Wednesday, September 1, 2010

Jack and Singulair

I've been wanting to write about our experience with Singulair for awhile now, but I've been so busy dealing with the situation that there wasn't much time left to write about it.

Last September, I became concerned about Jack's allergies. It seemed that he was always congested, sneezing, and had red, itchy eyes much of the time. His coughing had been keeping him and us awake at night off and on for a few months at that time. We had tried Claritin daily but it wasn't helping. Finally, I called Jack's pediatrician in hopes that he might do some allergy testing to identify the problem. Instead, he recommended that Jack take a combination of Singulair and Zyrtec daily. He seemed sure that if Claritin did not work, this would. For whatever reason, Randy and I didn't question him, but filled the prescription and he began taking both medications each night at bedtime.

A couple of weeks later, Randy and I heard a report about Singulair being linked to suicide in older children and teenagers. Obviously this concerned us, so we contacted Dr. A again, who assured us that these types of side effects were extremely rare and to just let him know if we noticed anything unusual in Jack's behavior. We thought that sounded reasonable.

A couple weeks after that, I forgot all about it. I blame it on being pregnant and preparing for a natural/drug free birth. It was a very busy time. That isn't an excuse, but it is the only explanation for how we failed to see the link in his later behavior.

At the beginning of January, Jack began displaying some odd behavior. When I took him to music school for the first time after Christmas Break, he broke down into tears and just did not want to go. This was the first time he had EVER cried when leaving me. He has just always been the kid to say, "see ya, Mom!" and enjoyed any and every social opportunity to the fullest. This began happening every time we took him to school. I began to think that he must not like school, the teachers must not be doing a good job, etc. Then after a few weeks, it began at the gym...then at church. We didn't know what to think. He even began saying things to me at home like, "Mommy, don't go to the store and leave me here." "Mommy, don't take Graham and Daddy and leave me!" It was heartbreaking to know that he was afraid, but we just didn't know what could cause such a fear!

Around this time, Jack also began throwing some monstrous temper tantrums. At first they were severe but manageable. But over the course of a few months, these tantrums turned into what I called, "rages." When Jack would go into one of these episodes, it did not matter what you said to him, there was no getting him out of it. He would be screaming at the top of his lungs as if he could not stop. He even said to me sometimes that he wanted to stop crying but he couldn't. I felt so helpless and because he would always snap out of these episodes, it seemed possible to me that this was normal and that it was just a discipline problem.

Lastly, the sleep problems began. Now, Jack has always been an expert sleeper. Beginning around 9 months old, he slept for 12 hours each night and we never heard a peep out of him. Even when he moved into his big boy bed, he never got up or came out of his room. Beginning in June, he all of the sudden began crying at night. We would go in his room and he wouldn't be able to explain what was wrong. He would fall back asleep. Then after a week of that, he began wanting the hall light on when he slept. Then he wanted his door open. And finally, he wasn't able to sleep at all unless one of us stayed with him in his room. He would just scream and cry if we left him.

Some other changes were so gradual that we see them now looking back, but didn't quite catch them at the time. He became disinterested in things he used to enjoy, like singing, playing on his swing set, coloring, etc. He would really only like to play with his cars and trucks. I thought this was just a phase. He periodically complained that his back hurt and that his hands felt funny. He had constant ear infections.

Finally, I decided we were beyond the point of being able to manage his behavior on our own. I didn't know if we need to see a psychiatrist or if he perhaps had a food allergy that was messing with his body chemistry, or perhaps he had some kind of mood disorder. I was scared. The pediatrician was no help. After researching online for a bit, it occurred to me to check out the drugs he was taking (DUH!!). There it was. Page after page, site after site of parents' stories about their kids and Singulair. The list of side effects is astounding:
- mood swings
- depression
- anxiety
- agitation
- hostility
- anger
- excessive worry
- abnormal fears
- hyperactivity
- insomnia
- night terrors
- suicidal thoughts
- otitis (ear infection)
- fatigue
- back cramping
- leg cramping
- parasthesia (numbness and tingling)

The list goes on and on, but does it sound familiar? We immediately took Jack off of both Singulair and Zyrtec. While things actually got worse for a few days (I think he was going through withdrawals), within a week we were noticing HUGE changes. He was beginning to sing again, to be excited about life, to want to go places, see people, do things...he was just himself. However, the side effects lingered for awhile. I would say that after a month, he was pretty much back to normal. He was sleeping through the night by himself, with the door shut by then. His "rages" are GONE. He immediately began going to the gym and church without screaming, although he was still nervous and anxious about it until about a week ago. Yesterday when we left the gym he said, "I love the gym, it is sooooo fun!" Now that is my little boy!

I cannot believe that we didn't connect the dots sooner. But, it was all very gradual up until about April or May. He began taking it in September and we didn't notice anything unusual at all until late December or early January.

I should mention that Dr. A insisted that if Jack's symptoms were not fully gone within two weeks of stopping the medicine, then that wasn't the culprit. He gave us the number for a psychiatrist. We sought a second opinion in Dr. Garrison at Mercy Edmond and he said it could take a month or more for the residual effects to go away. Children will remember their fears, nightmares, and anxieties even though they are not currently being effected by them and that can take time to "reprogram." His estimate was right on, so we'll be sticking with him.

After mentioning this to friends and posting it on facebook, I have heard of many similar stories. This is not rare. It may not happen to all children but it is certainly not rare. If you know anyone with a child on Singulair, please share this information with them. It is terrifying to know that your child has been living in a "dark place" when he is too young to vocalize it. I can't even imagine if we had put him on it sooner. We may not have known his personality well enough to notice the change. He could have been diagnosed with some kind of psychiatric disorder!

Although our experience with Singulair was an absolute nightmare, I am so very thankful that the solution was simple and that we didn't have a bigger issue on our hands. I'm thankful that I have people around me that support me and believed me when I said that I didn't think this was just who Jack was. I'm so thankful to have my amazingly sweet and loving little boy back! He is the most outgoing, social, friendly, curious little boy I know and I missed him so much for those few months!

I should also mention, we are using local honey from the farmer's market to control Jack's allergies now and it is working very well! We will certainly be more careful with drugs in the future. It is amazing how uneducated doctors are about some of these medicines.

Thanks to everyone for supporting Randy and me through this and for keeping Jack in your prayers! You have no idea how much it means to us.

Here are some links for more information: Side Effects Message Board

Parents For Safety

FDA Press Release


Julieslymediseasefight said...

wow thats crazy! I am so glad you were able to figure it out!!!

Jennifer said...

Wow, Jack is blessed to have such observant parents! You guys know him better than anyone else, and it's so great that you trusted your instincts to see him through. I am so happy for all of you that he is feeling better. And yay for a great new doctor too!

Jerrica Nichols said...

Your story brought tears to my eyes. Doctors these days are SOOO quick to diagnose and treat with RX!! It is so sad! I am thankful you were able to pinpoint this...good job mom and dad