Anyone on Singulair? - Mothering Forums

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Old 02-14-2010, 08:35 PM - Thread Starter
 
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Connor saw his pulmo Friday. We discussed how he has so many respiratory symptoms when sick, and also how sudden changes in temperature are causing flare-ups. Several times recently his school has had to give him his inhaler because he goes from the warm bus to the cold outside air, then back into the warm classroom, and just that much exposure to the cold air triggers bronchospasms.

So the pulmo wants us to give him his inhaler right before sending him to school to try to ward off the spasms before they hit. He also gave us samples of chewable Singulair (the reason for the samples was just to try through the weekend to make sure that he will chew them, he does, so I'll call on Monday to get a script). Does anyone here take Singulair? The pulmo went into a long explanation of how it works (he's very obviously an Aspie, and sometimes when he gets into explanations like that, he stares off into space and starts scripting or as if he's reading from a textbook, and he just goes on and on...I really need to tape record him because I usually only understand every 3rd or 4th word!) I haven't spent any time researching it myself yet, so I'm just look for experiences.

We talked about using a nebulizer vs an inhaler, if this preventive use of the inhaler doesn't work, then we might switch to the nebulizer.

We also talked about prophylactic abx, it's been a constant discussion because of his immune deficiency and underlying pulmonary issues. Because of his diffuse malacia, the pulmo suspects that he might be chronically colonized with bacteria in his lungs, which is why every little illness goes respiratory quickly. A daily abx might help prevent that, but could also cause other issues (yeast overgrowth, resistant infections, etc) Because he's always come through illnesses easily enough (has only been hospitalized due to illness twice, most have been easy to treat at home) we haven't done it. Right now we're still going to hold off, but it's constantly on the radar as the next step.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 02-14-2010, 10:26 PM
 
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My son was on singulair continuously from about 23 months (whenever it came out, he literally went on it the same month) until 4 and then seasonally from 4 until no (he's almost 11), he was also on prophylactic antibiotics from about 4 months until about 18 months.

Both of them worked really well for us. He's had plenty of dramatic reactions to other meds, but singulair (and the antibiotic -- he was on augmentin) were pretty much symptom free.
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Old 02-14-2010, 11:10 PM
 
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Singulair was both a miracle drug and a nightmare drug for us. As far as DS1's asthma goes it made a dramatic improvement in his ability to handle illnesses without needing to resort to visiting the ER or using Prednisone. We have been able to dramatically decrease his medications and in some cases completely stop them.

Behaviour-wise, the Singulair was troublesome for us. He has ADHD, SPD and anxiety (and possibly ASD) so YMMV. He had a lot of nightmares (literally) and this is a well documented side effect. An adult friend who also takes it asked us if DS1 experienced them and that was when we made the connection to the medication. We also found that it just made him generally "crazy" and out of control. In adults it has been linked to depression as well.

Despite the negative side effects I don't regret using it with DS1. It truly made a huge difference for him and I'm glad we did it. I do wish that we had picked up on the fact that the behaviour was medication related earlier and possibly adjusted things or taken a break. He is off it now and it is unlikely we will put him back on it.

HTH

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Old 02-15-2010, 12:41 AM
 
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Ditto Kittynurse.

We had success w/Singulair (and Zyrtec) for ds1 for his asthma/RAD, but his behavior was awful on it. He had major trouble sleeping and w/diarrhea while on it. Removing both drugs helped...eventually we trialed him back on Singulair and the symptoms returned. He now takes the generic Zyrtec (available over the counter now).

We have a Flovent inhaler plus a ProAir (albuterol) inhaler. DS1 uses them w/a spacer, which is super important, b/c it works sooo much better (and doesn't concentrate so much meds in the back of the throat, which taste awful). He only needs to start on the Flovent when he's ill and for a few weeks afterwards, and we use the albuterol occasionally as needed. He also has a nasal spray for allergies (forget which one), which again he takes only when ill. I do think that he might need these on a regular basis, but want to stick w/the gluten free diet for a while and see if that helps.

