Living Better Chemically?

Some of you may remember, back in the summer, I was debating whether or not medication might be helpful for regulating Kevin's emotions and behaviours.  Then, at the end of September, he had a psychiatric assessment with Dr. Ahmad in which she recommended we try giving him Prozac to help his anxiety. At the same time, we were still undergoing medical investigations for Ryan, who was experiencing uncontrollable outbursts of crying that had no apparent cause. I also had a lot of concerns about Andrea's emotional well-being. (If you want to scan through for a refresher, most of that info. can be found here.)

Several months have passed, and a lot has happened.  My focus for the post was going to be Kevin, but then I realized, right now, this topic of "Living Better Chemically?" is something that relates to all three of my children. 

Kevin
Kevin saw Dr. Ahmad in September, and we started off with up to 2.5 ml of Prozac a day to help with his anxiety. After a few weeks of adjusting to the meds, it seemed to be helping him quite a lot. He was happier, more helpful, had more confidence, and his negative behaviours at school were decreasing.

By the end of October/early November, however, serious problems began to crop up in the afternoons at school.  He was lashing out at other kids, not doing his work, trying to run away from the classroom, and trying to run away from me when I picked him up at the end of the day.  It seemed by the afternoon, he was just worn out. Fed up. They tried giving him some quiet time before returning to class after lunch, but he was done.  He also started lashing out at Andrea and I when I would pick them up at the end of the day.

At our next appointment with Dr. Ahmad, we decided to add a half-tablet of 0.25 mg Risperidone at lunchtime each day in the hopes of improving his mood stability in the afternoon.  Again, it took a few weeks for his system to adjust, but we saw some improvement, and thought it a success.

Over the holidays, we increased Kevin's dose of Risperidone to a whole pill at lunchtime. He seemed to need the extra medication to regulate himself better during the whole Christmas-New Year's-Being Off Schedule extravaganza.  He appeared fairly stable.  We got through the holidays with no major meltdowns.

But when he went back to school after the holidays, something changed. 

I noticed that he was napping a lot on the weekends and in the evenings.  Kevin hasn't napped in about 4 years (unless he is sick).  He has started screaming at us at home again and calling people "stupid." His after-school outbursts/running away episodes when I picked him up got to the point that they now have to have an EA accompany him out to the lobby to meet me after school. In class, the teacher has to keep him within arm's reach and constantly encourage him to complete the work, which he often "digs in his heels" (her words) and refuses to do.  They also have the EA from the other classroom keeping an eye on him in the afternoons, trying to prompt him to complete assigned tasks. 

Really, though, it was during a school meeting I had for Ryan last week that I became truly worried.  After Ryan's meeting, the principal asked, "Can we have a talk about Kevin?" and I knew it wasn't going to be good news.  And it wasn't.  She was seriously worried about Kevin.  He had taken to screaming at people that they were "stupid" and "idiots." At one point he had yelled, "I'm going to kill you!" When his teacher was away one afternoon, even though she had prepared him for her absence, he ran across to the other grade 2 teacher's class, plunked himself down, and refused to return to his own classroom. Even the principal, who has a great relationship with Kevin, could not get him to listen to her. He would run away from her when she tried to talk to him. The staff noticed he had developed a tendency to tremble, and was now becoming extremely emotional and crying very easily, which he hadn't done before.

She noticed the increase in Kevin's Risperidone and asked if that could be a factor.  I agreed it was worth investigating.  So, I made a call to Kevin's psychiatrist to get an emergency appointment since we weren't due to see her for another month.

I went home in tears. What could I do to help my struggling boy? Then, that same afternoon when I picked him up, I found out Kevin fell asleep on a bean-bag chair in class; he slept for an hour and a half, and they had to wake him up to come home.

And my tears continued when I got his report card on Tuesday. Kevin has always been an A/B student.  He is extremely intelligent and capable.  Some of his report card reflected that: as usual, all A's in the Math strands.  A in Social Science. A's and B's in Religion, Literature and Science. Then, BAM: C's in Media Literacy, Physical Education, Drama, and Music. Even more shocking, a D- in Health.  Health?! I knew this was not a true reflection of my son's academic skills. Right away, I guessed what the problem might be.

