August 22th
2008
8:54 PM
My son, who just turned 14 this month, was on Singulair for over 2 years.
He was diagnosed with reactive airway disease and possibly Asthma--and prescribed this awful drug-even back in 2004. The doctor said how wonderful this med was and prevents any further attacks.. So, for 2 years-every night, he took this mood altering, destructive drug. He lost all interest in school, his athletics-soccer, skateboarding, biking..in fact became almost a vacant , very unhappy, child-had stomach aches, joint pains and reflux--why--I brought him to the doctor and Pediatric center so frequently--all they kept saying his --his asthma is better, much be other issues...Even after the March 2008 suicide--his doctor said-that is just an isolated incident-just monitor him--It is a good drug. Right, month by month his behavior escalated to wanting to die, no reason to go to school-he said he was stupid and a failure and why don't I understand there is no reason to his life. A usually happy fun-loving boy -my son- didn't want to live. Nothing made him happy-I started to believe what the doctors said--maybe something or someone at school (bully, pedophile??) caused this change. Terrible nightmares and vivid dreams...Until this past July, I asked him want to go to the library for some books or dvd's...he went ballistic-threw everything off his computer desk and tried to break his chair. He is not an aggressive boy but this behavior was becoming a daily issue. Along with everything flying off his table, was his bottle of Singulair pills. It then dawned on me..I have been poisoning my only son. The child I know and love and gave birth to returned within a few days--although I am worried sick about further asthma attacks --all the doctors can prescribe is a steroid drug-asthmex or Pulmicort.. I cannot understand nor comprehend why this drug is being prescribed for children and young adults. The guilt I live with is terrible as my son has lost 2 years of his life--
and thought there was something really wrong with him-At least we woke up---in time--how about some other parents..thinking it's just normal adolescent behavior for their child or their fault???
August 19th
2008
11:56 PM
My 6 year old was prescribed singular for allergy relief. After 1 night of taking it he woke up with leg pain. Not too severe, just sore so I thought they were just growing pains. After the 2nd night of the medicine he woke up and his legs hurt so badly that he has a very difficult time walking. We took him off the medice. After the 3rd night with no medication he woke up with a little leg pain, but not anything like the previous day. After the 4th night he was fine and has been fine every since. It had to be the singular. My pediatrician did not have any other children that had had this type of reaction, but said that we should not give it to him again. He said that we should listen to our bodies, and if we don't feel right after medication then we should stop taking it. It was scary for my little boy
-- By bluebunnylala | Reply | Send Private Mail
July 28th
2008
12:16 PM
I have just come across this website and I am so upset. My 10 year old daughter has been on Singulair for 8 years. Since she was 2 years old. About 3 years ago I spoke to her pediatrician about the fact that I was concerned that she had been on it for so long and about the possible long term side effects. She brushed me off and told me that there weren't any.
Over the years she has complained often of stomach aches and pains. We even had her on Miralax for a couple years because the Dr. was sure it was constipation. The last couple of years she has been complaining of leg cramps and I sort of brushed that off as "growing pains."
She is extremely emotional and has serious mood swings. I even asked her Dr. about ADD and she said it was just her personality. I am almost in tears typing this because I have no way of knowing if her actions are because of her age, her personality, or because of this medication. She has been on it for so long that I wouldn't know what her personality would be if she had never taken it.
Her asthma tends to be seasonal and she hasn't had an attack in years. I took her off the meds as soon as I read about the disturbing side effects that hit too close to home. I am upset that her Dr. never warned me about these side effects (that were not listed on the label) and didn't take my concerns seriously.
She is very small for her age and I was concerned that the medication may have stunted her growth....little did I know there were so many other dangerous side effects. I just hope and pray that she doesn't suffer any long term negative effects from this medication that I have given her, thinking I was helping her.
-- By casibugg | Reply | (2) replies | Send Private Mail
July 11th
2008
10:25 AM
My 7 year old son has been on and off singulair for a couple of years. He has been on it again for a month and we have noticed very aggressive behavior. He gets angry easily, nasty and into these rages where he actually is hitting me and slamming doors (even breaking the jam on his bedroom door!), just because he is not allowed to do something! After finding this site, I called the doctor(who of course did not call back yet) and took him off of the singulair. I am hoping the behavior gets better!
-- By miamax13 | Reply | (2) replies | Send Private Mail
June 26th
2008
1:35 PM
Update. The count down is on. Next week on Tues my 6yr old son will be having his tonsils removed. Only 5 months after the adenoids were removed. I am hoping once this is over the improvements I have seen will just get better! His sinus drained in April, 9 days after coming off Singulair after battling sinus infections for entire year or more actually. When his sinus drained the infection went right into the tonsils and he has had tonsillitis ever since. One thing I wanted to share is that around the same time he came off singulair we started omega 3 supplement. Both my son and I stopped Singulair the same day. We both started the Omega 3. Last week I had to stop his dose because of the upcoming surgery because it can thin the blood. I noticed this last week his nasal allergies kicked in. He did pretty good through this allergy season and wasn't on any meds a lot of the days. I hardly had to take allergy meds this time around also. Im allergic to trees/grass and this is usually my bad time. I really feel the omega 3 has helped a lot!!! I am also waiting to get the results of his blood tests to see if his cholesterol has gone down. Just wanted to share!
-- By sp2008 | Reply | (6) replies | Send Private Mail
June 10th
2008
5:55 PM
PRAISE GOD for all of the stories shared on this site. And I've only read page one. My husband called me back today to say that he "googled" Singulair and found some interesting things (to say the least). While we were on the phone, my three-year-old was in the throes of another meltdown, kicking me, hitting me, throwing whatever he could get his hands on. My older two boys, 8 and 12, were ordered, once again, to lock themselves in their rooms to avoid being hurt by him. He will throw stuff, bite, hit, kick, and, at times, spit on us. This disturbing behavior is rather constant lately. He is like a mad man. Very scary.
Caleb has been on Singulair since about age 1, when he was diagnosed with chronic sinusitis and allergic rhinitis. Unfortunately, we initially equated his rages with the onset of "terrible two's" and dismissed his behavior to a chorus of "oh, he's just a boy!" My husband felt, at times, that I was just not disciplining him properly. I intuitively knew, having raised two other boys, that this behavior was abnormal, even for severe tantrums. We received a variety of suggestions from his pediatrician, caregivers, and grandparents, all to no avail. We have several calm days but things always deteriorate back to insanity. He is VERY unpredictable.
Last Thanksgiving, Caleb (age 3) was kicked out of his daycare setting for biting and hitting. Once I witnessed him run as fast as he could into a group of playing children, falling on them, kicking them. He would walk up to sweet little girls half his size and push them down as hard as he could. It was a nightmare. My husband had to take 3 weeks of leave to stay home with him while we prayed and searched for new care. We had him evaluated and he was staffed into the "developmentally delayed" program in our school district (for poor adaptive skills and personal/social behaviors). We recently had his tonsils removed, hoping that some of the sinusitis symptoms and behaviors would improve. They really haven't. This past week we have been looking into the Feingold diet. We have been PRAYING for answers. The last time we spoke with his developmental neurologist, he recommended a trial of Risperdol (sp?). We feel like more meds would be like a band-aid, not a solution. But his rage is becoming unbearable.
So, that brings us to today. I was so moved by your accounts. Unlike so many of you, we don't have much of a "before" to go by. But his "after" sounds VERY much like what you have all described. It's probably the pure rage that I see on his face that is the scariest part. And at the same time he seems desperate and vulnerable. He truly seems to snap. If we had pool chairs, I can just picture him throwing them (citing another post :).
We are going to throw the Singulair away. He will never, ever have it again. Even if this isn't the cause of his problems, I certainly don't want to exacerbate any behaviors with this toxic medicine. I will post again just to let anyone who's interested know if this changes his behavior. I am praying that my entry will help someone else, just as all the other postings have helped me. I have renewed hope.
I have copied many of your comments to a Word document. I will be sharing it with a high ranking officer at the medical clinic/hospital on Keesler Air Force Base. I hope that he will discuss this with his staff and that perhaps we can at least make a difference here. I, too, will be filing a report with the FDA. I can only pray that this medicine has not permanently altered his developing brain.
-- By calebsmom | Reply | (4) replies | Send Private Mail
June 9th
2008
10:27 PM
I took my son off Singular a month ago, some slight improvements with the sleep and behavior problems. I voiced my concerns with my doctor twice now he looks at me like Im crazy and then he goes on the PC and says he cant find any of these side affects im talking about. My son was an appointment to see an allergist specialist.
