Singulair Seizure Type, Lays Down, Seizures, Arms and Legs, Horrible Dreams
Posted over a year ago
My 6 year old son has had all of these more or less. He has been on Singulair for about 5 months. We took him off last Friday when he started having seizures. It is only now that we are connecting the things he has complained about. He is still going ... more »
My 6 year old son has had all of these more or less. He has been on Singulair for about 5 months. We took him off last Friday when he started having seizures. It is only now that we are connecting the things he has complained about. He is still going through testing but everytime a test is done it is negative. He is in perfect health. The dr.s are stumped. What happens is, he smells a wierd smell. Then he sees lights. After this he has a bad headache and becomes weak so he lays down. Shortly thereafter he stiffens and starts shaking his arms and legs while clinching his hands. He also grunts and makes a buzzing sound and appears as though he only breathes out. the dr.s say it is not seizures but movement disorder and if it is Singulair it should be out of his system within 3 days... He is still having the seizure type fits and its been a week since we took him off singulair. He is still losing his temper and having horrible dreams as well. Cat scan was normal, EEG was normal, blood work is ok, they want to do an MRI but does this sound familiar to anyone?
Tonysmom - Regarding the post from Micah. I took my son off of Singulair a little over 5 weeks ago and it took much longer than 3 days for this drug to get out of my son's system (he is 9 yrs old). Its not completely out of him yet but in 5 weeks time he is about 90% better. He developed ticks, depression, aggression, gloom and doom, frequent urination, severe headaches, always sad or angry, became psychotic and paranoid, hallucinated he saw things that wern't there and heard people "calling his name" or "talking about him" and had the most horrible and graphic nightmares nightly. He had thoughts about stabbing me and his sister and our dog. Couldn't make friends anymore and became a social outcast, etc... The list goes on. I had every test imaginable done on him. He tested normal for everything (except they found a pineal cyst during one of his MRI's). Just hang in there and just be as supportive as possible. It is going to take a while - I have read that the rule of thumb is that it takes 1/4 of the time a person has been on Singulair to get out of their system. For example if you have been on it for 4 yrs then it should take 1 yr to clear out. I personally don't think it takes that long but I will tell you this, that the 1st 2 weeks or so were pretty bad but then it starts to get better and when it does it will get better fast. There are going to be days at a time with no "symptoms" then one day out of nowhere they come back, then there gone for a longer period of time. It will go on like this until the time between "symptoms" gets longer and longer. My son still has issues here and there but compared to how bad he had gotten and the point that he is at now is a miracle. I had forgotten how enjoyable a child he really was. Again, he will get better just let it get out of his poor little body. Take care.
Micah - I would like to talk with you more about this. The drs dont believe it is the singulair because they say it should be completely out of his system. Three days to a week max. This is different for you. and encouraging for us. $$$ and still no answers. I wrote a private email to you giving you my home phone number. Please call so that my wife and I can learn a little bit about what might be happening. Thanks again for posting.
Micah
Momof1son - my son also suffered many serious side effects from singulair. he was on the singulair for 3 years. he has been off singulair for 8 weeks. he made dramatic improvements after 2 weeks. doctors do not seem to realize the side effects of this drug in some children. when his dosage was increased due to his age, the side effects amplified and it became more apparent to me there was a problem. otherwise, he might have gone on for years suffering silently. there needs to be a public awareness effort regarding this drug. no doubt many other children are suffering side effects and parents and doctors are not realizing it is the singulair. please email me at jjlhoops@alltel.net. i would be happy to share our experience with you.
Valirsik - Hi, I haven't read much about the side effects of taking Singulair but I can tell people who read this web site about what our family has experienced while taking it. My teen daughter had taken it for about 3 months for asthma and I immediately noticed that she had become extremely irritable and even angry and she even seemed as though she was not paying attention to the things that she normally would and that her listening skills diminished while on the medication. So I took her off of it and asked the Dr. for a different treatment plan and all is much better for her now (this was yrs. ago). This year (and some of last yr.), my 12 yr. old son has been on Singulair (10mg daily for about the duration of 8 months) for exercise induced asthma with intermittent chest pains brought on by the asthma. The Singulair has worked wonderfully on his asthma, keeping him in a pretty normal state asthma-wise. Then over time up until recently, we have noticed his ADHD getting much worse especially his behavior and many times daily he would have fits of anger for no apparent reason; he would have trouble perceiving the situation correctly or he would be way too sensitive to something that was said or done and he would go into a very dramatic fit of anger and make growling sounds and faces and clinch his fists and hit things or people and we didn't realise it was due to him taking Singulair so we thought we better put him on meds. for ADHD (we felt we had no choice). We tried meds. for ADHD and he had a terrible reaction to it and was vomitting along with having other reactions (hallucinations, shaking, swollen lips etc.etc.) so I took him off of everything for two weeks and once all of the allergic reactions wore off, I realised that his ADHD was better and I remembered our experience with our daughter years ago! So now his asthma symptoms are back and I have to go explain to the doctor, whether or not it will be believed, what I found out and that we need to get a replacement for the Singulair. I am just shocked because I thought it was working really well for asthma and I would not have expected any medication- unless it was hormonal replacement meds.- to cause anger fits and to worsen ADHD symptoms. Well, Singulair, it looks like you're just not for my family---- I think you had better get it together and improve the medication before you have alot of lawsuits on your tail!!!! As it is, you couldn't possibly make up the damage that you have caused countless families to endure......
