Sunday, September 30, 2012

Moving in the Right Direction

This week has kept us busy with monitoring Alex’s health and progress, but we seem to be moving in the right direction, which is a blessing. Last Sunday afternoon, Alex decided that he wanted to watch the NASCAR race on television with me. Although he has been a NASCAR fan for several years, lately he hasn’t watched the races on television. In fact, he hasn’t watched television much at all since he came home from the hospital in June. I suspect that his medications affect his attention span and make focusing on a show difficult for him, as he can’t seem to read for very long, either. Nonetheless, he managed to stay alert through the afternoon and follow the nearly three-hour race to its end, enjoying himself thoroughly, especially since his new favorite driver, Jimmie Johnson, came in second place. 

His renewed interest in NASCAR wasn’t limited to Sunday, however, as he has been asking for new NASCAR banners to hang in his bedroom.  Recently, he decided he wanted a Jimmie Johnson banner for his room. Searching online, we found a three-foot by five-foot flag with a picture of Jimmie’s car. Using Christmas and birthday money he still had left in his Amazon account, he had me order the chosen NASCAR #48 car banner, which now hangs above his bed and looks like it’s going to run over him in his sleep. This week, he also had me order a banner illustrating last year’s amazing Daytona 500 win by rookie Trevor Bayne, who is about the same age as Alex. When it arrives next week, he’s already picked out a spot on the wall above the head of his bed to hang this new decoration. His renewed enthusiasm for NASCAR certainly beats his obsession with gas prices, and I’m glad to see him excited about sports again.

Besides showing interest in leisure activities, another sign of progress came on Tuesday when his behavioral therapist, Melissa, came to work with him. They spent nearly an hour together working on a social story entitled “Alex Goes to Lakeside,” a reference to our plans to send him to a school/day program for adults with disabilities. Because he needed to have a complete behavioral assessment before he would be considered for enrollment in the program, we have been working with the behavioral therapist to develop a formal plan, which has taken a couple of months. With the behavioral plan nearly complete, Melissa felt we should start preparing Alex for going to Lakeside and reminding him what expectations they would have of him regarding his behavior.  Melissa and Alex worked together on a booklet as she asked him several questions about what kinds of things he thought would be fun at Lakeside, how he would make friends, and how he would need to behave. Her enthusiasm and sweet personality engaged Alex the entire session, and he worked very cooperatively with her to complete the booklet. Now we hope that when he eventually does go to Lakeside, he’ll be equally cooperative and pleasant with the staff there.

Later that afternoon, I received a call from the office of the nurse practitioner who oversees Alex’s psychiatric medications. I thought perhaps the call was to remind us of our appointment later in the week; instead she wanted to give us the results of Alex’s blood tests from last week. Thankfully, all of his tests were normal, except his thyroid function is low. Consequently, she wants to start him on thyroid medication. Having been on thyroid medication myself for fifteen years since the removal of most of my thyroid, I recognized some of the symptoms Alex has shown that indicate hypothyroidism. Lately, he has been lethargic, has dry skin and hair, and he seems to be cold a lot of the time, wrapping himself in blankets to keep warm. I thought some of these symptoms might be related to side effects of his medications, but low thyroid also explains them, too. The next day, his new family doctor’s office also called to give us the results of his blood tests, telling me about his low thyroid function and need for medication to treat the hypothyroidism. Impressed that both offices called us right away with the test results and a plan to address his thyroid issues, I was also glad that they agreed upon the course of treatment.

On Thursday, we took Alex to his psychiatric nurse practitioner for his scheduled three-month update. She was pleased to see the improvements in Alex and agreed with us that the medications she has prescribed have proven effective in keeping his anxiety under control. We asked her about the occasional tremors we see in his hands, which she attributed to his lithium medication and assured us was nothing to be concerned about. In addition, she told us that the lithium likely caused his hypothyroidism, as well. However, the benefits of lithium in terms of his improved moods outweigh these side effects, and we agreed that he should continue on the lithium. Another concern we shared with her is that his feet tend to fall asleep if he’s sitting for a while. We notice this especially if he’s been riding in the car; in fact, his right foot fell completely asleep during the half-hour ride to her office in Michigan City, and we had to wait for him to regain feeling in his foot before we could leave the car. She suspects that his hypothyroidism may be causing this temporary loss of feeling in his feet and is hopeful the thyroid medication will improve the condition. We are also hopeful that regulating his thyroid will help his lethargy, tendency to feel cold all the time, along with improving his dry skin and hair. At the same time, we always feel a little nervous each time we add a new medication, wondering if any negative side effects may occur. However, my familiarity with thyroid medication from my own experience of taking it makes me less concerned about Alex having any bad reaction and gives me more confidence that he will feel better once his thyroid returns to normal functioning.

Although we would prefer that Alex not have to take medications, we are pleased that he seems to be making improvements in his health and behavior. Not only are we thankful for the healing and progress he continues to make, but we are especially grateful for the professionals God has placed in our path who have provided the expertise, understanding, and compassion we need to help Alex reach his full potential.

“The times of refreshing shall come from the presence of the Lord.”  Acts 3:19


James said...

Hi – Will you please post a link to your important Blog at The Autism Community at Our members will really appreciate it.
Members include: Those living with Autism, parents of children with autism, their families, friends, support groups, etc.
It's easy to do, just cut and paste the link and it automatically links back to your website. You can also add Articles, News, Photos, and Videos if you like.
Email me if you need any help or would like me to do it for you. I hope you consider sharing with us.
Please feel free to share as often and as much as you like.
The Autism Community:
James Kaufman, Editor

K. C. Wells said...

I hope thyroid medication helps Alex's energy. We know how that is, don't we? :) Glad to hear that Alex is returning to some of his old interests!!!

Pam Byrne said...

Hi James,
Thank you for inviting me to be part of The Autism Community. As you requested, I have posted a link to my blog. I'm looking forward to being part of your group.
Take care,

Pam Byrne said...

Hi K.C.,
You and I both know how a sluggish thyroid can cause physical and mental side effects. I'm just hoping that you and Alex get better soon on the right doses of thyroid medication. :)

Jim Reeve said...

Hi Pam. We too have struggled with medication in regards to our son. He's 8 and has Aspergers syndrome, but we're hesitant to give him medication. Jacob won't even take cough medicine if he's sick, so getting him to take meds on a daily basis would be impossible anyway.

Pam Byrne said...

Hi Jim,
Thank you for your comment; I'm always happy to hear from fellow autism parents. :) We're fortunate that Alex is very good about taking medicine. He's been swallowing pills since he was five because he had to take vitamins and other supplements for his various needs. This is one aspect of his condition that has thankfully been easy. I hope that Jacob is doing well.
Take care,