-- By mommy12 | Reply | (5) replies | Send Private Mail
June 6th
2008
8:30 PM
My 54-year-old fit, social, successful husband was put on Singulair in January for newly diagnosed asthma. He developed a depression with anxiety, irrational fears, avoidance, mood swings and even one episode of suicidal thoughts out of nowhere. He saw a psychiatrist and a therapist, tried medications, yoga, a vacation, meditation, breathing exercises - everything! But he kept getting worse.
The day he was throwing patio furniture then sobbing uncontrollably was the day he realized he couldn't work in his condition. He negotiated a 60-day leave without pay. Even that didn't help. It was crazy. How could a man who managed hundreds of employees and a major health service system for 20 years suddenly be so paralyzed with fear that he couldn't walk down a beach or go into a Walgreen’s?
We found this site May 26th. He stopped the Singulair immediately. It has been 10 days and he is already 80-90% back to normal. Thank God.
Partly I am writing because it is so hard to read of parents' guilt that they "should have known" etc. Look, unlike a child, my husband is mature and very verbal; he is also a psychiatrist (!) with a capacity for self-examination and a language to describe his inner experience. And me, I'm a psychologist (!) trained in understanding people and I know him very well. And yet with all that training and skill and consultation and treatment, WE STILL COULDN’T FIGURE THIS OUT! So please, don't make yourself feel any worse with guilt. This is awful and tragic enough already.
I would add that the onset of mood and behavioral problems is so insidious that it is hard to connect the problems to the Singulair. Also, I suspect that children and adolescents are at greater risk because of their immature emotional developmental level. An adult l suspect may need some genetic or personal predisposition to mood disturbance, or stress, or both, to trigger these side effects. My husband had a depression episode 30 years ago and had recent traumas that certainly could have triggered the depression. But how treatment resistant that depression was, and those strange paralyzing fears and extreme anxiety – all that I blame squarely on the Singulair.
I have made a report to the FDA. I urge you to do the same.
-- By celticmoon | Reply | (4) replies | Send Private Mail
June 3th
2008
3:26 PM
Added to my previous comment about seizures which my son developed, I have been worried about his growth as well. I realize that kids grow at different rates but my son's growth pattern is so different from my other children!! I have asked the Pediatrician about this several times but he always says that no studies have shown a link between Singulair and growth.Has anyone else wondered about this?
-- By katryna | Reply | (2) replies | Send Private Mail
June 3th
2008
3:22 PM
My son has been on Singulair since the age of 6. He is now 13 years old. He developed seizures 3 weeks ago - temporal lobe aura epilepsy during which he was hearing voices. EEG abnormal, MRI normal. He hasn't started medication for the seizures but I have stopped his Singulair immediately! This was just a hunch - searching the net to see if there is any correlation. I have been to the Pediatrician AND the GP the past 3 weeks and no one said anything. I think a great number of children are on Singulair in SA. Does anyone know about the possibility of this danger?
-- By katryna | Reply | (4) replies | Send Private Mail
June 2th
2008
7:43 PM
My 17 year old daughter started Singulair last July for Asthma. She is brilliant and scored in the 99% on the ACT college entrance exam. She won 3 scholarships totaling over 60,000 and earned 27 college AP credits while still in high school, volunteering for the Red Cross, singing in choirs, and playing the lead in her high school musical and 3 plays. She was funny, sweet, and had many friends.
She left for college 3 weeks after starting the medication and saying she was breathing better. Her grades were terrible, even though I was able to check to see she went to class every session, as posted online. She became very depressed, withdrawn, staying in her dorm room. She was sleeping up to 20 hours straight without waking up. She didn't call her friends when she came home and only wanted to sleep. She was like a different person. She was so aggressive that she tried to run out in the middle of the night and attacked me when I tried to block her way, to the point I had to call the police. They diagnosed her with new onset major depression and ADD. They started her on Zoloft for 2 months and she got much worse and was removed from Zoloft as a result. She said she was too tired to stay awake even in class. We had a sleep study done for Narcolepsy and it was negative. Until reading these posts, I didn't connect the Singular. Everything I am reading is so familiar, it makes me feel ill. I can't believe I didn't know, I am a nurse. The guilt is horrible. I hope to get my daughter back, but she lost all her scholarships and only managed to pass 16 hours in one entire year of college. I can't afford to send her back without the money she lost. They even put her on a one time only probationary period to ever get Federal or State Financial aids and loans again. Singular had to be to blame. I am simply thankful my daughter is still here, she was very suicidal. My heart breaks for those of you that lost your children to the side effects of the drug. We have to get the word out by each filing a complaint to the FDA, and filling out adverse event forms.
Please don't let Merck get away with this. We need to act, even if your child was one of the lucky ones and is back to normal now.
May 30th
2008
1:13 PM
Reading these postings have brought me some comfort. At least I know it is not all in my head and that Mothers Intuition is still a strong powerful gift! My 4 and 6 year old were given Singulair. My 4 year old daughter came down with her first ever case of swollen glands. She could not eat any food and spent the next 2 months drinking from a straw. All tests came back negative, antibiotics didn't work, steriods didn't work and the ENT said I should remove her tonsils. After 2 months of being on all kinds of meds and her steriod treatment was done I decided to take her off Singulair. I just thought her body should be drug free for awhile! Within 2 days she was completely "healed". I will never give her Singulair again.
My son is 7 and I have just decided to stop his treatment of Singulair also. He has constant complaints of belly aches, grey stool, trouble sleeping and sudden tears. I just thought it was stress with school work, peers, etc. but I don't think so anymore. We seem to try to "understand" why our kids are having certain stress like symptoms but I think we need to look at our medicine cabinets first. They are small people on strong meds and I just don't think their systems can handle it. I think I am going to visit a nutritionist not pediatrician the next time I need help!
-- By fullcircleof5 | Reply | Send Private Mail
May 29th
2008
6:33 AM
hi, im not sure what to do. my 3 1/2 year old daughter was today given the prescription for singulair. i voiced my concerns to the doctor after my friend telling me its no good due to the side effects.she said that there are risks and side effects with any drug you take but for some reason i don't feel right about this. don't doctors know better than this. anyway Would like to know if all the people who take singulair suffer some sort of side affects or is it minimal? or going by this side it looks like its probably best not to give it to her at all.
-- By ramata | Reply | (12) replies | Send Private Mail
May 16th
2008
10:55 AM
In reply to concerned-dad and all others with chronic congestion, etc. I have heard several people that have tried the "Eat Right For Your Blood Type" (in bookstores) with incredible results. Even if they have not followed the most strict food do's/don't for their blood type, and made minimal changes they noticed a dramatic difference with congestion and asthma symptoms in children and adults.
I am not endorsing the book - but I will however give it a good hard try if my daughter's symptoms return that she had prior to being put on Singulair. And yes, you are so right to be concerned with the timing of Singulair and any new behavior issues - I still stand my ground when I say it is NOT normal for a toddler growing up in a loving home to have such horrible night terrors, screaming in fear.
My 4 year old took her last dose 3 weeks ago after a 2 year run on Singulair not an hour has gone by without her dad, sister and I still feeling waves of shock. She has completely changed from an unhappy, moody, unemotional girl into a loving, well-mannered, well-disciplined, even tempered 4 year old. Unfortunately, since the side effects have been so secretly held, all parents have been chalking all the behavioral issues to "toddler" years.
As I wrote to the FDA rep, this would be a classics Deceptive Trade issue for any other company in our country. Quite simply, when Singulair first rolled out it was sold with "ABC" treatments and "XYZ" side effects by the pharm reps. In February the FDA website notes they have given Merck 9 months to investigate (THEMSELVES) the many consistent complaints of side effects received for Singulair. And since the FDA did not give them a time limit to communicate the ongoing investigation and recently added side effects, my pediatrician and pharmacist as of May are still unaware. Same old commercials airing with the original "mild" side effects as sore throat, etc., same pharm reps visiting my doctor without informing of recent changes to the originally selling points.
Had my pediatrician been aware, I would have not received the answer I did when asking her what a toddler could have so horrible in their life to scream and cry through nightmares - "Some children react in their dreams if perhaps they saw a spider earlier in the day that scared them". I figured it would have to be a spider the size of my car to get that kind of nightmare, but in her defense had she been aware of the updated information with Singulair she would have zeroed in on the "bad/vivid dreams" Merck has now added to their website.
Hope this helps someone and if anyone has given the "Blood Type" eating regimen a try would love to hear comments.
