hitting, kicking, throwing his shoes, refusing to work, etc.  Yesterday was the worst.

I got a call from Mrs. E (sp ed teacher) yesterday afternoon – she was very concerned.  He’d acted out in the AM a bit, then was throwing food at lunch.  After lunch, they sent him to Mrs. E where he refused to work, kicked his chair, threw his shoes, started kicking the wall, cursed at his teachers and spit.  They took him to an empty classroom that’s sometimes used to let kids decompress.  No stimuli in there – empty room, blank walls.  They hoped it would help him calm down.

Instead, he amped up.  He started running circles and doing cartwheels and literally bouncing off the walls.  He never slowed down, just kept getting worse. After a while, they realized that wasn’t working and brought him back to Mrs. E’s room.  There, he continued to act out and then started hitting and kicking his teachers.  He had to be restrained by one of them until he could calm down.  He’s never gotten that bad at school before.

Once he was calm, he apologized to them.  He said he was sorry for hitting and spitting and saying bad words.  Then he sat down and took his spelling test and made 100.

They thought he might have calmed down enough to go back to the gen ed class room for the rest of the day, but when they went into the hallway, he started spinning and they knew he had to stay in the sp ed room.

Mrs. E knew Colin was listed as a “walker” and said she was going to walk home with him because she was really worried about his behavior today and didn’t think he should be walking home.  I explained that they only go across the cross walk and then Rick meets them and either walks home with them or they ride in the car.  She said, “Okay, I’ll keep an eye on him until he gets to Rick, then.”

I love Mrs. E. I don’t know how she does all that she does every day for Colin (as well as the other kids in her care).

We put a call into Dr. L to see what he thinks about everything – haven’t heard back yet.  I just don’t know what to think. It’s almost as if the extra Seroquel has made him worse instead of better.  Seems to go that way with any sort of mood stabilizing drug we’ve tried.  In the beginning, it seems like a miracle drug… then suddenly he takes a crazy left turn and we wind up worse than we were before.

In better news, we’ve been fighting with the school to get Colin a psych eval through the school system and they have FINALLY AGREED!  The testing will be sometime in the next 60 days.  Long story short, they did not like the testing that we had done 2 years ago and refused to accept his autism diagnosis.  They say they think it could be FAS or something else masking as autism.  I told them I don’t care WHAT it is, we just need answers so we can help him!

As I wasn’t sure whether or not we’d win this battle, I had also been looking for an independent evaluation again.  This time, touching on points that the school said they wanted to see, etc.  Our play therapist the kids see recommended a colleague of hers.  However, she’s out of network and it would have been very cost prohibitive.  That doctor, however, is a professor at TWU as well and she offered another option.  She has 2 grad students that need to complete a psych evaluation for their coursework and said that if we let them perform the evaluation, she will monitor the entire process and it would be free of charge.  We went ahead and jumped at the chance.  We’re meeting with them today for the evaluation.  I was tempted to let Rick take Colin and I’d stay home with the other two, but the more I thought about it… the more I really would like to stay, especially if they’ll let us observe the evaluation.  I’m interested to see if there are any changes in his answers from two years ago… also want to see what exactly they ask him.

Up again, down again… I know this is so hard on Colin, just as it is on us.  I don’t know how to help him, but we’re trying our best.

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.

Seroquel

Dr. L called back the other day – Rick left an urgent message. Apparently he’d been out of the office for about a week and no one thought to tell us when we were leaving messages at the front desk.

He called in 25mg tabs of Seroquel (generic = quetiapine). We were told to give him 1/2 a tablet the first three days, then increase to a full tablet – taken at bedtime.

Seroquel is an “atypical anti-psychotic.” It’s used to treat schizophrenia, depression in bi-polar patients, and “to treat or prevent episodes of mania.”  The initial effect is drowsiness – which is why it’s given at bedtime – and then it’s supposed to help with the meltdowns through the next day.

