Spectrum Warriors: Life Through The Autism Spectrum

To Medicate or Not

Deciding to medicate your child with ASD is not an easy decision to make. For us, MJ has been on medication since she was two weeks of age, but it has been for reflux related symptoms. Over the last 5 years we’ve had several different GI-related meds for her and have tried multiple times to remove them, but in the end, they are vital to her health and well being. Without them, she won’t eat. So the decision has been easy for us on those medications.

What has not been easy is deciding to add medication for her anxiety symptoms. When MJ was diagnosed 2 years ago, she was given a diagnosis of high-functioning Aspergers with high anxiety and OCD-like tendencies. Our psychologist stopped from giving her a confirmed Anxiety and/or OCD disorder but warned us it might be possible in the future. It was his hope that with ABA therapy we’d be able to teach her how to reduce her OCD and anxiety symptoms enough to eliminate these as standalone co-morbid disorders, and they would be just characteristics of her autism spectrum diagnosis that we could manage.

This worked for a while, in fact I can say that our ABA therapy did wonders for her OCD behaviours and while she still can be obsessive in nature, it usually only comes out when she’s overly anxious or verging on a meltdown. We can live with that.

However, all the therapy and current tools in our toolbox have not been able to reduce MJ’s anxiety. In fact, it has gotten worse since she started school – which was to be expected since that is arguably one of, if not the biggest changes in a young child’s life.

One year ago we started down a path of investigating the possibility of seizures or epilepsy with MJ. All of us around her had started to notice that at times she would get these deep purple circles under her eyes and have a need to shut the world out and zone out for anywhere from a few minutes to several hours. Sometimes these episodes would involve her blocking out parts of her day.  That was a scary time for us when whole hours of her day would just disappear from her memory.

MJ’s EEG was inconclusive. It showed suspicious activity, but not enough to rule seizures in or out. The neurologist said all it really shows is that her brain activity is different or atypical, so it could simply just be a confirmation of her diagnosis. He sat down with us and asked us questions, history, he listened – that was one of the longest doctor appointments of our lives (besides her diagnosis appointments). He was thoughtful, he pondered things and wrote notes.

The neurologist had a theory, he told us about something called abdominal migraines. I had never heard of them before but I do get the occasional migraine, maybe 3-4 a year and as he explained the symptoms it sounded like a very real possibility. He believed it was possible they were triggered by stress and that her anxiety was a real problem. School was just around the corner and while we were working hard to get MJ ready, she was having a lot of trouble with the concept.

He mentioned that medication may be something we would want to consider, but we all thought it would first be good to figure out episode triggers. So we began keeping logs (not unfamiliar to us), and we were able to determine there seemed to be two triggers, one was stress, the second was nitrites. We removed nitrites and the frequency of these episodes decreased slightly, but not enough.

Some of her episodes were so bad they would include vomiting. They usually were triggered by big changes or stress, a summer vacation, school visits etc. The neurologist became 60-70% convinced these were migraines and they were triggered by stress, but still not enough to rule out seizures. We all wanted to keep her off meds, so we came away with recommendations for increasing prep and working on anxiety reducing tools. But it was acknowledged that after 1.5 years of ABA therapy if we hadn’t achieved that yet, we might not be able to find the right tool to help.

School was hard on MJ. We’ve come a long way but we still struggle with the need for prep she has and the school’s ability to provide it. Because MJ holds things in and is high functioning she really doesn’t show like a student who needs constant support and they honestly can’t be expected to provide that kind of support. While I have been vocal before about feeling like she isn’t getting enough support from time to time, I also know that is not practical or possible for them to be able to prep her in the way she needs because life is unpredictable. They can’t know if a student or a bus driver is going to be sick. They can’t tell there will be a loud noise or an upset child or some other unexpected routine change so far in advance to warn her.

We continued to log, we continued to try different things. But we’ve watched as over the last few months things have gotten worse. The logs show these episodes generally occur on average twice a week at school and are not getting better. At home and daycare we also see these episodes, but we also see more aggressive behaviours when there’s been any kind of unexpected surprise or something slightly different.