This medication does work for allergies and asthma---- but the side effects make it not worth the time or money.
Andrat - Hi,
my 4 year old was on the drug for 3 months. It was the most nighmarish time for our family. A sweet, well tempered child turned into uncontrollable person - agressive, anxiety attacks, ADHD syndroms, nightmares, frequent urinating, himpossible to agree with, started having temper tantrums so bad he even didn't have as a 2 year old!!!
Once we connected the change caused by Sigulair (I wish I would have linked it earlier, still hate myself for feedin the pill every day for him for 3 months!!!!), we researched every site there was on the internet.
On this same site in some older posts there was a mom whose daughter started having saizures and now she is on drugs, as the lady put, for the rest of her life, to stop the seizures. In fact, the mom is filing a law suit againstnerck and was asking everyone to contact her who have experienced same.
To calm you down - my son stopped having the side effects caused by Singulair within 10 days or so after we stopped administrating the drug.
The drug is awful!!! Also, it shocks me at what ease doctors prescribe the medication to kids!!! They believe the drug is 'very safe', and doctors both in the US and Europe confirmed this to me. I hate to think how many aprents are out there giving the Singulair to their kids and not realizing that kids might have or have laready side effects! Especially toddles - because at some point I thought our son has some kind of late terrible twos.
Andrat - it will be surely longer than 3 days to get the damn thing out of child's system! Be patient and take care.
It is schocking the doctors (or most of them) have no idea on these side effects!!!!! When I told our doctor for the first time my suspicions on the medication, he just shook his head and thought I am nuts and just looking for a reason for my childs behaviour. But, you know, child does not turn from nicely tempered into completely out of his mind (this is exactly how he had become - like ill person on many occasions) withing 10 days. Thank God, everything is nack to normal. And I learned my lesson not to trust doctors, drugs and question everything.
Taureau - My son is also six years old. He began taking his prescription of Singulair in March 2008. He had been having some behavioral problems at school, but nothing more than not wanting to move from one center to another, getting frustrated when he was learning something new and getting mad. They have a color system of green-yellow-blue-red, with Green being best. He was remaining between green and yellow until shortly after the meds.
But not long after he began his meds, just a few days before spring break, his father's new wife had a new baby, and my son had to spend an entire week there with the newborn and all that comes with that. He has alread been subjected to go through a horrible divorce, with a "rehabilitating" meth addict as a father, multiple teacher changes (3 teachers plus subs in one year of kindergarten), and more.
After returning to school from spring break, his behavior has been increasingly declining. He has remained on blue and red, breaking out in rages throwing pencils at students, throwing chairs, extreme behavior that my son NEVER POSSESSED prior to March.
I took him to see a couselor, who then referred me to a psychologist who basically said within the first ten minutes "He needs to be medicated".
I have since stopped his Singulair. It's been about a week and his behavior has gotten somewhat better. But the damage is already done to the point that the school all but demands he be retained for kindergarten. I do not wish to have to drug my son for him to be able to go to school. He's not a child that is always going 90 miles an hour. He's always been laid back and relaxed at home.
I'm grateful that I stopped his meds as soon as a family member emailed me a news article about the Singulair and that the issues did not pregress any further than what they've already become.
Mom2ben - My son is 6 and has only been on singulair for 5 days. Last night I noticed a facial tick where he would blink his eyes 3 times quickly and then squeeze his eyes tightly closed wrinkling his nose and releasing it. He did this many times over. This morning before school I didn't see him doing it, but then after he got home from school it seemed much worse, and he was doing it a lot more. I called my doctor and he told me to stop giving him the Singulair, even though he had not heard of it causing this kind of side effect, and we would check back with him within a few days. My son has mild allergies, but was put on it because he had a hoarse sounding voice for two weeks and they thought it was due to allergies, his voice is now back to normal, but this facial tick has been terrifying me. Thanks to all of you that have posted your stories, I am feeling very relieved that it sounds like this will stop soon, and it is probably not a much more serious condition. Thank you for sharing and God Bless all your little ones.