As for neb vs. inhaler--the neb works much, much better for all of us (ds1, ds2, and me), but ds1 who's got SPD and other issues really is afraid of it. He's 4.5 and the noise freaks him out, plus he doesn't like the air blowing in his face (he doesn't like wind or a/c blowing on him either). It works so well though, that he's beginning to take an interest when he sees his brother use it. Our little one (18 mos) couldn't care less about the neb--he knows it helps, so he's pretty agreeable about it.

FWIW, Singulair is well known for behavior s/e's....but many *docs* are unaware of it!

GL!

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Old 02-15-2010, 12:51 AM
 
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Add us to the great for asthma but horrible for behavior. My daughter's anxiety was through the roof and after about a year on it, she started talking about dying all the time (she was 5) and her ped agreed that she was showing signs of depression and we took her off. The "depression" resolved within a week but more than a year later, we are still working on resolving the anxiety. She's on Advair now. Ultimately, the allergist agreed that we need to declare that Ava has an allergy to Singulair.

I know that everyone reacts differently to medication but there has been a surge in complaints about the "neuropsychiatric side effects of singulair" and the FDA even went so far as to issue an update about these side effects last summer.

Here's a link to our Singulair story - http://www.mindlessmommy.com/2009/01...epression.html

Here's another good website - the owner of the site contacted me after reading my post last year to let me know that I wasn't alone: http://www.parentsforsafety.org

HTH!
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Old 02-15-2010, 02:28 AM
 
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My ds1 11 1/2y has had great results using Singulair to treat his asthma/allergies and also help control eosinophil esophagitis. He takes the adult dose (10mg), as he is 5'2" and 110 lbs. He also takes symbicort 1 80mg puff 2x a day. I also take Singulair, prior to that I was not using a daily asthma med and felt "ok" but realized how much better I feel while taking it. We have had no behavior issues, although he has mentioned a few minor nightmares, which are unusual for him.
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Old 02-15-2010, 04:46 AM
 
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I've been taking Singulair daily for years. Each time I've tried to wean off it, four days later I start wheezing again. When I'm on it, it's like I just don't have asthma at all. For me at least it's been quite handy.
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Old 02-15-2010, 11:15 AM - Thread Starter
 
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Hmm...the dr didn't tell me anything about behavioral side effects. When did they start for your kids?

So far we don't see any, he's been a pill lately, but that's been the last several weeks, and I'm pretty sure it's just his age He was just recently introduced to "time outs" because he learned how to yell and is now YELLING (and signing, which is kind of funny, I guess he wants to make sure I REALLY understand him!) "no" to me constantly. He's also been hitting; hitting his brother is "normal" and just part of learning how to have an older brother, but he's also been hitting me, which I won't tolerate.

But all those behaviors started before he started the Singulair. He's taken it three times so far, so I'll be very watchful.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 02-15-2010, 01:19 PM
 
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Hmm...the dr didn't tell me anything about behavioral side effects. When did they start for your kids?
The fact is, they probably *won't* tell you, b/c most of them don't know. And that's pretty normal for most of these drug reactions, so please do not expect your doc to know or tell you. You must do your own research. Many parents do not figure it out--they assume it's just normal behavior changes for their child's age or personality or temperament. But we figured it out when we stopped it b/c of ds1's diarrhea...the behavior issues went away...and they returned when we tried him back on it. He was on it for a year before I figured it out--sure wish I'd figured it out sooner!

I'd have to say that it bothers me a little bit--I'm on it daily again--and have been for 6 wks now. I won't stay on it forever, but right now I need it, as I am recovering from pertussis. ugh.

GL!

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Old 02-15-2010, 11:08 PM
 
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I've been taking it for 2 years and I haven't noticed any behavioral side effects but I'm an adult and I don't have any other conditions that affect my behavior. It has been wonderful for my asthma and allergies.

Early intervention specialist and parent consultant since 2002.
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Old 02-15-2010, 11:23 PM
 
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DS 2 is on it and has been for about 3 years now. The only time we see any behavioral effects is when we couple it with xyzal in the spring to try and control his totally out of control allergies. Even then it's more of a sleepy, having a hard time concentrating, stares off into space then a true behavior problem. It just makes school a bit more difficult for him.

