April 2th
2008
12:55 PM
I just contacted CNN to give them a tip/heads up to our message board so that they can consider doing a news story about this situation to raise awareness. Please send them your concerns and personal story to:
http://www.cnn.com/feedback/forms/form11b.html?2
If enough of us email them, they will start to listen.
Lourdes
Mother of Julian
(severely affected by Singulair use)
Suffered severe head drops seizures, obsessive compulsive and agressive behavior and night terror and hallucinations.
Repeating Our Story:
Repeating my post from way down below - IN CASE someone's child with these head drops is looking for someone with similar symptoms. WELL - Thank God! It is so about time! My son, age 6 now was given a very grim outcome/future by two top pediatric neurologists 2 years ago when he started having not the typical seizures we associate with epilepsy (no epilepsy in our family) - his head would drop forward - like his muscle tone in his neck would collapse for a few seconds and he would literally bang his head on tables (this was when he was 3.5 yrs old) - my husband and I always knew in our heart of hearts it WAS THE SINGULAIR he had been taking for 1 year after he had a bad coughing spell the year before - not formally diagnosed with asthma - but the pediatricians insisted it would only benefit him to continue to take it. When we noticed these head drops and his eyes would at times roll back in a matter of just a second or two and he was the most loving, caring and affectionate child and turned into an aggressive and obsessive compulsive child, who also began to have HALLUCINATIONS at night - he would sit up in bed and be seeing things and scream and cry, WE JUST KNEW IT WAS THE SINGULAIR and we stopped it COLD TURKEY on Oct. 31st 2005 - against the advice of the pediatrician. We took him to a neurologist and we told him about our suspicions about the Singulair he, just like the pediatrician brushed it off, but he had an MRI and an EEG - the MRI came back normal, but the EEG was devastating!!! We were told to get ready and pray alot - that our little boy would become a vegetable and would require assisted living for the rest of his life. That he had a rare form of seizure disorder for which there was no cure. We took him then to Duke University Hospital and had him checked by the top pediatric neurologist for a second opinion - he gave him another EEG and the diagnosis from this dr. was even worst - he would probably die an early age due to the severity of his condition and that he would lose all his motor skills and regress to a vegetable. Those were the worst days of our lives. We went back home and put him on anti-seizure medication and prayed ALOT - even strangers added him to their prayer list. Well, the seizures stopped in late January 2006 and just last March of 2007 he had another EEG and it was NORMAL - he was weaned off the anti-seizure medication and is thriving and his a great kindergarten student. Doctors cannot explain how he was cured - there is just no explanation. Aside from the faith we have in God's hand in this cure, we just KNOW THAT STOPPING THE SINGULAIR saved him from further damage and probably loss of life. He is the most affectionate and caring little boy you can imagine and I do want to point out that his speech was affected in our hearts, we know it was the Singulair but in the last year his speech has improved dramatically and he is doing just fine. My husband and I have been struggling to get awareness about the dangers of Singulair and children but the doctors do not believe us. At our last appointment with the pediatric neurologist, I told him, "one day, you will see that we were right about our suspicion regarding Singulair". I do want to add that it was just too much coincidence that when he went for his first EEG in Dec. of 2005, there was another little boy in the room next door that his parents suspected Singulair as the culprit too. If anyone wants to email me and if there is anything I can do to help with my own personal testimony - please email me starwedd2@aol.com - I will be glad to share any other information. LET'S RAISE AWARENESS TOGETHER and stop more damage from occuring. Remember, my son (post is far down) almost became a vegetable and was given a grim prognosis by 2 pediatric neurologists including the top one at Duke. No cure we were told. But we always knew it was Singulair. He was cured and there is no medical explanation. Had he continued to take it he would be the vegetable they had predicted he'd become. Okay, I just emailed DATELINE NBC - please be sure to submit your children's adverse reactions story to them - here is the email address: Dateline@NBCUNI.com I also tried emailing ABC for PrimeTime and 20/20 but they use regular snail mail for story suggestions - please do your part and mail out your story to them at: To submit a story idea to one of the ABC News shows listed below, write a single page letter including your name, phone number, and address. Include photocopies of backup information. On the outside of the envelope, write "Story Idea." If a producer is interested in your story, he/she will contact you. Here are the show addresses: 20/20 147 Columbus Avenue New York, NY 10023 Primetime 147 Columbus Avenue New York, NY 10023 Together we will do something to help avoid more tragedies I went ahead and reported our experience online to the FDA: https://www.accessdata.fda.gov/scripts/medwatch/medwatch_online.cfm
-- By lulycelsa | Reply | (1) replies | Private Message me
March 29th
2008
9:24 AM
Wow. It is like I am reading about my son in every one of these entries. The emotional issues - just crying at the drop of a hat, being scared of the smallest issues and being very clingy. We always just figured he was a sensitive kid My son has been on Singular since he was 4-1/2 (he is now 8). I have always insisted it was a miracle drug. He could finally go outside and play and not be bothered by his allergies. So, he needs to be on something similar to this drug for that. Any suggestions? We saw the news report Thursday night and immediately called the allergist on Friday. We are seeing them on Tuesday.
