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The Counseling Angle

  • Posted on December 13, 2013 at 10:00 AM

I’ve never been much of one for counseling. I’ve tried it for depression. I’ve tried it when Mark and I were working our way through a rough marital patch. I’ve also watched Mark go through counselors until he found one he more or less clicked with. It’s hard finding the right person, and sometimes there just aren’t enough options.

After Willy started having seizures, he struggled to cope with them. The seizures destabilized his moods and made him prone to irritability. When he started taking anti-seizure medication, we expected his moods to stabilize, too. Instead, his moods got worse. In a moody fit, Willy wrote us a very scary letter that expressed suicidal feelings without suicidal ideation.

Mark is diagnosed with bi-polar disorder. I’m diagnosed with depression. We know way too much about emotional imbalances to let something like that slide. I made an appointment with Willy’s pediatrician, showed him the note, and asked for a referral. Actually, I didn’t have to ask for the referral, because the pediatrician offered me a referral before I got the chance to ask. Of course, Willy’s doctor was well-versed on Willy’s autism and epilepsy diagnoses, so he knew we’d need someone with special skills. He had just the person in mind.

When I made the call, I explained the complexities of our situation to the receptionist and asked for an appointment with the person Willy’s pediatrician recommended. It turned out that the person our pediatrician had in mind was a psychiatrist. The receptionist confirmed that she would be the very person she would recommend for a family in our situation, if we needed a psychiatrist. The receptionist recommended, however, that we start with a psychologist. She selected one based on our criteria and we scheduled our initial appointment.

Willy’s counselor turned out to be a great fit. She was easy for me to talk to, which is important because I’m the one who has to explain the complexities of our family dynamics. She’s also easy for Willy to talk to, which is even more important because he’s the one she’s trying to help. She has a solid understanding of autism, a good understanding of epilepsy, and a fabulous understanding of how special needs and adolescence can collide.

During our next neurology appointment, I showed the same letter to the neurologist. I talked about the counseling and I also talked about my discovery that mood instability and depression were a side effect of the prescribed medicine. After discussing our options, the neurologist recommended that we try a supplement called B6 before we considered changing Willy’s prescription. We were very lucky to find a medicine that eliminates Willy’s seizures with such a low dose and there’s no guarantee that another medicine will have the same results. In his experience as a neurologist, B6 had helped several patients with such side effects, though there wasn’t a documented medical explanation for it.

I can’t tell you how much of the transformation is due to the B6 and how much is due to the counseling. All I can tell you is that Willy is doing much, much better. It’s going a bit far to say Willy’s mood is stable, because he is, after all, a teenager. But he’s not depressed and his mood instability is not abnormal in its frequency or its severity. While we’re not ready to stop the counseling sessions quite yet, we’re focusing more on skill-building than on damage control. The hope is that, when we’re done, Willy will be better able to cope with life without the safety net of counseling, though we’ll continue the supplement.

Epilepsy: The School to Summer Transition

  • Posted on June 19, 2013 at 10:00 AM

This school started with some big news: Willy was diagnosed with epilepsy, another neurological disorder to go along with his autism diagnosis.

Willy was a lucky kid when it comes to his epilepsy. The doctors’ first guess at which medicine would control his seizures was correct, and the dosage he needs to maintain control is relatively low. Now that 2013 is almost half over, I’m glad to say that he has been seizure-free throughout this calendar year. Many people with epilepsy aren’t so lucky or so easy to treat.

A big part of the success of this treatment, however, involves Willy remembering to take his pills in the morning and the evening. He needs both doses. He needs to remember every day. This is important.

It’s also easy to forget. When you feel sick, it’s relatively easy to remember to take your medications. When you don’t feel sick, it’s easy to forget. Willy hasn’t felt sick in many months, which is a really long time for him.

I was worried that the change in routine would mess things up. After all, Willy’s pill-taking revolved around his school schedule, and changes to that schedule tended to mess things up during the school year.

I’m happy to report that Willy has made the adjustment almost completely independently. He takes his morning pill when he wakes up, whenever that happens to be, and he takes his evening pill before he goes to bed, whenever that happens to be. He’s needed few reminders. He’s exercising almost complete independence.

I’m so proud of you, Willy! Great job!

Routine

  • Posted on December 7, 2012 at 9:00 AM

As the weekend comes around again, I very much want to avoid what happened last weekend. Last Saturday night, Willy didn’t take his anti-seizure medicine. He didn’t take it Sunday morning either. Late Sunday afternoon, I checked, and made him take a dose right then, and then pushed back his evening dose. But that means he still missed a dose.

While he didn’t seem to have any seizures, it’s still a risk with every missed/delayed dose. The problem is that routine is a key factor in remembering to take it, and our weekend routines are rather muddled.

We need to get a good non-school day routine in place to make sure that we stay on top of this. I’ve never been very good at the whole medicine regimen thing, but this is too important to muff up. And Winter Break is coming.

Medicinal Improvements

  • Posted on August 27, 2012 at 8:00 AM

So, I’ve devoted quite a few posts to the video EEG. This is the last one, though it’s less about the EEG and more about the consequences.

It may seems hypocritical, considering that I’ve so adamantly resisted medicating the boys for their autism, but my main hope throughout this process was getting a medication that could reduce or eliminate Willy’s seizures. You see, autism and epilepsy is not the same thing at all. In my experience, medication for people with autism is usually recommended because autistic behaviors impact the lives of others in ways they perceive to be negative. (There are certainly exceptions to this.) When it comes to epilepsy, however, the medication is recommended to address a medical condition that impacts the quality of life of the person experiencing the seizures. In my opinion, that is the purpose of medication: Medication should help the person who is taking it, not help other people “manage” the person who is taking it. Of course, there are exceptions to this, too, especially in the case of severe mental illness in which the person becomes a danger to themselves or others, but again, that’s not what I’m talking about here.

My point is this: My goal was to get a prescription for medication that would reduce or eliminate Willy’s seizures, so he could get back to his own normal. I’m happy to say that the doctor’s first try was something of a success. The first medication works well, though not completely, and the side-effects have thus far been minimal. Not only have we gone from 3 to six seizures a day to 3 or 4 seizures a week, but Willy’s tiredness and moodiness have dramatically decreased as well. There’s still some fine-tuning to do, and it might require an increase in the amount of medication he takes, but we’re making good progress.