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Old 02-16-2010, 02:28 AM
 
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We were told to give singulair to 5.5 YO DD for cough-variant asthma, but after doing research I had some serious concerns about it. Interestingly for the last month or so her cough has been fully controlled by OTC generic Zyrtec. I was surprised that it has worked so well as it has and I'm keeping my fingers crossed that it will continue to work and that eventually we can wean her off it. But it is amazing how well it has worked and if I ever forget to give it to her, the coughing returns that night or the next day. Ugh. Zyrtec seemed like the lesser of evils in this case. Anyway, I think what asthma medicine or approach you use really depends on what the triggers are too. If you can find something else that works besides singulair, I'd try that first. I know for us singulair was our last resort.

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Old 02-16-2010, 05:27 PM
 
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My oldest DD was taking Singulair, she has recurrent bronchiolitis, possible seasonal allergies and also has a terrible nighttime cough. The cough went away, which was wonderful, but we also noticed a behavior difference, mostly very manic, crazy stuff. I don't think she napped at all the entire time she was on it. That being said, she IS 3.5, and is dropping her nap, so it's possible they weren't related. And, it's possible she was resting so well at night that she didn't NEED her nap. We took her off Singulair once winter weather hit, and she's been fine, but just this week she's started her nighttime coughing so I think we will give it another go.

We also own a nebulizer because both our girls have had to be on it so much. DD1's on Albuterol and DD2 is on Xopenex - just as needed if they get chest colds. DD2 recently got bronchiolitis and Albuterol did nothing for it, had to rush her into the doctor because her breathing was so bad, and they switched her to Xopenex. That makes me a little worried for the future. Neither DH nor I have any asthma or chest issues, I've never had a chest cold my entire life. Not sure why our daughters get them so easily.

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Old 02-16-2010, 07:35 PM - Thread Starter
 
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The pulmo called me back. I called in about the behavioral side effects because 22q kids are prone to psychiatric conditions and extreme behaviors already (Connor shows no abnormal behavior issues and the psychiatric issues usually show up in adolescence) The pulmo said that the chances of behavioral side effects is low, but when they happen they're pretty obvious, so we just need to be on the lookout for it. He also said that alternate meds are steroidal based, and we have to be very judicious with the use of steroids with him because he has Primary Immune Deficiency and they can compromise the immune system more.

So far we don't see any issues with the med, and in fact he's actually slept all night the last three nights now! I wonder if something with his breathing was effecting his sleep...

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 02-17-2010, 12:47 AM
 
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Another vote for 'worked for asthma/allergies, but caused behavioral side effects'. My DS is high functioning autistic, with seasonal and other allergies that cause respiratory issues (hospitalized a couple times in the past year). We were struggling to find a combination of allergy meds to control his symptoms. We tried Singulair and it did eliminate his coughing, sniffling/snorting and reduced his eczema. However, he had uncontrollable tantrums and screaming, got aggressive (uncharacteristic for him), biting kids at school, and was more hyperactive than usual. This occurred just a few days into his treatment. I was aware of the possibilities of this side effect, but had deliberately not told DH, to see if he observed the same behavior. DH asked me if the meds were causing DS's behavior, at which point I showed him some of the studies and printed side effect info. DH wanted to stop the meds immediately. I don't think we even made it two weeks before we stopped the meds. It's a shame because I think it worked for his allergies. When I mentioned to the doctor about the side effects, she acknowledged that she saw this aggressive behavior in 'a number' of patients. We were willing to try it because Zyrtec, Clarinex, Claritin and other allergy meds were not working for him.

We've worked with the allergist and pulminologist to come up with the current regimen of inhaled steroids (1mg Pulmicort daily via neb and Nasonex), plus antihistamines (Allegra ODT and Astelin). It's a whole lot of medicine but it has kept him out of the hospital for 9 months. And it's better than a round of oral steroids and a hospitalization, plus the potential strain on his lungs of a respiratory illness or asthma attack triggered by allergies. His recent testing showed lung capacity and function near normal! (A first for him.)

I pray that you don't experience the same side effects and that this medicine works for you. You will know quickly if it is causing problems.

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Old 02-17-2010, 11:29 AM - Thread Starter
 
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SO...he has now slept through the night for 4 nights straight, a new record for him!! He's been on Singulair for 5 days...connection???

I wonder if he was desatting or something in his sleep...

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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