Tuesday, July 12, 2011

More awareness on the affects of Singulair

Today I am speaking at a Legislative Briefing in DC about the "Cody Miller Safe Prescription Initiative" to allow the FDA more regulatory authority for the information given to patients from pharmaceutical companies.  After all, what good is the patient hand out that they give you if all the side effects aren't even listed?  How is it possible to make an informed decision if you don't have all the information?

I've written before about the hell and back that dash-1 went thru while he was on Singulair, we are lucky compared to Cody Miller's family, he took his own life while taking Singulair.

More dots need to be connected about Singulair and the very real, very scary side effects of a seemingly normal medicine.  Below are my comments, that hopefully, if I don't choke on my words, I'll read out loud tomorrow.

Please, if you know people who have young kids or teens with asthma who are taking Singulair, please pass along this info to them.  Should you or someone you know have an adverse reaction to Singulair you should check out Parents United For Pharmaceutical Safety at http://www.parentsforsafety.org/ and report the reactions with the FDA.

Robert is my delightfully inquisitive 6 yr old. He has bright blue eyes, a smile that reveals his missing front tooth, and blond hair that is almost always in a high and tight. He is brilliant, but then again I'm his mom, he is obsessed with science and space, he loves to read and has thrived and exceeded our expectations in Kindergarten.

It's hard to ever admit that your child isn't perfect, but its really hard to talk about how your six year old battled with rage, aggression, and suicidal thoughts.

But the more people know, the more people will make the connection should it happen to them, and I don't want what happened to my son, what happened to our family,  to happen to anyone else.

Rob's been on medicine since birth, he has reflux and severe allergies, he's never had a problem with medicines.  In late 2008 he was diagnosed with Asthma and it took us quite a while to get it under control. Even after it was under control he had a constant barking cough. That NEVER went away. In October of 2009, when Rob was 4, his pediatrician {new to us at the time, but in the military your doctor is often new to you} suggested Singulair. In passing she said to keep an eye on any "slightly hyper" behavior.

I was prepared to watch for him running around the room in circles, not for rage and aggression.

To say that I didn't know what I was getting into would be the understatement of the year.

Over the nine months that he took Singulair, I must admit that I had times where I thought that my kid was an awful kid, that my husband and I were awful parents, something was happening to my little boy.  Those 9 months from October to June were filled with some of the lowest lows for us as a family. 

Singulair took the cough away. He was silent. He wasn't waking up at night in a fit of coughs. He didn't sound like a barking seal. People weren't giving us nasty looks for taking a sick kid out. He was quiet.

I thought it was perfect. And then came the side effects, that wrecked havoc on my son and disrupted our family life for months.

I'm not really even sure when the side effects started. I wish I could say "on this day such and such started". Maybe had it just started full blown on a certain day I wouldn't have let it drag on for nine months.

We thought it was a stage, maybe this is the terrible five's! Maybe it was his preschool, maybe this is just him. Maybe we've done this to him someway, we've been too hard or not hard enough. Maybe the fact that dad is a Marine and away for so much was playing a role.

As if parenting isn't hard enough toxic side effects can really make you doubt yourself.

Over time we were noticing some things, he was starting to cry. About everything and for long periods of time. Asking him to do something and you would end up with a 45 minute, end of the world, rolling on the floor, screaming, high intensity breakdown.

Daily he was complaining of headaches in which he would lay on the couch in pain and rock back and forth.  Another daily complaint was a pinching pins and needles in his arms and legs, he would pull on his limbs to try to ease the feeling.  He couldn't sleep at night, he was often awake until 11 and then back awake at 2 am, screaming, as you can imagine, the entire family started to lose sleep. 

He began blaming us for everything, if it was raining it was our fault and the 45 min breakdown would follow. Odd ocd behavior began creeping in, he wouldn't wear shirts with buttons, he couldn't have the tag on his underwear touch him, he didn't like certain foods anymore, foods he had lived on, he began collecting everything, piles of trash were under his bed. 

He started to have problems with his memory. I would ask him a question and half way thru the answer he would forget what he was saying, midstream. He had been writing his name for a year and now he had problems remembering how to spell his own name.  And self-loathing talk, he would get upset and talk about not wanting to exist, wanting his world to go black, hoping he could just dissapear, he would tell us "I'm the worst, I hate myself." You could tell that he wasn't just saying it, that he really felt it. Terrifying things to hear from your child. 

One of my greatest fears is that had he been older when he was on Singulair that he would have acted on these suicidal thoughts, that I would be here telling you about my beautiful child that was no longer with us.  

These certainly weren't the whole of him, he was still a bright eyed little boy underneath it all, it was just starting to be more and more about breakdowns, crying, yelling, hitting, fighting and less of the old him. He was losing his spark. His spark was being replaced with rage and aggression. If you corrected him his eyes would become slits, his fist would ball up, his whole body would go tense.

The breaking point came as the talk of not wanting to exist started happening more and more and as he had started to lash out at his younger brother.  I no longer felt comfortable letting the two of them play in a room alone.  More than once he had lunged at his than 3 yr old brother with such intensity and anger that I really feared for his safety.

My days were spent walking on eggshells. I was tired of the up and downs of our days. The good times were great but the downs were so very down. There were days I didn't know how I could go on. If this is what parenting was I wasn't sure I was cut out for it. 