-- By rlcoffin | Reply | (1) replies | Send Private Mail
May 15th
2008
11:13 AM
My son is almost 6 yrs old. He has been taking Singular for approx 3 years, in addition to Claritin and Nasonex. This is all for his allergy to mold. His doctor started him on these meds after a 6 month episode with sinus infections leading to asthma-like symptoms. We have not noticed anything unusual about his behavior until approx 3 months ago. He started waking up every night (2-3 hours after going to bed) with bad dreams. At first he would not fully awaken and fall back asleep immediately. After a month or so of this happening most nights, he had two nights in a row where he woke up screaming and was inconsolable for about 30 minutes. We initially thought it was night terrors, but he was not scared or fearful, he was just upset/angry. He would hit the bed repeatedly and yell. He didn't know what he was upset about but would talk about how he thought we hated him, he was dumb, etc. After about 30 min he would 'snap out of it' and return to his normal self and go back to sleep easily.
At first we thought these were night terror brought on by a recent fever, but he had another episode last night. He has also been falling apart at the littlest things and getting quite violent (for a 6 yr old). He was sent to his room yesterday evening because he was complaining about the dinner his mom made (lots of complaining these days..). He had a total melt down an started throwing things and hitting the door so hard he put a hole in it.
Some of this behavior I would chalk up to normal kid stuff, new baby brother, etc. But I am suspicious about the negative thoughts, bad dreams, and instant melt downs... I stopped giving him Singular today and we will see what happens. God bless you all as we figure these things out...
May 15th
2008
10:29 AM
Wow, I just found this site. The child that had strep especially caught my attention. My daughter, 11, has been diagnosed with PANDAS, which is also a controversial diagnosis. I'm not sure when she went on Singular, but it was a couple of years ago due to allergies. She had bad reactions to anti-histamines. For the past two years we have been dealing with just about every issue posted here. Physical pains, stomach, headaches, joints. urination issues, high cholesterol, but the worst have been the irritability , mood issues, OCD, fears of cutting herself, bad thoughts, suicidal ideation. She was on Zoloft which made things worse, She was hospitalized at her own request. She was placed on Prozac. She's had years of therapy. She would say life is just so hard and she wants to be a normal kid. About a month ago her pediatrician mentioned that there were some reports about Singular and it would be something to watch for and discuss with the psychiatrist, He didn't seem to know much about it. Last week after another suicidal ideation I decided to research the singular issue. I had been attributing everything to the PANDAs. I was so surprised to see the similarities. I took her off of it Friday and have seen some changes already. I hope we see that continued improvement. Thanks to all who have shared stories, it's so helpful. To have hope that you'll get your kid back is great.
-- By judyhk | Reply | (3) replies | Send Private Mail
May 14th
2008
11:26 PM
My son age 3 was diagnosed with asthma about a year ago. Since then he has been sick constantly. Most recently his doctor has prescribed Singulair. He is aggressively pushing it on us. I stated my concerns to him, and he said there is nothing wrong with the drug.. he gets all the news letters.. and all the things I listed was the first time he heard anything.. I asked for his to refer us to a specialist and he wont.. I cant find anyone for a second opinion..My son needs medicine- at night i cant leave his side cause of his breathing.. The doctor wont suggest any alternate and I am stuck. I keep reading about all the people who are not taking singulair anymore- what what are they taking? I am completely lost here!
-- By ossie | Reply | (5) replies | Send Private Mail
May 13th
2008
12:15 PM
My daughter was on Singulair for about 4 weeks this spring. She went from an outgoing talkative 15 yr old to being withdrawn and sad. Her symptoms were feeling hopeless, headaches, stomach pain, constantly tired. She was sleeping 9-10 hours at night without feeling like she had slept at all. She would fall asleep in class (not her normal at all). Her teachers noticed that she had stopped participating in class and seemed "sad". I took her to her pediatrician and she ordered blood work and an ultrasound of the abdomen-all of which came back normal. I toyed with the idea that maybe she was becoming clinically depressed. I researched her symptoms and came across others who had similar symptoms while on Singulair. I took her off Singulair and have noticed an improvement in her mood. Her teacher commented yesterday that it was nice to see her smile again and being happy. She told her that she noticed that she had seemed "sad" these last few weeks. I hope that they take seriously these potential problems with this drug. I will never allow my daughter to take this or any other related drug.
-- By you123 | Reply | Send Private Mail
May 13th
2008
10:08 AM
In response to dtrzaski post Im am sending out this question to everyone. We know there have been stool/stomach/weight issues. Are there any other children that it has been discovered to have high cholesterol. My son was discovered to have high cholesterol at around 3yrs old, apprx 6 months after starting Singulair (regardless of a very healthy diet lots of fruit and veggies!) Any thoughts out there?
-- By sp2008 | Reply | (2) replies | Send Private Mail
May 7th
2008
9:57 PM
My 2 year old son was put on singulair to help with asthma and allergies. Within 2 weeks we noticed a change in him - he wasn't the happy boy he normally is. We wound up in the ER one weekend after he had 3 petit mal seizures. The ER doc diagnosed febrile seizures. I wasn't convinced. Our pediatrician didn't agree, either, and sent us to a neurologist (but he didn't think singulair was the cause). The neurologist also hadn't heard of seizures associated with the drug.
My poor boy had an EEG and was in doctors offices, hospitals at least once a week until the EEG results came back normal - scary for a 25 month old child. I stopped the medicine immediately after our ER visit - call it mother's intuition. He hasn't had a seizure since. Although the doctors aren't convinced singulair caused the seizures, I firmly believe it did.
-- By kmc1313 | Reply | (3) replies | Send Private Mail
May 5th
2008
11:27 PM
Chris, truthfully your posts were a waste of your time. The majority of the people here who have actual instances that they can account for. For you to dismiss that is ignorance in it's true form. QUESTION? what drug company do you work for? As you have a valid point there are side effects with any medication prescription/over the counter/herbal, whatever organic/inorganic source it may be. As a medical professional I HAVE SEEN THESE SIDE EFFECTS FIRST HAND! I also have a friend who works for the FDA who has informed me of many developments that unfortunately because it is under investigation I can not post. I also have had a first hand experience with this drug with a young child. I understand some parent/people may also be ignorant and be quick to blame the singulair without ruling out any other possibilities. However the fact of the matter exists here. So again for you to dismiss what the majority of the people here are trying to do is quite frankly rude. To go through hell and back with my four year old innocent child, to take him off the med and now everything is fine. Coincidence... I think not. He was evaluated by psychiatrist, neurologist, his pediatrician-who consulted with 3 others, and an allergist and all come to the same conclusion. I will advocate until every parent/patient knows the risks. It is my responsibility as a parent. If I can prevent another child from going through this, even just one then I accomplished something. So again I ask you to be sensitive here and not try to make those of us who have valid concerns feel as if it may be otherwise. Do your research first!
-- By emtjenny | Reply | (1) replies | Send Private Mail
May 4th
2008
1:11 AM
Hi all. I just wanted to update what my son has been going through since we discontinued the Singulair. He is SO much happier. I was even able to take him off the Abilify that he took to control his behavior! I see no ill effects like last time we tried to take him off that medicine. He clearly doesn't need it anymore. We have been seeing a major increase in urine incontinence, both at night and during the day. He just can not make it to the bathroom in time. I had done some research on the net about this and I believe it is tied to the discontinuing of the Singulair. He along with others I have read about probably had or have rather, spastic bladder and the Singulair was actually helping that. They are using it to treat interstitial cystitis so I know that there is a link between the bladder and leukotriens.
We went to our pediatrician, who by the way agrees with my findings and all the people who have had problems, she says that it could take up to 6 months for the Singulair to be completely out of the system.
She put my son on ddavp for the bladder issue. So far it has helped a little. Too soon to know for sure.
