Wednesday, July 14, 2010

the dark side of singulair

I am my kids mom.

I'm also the one who said "Sure, lets try it!" and put him on a medicine without questioning it, that turned out to lead him, to lead all of us, down a dark tunnel.

Over the past nine months I have thought that my kid was at times an awful kid. That flyboy and I were awful parents. There were times I hated being a mom.

And now I cry just thinking about it.

I've been known to blog about pregnant cows who have cankles {and I mean the farm animals}, elmo underpants being flushed down the loo, and my long lasting love affair with baking soda. But now I sit here, staring at my computer debating how much of this ugly story do I tell.

It's hard to ever admit that your child isn't perfect.

It's one thing to tell stories of the funny ways they disobey us, the time dash-2 stripped down naked in the hallway and stared down flyboy for a good solid 5 mins is a classic family tale, but to tell people, be they strangers or friends, that your five year old battled with rage and aggression is hard.

To tell the world that he told his prek teacher when he got angry one day that he wanted to kill himself, has to be the hardest thing yet I've written.

But I'm going to. I'm going to tell the whole ugly tale so that everyone knows, the more people know the more people will make the connection should it happen to them.

And I don't want it to happen to anyone else.

Dash-1 is my delightfuly inqusitive 5 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 space, he runs around the house at least 3 times a week in his astronaut suite ratteling off his knowledge of space and planets.

But he also has that pesky little thing called asthma. And reflux and allergies, both seasonal and food. Since birth he's been on something, and really, nothing's ever really caused any problems. The prevacid was a life saver and goodness knows the Allegra is oh so necessary.

He was diagnoised with Asthma in late 2008, it took quite a while to get it all under control. In case you've never really dealt with it, Asthma is a bitch. Really, its like the house guest who comes, stinks up your bathroom, eats all the good food, and then never wants to leave.

After a while we got it under control but he had this constant barking cough. It. Never. Went. Away. It sounded like a really bad croup cough. Once at walmart he got into a coughing attack and everyone in line moved away {as if they weren't already going to catch something in walmart}.

His pediatrician {new to us at the time, its the military when isn't your doctor new to you?} suggested Singulair. She said to keep an eye on any "hyper" behavior.

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

Oh and in case you're wondering what the possible adverse side effects are take these in: agitation, aggressive behavior or hostility, anxiousness, depression, dream abnormalities, hallucinations, insomnia, irritability, restlessness, somnambulism, suicidal thinking and behavior (including suicide), and tremor

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

It 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.

I'm not really even sure when the side effects started. I wish I could say "on this day such and such started". I certainly wouldn't have let it drag on for nine months if I could have pin point it now would I?

But I can't. We thought it was a stage, maybe this is the terrible five's! Maybe its the school, it never seemed like a great fit. Maybe this is just him. Maybe we've done this to him someway, we've been too hard or not hard enough.

As if parenting isn't hard enough toxic side effects can be a real doozy.

Over time we were noticing some things, he was starting to cry. About everything. Asking him to do something and you would end up with a whiny litany of how he had to do everything. Never mind that all we asked of him was to show up at dinner, not back talk, and get the pee IN the toilet and not the toilet seat. And really, even the later we were flexible on.

If we forced an issue, as in "take in your own bookbag" or if he had to be corrected for something, what we could expect was a 30 minute breakdown. I'm not proud but we had been known to say to him "Dash-1 you cry more than your two younger brothers put together.".

Like I said, I'm not proud of that, but we were at our wits end.

And then there was the rage. And the aggression. And the headaches. And the pins and needles in his arms and legs. And his sleeplessness. And his blaming us for everything. And some odd ocd behavior. And self-loathing talk.

Oh and the whole I wanna kill myself in prek.

That was fun.

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.

We were starting to catch on to something. Hey it only took us nine months, he is our oldest, we'll have this parenting thing down for sure by the time dash-3 is 5.

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 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. And how awful that I felt like that.

I remembered somewhere hearing something or reading something about the nasty side effects of Singulair can have on kids. Thanks to google I got my search on 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 moment longer. I took him off the meds before I even heard back from the doctor.