Holnkevin - My son is 9 he was put on singulair for allergies. After taking this for 3 weeks he started crying really bad saying he is thinking of death. I sat down with him and talked to him and there was no reason for him to be filling this way so I started looking up side effects of singulair and one of them was depression so I discontinued use. it has been over a month I have had the school counselor talking to him I have taken him to another pshycologist and the only thing he can come up with is the medicine side effects. I don't know how long this is going to take to get out of his body but if I would of known there is this chance I would not have given it to my child. He cries every night and nothing I say or do helps him. It is a hard thing to deal with. You thought you was helping your child by putting them on it and you have done more damage to them. As a parent this makes you want to never use another drug for any illness.
Micah - I know how you feel. You will be happy to know that after a few months time my son (now 8) is doing great. He is 100% now of course. Just hang in there and be very loving and sensative with him. He may retain some of the fears for a while but the morbid death talk should subside as well as the night time saga. Once my boy was off the drug for a while he began to look like his old sweet self. It is a slow recovery and you may think it is permanent but it will get better. Just be patient and you will see. God bless you.
Rwg8 - Had my daughter on Singulair for 2 1/2 years, from age 4 to 6 1/2. An absolute nightmare! She had all the symptoms discussed on this forum.
It was 6mths to a year before all her side effects subsided. She is a healthy 11 year old now. Just wanted to let those experiencing the horrible side effects of this drug to know the sooner you discontinue it's use the better.
Tohlson - I have read every post and I am crying so very hard. I am going through so much of the same thing as all of you with my child. He came home from grandma and grandpa's last Sunday (Nov. 28, 2010) and he was a different child. He left for the weekend just a little on the naughty side (misbehaving here and there) and he came home on that Sunday and I had no idea who he was; he was soooo naughty, misbehaved all day. I thought it was because gma and gpa spoiled him all weekend. I have to whip him (not liteally) back into shape after being at gma and gpa's. After a few days it wasn't getting better (usually I get him back to normal a day later after being at gma's and gpa's). I then blammed it on having a brand new sister. I knew in the back of my head that it could be the singular, but I wanted to give it the benefit of a doubt. Anyway, it has been a week and 2 days and I have finally broke down and got online to see what kind of behavior issues really occur when on singular. Like I said, I knew there was a behavior side affect, but again, I wanted to give singular the benefit of a doubt; that is until I read all of these posts. I have made a decision to get him off of it right now. I lowered his dosage myself from 4mg to 2mg last Tuesday (30th), because I had a feeling it may be from singular, but didn't want to take it all away from him because it helped his allergies/asthma and what if I was wrong, what if it wasn't singular doing this to him. I would have felt horrible taking him off this med when it was helping him and it really had nothing to do with his behavior. I SHOULD HAVE JUST LISTENED TO MY MOTHERLY INSTINCTS AND GOT HIM OFF THE DAMN DRUG THE MOMENT I SEEN HIS BEHAVIOR ON THE 28TH Well, at least I did it a week and 2 days later. I just hope my good boy comes back and there's no long term affects.
Tohlson - It sounds horrible, but the only word that sums up my son right now is EVIL. It seems like he is possessed. He grawls at me, he gives me the "I'm going to hurt you" stare. He over reacts when disiplined, he throws horrible temper tantrems. I was crying the other day and he said, "good, I'm glad you're crying," before singular he would hold me and tell me everything would be okay and how much he loved me. He also told me that he wanted to put a bomb on my head so it would blow up and make me die, then laughed about it. I asked him what was wrong and he would always say his brain was doing it to him. I thought it was just a 4 y.o being silly; I believe him now. He told myself and dad that he was Bad James and the Good James was stuck on a street and he would be back in 11 minutes. He also said that he can't stop being bad and that he tries to be good but his brain won't let him. Now that I think of it, he has been like this a little after I put him back on Singular (he was on it for a month in June, but took him off of it for heart reasons, long story), just not as bad. I just realized that it has been geetting worse and worse for months. How did I not notice this before? I just thought he was starting later terrible two's. I feel horrible.