During much of these nine months my husband, who is a United States Marine, was away from home. Towards the end of the nine month period I was on the phone daily with him or my mother, often in tears. I was nearing my own personal breaking point.  I had actually discussed with my mother that such a disruption in the house wasn't fair to our two other boys, that clearly I couldn't parent him, that perhaps he should live with my parents for a little bit of time. 

Can you imagine how bad it was that I could even think of sending my little boy away?

I remembered somewhere hearing something or reading something about the nasty side effects of Singulair can have on kids. Thanks to google I did some searching and was shocked. Reading about other parent's experiences on it was like reading something I had written about my own son.


In that moment I decided this wasn't going on one day longer, I had let him down by giving him that pill every morning, I wasn't putting him thru this anymore. I took him off the meds before I even heard back from the doctor.

I wish I had been told more by the doctor. I wish this pill came with informed consent, I wish its dangers were spelled out very clearly. The school year would have been different, our home life would have been different, the past nine months would have most certainly been different. But it didn't come with any of that. 

All the bottle said was chew before swallowing. At least they were concerned with his choking, never mind his depression.

I am the one responsible for what my child takes, but more needs to be done. 

Within days the side effects were clearing up.  Several months later and my son was back. His spark is back. His eyes are clear again, rather then dark and angry. Teachers and other parents are telling us how polite he is, his report card even called him a model student. Best of all, I know that this is the real him.

14 comments:

  1. I was forwarded your article from a friend of mine who just happened to see it on another blog. I am SO thankful I found this. I don't know what to say but, "Wow", maybe my husband and I aren't crazy about our 4 year old son's raging behavior since he has been on Singulair. We stopped giving it to him last night! Thank you for standing up for children everywhere and helping to hold pharmaceutical companies accountable! Please let us know how it goes!

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  2. I hope this results in change! I haven't had an experience like this, but as long as this kind of thing happens, I know it could be us someday with some other kind of medicine. Bravo to you for standing up and doing something.

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  3. Kudos to you for standing up and hopefully saving the lives of many kids just by doing this. I know you aren't totally back to yourself after your surgery, but you are fan-freakin-tastic! And awesome!

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  4. Good luck today. I really hope a change is made very soon.

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  5. GOOD LUCK!! I am SO happy that the cause was found before something awful did happen, but it should not have gone on that long, you should have been informed about this! I hope this brings change, and awareness!!! You're doing a great thing!

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  6. I can't begin to imagine. Clearly, the pharmaceutical companies need to do more research and be more honest. And it's a good reminder as parents to read the fine print. I too often just accept medicines as safe and move on. On the flip side, I've been taking Singulair myself since first diagnosed with asthma at age 20. It has been a blessing to me, but that of course, does not make it okay for children. Their little bodies are still developing and I do hope & pray that the pharmaceutical companies take effects like this seriously. We need good medicines for our kids, but safe ones.

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  7. So amazing of you to get involved in this, I know you are such a busy woman already with your three little ones. Just seeing that first comment, you are already helping other kids and families. I would like spread the word about this via Facebook, do you have a good online resources or article that would be a good link to share?

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  8. Oh my goodness. I remember seeing you talk about this from time to time but I had no idea. I'm so glad you were able to recover your beautiful son's personality. What a good reminder that doctors can have good intentions but personal research and intuition are irreplaceable. I'm forwarding this to everyone I know with young children.

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  9. My doctor has prescribed this medication for my allergies, since nothing was working to relieve my symptoms. But, after reading the side effects, I have not been taking it as prescribed. My doctor wants me to take it everyday, but I refuse to. I don't want to over medicate my body by taking this everyday as prescribed. So, I have been taking it only when my allergy symptoms rear its ugly head. I cannot believe that they allow a drug out there that causes such mental disturbances. I think I would rather suffer with my allergies vs taking it and possibly becoming suicidal, depressed, aggressive, etc.

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  10. Wow. I can't believe all that happened to him. I'm so glad you were able to find out what the cause was before something happened. That said, reading this made me wonder about my own behavior as a teenager. I was diagnosed with asthma when I was 10. When I was around 16, my doctor put me on Advair and then on Singulair. I took the Advair as I was supposed to, but I rarely took the Singulair because it made me feel weird. That was about 9 years ago, so I don't remember exactly what I was feeling. After reading this, I'm REALLY glad I decided to stop taking it. I have enough issues after having taken Advair for so long. I can't imagine... And I'm glad you're going to DC to speak about this. You're right - the FDA needs to give patients and parents better knowledge about medications.

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  11. OMG, This breaks my heart. Thank you for bringing this to light and good luck at the briefing. Can i share this on my Bog and Facebook Page...

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  12. I am so so glad that you stopped giving your son this medication and that you feel so strongly about it to do something.

    Thank you for being brave, and strong, and smart, and willing to stand up all the Dash-1s.

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  13. Wow...what a story. Bless your heart... Thank you for sharing this. As a teacher, I sometimes see behaviors just like you described, and the parents and I can be at a loss as what to do...now I can at least ask if they are taking Singulair.

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  14. My 7 yr. old was just prescribed this med. and I am so glad that I did some research on it BEFORE starting it cause I came across your story and a couple others and will NOT be giving this to him.. I DONT THINK SO.. Thank you for posting your story..

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