When the doctor did call back she asked what side effects I was seeing, there was the obvious rage and aggression, who could miss all the crying, but there was also self-loathing talk when he was corrected, "I'm the worst, I hate myself".

Oh and the paranoia, that was fun, if he tripped over a rock, he would flip out because surely, surely, flyboy or I, or clueless dash-2, we put that rock there to get him, we did it.

Some others:
-He complained of headaches and pins and needles in his arms and legs.

-He couldn't fall asleep. Forget going to be well at 7:30, he would be up till 9 or 10 and then up for the day at 6:30 or 7. Ever see a 5 yr old with anger issues who doesn't get a lot of sleep?

-He seemed to need to have total control over things, he wasn't able to go with the flow or adjust midstream at all.

-He became even pickier about food, what he would eat before he started picking them apart eating them in a weird precise manner, he had collections of everything stashed under his bed, random things that he just had to have, everything had to be kept.

It's been two weeks. Two weeks to the day since Singulair was taken out of his pill box {yes he has a pill box} and the old dash-1 is back.

His spark is back. His eyes are clear again, rather then dark and angry. Now he helps me bring in the groceries rather then yell about how I make him do everything. Time out is a rarity rather then his place in the house. Best of all, I know that this is the real him.

I'm all for being honest on my blog. Life isn't always sunshine and roses, but I also think that somethings needn't be put out for all to see. I debated when I wrote this, but ultimately I wanted as many moms and at some point to be moms or just people who may know someone on Singulair to be aware of these potential side effects.

From talking to pharmacist, doctors, and reading the FDA sites, they say reactions like this are rare, but I wonder how rare it really is. It seems like there are a lot of parents out there with stories JUST LIKE this one. The more awareness out there the more people who will connect the dots.

If you think that your child is having problems with Singular this is a great site, http://www.parentsforsafety.org/ and it is very important to contact the FDA and file a MedWatch report so that they are aware of the side effects click here.

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.

If your kids aren't on Singulair this post can still apply to you, its taught me a very valuable lesson. I am the one responsible for what my child takes. I read those little papers they give you but it takes being more vigilant then that. More questions need to be asked of the doctors and pharmacist, more reading needs to be done. Take an active role!

If anyone has any questions about Singulair and it's side effects please feel free to email me at tryingourbest {at} yahoo.com

25 comments:

  1. My 7 year old nephew recently went through the same exact thing! We never thought it could be his medicine until my mom read something about the side effects children were having while taking it. My mom immediately called my sister-in-law and told her not to give it to him anymore.

    It's scary!!

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  2. Thank you for sharing that. I know it was hard to put all of that out there. You. Are. A. GREAT. Mom. Period.

    And it's good to know that. I'll keep this in mind when/if my child needs to be put on medication of any type. Poor Dash1!

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  3. I'm so sorry about this! Glad you got to the bottom of it finally but wow, what a rough road.

    Try not to blame yourself though. I know it's hard but you did the best you could with the information you were given.

    When Dillon was a baby he had terrible eczema and his Dr prescribed a cream called Elidel for him. I slathered that stuff on him for 18 mts- near his mouth many times while he was still on a pacifier so I'm sure he ingested some of it. I found out later that the stuff was black boxed for dangerous side effects. Want to know what it causes in some cases? CANCER. How do you think I felt about that when I found out in the middle of Dillon's chemotherapy treatment? (Not that I'm convinced that alone was what caused his cancer, but if it even contributed to it in *any way*..oh my gosh, the guilt!)

    But, I didn't know. I trusted my doctor and he never told me. We've both learned a lesson here. I never allow my kids to have any new drug now without reading all the fine print first. You're so right- We have to be proactively involved when it comes to their medical care!

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  4. I don't have kids but I had something similar to me. My dad died and I was having trouble sleeping. I was given something that was for PEOPLE COMING OFF METH/DRUG ADDICTIONS that had a possible side effect of sleeping. Or sleeplessness. So it never helped and could have been really bad. I caught it after three days on it (when it hadn't worked).

    Thanks for being "real." I think we all need to do this more to help others.