Hope everyone finds peace in this soon
May 1th
2008
2:31 AM
After visiting this web site everyday for the past four weeks, I feel the need to share my daughter's (and my families') experience with singulair. My 8 year old daughter was put on singulair aprx. 2 years ago in addition to zyrtec to treat her allergies. Shortly after starting the drug, she developed stomach pain. After a few weeks of chronic pain, I pursued help from our pediatrician. After visits to two different pediatric GI doctors, an allergist (to test for food allergies), and an orthopedic surgeon ( because of sudden leg pain), the results were inconclusive. During this time my daughter also became very sad, angry and fatigued. She also completely lost her appetite and refused to eat much of the time. I attributed all of these symptoms to her stomach pain . In addition, she developed difficult sleep patterns and would often wake-up exhausted in the morning. Over time she also began to have more and more "melt-downs", breaking into crying spells over the smallest provocation or challenge. I recently contacted my daughters pediatrician to discuss what other testing or direction we could take to help my daughter. In the interim of making that contact, a friend told me about this web site. As I read page after page of other parent's experiences, I was in tears. I felt as if I was reading about my own family for the past two years. I say "family" because when one child is living through this kind trauma, everyone in the family is negatively affected in some way. My husband and I felt completely frustrated and unable to help our daughter. Our older children began to resent the great amount of time and energy I spent on behalf of our daughter. My younger daughter who had always looked up to and loved her older sister was sad and confused by her sister's anger and impatience.On March 29th I took my daughter off singulair. Unbelievable. Within 2 days, my daughter's appetite returned. On the second day, she came home from school and requested a corn dog and then some ice cream. She suddenly wanted to eat breakfast again. She started smiling and laughing again. She has suddenly become capable and responsible for doing her homework and chores. She is going to sleep more quickly and waking up happy. The best part is having our daughter back...the sweet, wonderful, happy six year old who I feel like I lost for two years of her life! As a side note-the return call I got from my pediatrician was that he wanted my daughter to see a psychiatrist. That's how close we were to taking another (completely unnecessary) path to helping my daughter. I also recently spoke with my daughter's allergist about our experience. At first he was somewhat dismissive. I asked him to listen to me parent, to parent for just a moment. He seemed to soften and said he would take a second look at singulair and its side effects. I encourage every parent who's child has been so adversely affected by this drug to be proactive. First, please contact the FDA to report your experience. Second, talk to your children's physicians and share, with confidence your experience. Third, share this web site or a similar one with everyone you know. I have been astounded how many children are on singulair just within my own small circle (school, church and play group). I really believe one voice can make a difference. I have to believe that for the sake of all the children still suffering.
-- By concernedmomof4 | Reply | (2) replies | Send Private Mail
April 30th
2008
10:45 AM
I discovered this site last Wednesday morning - without taking the time to list all of the grief I felt reading through the pediatric postings, I will briefly note my 4 year old daughter has been on Singulair for 2 years now. What I now realize is all the behavior issues, night screaming, etc. are so easily dismissed as stages of a toddler. She has suffered (as well as our family) every symptom and behavior listed by parents on this site with the exception of leg cramps.
Our entire family can see the dramatic results since taking her last pill last Tuesday night. The melt downs and tantrums are all but over, she even commented "hey, I listened right away" on the second day without Singulair. She is still having night terrors - I call them that because they are in no way a dream or nightmare, but rather agonizing moments that break our hearts to hear. I hope those will soon go away as well so her sleep pattern results in a restful night.
Am I angry that we have all suffered for 2 years only to find we have been basically poisoning her? Am I angry that for the 2 years her dad and I have sunk pretty low, feeling inadequate as a parent to teach and discipline our child? Am I angry that after 20 years of marriage, raising a great 16 year old in the midst of all this, we were to the point of the ADD, bipolar, etc. theory that would have been misdiagnosed? Heck no, we are all so thankful to have come across this site and are so giddy and excited to be happy again.
What I am angry about is this - when I called our pediatrician last Wednesday and relayed what I had seen on the Merck website for side effects added in recent months she had not heard this information and asked where I saw it. At that point I had not seen this site. I asked her how is it the well dressed pharmaceutical reps come in with doughnuts, exotic trips, etc. to market a drug with "ABC" treatments and "XYZ" side effects, continue to market the drug and never update the doctors when original selling points are altered - ie; new side effects.
The FDA website is troubling for two reasons: Merck is in charge of their own investigation regarding recent complaints and the FDA expects this to take 9 months. Gee, who gets to investigate themself? Secondly, in February the site notes the FDA and Merck are trying to find the best way to communicate the concerns being investigated to prescribes and patients. HELLO - we live in a world of real time, instant communication methods, two examples being the United States Postal Service and an internet connection.
Today is April 30 - a full two months after "trying to decide how to pass this information on" and my doctor, nor my pharmacist have received any information. Apparantly since we missed the story and coverage on Dateline we are out of luck.
I plan to start from ground zero to get our voices heard to change the way, or the law if you will, to implement an immediate communication link between the FDA and prescribes when an investigation such as this has been initiated. I realize Singulair has most likely benefited more humans than it has destroyed while on the drug and the FDA would have to clearly not communicate "panic". However, when a drug is used for pediatric treatments we need information quickly to assess on behalf of our children. In my case, since my daughter had been on the drug since 2 years old, I do not know what her "normal behavior" should be as that is the age they start to develop and show personality. Additionally, when enclosed prescribing information is updated with a prescription -MARK IT IN RED, "UPDATED INFORMATION". I read every ounce of information that accompanies a new prescription for any family member. I would NOT, however read the information every 30 days for an ongoing, long term prescription over the course of 2 years.
I am looking for anyone that may have started contact with a congressional representative or otherwise to change the communication to our doctors. Please note - I am in no way interested in any legal action regarding Singulair and our nightmare. We are moving forward and do not wish to live the nightmare one moment more. I simply want to see our doctors and pharmacists have vital information as it happens.
Thank you to all for sharing your experiences - I truly believe it is changing lives and making a difference. I am personally telling everyone I know about what is happening with our child and all of yours. Andy by the way, by telling one of my long time friends our amazing discovery, she realized she had been suffering from depression for some time and chalked it up to various things going on in her life. She had her last Singulair last week and feels tremendous! So keep the word going!
-- By rlcoffin | Reply | (5) replies | Send Private Mail
April 29th
2008
1:32 PM
(A divorced father)
My son has been on Singulair now 5 years and I am in the middle of fighting to get him off. My son is now 7 years old and has been diagnosed with allergies (no test have been done which I find very odd), which leads to a case of mild asthma. This past weekend his mother forgot his Singular on Friday so I could not give him any till the next day, where we met at his soccer game. Saturday night I gave him his usual pill and thankfully due to his exhaustion from playing out side all day he went to sleep in 10 min. vs 3 hrs later which is the norm since Singulair seems to jack him up.
He also has red puffiness under his eyes - most likely allergies.
Seems depressed - just driving down the road and I look at him in the rear view mirror and he just sits and stares into space. When I ask what's wrong he either says nothing or I am tired.
He will try to tell a story or think for himself and just stops mid sentence and says " never mind I am just confused"
He will be having fun one moment and just starts crying or gets depressed.
He was throwing a ball in the house (yes I know) and accidentally knocked a glass over breaking it - he went running to his room, crawled under his bed and sobbed profusely for over 30 min.
He has a hard time doing / focusing on homework - becomes bored very easily.
Does not want to go outside. I will take him to allot of cultural events/ hands on or participation events - he will not try anything. He is unsure and will not come out of his box so to speak.
I spoke with his doctor who was reluctant to take him off, but then agreed that if it was OK with the ex, to take him off for a week to see what happens.
The fun part: My ex is convinced that since he has been on Singulair for 5 years he is fine and does not need to come off it.
1.) Son is diagnosed with mild asthma or allergy induced asthma.
He has never had an allergy test done and has not had a lung function test in over a year.
2.) It is documented that our son has four outbreaks a year. (sounds like the changing of the seasons) but is given Singulair all year round and the dosage has also been increased.
3.) Since the court order, ordered my ex to enroll our son in sports (she would not let him play anything) he does not wheeze or cough uncontrollably.
4.) Since I had to battle to get our son on my insurance I have cut her control issues off a little, but she is refusing to take him off Singular just for a week to see how he reacts. Although I do agree that he should have some form of allergies medicine.
5.) When I found out about the side effects of Singulair, I also found that his doctor was getting ready to add two other allergy medicines to his portfolio - totaling 3 different meds.
I see our sons behavior getting worse and I watch him turn into something he is not and with a controlling individual not believing anything about the side effects it looks like I will have to rely on the medical system to prove my point. I do believe he needs to be accurately tested for allergies and given a regularly lung function test but most of all since he is now on my insurance, a second opinion and a 3rd to narrow down what the situation is and an alternative medical procedure that is fit for the symptoms.
-- By aussie63385 | Reply | (9) replies | Send Private Mail
April 28th
2008
5:35 PM
As an adult, I have had no problems with the drug. That being said, I wanted to remind readers that very few drugs, if any, are tested on children. As any good pediatrician will tell you, children are not just little adults. Drugs companies and doctors should not just adjust dosages and say that a drug is OK for kids. As a mom, I'm cautious to give my kids any medication that is new, including vaccines that are new, because I know testing has been limited with respect to children.