Me: "Kevin, what time of the day do you have Health?"

Kevin: "Right at the end of the day, after third recess.  She only comes once a week. And she's not my regular teacher. And she talks and talks and talks and I don't want to listen."

(Three problems right there: 1. He is mentally/emotionally exhausted at the end of the day from trying to hold it together all day long; 2. This is not a teacher he sees daily, and who has the time to cater to Kevin's special needs; 3. Kevin doesn't do well with lecture-type lessons in big groups.)

Me: "What do you find hard about Drama and Music?"

Kevin: "The kids get too loud.  It makes me mad. It hurts my ears.  And I don't like working in groups."

(Sigh. These are thing we already know, and try to mitigate as much as possible.)

The next day, we went to our appointment to see Dr. Ahmad.  Of course, when she asked Kevin how he was feeling, he said, "Fine," and when she asked how school was going he said, "Good."  I tried to coax a little more out of him, but I finally gave in and had to sit there and relate this whole story to Dr. Ahmad right in front of him.  I felt awful. I don't like talking about my child like he's not there, and having to focus on his negative issues, but she needed to understand the urgency of our situation.

Thankfully, she did.  Right away, when I described his symptoms and home/school struggles, she was alarmed.  When I talked about his report card, she became visibly upset. "That's just not fair," she said. "This is not his fault.  This is not a true reflection of his skills." I heartily agreed! She felt that we were right in thinking the Risperidone could be a major factor in Kevin's behavioural regression.  She even said, "I feel so bad this is happening to him." She said Risperidone has a sedative effect, so no wonder Kevin is extra tired and irritable after taking it at lunch.  Our joint decision was to wean him off the Risperidone this week. He will completely stop taking it next week. We also decided to keep our appointment at the end of the month, so we can reevaluate then how he's doing being off the Risperidone.  At the next appointment, we may increase his Prozac because that has worked well from the start, and this has all caused a spike in his anxiety issues, which also manifests itself in difficult behaviours. If he's still having problems in the afternoon, we may consider trying a new medication in place of the Risperidone.

The doctor also wanted it clearly communicated to the school that Kevin's academic drop and increase in difficult behaviours should be reviewed in context.  In fact, she took the time to type up a letter for the school, explaining the effects the Risperidone had on Kevin, and explaining why we were removing this medication.  I truly appreciated this coming from a professional although I'm pretty sure Kevin's school staff already understands our situation well.

Last night, we had parent-teacher interviews.  As soon as it was my turn, the teacher and I were on the same page.  She wanted to discuss Kevin's behaviours and the effects of his medication. She, too, recognizes Kevin's academic strengths, and understands there are no concerns in that area.  I told her about the letter (which she hadn't seen yet). Her relief was evident. She kept saying, "That medication was doing nothing for him, so he shouldn't be on it." We agreed to keep each other updated on his behavioural changes as we tweak the meds, so we can find a good balance for him at school and home.  After all our serious talk, she said, "I just love Kevin." I know she does.  I can see the sincerity in her eyes. I also know because she shared how much she does to ease his anxiety, prepare him for changes, give him the time he needs to regulate himself, assess his work based on his best efforts and not his bad days . . . She is one awesome teacher.

So, that's where we're at with Kevin. We wean him off the Risperidone this week, and hope our happy guy from September returns. As for his afternoons at school . . . ? It's still a mystery. We are all working together to find a solution to this wall he seems to hit every afternoon.

My heart hurts for him.  It kills me to see my bright, beautiful boy fighting so hard just to get through the day without it draining his spirit.

Ryan 
Ryan's story is different.

He had troubling behaviours that involved random, angry outbursts of crying that could not be soothed. He was also having weeks on end where he would be up for hours during the night, then other weeks where he'd be fine, then weeks having trouble falling asleep, then weeks waking too early.  Disrupted sleep patterns are common in autism. The regular pediatrician ruled out any obvious medical issues in September. However, at my request, we got a referral to Dr. Lenna Morgan, a pediatrician who specializes in working with children who have autism.