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  5. oh, gosh, i am SO sorry! i'm so glad you caught it and now your sweet little man is back. poor guy!

    don't beat yourself up - its really hard to connect those kinds of dots, but you didn't have all the info and really, what mom of littles thinks to go google all possible effects of every medicine?

    asking the doctor should include, "well hey, it MIGHT do x and y, but pry not, but i want you to be aware."

    sometimes doctors make me stabby. hence midwives and natural childbirth for me and whatnot :-p but i digress. thank you for putting this up for people to be able to help.

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  6. OMG! I cannot believe this! If you had talked with me and told me your son's symptoms, I would have told you that your son might have Asperger's and should get assessed pronto! The symptoms mirror it 100 percent (not all Aspies present the same way, but there are probably those out there that would have every single symptom).

    I know that you are beating yourself over this, but DON'T! I'm very impressed that you caught it--it would have been so easy to overlook! Count yourself lucky that you caught it and you have your boy back.

    And count yourself lucky that your son's fix was so easy--for kids who truly have autism, it's not so easy as going off a pill. Your post does raise questions if there are kids diagnosed with autism or Asperger's who don't, but are on medication that's doing this to them.

    Very powerful post. Thank you so much for posting it!

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  7. Thanks for sharing this.

    And shoot, I don't think we'll ever figure out this parenting thing in this house. Maybe by the time Junior graduates from college?

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  8. I am going to agree with Cheryl, I am so glad you caught it and you have your little man back, I can only dream that a medicine was causing my 9 year old's Aspergers, my 7 year old's ADHD, or my 3 year old's Autism. I live what you went through for 9 mths every single day with one child or all 3 of the oldest, so far so good with the baby not having anything.

    I know it was hard for you to tell this to us, but at the same time I am so glad you had the courage to tell what was going on and let everyone know of the rare but possible side effect of that medicine.

    You are an awesome Mother and Thank You.

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  9. You are a WONDERFUL mother. look at yourself in the mirror and repeat that. So many other people would just put there kid on MORE drugs to get rid of the side effects. You DID notice and you did do something about it. I'm sorry the Dr didn't tell you about all of the before hand. Its awfull what you and your family had to go through. and thank you for posting this, we all don't always have to post the sunshiny parts of our lives. Your post will help others. I'm just glad dash1 is doing better.

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  10. How scary to go through this. And to think I'm one of those parents that trusts doctors and will usually give my child what the doctor tells me to give her if she needs something, which thankfully is not too often. This opens my eyes to a whole new thing! I need to be more careful about what I give her. And not trust her doctors or mine so much. Especially military docs who do not seem to know or want to figure out what exactly is the source.

    Thank you for sharing.

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  11. I'm not a mom, but we can all tell through your writing how much you love your kids and I would never ever think that you are a bad mom. All parents, no matter how great they are, have those days where they're ready to throw in towel.

    I've never heard of Singulair having side effects like that, and I was on it for allergies/asthma from middle school through my first year of college! For me it was a great life changing medication, but I'm sorry Dash-1 had such problems with it! I'm glad he's getting back to normal now.

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  12. I actually went through the same thing with my son (he is now 6, he was 4 when we went through this) His was not quite as severe as your sons, as he never expressed suicidal thoughts, but the other symptoms were right on. He was only on it for about 2 months, before I pulled him off. And then, his dr had the nerve to tell me that Singulair won't cause symptoms such as those and it must just be something else. I had found the proof online though, so I knew better. I'm so glad you have your son back, and don't feel bad about just trying what they say, all mom's will do it at some point!

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  13. Oh my God. That is so awful. I was an allergy/asthma/reflux kid myself and I am just so grateful this wasn't available when I was little! I took it in college, and it gave me the worst insomnia ever...something that went away the day I stopped taking it. I cannot imagine those kinds of effects in a five year old and I am so glad that you have your son back.

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  14. Sometimes we can't tell what is going on with the kiddos because they just don't have the words to explain things as well as we need them to in order to fix things. There was a lot going on in that time period, and I think it was completely normal of you to run down the list of other changes and things that were going on in your own household before you thought of the medicine. It seems like it was such a gradual thing that it was hard to find a trigger.

    The point is that you found it and solved the problem. That, my dear, is what being a good parent is all about. You do the best you can with the information you have. If the information they give you is flawed, now at least you (and everyone who read this post) knows that its OK to question things and look for more info. I am so sorry that you and your family went through all of this, and I am glad that it's over now.