-- By molly4968 | Reply | (1) replies | Private Message me
March 28th
2008
11:57 PM
READ THIS:
I'm posting this again for the sanity of the concerned parents on this board to let you know you're not alone:
My 5 year old son was diagnosed with mild asthma and put on Singulair. Within a few months he began having uncontrollable fits of rage, displayed self-loathing behavior, had night terrors, and was inconsolable during these episodes. He became very destructive and was a danger to himself and our family. He even talked about killing himself and would say things like "I don''t want to be in this life anymore" and "I want to kill myself". He would threaten my wife and his siblings and told them he wanted to kill them. It was a truly terrifying experience. Our pediatrician was clueless to these side affects and recommended we have our child go through a psychological evaluation. I knew this was not my child''s normal behavior so I searched the internet for Singulair side affects and found some message boards where parents just like myself were telling their stories of their children''s aggressive behavior. I immediately took my son off the drug and within a couple days he was back to his normal self. He told us that he no longer has "that feeling inside of him". Five year old children don''t even know what suicide is and to see my son talk like this was extremely frightening. He is a sweet, intelligent, loving boy who had never exhibited behavior like this until he went on Singulair. We have not seen this behavior after taking him off the drug.
-- By matthewct1 | Reply | (6) replies | Private Message me
March 28th
2008
8:53 PM
My 5 year old son was diagnosed with mild asthma and put on Singulair. Within a few months he began having uncontrollable fits of rage, displayed self-loathing behavior, had night terrors, and was inconsolable during these episodes. He became very destructive and was a danger to himself and our family. He even talked about killing himself and would say things like "I don''t want to be in this life anymore" and "I want to kill myself". He would threaten my wife and his siblings and told them he wanted to kill them. It was a truly terrifying experience. Our pediatrician was clueless to these side affects and recommended we have our child go through a psychological evaluation. I knew this was not my child''s normal behavior so I searched the internet for Singulair side affects and found some message boards where parents just like myself were telling their stories of their children''s aggressive behavior. I immediately took my son off the drug and within a couple days he was back to his normal self. He told us that he no longer has "that feeling inside of him". Five year old children don''t even know what suicide is and to see my son talk like this was extremely frightening. He is a sweet, intelligent, loving boy who had never exhibited behavior like this until he went on Singulair. We have not seen this behavior after taking him off the drug.
-- By matthewct1 | Reply | (1) replies | Private Message me
March 27th
2008
10:15 PM
I cannot believe this. I just sat here and cried. Timing is impeccable on this. I had just unplugged my 8 year-old sons tv, and yelled at him for misbehaving. He has gotten several notices over the last few months from school about disrespectful, violent and aggressive behavior. I didn't know what was going on with him. That just wasn't like him at all. Now, I know. He had been taking Singulair since he was about three years old for allergies and asthma caused my allergies. He really only took it seasonally, but this year, he's taking it for about five months without a break, and I would have never linked the terrible behavior to the medication because I was NEVER warned of these types of side effects. Why was this never put out there for people? This is my child, whom I love more than life itself, and I have punished him, yelled at him, grounded him, all for something that he possibly could not control, and I cannot take any of that back. How can this be happening? And to hear that the drug maker wants nine months before pulling off the shelves for testing? Seriously? I am just so shocked, and he will never take another Singulair again, regardless of what those greedy bastards say can be proven or not proven. My child's health and mental stability are more important that they seem to think it is. What kind of long term effects can this have? I just feel so uninformed, and when it comes to drugs ESPECIALLY for children, why has this not been addressed? I am so glad that people are posting their experiences, because to know that we are not the only ones who have been going through this, and to know that we can now correct the situation makes this just a little easier to deal with.