-- By donoghsgirl | Reply | Send Private Mail
April 18th
2008
12:32 AM
I have communicated directly with Leslie Hendeles, a leading professor of pharmacology and pediatrics at the University of Florida who's direct quote to me was:
"In response to your last comment, I thing Singulair has modest efficacy, and if we take all of our patients off this drug, THEY WON'T SUFFER. This is NOT an important drug for pediatric asthma, as are inhaled corticosteroids."
Ironically, this is the same individual who was quoted in an ABC news article as saying:
"We have hundreds of children on Singulair and have never heard parents make complaints about psychiatric side effects. Moreover, there is no mechanism for this reaction … We will be telling our patients not to worry about this."
WAKE UP EVERYONE...THIS IS AN ADMITTEDLY OVERPRESECRIBED DRUG THAT HAS WORKED WELL FOR MANY, BUT HAS ALSO RUINED MANY LIVES.
The manner in which this drug is casually overprescribed by so many doctors is freakish. I firmly believe that this drug has caused countless misdiagnoses such as ADHD, Bipolar disorder and others. IT FUELS A GOOD PART OF THE ECONOMY TO PUT SO MANY PEOPLE ON THESE DRUGS. I BELIEVE THE PHARM INDUSTRY IS VERY CALCULATED IN THIS MANNER.
Question what your doctors tell you.
See my other posts under matthewct1. I dealt with a situation where my 5 yr. old son was on the road to being diagnosed with ADHD which couldn't have been further from the truth. Singulair changed him. Since he's been off Singulair everyone (teachers, pediatrician, family, etc.) unanimously agree that he does not show the ADHD symptoms like he did on Singulair.
April 17th
2008
8:59 PM
Hello to everyone, I just came home from a parent teacher conference for my son who is 7 yrs. old, and heard the same old thing, "he is restless, impulsive and has a short attention span". He has been taking Singulair for about 3 yrs.. Since he has started school I have had these complaints and have also been told he displays symptoms of ADHD, which ironically has been for the last 3 years. Like any parent, I question" if I am doing something wrong with my parenting, is his diet good, etc. etc.", I am also a nurse, I realize that medications are needed and beneficial in some circumstances, however I firmly believe and was taught in nursing school that medication is last resort. That being said, I have been very adament about NOT giving my son ADHD medication after doing alot of research on the different meds and their side effects. So, we started him on all natural vitamins, changed his diet some ( kids got to have candy once in a while) and started a more structured routine( the best we can since we both work) and also enrolled him in Sylvan. The teacher says there is a 50% improvement but he is still impulsive and still does not pay attention like he "COULD", again suggesting he needs ADHD meds. I came home in tears and started to do more research online to see what else can I do besides putting him on psych meds?....Then I came accross this site, I just want to cry after reading all these posts. I wonder, could this be his problem, the Singulair?.. About a year ago he use to get up in the middle of the night, 5 out of 7 complaining of nightmares, hearing things at times, headaches, decreased appetite, stomach upset, all AT TIMES, not all the time so I never thought alot about side effects of Singulair. When the school started complaining I did look at side effects of Singulair and seen HYPERACTIVITY and mentioned it to his pediatrician and she shrugged it off saying she never heard of it being a problem. She's a great MD so I listened to her because his asthma was bad when he was younger and it is now under control. But then I think maybe he is outgrowing the asthma. I am afraid to stop Singulair and him have breathing problems again but then I can't help this strong feeling in my heart that says this may have been his problem with everything else all along. We are going to stop the Singulair tonight and see what happens. If anyone else has a child with asthma any suggestions for alternative treatment would be appreciated. I already know what's out there but sometimes it's nice to hear from another parent going through similar situs. Thanks for reading, Bobbie
-- By bobbiejo | Reply | (5) replies | Send Private Mail
April 17th
2008
3:52 PM
I've never written on a blog in my life, and now that I've just read this, my stomach is doing flip flops and my blood is runnung cold. I have an 11 year old son and a 9 year old daughter. They have both been on singulair for quite a few years. My son has been on ADHD meds now since about a year and a half after starting Singulair because we tried to avoid them. Every few weeks he tells me he has this empty feeling inside him that makes him really sad and he doesn't know what it is. It just feels empty. I'll usually read with him or play a game or walk our dog with him to help him feel better.
As for my daughter, she exhibits all of the symptoms I have read about. She talks about life being terrible( trust me, she has it pretty good), she has been diagnosed with an anxiety disorder, OCD and Tourette Syndrome. Every psychiatric medication we have tried has made her worse. She was always a confident, outgoing little girl, and then she just changed. She's had stomach aches, which the docs always thought were in her head. She gets headaches. She is extremely sensitive, won't let me even brush her hair or touch her. She has extreme mood swings and gets upset over the most miniscule things, then writes about them, even saying she realizes her anger was too much for what the situation was! I will stop Singulair immediately and see what happens. What a miracle it would be if all of their symptoms disappeared.
April 15th
2008
11:55 PM
It has been 18 days since my 9 year old daughter has taken Singulair. Our daughter had been taking Singulair for approximately 2 years. It was in the last year that we started to notice some behavior changes and mood swings that were so often unprovoked. We were somewhat concerned and thought like so many other parents that it was a phase. Then in December 2007 she came home from school with a tummy ache and had several episodes of vomiting. She seemed better the following day, but we took her to the pediatrician to be sure that this was a virus. The stomach pains continued, and then anxiety attacks began. Over the next month she began to wake up each day with stomach aches and we began more visits to doctors and more testing. She had abdominal X-rays, CT scan, mekel scan, GI consult and endoscopy. All were ok except she did have some small amounts of acid in her stomach. She was treated with Prevacid with really no significant changes. As weeks passed she missed more and more school, she just could not make it through the day. She had intense separation anxiety, and developed OCD about being sick again and vomiting, fears that she may stop breathing; fear of dying and the list goes on. She was refusing to ride the bus to school, and was having more and more panic attacks that would last for hours. We finally took her to a psychiatrist after we had done every test we could possibly do and all were normal. She woke up with the fear and anxiety, and fell asleep each night the same way. The doctor said she had "OCD" which she believes was triggered by the fear from vomiting. "This was the first time she had vomited since she was an infant.” She was treated with Lexapro, and Klonopin. The symptoms worsened over the next few days even with the new medications. After many calls to the doctor we were finally advised to have her admitted to a children’s psychiatric hospital for closer evaluation where higher doses of medications could be administered. She was there for 4 horrible days with slight improvements. Over the next few weeks the medication did begin to help some and she was able to make it through school each day as long as she was able to call me a few times a day for re-assurance. I thank God each day for her wonderful teacher and staff that have helped us through this. They all have known her for 3 years and knew this was just not her character at all and she was truly struggling. She was always known as "Smiley" to everyone because she always wears a grin. We began therapy with a psychologist as well and she has good and bad days. Then we heard the news about Singulair and I began to trace back other issues she had with focusing in 2nd grade and how things just seemed to progress from there. It all happened so gradually that I would never have put two & two together. She is showing improvements every day with personality, mood, attitude, fears, and the "OCD". She told me today that this was the best day ever!! I have made all the Doctor's involved aware of this information and the progress she has made in the last 2 1/2 weeks. Her doctor did cut her meds in half this week as well. Thanks to everyone that has posted their nightmares as well, and we will pray for you and for full recovery for all those that have suffered.
-- By benitez91 | Reply | (2) replies | Send Private Mail
April 15th
2008
12:27 PM
My husband and I have been increasingly worried about our 11 year old son lately. He had been becoming increasingly unhappy and difficult. He was in the school play, one of the things he loves most, but had no enthusiasm or energy for it. He seemed apathetic about many activities he had always been eager to participate in. I kept thinking maybe he was just tired and too stressed out. It seemed like almost nightly he was sinking into anger and depression. We were walking around on eggshells trying to prevent him from spiraling into one of his angry moods where he would just shut down and say he didn't care about anything. The happy, cooperative, well-adjusted kid we had always known was gone.
Three weeks ago we began to talk about the fact that maybe there was more going on than just adolescent angst. We were beginning to believe some kind of professional intervention might be required.
Two and a half weeks ago our local paper ran the story about the Miller family whose son committed suicide while on Singulair. My son had been taking Singulair for three months.
The same day the newspaper story ran, my son had another tough morning When I went to bed that same night, I found two “suicide” notes from my 11 year old on my pillow. (He had not seen the article.) In one he asked for a gun or knife for his birthday so he could kill himself. In the other, he told me he had been thinking about killing himself since February.