I’ve listened as my child adamantly refuses to leave the house, or begs to not go to school because she just can’t handle what is going to happen that day. I’ve watched as she’s become anxious over fires, insisting on leaving the house in -40  degree (celsius) weather, intent on practicing our ‘fire plan’ just in case. I’ve been there as she she suddenly gets lost and has no idea what to do, and begins anxiously repeating “What should I do? I don’t know what to do, maybe I should panic?”

I’ve been there as I’ve been unable to calm her in these situations and she starts to hyperventilate and in some cases even try to bang her head off the wall repeatedly; finding some inner strength that over powers me and usually ends with her lashing out at me physically. I’ve been there in the middle of the night when she wakes up crying or wakes up telling me she can’t sleep because she’s worried about something. These somethings can be random and meaningless but still so important to her at that moment that she wakes up obsessing over them; down to waking up worrying the house is on fire or thinking I am going to die.

Recently she had the opportunity to join the Mad Science Club at school, she jumped at the chance after hearing what they would be doing, as this wonderful, amazing girl of mine loves science. We were thrilled. We signed her up and went about all the prep we could. The morning of her first day she came running into my room telling me she couldn’t go to school; she couldn’t do Mad Science. She then proceeded to change her outfit three times desperate to find something to wear that would ‘make them like her.’

That’s when it hit me, her anxiety was starting to interfere with the enjoyment of her daily life. That was the flag we were told to watch out for. Suddenly the words ‘medication’ floated in my head.

We then had a doctor’s appointment for a weight check in and a follow up after an episode that landed us in the hospital on Boxing Day. The Dr. confirmed two things. 1. After a very thorough set of testing, her December episode was a severe abdominal migraine caused by the stress of the holidays, a family party and other setting events at home (Dad’s broken ankle, a basement flood) and 2. MJ’s weight dropped five pounds in five months. She eats fine at home and at daycare but comes home with nearly full lunch and snack containers more often than not.  School has been the only thing that has changed in the last five months. Our doctor asked MJ some questions, she told her that she pretends a lot when she’s at school that everything is fine, but it’s usually not. She’s worried what people will think of her even her teachers so she only tells them when something is bothering her when she’s really upset. My doctor looked at me and said I think it’s time to talk about at least trialing medication.

We had a few weeks between this appointment and the next check up with the neurologist but we were pretty sure he was going to confirm. We spoke to our psychologist and did not receive any surprise reaction to this news, just support.

When we met with the neurologist he looked at everything, listened to us and even spoke to MJ. He asked about our recent vacation. She told him she had an ok time, but she never wanted to go on vacation away from her house again. It was too hard. She worried too much and she missed her home and her bed too much. I nearly cried. We tailored our recent vacation to MJ’s tastes, we prepped, we had a social story, we found turtle after turtle for our turtle-obsessed girl and other animals.

He spoke to her about her worry and she told him honestly that she knows she shouldn’t worry so much, but that she does. She told him how she wakes up at night, she told him the things she worries about and how when she is in a situation where things aren’t planned out, she doesn’t know what to do, so she worries and thinks she needs to panic. He then asked her “What if I could help you worry less, would you like that?” I will never forget the look on her face or the words she said next.

With the widest of eyes, she looked at him and said “I would like that. I would really like that very much. Maybe I could learn to have more fun then.” I’m in tears as I write this sentence. It literally broke my heart and I felt so helpless in that moment. My sweet, sweet girl is suffering beyond belief and she knows she is and she can’t do anything about it and so far nothing we’ve tried has helped. In that moment, I became at peace with the decision to medicate my daughter for anxiety.

The decision to medicate is a very personal one and one not everyone we know will agree with. Many don’t see the side of MJ we see. For five and a half years of age she is so self aware and so aware of the world around her that she knows she is different. She desperately wants to fit in so she tries to hide everything and holds everything in until she no longer can and the moment the front door closes it usually all comes tumbling out. She’s started to show this side to her daycare as well, but even then that’s far and few between and it took close to three years before she had her first meltdown there.

Sabrina also decided to put the Monkey on medication just after the holidays. They chose to medicate for different reasons and are using a different medication than we will be. She will be following up with a blog post shortly that talks about their journey and the outcomes they’ve seen since starting the Monkey on his medication.

I understand how some may look at us and think we’re needlessly medicating, but at the end of the day, all we can do is listen to our children and to what’s in our hearts.

Hoping for an anxiety-free day, one day,

Rebecca

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