Tohlson - UPDATE: It has been a little over 24 hours since his last 2mg dose (remember I switched him from 4mg to 2mg a week ago). Anyway, so far he has went from EVIL (last night) to GOOD BOY (right now). I'm hoping he will be great by tomorrow. I'm getting my boy back:) He is happier already and so am I. I didn't have to repeat myself 80 times this morning, just twice, but that's normal. I had to put him in timeout once today and he didn't put up a fight and when he came out he said he was sorry. Yesterday by this time he would have been in time out a lot more than once, he threw huge rages and never apologized when he came out. He's not 100%, but he's already getting there. There is hope and a better life for your child once you stop this med!
Kishahartman - My Molly was put on Singulair a year and a few months ago. She had started pre-K for a few hours each day. I guess being around other kids started the whole frequent illness thing that is so common. But she seemed to have it pretty bad, going from ear infection to strep to bronchial infection, each right after another. She was put on Singulair and Claritin and Nasacort and nebulizer treatments as needed. She was on antibiotics for a year straight with little breaks in between. In December she had her tonsils and adenoids out and had tubes put in her ears. I took her off the Singulair while she recovered from the surgery and then restarted it a couple of weeks later. I am happy to report she has now gone 6wks with no fever of any kind - a cause for celebration in our house! But, she did develop a cough and was put on antibiotics for a suspected sinus infection. The ENT who did the surgery changed her from Claritin to Zyrtec but when the cough started I switched her back to Claritin (I think the Zyrtec wasn't working for her). When she developed the sinus issue a doctor in her regular doctor's office put her back on Zyrtec at night and had her still take the Claritin in the morning. She did this for a month or so (Singulair was given at night as well). Just over a week ago she has been complaining of a serious headache. It's scary when a 6yr old complains of that type of pain. I called the doc and she said to take her off the Zyrtec to see if it helps but I also took her off the Singulair - I had done a little research and was overwhelmed with what I found. Molly, over the year, has been pretty difficult. She does well at school and church but at home she is a mess - we are constantly telling her to adjust her attitude. I couldn't believe I was seeing behavioral changes could be a side effect of Singulair - it never occured to me before! She has been off both of those meds for 3 days now and the headaches persisted (went and had an xray today to look for a sinus infection). But her behavior has gotten worse - she is quick tempered and an emotional wreck. She can't control herself at all and is screaming at us and lashing out. I haven't given her a hard time because I'm convinced the Singulair is responsible for this. Does it get worse before it gets better? How long can I expect her to erupt like this before she begins to be herself again? I'm so distraught over this - my poor baby!
Lovemylittlegirl - My 2 year old has been sick ALL THE TIME, pretty much since May 2010 when I started exposing her to other children in childcare centers at the gym and sent her to a daycare in September. It was a nightmare! We started noticing how sick she would get all the time and decided to run some allergy tests and take her to ENT because she would develop fevers, sinus infection, ear infection, nasty, green mucus all the time and yes, a lot of cough and vomiting. The doctor prescribed Singulair 4mg, Flovent and Fluticasone daily. I must say, after 4 days my daughter was another person - she no longer had mucus, cough or that purple circle around her eyes. However, she was also out of the daycare for 2 weeks and looked great. All of a sudden we started to realize that 30 minutes after the Singulair, she would be acting really funny, running in circles, having ticks, tantrums and would not go to bed until about 7 hours after the medication. At night, she would stand up several times, talk silly things... it was weird. Then I decided to call her teacher and I was said that she had noticed an extreme change in her personality (like she was acting lethargic, overmedicated) - she used to be engaged in everything and talk a lot. Now she had no interest in participating of activities, was constantly sucking on her thumb and rolling her hair. Always super tired and distant. After that, I called the doc and was told to stop the drug immediately. 5 days later, she is sick again...feverish, cold symptoms... ugh it never ends. But after reading all this, I think I take it. Better than having a child with mental issues afterwards. Ps: my daughter had 2 febrile seizures in the past and to know that this medication could trigger that as well, makes me freak out. Good luck to everyone.
Momof5yearold - My son, on Singulair for 2 weeks, developed tics, head nodding, wierd twitching- he's now off the drug 10 days, but the side effects still here. He NEVER had anything like this before this drug- just a little mild allergy induced asthma. I'm so sick over all of this. How long does this drug take to leave his system? Are these damaging effect permanent. I'm so upset.
Tohlson - Give it time. But, if it is not gone in a couple weeks I would get him in. You should actually get him in now and see what they say. I hate that drug. Never again will I put my child on it. He turned into the devil when he was on it, nightmares too. Horrible drug. Should be banned. You are in my prayers .