My life for the past month has been filled with conversations and appointments with the suicide hotline, the pediatrician, a psychotherapist, the school social worker, the mother of the boy who committed suicide, the FDA, etc. etc., filling out forms and writing notes and observations.
My son had just recently finished his last bottle of Singulair. I had not yet refilled the prescription, and we have no intention of doing that. The turn around in my son has been extraordinary. My incredibly exuberant and joyful son is back. I did not realize until the past few days how much light he brings to this house and how far away he had faded. But everyday, as the drug leaves his body, his beautiful, loving, affectionate, helpful happy self returns. We just kept thinking for so long… I guess this is normal for a 6th grader. It must be adolescence. It is an incredible gift to see the cloud lifting.
I worry a great deal about the children who are not as severly affected - whose parents are thinking, as we did, maybe this is just typical for kids this age. I am incredibly grateful that my son was finally able to articulate some of the horrible feelings he had inside, and that the article appeared when it did to give us some clue as to what we were really dealing with.
-- By skye1289 | Reply | (1) replies | Send Private Mail
April 14th
2008
3:10 PM
My daughter took singulair for a number of years because she was asthmatic and the doctor recommended that she takes one each a day. At 13 she started acting differently and I thought it was just growing up and being a rebellious teenager. I later found track mark on her arms and she was hospitalized under suicide watch. She was not allowed in school until she had numerous therapy sessions. On top of everything she was giving topamax to control her anxiety and depression and now missed so much school that she has graduate a year later.
-- By jazzy0313 | Reply | (3) replies | Send Private Mail
April 13th
2008
11:16 PM
Alright. After observing my daughter for two full weeks after discontinuing Singulair, I have decided to share our story.
Our daughter started taking Singulair last August (2007) to relieve her allergy symptoms. I'd like to add she is an identical twin, whose sister did not need to take the medication, for she had mild allergy symptoms that were easily relieved by taking Allegra. So we clearly have a side-by-side case study where one twin took the Singulair and the other did not. About two weeks later we noticed changes in her behavior and thought it was due to the new school routine and changes, etc. Then she started not eating, and when she did eat, she ate very little. Both girls are in a select soccer league are physically active 4-5 times a week.
Long story short - she stopped eating, lost weight, stopped growing and is now 2.5 inches shorter and 15 lbs. lighter than her identical twin. They are fifth graders, I might add, so 15 lbs is ALOT of weight at their age. She was withdrawn, known to have deep depressive episodes, reacted adversely to everything and, in general, wasn't acting herself since last August. She was not enjoying life at all.
She is usually a quick-witted child, one with a sunny disposition and who interacts with others very well. She is joy packaged in a colorful bottle, ready to share her thoughts with you.
We took her to her pediatrician, a nutritionist, a psychologist and all said she was clearly depressed and that is what led to her changes in eating. No kidding, I thought. But why? What has happened that could have changed her so drastically?
I had never felt so far away from my child as I had with her during this time period. We are a close family and we pride ourselves on being able to freely express how we feel.
My dear mother-in-law saw that the FDA was probing the side-effects of Singulair with children and she mentioned it to me, because she knew that is what my daughter was taking was taking. I never thought about the connection, because I take Singulair. I will add I also take an antidepressant and have made an appointment with my doctor to discuss all of this.
After talking with our pharmacist and getting an exact date as to when she started taking it, I called her pediatrician and discussed it with him. We had not been to him since October, because we took her to everyone else (psychologist, etc), so he had not known exactly what was going on with her mental health. He did, however write in his notes (and told me when I called), "Discontinue Singulair if symptoms persist." Hmmmm. Exactly why I wasn't told this from the beginning, I don't know and am very bothered knowing he wrote that on her chart.
Well, after taking her off it two weeks ago she is now back to her happy, connecting and eating self. People (her father, twin, and I included) noticed a change in three days from stopping use of Singulair.
She has changed IMMENSELY since getting off the Singulair that it has been easy to pinpoint her taking that medication as the reason she has been absolutely miserable for the past SEVEN MONTHS. I thank God it wasn't longer and that she didn't suffer any longer than she already did, but it was a true hell to watch her go through what she did and to watch her decline and to not know (professionals included) what to do. Words diminish how we felt and how we feel now after having her back.
So there you have a side-by-side comparison. One identical twin thrived while NOT taking Singulair and the twin who did take it suffered terribly, physically and mentally, while she was taking it.
The allergy relief she experienced was clearly not worth the internal suffering she endured while taking Singulair. I wish we could turn back time and give her those seven months back.
-- By nran | Reply | (6) replies | Send Private Mail
April 11th
2008
2:20 PM
After reading more posts and comments to others re: SINGULAIR and discussion of side effects of steroids - I am really scared as you could all imagine! Do I need to look for any side effects from the flovent and albuterol? What should Iook for? I am so not the paranoid type but am quickly becoming more now b/c I don't want my son to suffer anymore. I know predisone long term but what about the flovent which is a steroid? Any advice would be greatly appreciated!
-- By njcukett | Reply | (1) replies | Send Private Mail
April 10th
2008
5:40 PM
Follow up to my post earlier today...
I took the my son to the doctor this morning and he was somewhat dismissive of the recent reports on Singulair...says he's had a lot of kids on the drug and never heard a peep about side effects until last week when the report on suicidal tendencies showed up. He did advise that when these kinds of behavior changes happen after a new drug is started he would recommend that we stop taking the drug no matter what it was, but I still felt uncomfortable with his response to us.
I felt like he was accusing me of making it up or only coming up with it because of recent news and message board posts. In fact, I made the appointment BEFORE I saw the posts. I was worried about his behavior BEFORE I saw the posts. It's just that seeing the stories from everyone else basically confirmed my suspicions that it might be the drug causing the problems.
I feel like I definitely wasted OVER AN HOUR waiting for a doctor to spend five minutes making me feel small.
Last night was the last time my son will take the drug, and I don't care what the doctors think of me.
-- By adschimek | Reply | (10) replies | Send Private Mail
April 9th
2008
8:25 PM
I just visited Merck's Singulair website and spent a long time really, really thinking about everything that they had for physicians. After thinking about the pathways for myself from the standpoint of chemical interactions, I wanted to know what was explained to the physician. I approached the site from the standpoint of -- if one of my patients was overdosing, how could I recognize that. What would happen? Merck's site has diagrams and movies on the nasal passages and the lungs. You get a picture of a mast cell producing-- doing it's thing. That was it. And on every page, this...
SINGULAIR is indicated for relief of symptoms of allergic rhinitis (seasonal allergic rhinitis in adults and children aged 2 years and older and perennial allergic rhinitis in adults and children aged 6 months and older).
In clinical trials, SINGULAIR was generally well tolerated, with a safety profile similar to that of placebo. Adverse events varied by age. The most commonly reported adverse events, occurring at a frequency of ≥1% and at an incidence greater than placebo, regardless of causality assessment, were sinusitis, upper respiratory infection, sinus headache, cough, epistaxis, headache, otitis media, pharyngitis, and increased ALT.
SINGULAIR is contraindicated in patients with hypersensitivity to any component of this product.
Okay, let's talk about headache at greater than 1%. Headache is 18-19%. How do I know that from what they put on their website?
It might be a very good question to ask your doctor if they could go to the Singulair website and be able to know what would happen if they had a group of children or adults that liked to take pills. Yum, one of good, more is better. I had no clue from that website if there was a risk of overdose or not.
This is not my area. I am trying to help. I am essentially as in the dark as you are.
-- By concernedcitizen | Reply | (3) replies | Send Private Mail
April 9th
2008
6:27 PM
I have posted in the past about my 9 yr old dd who was taking singulair for 3 yrs. Upon finding all this information about singulair and way before it hit the news .My dd was being tested for many different problems nuerologically wise. Trying to rule out depression,bipolar and ADHD. She had an eeg and labs done a few days after stopping singulair. And just today we went in for results and nuerologist says labs are normal but eeg was not . Meaning that she could possibly be having seizures. BUT NOW I AM WONDERING IF IT WAS SINGULAIR CAUSING THIS? I read somewhere that seizures can go unnoticed if they are very mild. But she did having trouble sleeping and concentrating. And at times even just stared off into space after we spoke to her repeatedly. My question is has anyone had any similar experiences with singulair ? Please respond.