As usual, I did a lot of reading.  There isn’t a lot of information on prescribing Seroquel to children, but that seems to be the case with many meds.  The worst I could find was that it caused nightmares in some and weight gain in most.  (Colin needs to gain weight – he’s incredibly skinny, even though he eats plenty.  He’s in constant movement, so he burns far more than he cares to eat. Being a picky eater doesn’t help!)  Many people compared it to Abilify saying that Seroquel helped with the anxiety in ways that Abilify didn’t – another plus for us.

Wednesday night, we gave him the 1/2 pill along with a now reduced  dose of Clonidine (0.1mg – down from 0.2mg). 

He got downright paranoid.  He kept getting up, telling us there were storms coming (yes, there were clouds outside and some lightning far off in the distance). At one point, he made me come look out his window at the cloud that “looked like a head.”  He just kept getting up. He was so nervous!  At one point, he came out and said, “I can’t breathe anymore and I can’t talk anymore.”  I said, “Honey, you are breathing…and you’re talking to me right now, okay?”  He went, “Oh. Okay,” and went back to bed.

He popped back up around 10:30pm – just when I thought I was in the clear! – and used the bathroom.  He went right back to bed, though, and didn’t get up until 6am. (And he slept in his bed!)

Last night… I honestly just screwed up. I completely forgot about the 1/2 pill to start and handed him a whole one.  I realized what I’d done entirely too late. So he was given 25mg of Seroquel and 0.1mg of Clonidine.

About 30 minutes later, he became incredibly drowsy.  It was almost 8pm (bedtime) anyhow, so I said, “Colin, why don’t you go lay down? You look very sleepy.”

He gave a half-hearted, “I don’t wanna go to bed yet, though,” and then let us lead him to bed without any further discussion.  He laid down and passed right out.

He slept until 6:10am.  That’s over 10 hours of sleep. I think the last time he slept that long, he was sick.  (That’s usually how you can tell he doesn’t feel well – he gets tired and still.)

We didn’t notice much of a difference in him yesterday – it will be interesting to see if the full dose helps at all today.  He woke up bright-eyed and bushy-tailed – his usual spunky, early morning self!  He got in trouble for messing with the dogs and was sent to his room while I made breakfast.  He pouted, but didn’t cry about it.  Otherwise, it was a wonderful morning.  We’ll see how this goes.

Our sitter made it through her first full week!  I handed her a fat wad of cash last night and her eyes lit up. 🙂  I don’t think she’s going to quit on us.  She seems to genuinely like our crazy kids and she’s come up with some great ideas to help keep them in line. Best idea so far?  A schedule.  She thought of that on her own.  Her brother has ADHD as well (though, she admits, far less extreme than Colin) and she understands better than most, although she still doesn’t quite grasp the autism aspect. The only downside I can see so far is that our house is COVERED IN GLITTER.  Covered.  Especially Colin’s room, since he snuck the container of glitter they’d been using for art projects into his room and shook it all over the place.  Our house is very sparkly now!

—

In other news, my stepdad’s mother passed away yesterday.  She was 102 years old.  Her funeral is on Tuesday.  I’m not sure if we should tell the kids – I don’t know how to.  And honestly, they know her, but she wasn’t a vital part of their lives.  If they never saw her again, I don’t know that they would notice.  Robbie might.  I could see him ask Pop (my stepdad) one day where his mom is.  But even that’s a very slim possibility.  I just don’t know.  Kay is going to come over early on Tuesday to watch the boys so we can go to the funeral without them.

I’m not sad for her.  I’m sad for my stepdad because I know he will miss her.  But she lived a very full, wonderful life.  These last two years have been the worst for her – she had to be moved out of her nursing home apartment and into a full time care room. She wasn’t allowed to leave the room without an escort.  Her few joys were basically taken away – she couldn’t go play cards with her friends when she felt like it, she couldn’t even go to the mailbox on her own.  She went from a cute one bedroom apartment with a balcony and her plants and knick knacks to a hospital room.  I think she was ready to go.

I’m sad for my mom, too, because I think her mother-in-law gave her some sense of purpose.  Mom was the most likely to take her to church or the zoo or out to the park.  If it wasn’t for my mom, the adventures would have been very rare. 

Rest in peace, Lucille.

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!

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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.

“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.