-- By rtaase11 | Reply | (1) replies | Private Message me
April 19th
2007
11:43 AM
My daughter was born with a breathing condition(never pinpointed) that kept her in intensive care for almost 2 weeks. As she grew she seemed ok. Then pneumonia appeared at 1 1/2yrs. and she has been hospitalized 5 times since with various forms of pneumonia(walking, single, double) since. We moved from the city to the 'burbs and all seemed well. She would take the occasional Xopenex(Abuterol made her nuts). To make a long story short, after 2 years in the new house new symptoms appeared. All of a sudden there was coughing at night that would not stop. We went to a new Dr. and he prescribed Singulair. This was October of '06. Soon thereafter, the behavior began to get worse. Tantrums and extreme moodiness began to become more frequent and her school work began to suffer. We've just been informed that the school is recommending holding her back. When I talked to the teacher, she indicated that my daughter has gotten "worse" since Christmas. Teacher also does not believe that there are any learning disabilities. I know that it is the Singulair. She has the constant stomach ache and no appetite to speak of. All of the professionals are assurring me that Singulair is safe. She is not on this nasty drug any longer... Waiting for changes...
-- By stephendkirk | Reply | (1) replies | Private Message me
February 13th
2007
12:03 PM
My 32 m.o. daughter had a mucous-y cough for about a year. Then I noticed that her cough was worse when she lays down at night, and after jumping on the trampoline. I (her mom) have asthma, and it runs all through our family. After a bout of the flu early January, where she was hopitalized for 2 days, I talked with her pediatrician about the "asthma-like" qualities she is showing. Dr. prescribed zyrtec along with 4 mg of singulair at bedtime, with a follow up 3 weeks later. Also prescribed ventolin with a spacer, which we havent had to use yet. (I use inhalers regularly.) We followed up with the Dr, and I told her that her cough is pretty much gone now. So we stopped the zyrtec and are on singulair for a few months. The thing is, I have noticed that she is more aggressive and more irritable than her normal self. I dont know whether to attribute it to the "terrible-two's" or the new medicine. She always wants to hit someone or something. And yes, I notice that her night-time sleep patterns are different. She falls asleep great, but she wakes up in the middle of the night (3 or 4 am) and has a hard time gonig back to sleep. It is the agressive behavior that has me worried, because she does not want to listen or be told what to do, and she is hitting other kids at her pre-school. After reading the comments frmo other Moms below, I gues it acutally could be the medicine and not the terrible-two's!
-- By amb67 | Reply | Private Message me
February 6th
2007
2:30 PM
Our one and a half year old son was put on this drug for ear infection and within one day it was like Dr. Jeckyl and Mr. Hyde. He had constant diarrhea, stomach cramping, waking up in the middle of the night screaming. But most disturbing was the behavior changes of just screaming and yelling all the time and the agressive behavior, even toward himself(biting his hand). It was like someone took our soft spoken, easy going happy son away from us. He is still having stomach problems and waking up at night. His eating has slowed way down. I will never give this drug to him again.
-- By jschuhmail | Reply | Private Message me
July 26th
2006
9:37 AM
I am so glad to find this site. My 3 almost 4 year old has shown extremely agressive behavior and temper tantrums since she has been on this med (4-6 weeks) She never acted like this before, and has been giving her daycare fits. Her doctor prescribed this med for her allergies which I thought was strange with all the other medications out there. We are taking her off of it immediately. Thanks for all the good info.
-- By donnajay6 | Reply | Private Message me
January 21th
2006
12:02 AM
I posted a long time ago, but have had some updates since then. 3 year old son with asthma/allergies on Singulair, having nightmares and agressive behavior. Had been on it before when he was one year old with no probs. Called pharmacist and said to read package insert. Sure enough, "uncommon" side effects included nightmares (can't think of the exact wording they used but close enough) and agressiveness. Those cautions did not use to be in the insert and was placed in there I believe in 2004 according to pharmacist. Please read the package insert for possible side effects. This really is a miracle drug, have taken it myself, but side effects are too extreme to warrant continued use for my and my son.