-- By momof3angels | Reply | (3) replies | Send Private Mail
April 8th
2008
10:12 PM
This is an update. We took our son off Singulair 10 days ago. We continue with Flovent once a day, and the asthma has not deteriorated. My son's overall mood has gotten better, he is less aggressive and became very verbal about how much he loves us. He is still emotional but not as much as before: while he still wants to cry at the drop off a hat, he manages to stop himself after 15 seconds. That is a huge improvement. Things are by far not back to normal, but overall I see my old son shining through.
However, we still have an issue with obsessive compulsive behavior. We have an appointment with our pediatrician this Thursday.
April 8th
2008
9:40 PM
Both of my children are taking Singulair. My seven year old son has been on the drug for 3-4 years and we've noticed no problems. However, I am becoming very concerned about our three year old daughter. She was put on Singulair in November/December 2007 along with the other allergy medicines that she was already taking: Nasonex, Rynatan and Zyrtec. However, our allergist took her off the Rynatan and Zyrtec in mid-March and replaced them with Singulair. Since then, the child will not go to bed as she has in the past. She tosses and turns for an hour or hour an a half EVERY night. I've considered that maybe she needs to do away with the afternoon nap BUT she is still restless even if she hasn't had a nap that day. She is also doesn't want to get up in the mornings. We practically drag her out of the bed. This is very unlike her. She used to wake up easily every morning with a smile on her face and ready to go. Now she's a grump throughout the day and cries easily. My husband and I have decided to take her off the Singulair and see what happens. We already know that she is sensitive to some medications. We had an experience with Levalbuterol and Pulmicort (nebulizer treatments) in February that was scary. The pediatrician wanted her on the treatments 2X a day for 6 wks. The child was out of her mind on these meds. If someone had videotaped her and covered her face, I would not have know that it was my child. These meds. changed her entire personality. She took the treatments for 4-5 days and we decided enough was enough. As soon as we stopped the meds. she was back to her old self. She WILL NOT take them again unless there is absolutely no other alternative. I've decided that I've got to be more vigilant about watching for possible side effects of medications.
-- By raaryount | Reply | Send Private Mail
April 6th
2008
9:37 PM
In response to Concernedcitizen with regard to the additional medications prescribed, we never got that far, but we were close. My son, as I've mentioned on here before (sorry for the repetition, but I think it's important), was about to be diagnosed as bipolar, which would no doubt have led to a whole host of other drugs.
Also, I totally agree with concernedcitizen with regard to not necessarily blaming our doctors. We should expect them to listen to us and take our concerns seriously, though. My son's first pediatricians were dismissive and condescending. We switched doctors and when I handed the new doctors a printout of all the posts from this site (back in 2005), they looked skeptical, but guess what? They READ it. And, my son's primary pediatrician has since told me that he's taken several kids off Singulair based on our story and the posts he read. The research provided her by concernedcitizen is INVALUABLE. If enough doctors see this stuff they'll start to question it and at least look at some of these children differently. Rather than throwing a prescription for Ritalin at them or stuffing them full of wellbutrin/abilify/lithium/klonopin/cymbalta/ they might think, "Hey, this kid's on Singulair...maybe we should try taking him/her off for a while to see what happens."
Finally, I wanted to put it out there that while kids may show mild side effects in the beginning (so mild that they can be dismissed in one way or another) I, personally, believe that with this drug side effects intensify over a period of time. My son, for example, was highly functional on singulair in the beginning and it completely eradicated his asthma and allergy symptoms, so it was great. Over time the side effects were more numerous and increasingly intense. Finally it got to the point where we couldn't dismiss it as bad behavior anymore, it was just completely outrageous behavior and my instinct told me it HAD to be the singulair. So these case studies that look at kids over a 24 week period are useless. In 24 weeks my son was fine. 52 weeks? Totally different child.
Definitely use the info provided on here, it will help not only your child, but other children as well.
-- By cheflette | Reply | Send Private Mail
April 5th
2008
5:24 PM
I am updating as my almost 7 year old son has been off Singulair for a little over a week now. He seemed to actually go through a "withdrawal" period for about 2-3 days. He was very emotional with his moods swinging wildly, giggling uncontrollably one minute, and then crying at the drop of a hat. Thank goodness we did this over a weekend so his teachers didn't have to deal with this! His stomach aches continue, but they don't seem to have the intensity they did before and this morning he even said to me that his stomach hurt and he was trying to figure out if he was just hungry or had an actual tummy ache. I gave him a small breakfast and he said, "Yup, I was just hungry, it's gone now." Before, he couldn't ever tell if it was a real stomach ache or if he was hungry. His stomach just always hurt. He did have two nights in a row (the first two nights w/o Singulair) with really BAD nightmares--even came into our room crying both nights. Since then, he hasn't woken once during the night. My husband and I can't remember the last time we went a whole week without our son ending up in our bed!! No complaints of headaches, leg pains, no sinus infections, etc. So far, I would say that he is getting better--the side effects, at least. Because our son is severely asthmatic however, we do take peak flow measurements 3x every day. Since going off Singulair, his peak flow hasn't been as good. Not terrible, but not as good.
Interestingly, I spoke with both our pediatric pulmonologist and our pediatrician's office. Our pulmonologist was very supportive in going off the medication as long as he had other controller meds (which he does). Our regular doctor's office has two pediatricians, one was very interested in what our pulmonologist had to say, what our son's side effects were, and was supportive of our pulmonologist's decision, etc. (She's the one we always see.) The nurse told me that the other ped. was not recommending that ANY of her patients stop taking Singulair. The ignorance of some doctors--lesson learned for me. Never see that pediatrician!!
The tough decision for us will be what to do if our son's asthma gets worse with recurrent pneumonia and hospitalizations for URI's returning. We are hoping that doesn't happen and that we can find other ways to help control his asthma! I still feel that Singulair was the most effective in controlling his asthma--just don't think we can put him through all the stuff that seems to come with the Singulair!
-- By allergymom | Reply | (2) replies | Send Private Mail
April 5th
2008
8:49 AM
Wow, everyone, thanks for the support. Medicdad asked that I keep him posted about how I'm feeling, and this is only day two, and I hope this isn't a placebo effect, but I do feel better already. I did cry a bit yesterday, but I didn't get carried away with my thoughts or anything, and not once did I have any inclinations to harm myself. No thoughts like that came into my mind all day, and for what seems like forever they came in several times a day, even when I was "happy". Seriously, I would be doing laundry, nothing upsetting happened, and I would think about hanging myself in the garage. And who do you confide in with something like that? That is CRAZY. I feel like I have more rational thoughts and a better perspective on pretty much everything that presents itself to me, but I don't want to get my hopes up just yet. As far as the asthma, I feel like I can breathe the same, even better, which seems odd, since yesterday. I do take advair, and I am hoping that will be enough. I also take zyrtec for my allergies, so hopefully those two will suffice in maintaining my quality of life in those areas. I am already planning to exercise this afternoon after work, which I think is a good sign, and could help my lung function naturally. So I hope that I can report that things are much improved after a week, like so many other people have posted.
-- By psiloveyou75 | Reply | (2) replies | Send Private Mail
April 2th
2008
11:26 PM
My 5yo son is one week removed from Singulair, and we are starting to see a gradual improvement. When I first started reading these posts, I just sat and cried. My son started the meds last fall for allergy induced asthma and his behavoir has gotten progressively worse this January and February, so much so that I contacted the pediatrician to start the process of having him see a counselor. He was fine before last August. I blamed his problems in the fall to his adjustment to kindergarten, then my grandmother got sick and passed away February, so I thought this time his obsession with death and bad behavior at school was related to her. I never once even thought it was the Singulair. Looking back I realized the behavoir coincided with his Singulair use (I took him off it in December because there was nothing in the air to cause him to cough and he was fine). In January we started back up full steam ahead and the doctor increased dose...Hello!! He was so angry sometimes and had a multitude of the symptoms listed on this site. He would constantly say he hated school. He chewed his shirts repeatedly, actually chewing holes in the neck and sleeves, he would blink his eyes weirdly which I have equate to the "tick" other people described. He would say he was stupid, that no one loved him, that no kids wanted to play with him and that he was an idiot. He said he wished he was in heaven and wanted to leave this world. My mom found him wrapped in blankets over spring break and when she asked what he was doing he said he was trying to suffocate himself. His crying wasn't even a normal cry, it was in a word: soulful. It would make me cry just hearing it because it was such a mournful sound. At his aftercare program he would try and leave and say he wanted to get hit by a car, they actually had to restrain him. He had instances of aggression with other kids in school, which resulted in phone calls from the teacher and principal. Again I thought it was related to the death in the family and him having no other way of expressing his anger. I even blamed the other parent thinking they were overreacting - embarrassed about that now to say the least. I started getting names of dr's to get grief counseling to determine if it was the loss or if he was in the throes of depression. Then I see the news about Singulair and looked it up on the web since he was on it. Talk about taking your breath away. Then his stomach cramps made sense too. I would have to massage his stomach to make it feel better, thinking it was the milk causing it. People can say we are all making this up, or the posts are fake...even his allergist said they feel the benefits outweight the risks, but until you live it you really just don't get it. I took him off it that night. Each day is getting better. Today was a great day and I am cautiously optimistic for tomorrow. He was happy. Even his sister remarked about what a good mood he was in and that he wasn't whining or crying. Putting him to bed tonight he told me he loved me more than tomato pie...and in his world that's at the top of everything The sad thing is that the medicine works for the asthma and controlled his coughing. The cough is now back in force so it is a double edged sword. It's amazing how similiar the symptoms are with other kids. I guess hindsight truly is 20/20 huh?