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  15. I think you're an amazing mom for being willing to share this story with us. And I'm so glad that Dash-1 is back to being himself!

    Thanks for sharing as well, so I know that when I am a mom, I can and will be vigilant about what my kids will be taking.

    Like d.a.r., I had allergy and asthma problems as a kid, as did both of my sisters. I outgrew the asthma, but my sisters didn't. We already know about some of the side effects from the medication that we took-- both my older sister and I are shorter than we were "expected" to be. My younger sister is taller than me, when they predicted she wouldn't be much taller than 5'. I can't help but wonder if some of the medication is the basis for the issues that I still have today.

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  16. Thank's for sharing, though I don't have kids yet, I hope to soon, it's something I'll remember to always read the papers that come with the medicine. Oh, and by the way, as far as mothering goes YOU ROCK!

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  17. You know how interested I was in this post. I am terrified that they would eventually put Landon on Singulair. The barking cough has become a nightly visitor in our house. I also had asthma growing up and I know it is just a matter of time before it shows its ugly head in our house! THanks to you, I will NOT allow him to take Singulair. They will have to find something else to stop the cough.

    I know now to become more proactive on his prescriptions. He had a bag full of oral meds sitting on our kitchen counter. We have experienced nasty side effects from his oral steroids. His eczema gets so bad that we have had so many problems with MRSA. Landon gets so mean and cries over everything.

    I read Mrs. TSgts comment on the Elidel. Landon was also put on that as a baby. Our doctor did tell us that cancer has been linked Elidel and not to put it on his face and ONLY use it when his eczema was bad. I NEVER use it. I was just too scared. I am so thankful that my doctor warned me.

    Thank you so much for posting this! Not only have you saved my son (There have been talks of putting him on it!), but you have helped 100s who may never post a comment on here. You are an exceptional mother. There was NO WAY you could've know that it was the meds this whole time! Sometimes things happen so we can make others aware so it doesn't happen to them. Your blog gets A LOT of traffic and you are taking a negative and making it into a positive! THANK YOU!

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  18. Oh, I'm so sorry. I'm glad that he's back and he's better.

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  19. Wow, I can't imagine what that must have been like for you. But I know you were doing what you thought was best for your son, no matter what the side effects were. You love your son and we all know that plain as day. I'm glad that he's better now and I appreciate you being real and putting this out there so that others can be fully armed with knowledge.

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  20. Thanks for sharing...I know it was hard for you to do so. Look at how many more people know about the effects of Singulair, and hopefully someone will be able to prevent what you've gone through...or maybe connect the dots.

    I'm so glad you can see the spark back in your little guy. :)

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  21. I'm glad you got your boy back!

    I had no idea about that drug.

    I know that I so often don't even bother to read about side effects or all the info on a drug, or at least I didn't until my mom had a crazy and horrible reaction to an antibiotic, (FYI... read up pronto if any of your family is ever put on Levaquin, Cipro or any quinolone class antibiotics.. it is rare but it can have a crazy effect on tendons).

    It's important to share information like this, I know it wasn't fun to post this about your baby but it could absolutely help someone else that is experiencing the same thing.

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  22. Thanks for sharing...I just had my 3 year old on this for about a week, and I could not stand the side effects. Hyperness, sleeplessness, aggression, and the emotional roller coaster....thankfully, my pharmacy sent me a lengthy pamphlet about the side effects and so when I read it, it clicked right away that the meds were causing it. Or else, who knows, I might have just kept on popping him that little pill that seemed to take the barking away! Thanks again for sharing!

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  23. Thank you for sharing this. It's SO important for the world to know that even though drugs do help in some instances, and can be a good thing--THEY ARE STILL DRUGS. Legal or not, drugs are drugs.

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  24. Thanks for sharing your story. You are a fabulous mommy! You did the best with the knowledge you were given, who would want to see their baby suffering with allergies? Try not to blame yourself, there's no way you could have anticipated such side effects. Heck I'm a registered nurse and had never knew that singulair could have that effect! Crazy..but thanks for sharing, and I'm glad that you have your baby back. :)

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