After assessing Ryan, Dr. Morgan suggested we get routine blood work and also genetic testing done.  To help with his mood and sleep disturbances, guess what she prescribed? Risperidone, of course! At the time, it was just an odd coincidence that within a week of each other, two different doctors had prescribed the same medication for my boys who are at two very different places on the autism spectrum.  However, Ryan's dose was put at three full tablets a day.

I was not really comfortable with this. Kevin, who's 2 and a half years older and 30 pounds heavier than Ryan, was only on half a pill. I was hesitant to medicate Ryan so heavily.  So, I decided to go with one pill in the morning and half one at supper.

Over the next few weeks, we did see some increased stability in Ryan's emotions. There was a lot less of the sudden, unexpected crying. However, his sleep was worse than ever! We went for several weeks where he was up for hours at a time at night. I was exhausted. I bet Ryan was, too.

So, at our next appointment, I told the doctor about the improvements, but also about the sleep problems.  She gave me a bit of a stern look and said, "The Risperidone is supposed to help him sleep well, too. Give him one in the morning, and TWO at bedtime."

Good things came of that appointment.  Ryan's blood work came back all clear. (Subsequently, his genetic tests came back all clear, too.) I decided to follow the doctor's instructions about giving Ryan three full doses of Risperidone a day. (Well, I did still space it a little bit: one morning, one supper, one bedtime.) The results have been dramatically positive.  Ryan is sleeping like a champ most nights, from about 8:30 PM till 7 AM (or whenever his noisy siblings wake him up!). School and Summit both report the inexplicable outbursts of crying much reduced, and he's having a lot more "happy" days in both places. At home, he is generally in a very good mood, with lots of smiles and giggles and cuddles for us.

So, when it comes to the Risperidone, what can I say?  It's the truth of the frequently used saying, "If you've met one person with autism, you've met one person with autism." It's called a spectrum for a reason.  My high-functioning child went into a behavioural-regression-tailspin on the lowest dose of Risperidone, and we're taking him off it immediately.  My low-functioning child is thriving on a dose of three full tablets of Risperidone a day. What harms one child may help another. It's a lesson I have heard before, but a lesson I learned through experience, now.

Andrea
Andrea is my wild card right now. Her anxiety and tears and aggression and rapid mood swings continue as discussed in the September post, but at least we're finally starting to get some face-to-face contact with agencies.

I was getting frustrated because I hadn't heard from the Regional Children's Centre yet, so I called them last week to ask where Andrea is on the waiting list.  Well, lo and behold, the coordinator finally calls me back this week, and guess what? Andrea was removed from the waiting list! WHY? They sent a letter stating I needed to contact the coordinator to set up a meeting to get the process started. They received my registration paperwork, but since I didn't call them back, they took her off the list. Um, I NEVER RECEIVED THE EFFIN' LETTER! (Can you tell I'm pissed off?)

When I explained this, the coordinator made an appointment to see us right away. That appointment was this morning. (Thanks, although you've already set us back months because of the missing letter. Maybe you could call next time?!) Anyway, Andrea and I went in and met with the coordinator. We went over the registration info., added a few things, and she talked to Andrea.  I told Andrea to be totally honest and not worry about what Mom or anyone else thinks because these people wanted to help her.  She was very shy and didn't say much, but her emotions came through because she was teary and a bit trembly through most of the half-hour visit.

The coordinator now has Andrea on two wait lists. One is for an anxiety group that they run for kids up to age 12. It is a 2-month group that meets weekly to discuss things like how anxiety feels, what causes anxiety, and ways to cope with it.  The other is for one-on-one counseling with a therapist for 6 sessions to start (same topics as the group, just more individual). The coordinator said we would probably hear something in the spring, and we should accept whatever comes available first. We may be able to do both if, when the time comes, we think she might need both.