-- By jameswife99 | Reply | Private Message me
July 28th
2005
5:10 AM
My husband and I had the pleasure of raising a beautiful, very smart grandson for the past 3 and a half years. Hunter had CP and epilepsy. Most of his siezures would last at least an hour which meant ER visits regularly. He took Keppra and Carbatrol and experienced few side effects from these medications,but still had siesures about once a month. Then he started having siezures more often. He was put on Topamax as an add on drug. He built up slowly to 150 Mg per day split into twice a day doses and still had two more siezures so 50 more Mg was added. During the time Hunter was on Topamax he suffered many side effects such as slurred speach, uncoordination, wetting his pants, agressive behavior, and lathargic. He was 5 years old and to young to discribe some of his symptoms. Everyone noticed that he was not the same child as he was before taking Topamax. We were very concerned and did discuss our concerns with his doctors. They felt that it was his body getting adjusted to the Topamax and that the symptoms would lesson when his systom leveled out. I did read that Topamax may cause nose bleeds and if he had a nose bleed to take him to his doctor. He had no nose bleeds till the morning of July 6,2005. I always slept with him because most of his siezures occured at night. It was just habbit for me to check him often if I woke up before he did. On the morning of July 6,2005, I got up at 6:A.M. made sure Hunter was okey and was getting things together for a trip to Magic Springs, an amusement park. Hunter was so excited the night before and all he could talk about was the fun he was going to have at Magic Springs. At 7:00 A.M. I checked on him. He was still asleep and okey. Again at 7:30 A.M. he was checked and was still sleeping and was okey. Twenty minutes later I went in his room to wake him and get him dressed for our trip. Hunter was laying at the foot of his bed face down in a pool of blood. When I turned him over blood was coming out of his nose massively, his face was blue. 911 was called, I did CPR on him till they got to our home, the EMT's did CPR and transported him to the ER. The doctors in ER tried to save him also. Hunter died July6,2005. When Hunter had his first nose bleed it was so massive no one could save him.
-- By conniedougan | Reply | (1) replies | Private Message me
January 10th
2004
3:44 PM
My 3 1/2 year son has been on Singulair since he was about 1 1/2 years old for asthma and allegeries. In the last year, he has had difficulty sleeping, talks about monsters when he wakes up and has become very agressive. He was to the point that we consulted a child psychologist regarding his agressive behavior. I read a doctor's advice column, in which an adult stated that she liked the effects of Singulair for her asthma and allergies, but couldn't stand the nightmares associated with Singulair. I had no idea that a side effect of Singulair was nightmares, until I read this article. With this information, I consulted with my son's doctor and took him off Singulair. My son has been off Singulair for 3 weeks and he is no longer agressive, sleeps peacefully at night and has his adorable personality back. PLEASE PASS THIS INFORMATION ON TO ANYONE THAT HAS A CHILD ON SINGULAIR AND IS EXPERIENCING BEHAVIORAL OR SLEEPING PROBLEMS.
-- By dannyboy94 | Reply | Private Message me
January 15th
2009
10:37 AM
I want to post this because this site has given me good perspective on this Rx and side effects experienced by others; its good to know I am not alone. As far as an agenda, I have none, in fact I was all for the Singulair initially, because it seemed to be a good alternative to inhaled steriods which I had read could interfere with normal growth. My son, 4 yrs. old, with a diagnosis of Asthma, started Singulair about 2 weeks ago. Asthma seems to have been improved by Singulair. Within a couple days of starting it, though, he reported vivid (but not nightmare-ish) dreams, a week later he dropped his afternoon nap, which we were expecting to happen eventually, so didn't think much of it. He is a wild child generally, but we also noticed an uptick in bad and aggressive behavior within a day or two of starting the Singulair; we really clamped down on him though, so that effect has been somewhat muted. He has always occasionally complained of indigestion stomach aches, but these complaints have increased to several times a day in the last week, also complain of lower abdominal pain which he says is "different" than his earlier indigestion stomach aches. Last week or so he's been up late at night, had trouble going to sleep, looks a little pale with dark circles under his eyes ("he's becoming a Goth" I joked with my wife). Last night he got out of bed late, appeared disoriented and seemed to be half awake, half asleep. He was talking, but not making sense and seemed to be upset and/or confused, but when pressed he assurred me nothing was wrong and nothing hurt--put him back to bed and this morning he remembers getting up, but also keeps telling me he had a "weird" (not scarry) dream and that he keeps seeing it while he's awake. Luckily this weird dream was not scarry for him, but he was clearly a little freaked out by seeing it again this morning. He seemed o.k. heading off to preschool, but we are taking him off the Singulair as a precaution. My advice to anyone else out there seeing similar symptoms in their kids is to go with your gut -- I always tell people that a Doctor's job is to tell you the odds, like only 1 in 500 or 1 in 1000 kids will have a certain reaction, or condition, or illness, it is the parents' job to be sure that their kid is not that 1. So I'm taking my kid off the Singulair because I think he may be that 1 kid who experiences these unusual side-effects. How wide spread they are, I have no idea. I will get on my soapbox and say I think it's time for the FDA to require drug companies to conduct long and short term clinical studies on kids for any drug that will be prescribed to kids--entrusting our childrens' health and well being to a drug company's own short term study conducted on fully developed adults is foolish and insane.
-- By chwaterman | Reply | (3) replies | Private Message me