Sandwolf2112 - My daughter is 10 years old and has been on Singulair for about 3 months. She has developed a horibble facial tic that involves grimacing and lifting her eyebrows. She has been on a 10 mg daily dose for allergies and I have noticed that she has become depressed with morbid thoughts. I have taken her off of the medicine, we are on day 3 of her being off. I am taking her to the doctor today because I am worried that she is developing Tourettes with the way she is having facial tics. She has NEVER had anysort of neurological disorder before that caused her to have muscle twitches or facial tics. The Singulair is the only thing that has changed in her routine. She is also experiencing nightmares and aggressive behavior, I.e. has NO patience whatsoever. At first I thought it could just be a hormonal thing that occurs in girls, but it's just not right. I have a gut feeling telling me it's the singulair. When I researched it, I noticed that a 10 mg dose shouldn't be given to anyone under 15. So...that leads me to believe that she has been overdosed on this medicine. What is wrong with the pharamceutical companies where they will release a drug like this without knowing the real side effects or at least disclosing them so that when your kid starts having weird symptoms, you realize it's the drug and not something worse. If I find out that it's the Singulair that is definitively causing her facial tics, I will be retaining a lawyer and filing suit against Merckk.
Kara1973 - We are experiencing the same thing with my 6 year old son. He was on Singulair last spring and for 26 days this spring. I noticed his energetic self was amplified big time and he was fresh and nasty at times which is very unlike him. 26 days into the drug he developed a facial tic. I stopped the Singulair that day after seeing these posts. The tics got worse the next 2 days and now 5 days later they are not worse or better. They are so scary and I have to pray based on your posts that it is the medicine. We see the neurologist tomorrow. His pediatrician and allergist have never heard of tics as a side effect. I feel so awful I gave this to him and feel like the doctors have failed me in their reaction to this...saying that kids get tics and it may go away.
Kara1973 - My son is off 6days now and the tics are head to toe. The neurologist today said its OCD, ADHD and tics...possibly future Tourette's. This is insane as a month ago he was a regular little boy with lots of energy and always sweet and kind. I am meeting the pediatrician next week and the nurse did say it will take about 4 weeks to get rid of the side effects. This is so sudden and has rocked our life. We still suspect the sinuglair but the neurologist dismissed the idea immediately. He was on the drug for 26 days for the second sping in a row. He was also on it as a toddler.
Momof5yearold - And if anyone if filing a lawsuit against Merck- let me know! I'm happy to share our experience to help others.
Sandwolf2112 - My daughter has been off for 15 days now and the tics are subsiding so that I hardly notice them. I asked her if they were still occuring and she said that they are almost gone and she doesn't feel she "needs" to do them anymore. She said she's feeling almost back to normal. I am noticing that her entire attitude is different now and she's back to being her regular self. I am convinced that the Singulair is responsible for her facial tics and aggressive behavior.
Kara, has your son always exhibited signs of OCD and ADHD? If not, I don't think he's SUDDENLY developed these symptoms. That medication is so aggitating that he could be having side effects from it. Also, from what I understand, they can't diagnose Tourettes until the tics (both motor and vocal) have occured for a year. I think kids develop some motor tics that go as quick as they come, just normally. I just wonder if there is any way to see if the singulair is still present in his system? Also, have you watched him sleep and see if the tics occur during sleep? My daughter did not have them during sleep. They say that is a way to tell if it is Tourettes or not. She is also sleeping much better being off of the Singulair and I think being rested is helping her tremendously. I am so sorry you're going through this. I would seek another opinion if I were you. I don't think the doctor's are too jazzed to admit that a medication could have this effect. My daughters pediatrician dismissed the very thought of it. I will HAVE to disagree with them as I am seeing the results and I'm with my kid all day, every day. Parents have a gut feeling about these things. Stick to your guns on this.
Kara1973 - Hey...while he had tendencies of those things he wis a happy go lucky boy. The energy level is just so amplified and he even started saying that he hates to look in the mirror, that he hates things, etc. some are disturbing. My son was always an energizer bunny but I believe the singulair has amplified everything and caused the tics. He was NEVER a fresh or nasty boy and at times right now he is unpredictable. After 10 days off the singulair I think I see some lessening of the tics..for now they are facial and less disturbing..no more stomach clenching and palsied hands. He pediatrician clearly thought CHoPs diagnosis was far too early and he ordered a blood test for past Strep for that PANDAS infection. He also listened as I asked about the singulair and seemed to be open to that fact that the drug causes anxiety/dressing and anxiety leads to tics. Time will tell but this is really hard. His personality at times is just edgy and nasty and that is nothing like him...he is always my good boy. He also said the ADHD diagnosis was off base as its a process and he has seem my son often enough to know he is a fidget but normal kid.
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