Friday, February 27, 2015

IEPs, Stimming, Side Effects & More


Right now we’re in the land of IEP assessments. My youngest is currently going through assessments and this week I put in a request for an IEP assessment for my oldest after I found out that he’ll lose his current support when he goes into high school next year.

Honestly, I find the whole IEP process irritating. After filling out pages and pages of questions with the clinical psychologist to have my youngest son evaluated and later diagnosed with autism, I found myself filling out the same piles of forms for the school district. What I find frustrating is that the school is conducting their own assessment in areas that have clearly been evaluated by an expert. You would think that our licensed psychologist’s 19 page report about my son would be sufficient for the school district, but instead I find myself answering on at least 4 different surveys with hundreds of questions what appears to be the same exact questions. How many ways can a parent explain that their child prefers to play alone?

The thought of doing that again for my oldest son tires me.

In the meantime, my youngest was suspended again. It was a long meltdown that started with his realization that the long division math problems will now use three digits instead of two. “It’s going to take too long!” he screamed. In the end, he ended up ripping up his work, damaging a school book, running out of the classroom, climbing a fence to leave school property, elbowing a student and hitting another student in the head with a cardboard box.

When I asked where we go from here, they didn’t have an answer.

Not only are we in a holding pattern at the school, but we have yet to start therapy since we’re still stuck in the referral process with the insurance company.

In the meantime, my youngest has started a new stimming behavior. He’s now doing a unique eye gesture, turning one eye to the side with a half squint. I think he’s also blurring his vision as he does this. Anyone familiar with visual stimming?

As for my oldest, he appears to be doing good with his addition of Wellbutrin. When I asked him if he thought it was working, he said, “Yes, I use to get so stressed out over my homework, but now I don’t mind it so much, it doesn’t feel like such a big deal.” We can all tell he seems more at ease around the house now.

On the downside, I got a call from his psychiatrist telling me that his latest lab work showed that his thyroid levels have dropped too low and he now needs to see an endocrinologist to be evaluated for hormone replacement therapy. I was told that this was most likely due to his Lithium, it’s a very common side effect (up to one third). At first I was really devastated by this news, worried that the Lithium had permanently damaged his thyroid, but I was reassured that the thyroid is not damaged but instead the Lithium is acting as a blockade. I was told that if Lithium treatment was removed, the thyroid would return to normal function.

With this recent news, it got me thinking... Was the Wellbutrin even necessary? Is it possible that the depression was a result of the low thyroid level? Was it possible that once the thyroid levels were brought back to normal, the depression would have lifted without the help of more medication? I wish we had this information before starting Wellbutrin.

I know some of you may be thinking... Stop the Lithim now!

It’s a fair thought, but it isn’t so easily decided. If the Lithium wasn’t helping him so much it would be easy to stop it, but Lithium continues to be the best medication to date. And it’s not just my opinion, but my son’s.

My son is now a teenager, he’s no longer a little boy looking to me for all the answers. As he gets older he can communicate much better and make judgements about what’s helping him on his own. His opinion matters more than ever.

When I told him about the recent tests, he of course was disappointed at the thought of adding on another medication for his thyroid, but when I asked if he would prefer to stop the Lithium it was an astounding, “NO!” Instead he asked, “Can I try to quit one of my other medications so I can add on the thyroid one?” (Great idea by the way!) With determination he proclaimed, “I’m not going to stop Lithium!”

I admit one of the blessings in my kids getting older is that they can help advocate for themselves.

I’m certainly sad about my son having to take on another medication, this never gets easier—ever! But I can’t sit and wallow in it, I have to keep moving forward with where we’re at.

As my husband reminded me, “We knew side effects were a possibility when we started medication.” This should’t be a surprise to us now that we’re facing it. We can’t ignore all the “good” medication has brought. Our son is a thriving teen, we didn’t think that would ever be possible before he started medication.”

I have to keep that in mind.

It’s easy to forget how bad things were when things are going so good now. Medication continues to help my son so it’s important that I don’t let my fear stop him from experiencing a good life.

I’m learning once again about how I have to lean on my faith, acknowledge that we are doing the best that we can under the circumstances and continue to hope for the best.

Taking it one day at a time...


3 comments:

  1. My daughter just started Lithium. She was hospitalized twice this month and during the second stay they added Lithium. The jury is still out on how well it will work for her. She's also on Zyprexa and Clonidine. She just came home on Monday. One of the most stressful things about having a young child this ill is that we have to weigh the health risk of the medications with not being able to function in society. I really hate that about all of this.

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    1. Oh Erin, I am so sorry to hear about your daughter, I hope that you have a very positive experience with Lithium. Besides giving stability, Lithium has a lot of other positive benefits, including suicide prevention and it helps heal the brain damage caused by mental illness, this was all shown through research presented at Stanford. I hope you get her stable fast and on the right track with minimal side effects. Making these medical decisions is a terrible place for a parent to be. I wish you the best!

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  2. Caroline is dealing with the same the same lithium and thyroid issues. I feel your pain!

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