In the meantime, however, I had booked an appointment to take Andrea to our family doctor next week, with the hopes of getting a referral to a child psychiatrist. I mentioned this to the coordinator, and she thought we should follow through with that.  She mentioned that most of the child psychiatrists are at Maryvale (hmm, I wonder if Andrea will see someone there, like Kevin does?).  She also asked how we feel about the possibility of using medication. (After all, that's the difference between psychiatrists and psychologists: psychiatrists medicate, psychologists are more talk-therapy). At this point, I just want to get poor Andrea some help. She's waited too long, and she keeps asking me when we're going to do something for her. So, hopefully we'll get in to see a child psychiatrist soon and get some support that way.

***

In summary: Are we Living Better Chemically? One sort of, one yes, one possibly/we'll see.

And one mom whose sanity depends on something working.

 

Potty Training

[First off, can I just say, wow, it's been 4 months since I've done a blog entry. And a busy 4 months it has been. Lots happening, highlights of which I post on Facebook, but seriously, I need to get back to blogging. It helps me clear my head.]

For a few months now, Ryan has been taken to sit on the potty at Summit Centre about twice a day. Then, they started doing the same at home on Thursdays.The idea is simply to get him used to sitting on the potty, seeing it's not scary, and getting him comfortable with the bathroom routine.

The potty routine goes like this: We take him into the bathroom and tell him to pull down his pants. He can do that independently. Then, we help him remove his diaper. Actually, as of yesterday, he started wearing pull-ups. He sits on the regular toilet with a potty seat. We help him get situated comfortably, and he has to sit for 3 to 5 minutes. He gets lots of praise for sitting nicely. We aren't expecting him to pee or poop yet. If he does, bonus.  When he's done sitting, we help him put on his pull-up and pants. Then, we go to the step stool by the sink and he steps up. A new part of the program is teaching him to "get soap" independently.  We use pump soap. So far, he only has to grab the soap. We help him pump it.  Then, we turn on the water and model "do this" or "rub hands" to rub his soapy hands together under the water. Next, we help him turn off the water and try to get him to "dry hands" independently. At home we use a towel, at school he uses paper towels and then throws them in the garbage.

As of yesterday, official potty training has begun.  At school, home, and Summit Centre, we will follow the same routine, about once an hour.

So far, it's all been at home, because yesterday was a Sunday and today is a snow day, so school got cancelled.  The good news is he's been going willingly with me to the bathroom, sitting well, and not getting upset.  Otherwise, his pull-up is wet every time I take him to the bathroom, so I know he's not ready to try underwear yet!  Also, when it comes to washing hands, all he wants to do is play in the water.  Getting him to functionally "get soap" and "rub hands" is a pain.  He's too interested in splashing in the running water and getting it all over the counter and floor. He also likes to grab the cups by the sink and fill them with water and dump them in the sink. I try to block this, and I've tried moving the cups, but he's fast!

We also have a little issue while he's sitting on the potty. He keeps reaching down to touch himself (fine, whatever), but then he'll shove his hand into the toilet water and swish it around! Ewww! Again, I've gotten pretty good at blocking that, but he's got lightning-fast moves when he's getting into mischief!

Anyway, I know this is going to be a LONG process, like everything with Ryan.  I don't expect any major developments soon. Let's be honest, I'm thinking in terms of years here.  I'll just be happy if he is eventually mostly/fully potty trained.   In the meantime, I've submitted paperwork for an Easter Seals Incontinence Grant. As Ryan gets bigger, his diapers/pull-ups are getting more expensive. Frankly, I should have applied for this last year, but I was hopeful we'd be more advanced in the toileting process.

To sum up, we are officially in potty-training mode. As you can see from my description, above, of the potty routine, there are so many little steps which Ryan has to learn.  It reminds me, once again, of the skills we take for granted. Ryan has to learn to put his pants and pull-up down and up. He has to learn to sit on the potty. He has to learn to step up on a step stool. He has to learn to get soap. He has to learn to pump soap. He has to learn to turn on the water. He has to learn how to rub his hands together. Etc. . .

And this doesn't even start to get into knowing his body, recognizing when he needs to go, having a way to tell us he needs to go . . . Sigh.  Let the marathon of potty training begin! Wish us luck and sanity!