Wednesday, May 24, 2017

One little pink pill--our experience with Singulair

I'm only sharing this in case someone else has had a similar experience and could benefit from it. I am 100% aware that this is not the case for every single patient, but it was ours and I appreciated finding info from other parents when I needed it, so here it is....(And now that I'm proofreading before posting, that starting sentence sounds way more dramatic than it needs to. But I'm too tired to think of anything else, so it stays).

Tommy was diagnosed with asthma around age 2. He was started on Singulair to help with asthma and allergies. He is now 6 years old. We initially had no problems with Singulair and it really helped him a lot with his asthma and allergies.

However......there were some things that happened throughout the 4 years he was on it that we are just now piecing together with being associated with Singulair.

Tommy could be a very aggressive child. He's always been persistent and determined and that's just his personality, but there were some times he was flat out.....crazy, for lack of a better word. He would get mad, hit, yell and refuse to listen. And it could last for SOOOOOOO long. Like, hours long sometimes. Most of the time, he was an AWESOME kid. But whenever he would have fits like that, it was seriously like he wasn't in control of his body. It was weird--and I'm not trying to blame his bad behavior 100% on a medication. We are fully aware that some of it was just him learning boundaries and pushing them. But often times, we would talk to him when he was finally done with his fit and calmed down and he would cry and say he was so sorry and that he didn't know why he was acting that way or how to stop it. As he got older, the fits weren't as frequent, but they were still happening. He wasn't as physical, but he would still have outbursts.

He also had a horrible time falling asleep. We would put him to bed and an hour and a half later when we went to bed, he would still be awake. He woke up grumpy every morning, like he hadn't slept good. He woke up in the middle of the night several nights a week because he was scared. He had bad dreams a lot that would make him really upset. He was often anxious and worried about a lot of things that weren't rational. 

Then he started having some motor tics. He would snap his fingers over and over and over and just do some weird repetitive movements with his hands. He said he couldn't stop. He did that off and on for quite awhile and then it went away for about a year and a half. Then early this year, he developed a really bad eye tic. He would blink really hard and squeeze his eyes closed constantly. He did this probably 2-3 times a minute for what seemed like almost all day. It would get especially bad if he was looking at a book or focusing on the TV. Then he started with a vocal tic. He kept just making a low sound, kind of like he was clearing his throat. It was constant as well. We decided to keep an eye on it when it first started because his finger tics eventually went away. But it got to the point where it was bothering him and the teacher mentioned it as well. I started trying to think through what could be causing it. I eventually looked up Singulair and it's side effects and HOLY. MOSES. I found forum after forum of parents discussing what was happening to their kids after starting Singulair. I read the warnings on the labels (which I should have done in the first place, but didn't think about since he'd been on it so long and hadn't read since he was two years old). I found articles with the serious side effects listed. And what do you know....

Several websites listed aggression, mood or behavior changes, anxiety, trouble sleeping, abnormal dreams, agitation.....the list goes on. A lot of parents talked about how their child started having horrible tics and how the tics stopped once they discontinue the medication. 

So Nick and I decided to talk to our primary care doctor immediately about it to see what he thought. We took Tommy in for an appointment and told the doctor our thoughts. He seemed skeptical and said he hadn't heard of that being the case with Singulair before. He said he really thought it was more of a vision problem because of the eye blinking (and I KNEW he was going to say that--I had even had Tommy scheduled for an eye exam the day before the doctor's appointment to rule that out so the doctor couldn't blame the tics on a vision problem, but the eye doctor got sick and cancelled our appointment). However, he said that if we were concerned it was Singulair, we could go ahead and discontinue it, but to still go see the eye doctor. I called a same-day eye clinic and got Tommy seen the next afternoon. And his vision was perfect.

We stopped Singulair the night of the doctor appointment.

In about 10 days, I personally felt like we had a whole new kid. His tics started tapering off after the first few days of being off Singulair and then altogether disappeared. His attitude improved exponentially. He started falling asleep within 10 minutes of laying down. He went from waking up almost nightly and coming to our room because he was scared to sleeping PEACEFULLY through the night EVERY night.  I used to DREAD mornings because he was so difficult to wake up and SO grumpy and irritable. Now our mornings are SO much better--I feel like he just sleeps so much better and that makes him much more rested and pleasant in the mornings. It's been about 2 months now and he's still doing great! I think sometimes when I share, people are skeptical that it was really Singulair causing so many issues, but there are too many things that got better after stopping it for it to be coincidental. Honestly, I was skeptical in the beginning if it would work or not to take him off it because our doctor seemed to have no issues with Singulair. However, I felt validated when we took Tommy to an urgent care clinic over one weekend because of an ear infection. They were verifying his current medications and I told them he wasn't on Singulair anymore. The nurse asked why and when I told her all that had gone on, she said the same thing had happened with her daughter. Then the nurse practitioner came in and asked again why he stopped it. When I told HER all the info, she said something along the lines of, "Yeah, I'm not surprised. Singulair isn't something I ever prescribe because of the warnings it comes with." And while I was glad that a nurse and a nurse practitioner confirmed that Singulair can cause the issues Tommy was having, I felt frustrated that I hadn't heard it from any of the doctors we had been to since starting Singulair.

So that's why I'm sharing...because maybe somebody's kid is having these problems and they just need to hear from someone else that's had the same issues. While none of his issues were serious or life-threatening and I'm thankful for that, I get sad when I think about the fact that he probably felt out of control and didn't understand what was going on with his behavior and tics. I also feel bad thinking about the fact that his younger years probably could have been a lot better. We spent a LOT of time disciplining, struggling with behavior and meltdowns. And it was likely all because of one little pink pill...