-- By anothermom555 | Reply | Send Private Mail
April 2th
2008
6:46 PM
I kind of think CNN and the FDA are intellegent enough to figure out that they should NOT get information off this website. What makes everyone think all these posts are real? First you have to weed out the pranksters who post here for fun, then you have to weed out the competitors to Merck who post here to bust chops, and then you have to weed out the ones who really have a psychiatric condition and get their jollies by posting made up stories.....shall I go on? This is the INTERNET people!!! Anyone with one, two or ten verifyable emails can sign up (I have 11 email addresses myself). I have been intrigued to see the same people posting under multiple user names. Then you go to the other boards and see them there. If you really study these messages you can figure them out. So my point is, NOT ALL THESES STORIES ARE REAL. I think I would be generous in saying 25% of these posts are legit. I would hope that no government agency or news agency is going to risk their reputation on a public forum message board.
-- By chris555 | Reply | (14) replies | Send Private Mail
April 2th
2008
4:08 PM
Please report your negative side effects to: https://www.accessdata.fda.gov/scripts/medwatch/medwatch_online.cfm
If the FDA is launching an investigation then they need all the reports we can send them.
I posted early in 2007 that my daughter had become angry, violent, withdrawn, appeared to be hearing voices in her head, etc. Pediatrician dismissed Singulair link. Found this site and took her to a specialist and then took her off this horrible drug. She is doing much much better. It has not been an instant recovery, although we did see some changes immediately. This drug needs to be thoroughly investigated.
-- By jderochi | Reply | (1) replies | Send Private Mail
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 | Send Private Mail
April 2th
2008
11:34 AM
Our story is so similar to many of the others posted. I am including it because it adds to the data. Our 12 year old son has been on Singulair since age 7. Prior to going on Singulair (although I did not make the connection between these two events until this week..) he was an easy-going, happy, delightful boy. During the late fall of first grade he started developing strange behaviors--obsessive hand-washing, kicking our pediatrician, saying the water was poisoned. He is continuously irritable, moody, easily annoyed, impulsive, self-critical and has difficulty modulating his attention. He has had a few incidents where he has said he wants to die, he is worthless and a loser. He continually apologizes for his behaviors and is extremely remorseful, but then goes and does it again. We have seen so many specialists, spent so much money on counseling, have tried neurofeedback, Adderall, alternative supplements (eg omega 3's)...the list goes on. His issues have been like a part-time job for me. I never made the connection to Singulair, because the pediatrician and allergist assured me that Singuair had virtually no side effects. Right after the New Year (2008) he had a few days where everything seemed to go right for him-- moodiness disappeared, did his homework agreeably, seemed truly happy for the first time in a long time. In retrospect, I am guessing it is because we forgot to bring his Singulair on our vacation, so it was out of his system for several days. Now that we've tossed the meds, I'm hoping that the side effects are short lived...and we see our old son again.
As for the individual who wrote that we may be ambulance chasers, I can promise you that any money I receive in a successful class-action law suit would go towards helping other families avoid the pain and suffering our son has gone through. I consider myself an educated & well-informed parent and yet I was blind-sided by the medical industry.
-- By hsuttin | Reply | (3) replies | Send Private Mail
April 2th
2008
9:33 AM
Here is some perspective for you all. I take Singulair and do well on it and in ACTUAL studies it has one of the safest safety records. Understand that post marketing reporting does not mean there is a correlation between the event and the product. Throughout the life of a drug the companies must disclose any report of side effects reported to them REGARDLESS of causality. A popular antihistamine that is OVER THE COUNTER also has suicidal thinking/behavior listed in its post marketing section. However, just because patients who had reported having these thoughts while taking the product doesn't mean it was a result of the product! Maybe they had a depressive personality and were also on multiple other medicines to treat that. You must look at the "Adverse Reactions, Warnings and Precautions" sections of package inserts to see the side effects that were actually seen in studies. You can die from ulcers derived from over use of aspirin or ibuprofen. Decongestants can throw off your blood pressure and these events are documented in actual studies! Listen to your bodies when taking any med. If you feel differently report it to your doctor.
These are all drugs people, there are potential side effects. There are also side effects to those "natural" over the counter remedies that are not nearly as regulated by the FDA or studies by the drug companies.
To anyone out there who has experienced side effects to singulair timed to when you started it, talk to your doctor, stop taking it and see if it goes away. Same advice for any product prescription or over the counter medicine. Side effects can be a combination of many factors (what other meds are you taking?) But understand for many people this product is the safest and most effective treatment for them. The FDA and Merck are reviewing all information to see if there is any correlation to the reporting. But singulair been around for about 10 years and prescibed to billions of people and is known to be one of the safer medicines out there overall.
In between the legitimate posts on this site I get the sense there is a lot of ambulance chasing going on. People looking to cash in on this big drug companies. We want drugs, we want them cheap and with no side effects which is not a reality. Keep stepping up the regulation and make the companies hire more lawers to protect themselves and jump through even more hoops and see what happens to the price and access to new meds. Even better, see how regulation has impacted the development of new medicines around the world (here's a tip, it will dramatically decrease). Drug companies certainly aren't perfect but which industry is?
Please, when taking any medicine over the counter, prescription or herbal supplement listen to your bodies to see if the potential benefits of the product outway the risks or side effects. Report any changes to your doctor.
-- By bachaman | Reply | (15) replies | Send Private Mail
April 2th
2008
8:55 AM
My grandson was put on singulair when he was 2 years old due to severe asthma. He fell out a 2 story window at 2 years old. His behavior became more and more aggressive as time went on. At 3 years old, he rode his bike toward a car and said he wanted to know what it feels like to be dead. At 4 years old he tried to plug a broken cord into an out let to see if he could get electricuted and die. He has obviously been to counceling and diagnosed with ADHD and on more medication for that.
Let me add that his father was shot and killed, and his mother was incarcerated twice for over a year each time. He has lived with me since he was 8 months old. He has been through a lot in his young age, so most of it has the potential to be explained away by this.
However, if there is any chance that singulair has caused or increased any of his problems, you can bet I will take him off it to see if there is any improvement.
I'm a nurse, so I know that there are side effects with all medications, and that some people encounter the side effects and others don't. I don't think that singulair is a bad choice for everyone, in fact, it has been proven to be very effective, and as long as there are no noted side effects, or possible side effects. why would you worry. If there are questionable side effects-you certainly can't ignore them! The only true way to find out if your childs problems are due to singulair is to try to take it away-maybe only temporarily.
My instinct tells me to pull it-if there is no change in behavior with him off the medication, I'll consider putting him back on it if necessary for his asthma.
This registry is a place to share positive or negative side effects of using Singulair. If you directly experienced a side effect while using Singulair, then we encourage you to enter it here. Please note that entries here are the experiences of individual users, and in no way means that you or anyone else will experience the same side effect, since the same medication affects people in different ways. Please always contact your physician.
-- Please see our disclaimer
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August 27th
2008
7:29 AM
5 months Singulair free,yesterday was Matts first day of high school,his first day of regular school in 2 years as he could not leave the house or cope with out panic and fear.7am he awoke by himself and got ready for school,the only thing i saw in his eyes was excitement,he left the house smiling.While he was gone i passed and worried waiting for the phone to ring in case he needed me ,watching the clock and wondering how his day was. he arrived home at 2 thirty still smiling,i asked him how his day was he said fine, i asked him what they did he said nothing ,lol all is good ,thank you thank you thank you
-- By flindy | Reply | (3) replies | Send Private Mail