Tag Archives: Mental Health

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.

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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.

Dealing with the darker side

I understand impulse control. I have a hard enough time controlling my own impulses and I do not have ADHD. There are times, though, when I worry about Colin because I don’t know how you separate impulse control from just plain bad behavior.

Impulsively pushing buttons, I understand.  Yanking the wheel out of his brother’s really nice pop-up Lorax book because he has to know how things work… that makes sense (even if it frustrates me).

Picking up our 65 lb dog by her collar and throwing her to the ground? I can’t comprehend that.  What makes a child – any child – think that’s remotely okay?  (Let’s not even think about how Chloe outweighs him by at least 10lbs. How he managed to lift her up by the collar – even with her back legs still on the floor – is beyond me.)

This is what I walked in on after leaving the room for a few minutes last night.  We were going to head to the gym after dinner – I went to wake Rick up – and I told the boys what the plan was.  They were all excited (there’s a Kids Club at the gym). I told them all they had to do was behave for a few minutes while I went to get Rick and change clothes.

I heard her yelp and came in to see Colin holding Chloe up by the collar. Before I could get to him, he threw her to the ground.  I lost it.

I’m fiercely protective of my children – even when it’s one against the other.  Even when they’re “fur” children.  I completely lost it.

And then I just started crying.  I cried for about an hour. We obviously didn’t go to the gym. I felt awful for Robbie and Ryan – they’re constantly being punished for things that Colin does and that’s not fair to them.  I was too upset to go and too upset to be left at home with Colin.

Rick blames himself, which I tell him doesn’t make sense.  He’s not to “blame” for Colin – he saved Colin from a far worse fate.  If anyone’s to “blame” it’s that b—- that gave birth to the poor kid and likely messed him up for life by how she mistreated him in those first fragile few weeks.  (For anyone just joining us, Colin was adopted through foster care – taken from his birth mother at 5 weeks old.)

Rick called Dr. L’s office again last night. Hopefully we’ll hear from him soon.  Something has to give.

ETA: I am not saying that all kids with autism/adhd were mistreated at some point. I hope it doesn’t come across that way – that’s not my intention in the least. Colin may very well have issues beyond the autism/adhd diagnoses he’s received so far. He was malnourished and mistreated as a baby – peanut butter shoved in his mouth to keep him quiet and never held or loved for those first five weeks. I know that irreparable damage was done to him – physically, psychologically, emotionally – before he was even 2 months old.