Singulair and suspicions

My daughter's doctor put her on Singulair just about a week ago. She had a persistent barking cough that would not go away, even after 3 weeks on Albuterol. Because the pill was so expensive (even WITH insurance it was $120.00) and I could not afford it, her doctor gave me free samples. I gave it to her for the first time last night. I was telling a friend of mine about how nice it was that my daughter's doctor gave me free samples and what a blessing it was. When I told her what pill it was she started telling me about what happened to some of her kids in her class (she's a teacher). I was surprised. She told me she didn't want to scare me, she just wanted to make me aware. I didn't get scared, but I certainly wanted to find out if what she was telling me was common or just rare in a few cases. I am one of those people that will ask advice of other moms, etc., but ultimately do my own research and find out for myself to confirm any suspicions. I know some moms who freak out over every little thing and take someone's word for it, even without doing their own research. I am not one of those mom's. So I Googled "singulair side effects" and found this site. I could not believe that everything my friend had told me has also been experienced by so many others on this site. Needless to say, I will NOT be giving her Singulair anymore. I am just so thankful that I had someone tell me about it BEFORE she had to experience some of the terrible things that other children have had to experience. It is unacceptable that this drug is allowed to be prescribed, especially for young children. I am going to look into a more natural way to help ease her sniffles and cough.

My daughter had been on singulair from the time she was 8 yrs old until she was 14. This will sound as if I am a horrible mother but I just thought that she was a raging bitch. Without my knowledge, she stopped taking her Singulair for a few months and she became a different person. She was so sweet and loving. One night she came in my room having an asthma attack and I asked her if she was taking her meds, she admitted that she had stopped taking her singulair and I got on to her and immediately got her prescription refilled. Within a few days of taking the singulair she turned into a raging, screaming emotional wreck, a TOTALLY different person. I feel so bad that for 6 years of her life I put her on medicine that caused her to have screaming, uncontrollable tantrums, and severe mood swings that caused her to be miserable. It does seem to be the only thing that effectively controls her asthma symptoms but the emotional havoc that is causes her and the people around her is not worth the benefits. We have an appt. with her doctor to see what other options we have.

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.

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 a lot - 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 A LOT - 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 ****** - I will be glad to share any other information.

LET'S RAISE AWARENESS TOGETHER and stop more damage from occurring. 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:
*******

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

FILE YOUR REPORT - TOO.

My almost 7 year old son was prescribed Singulair 3 years ago for severe asthma and allergies. It worked great--for a while. No hospitalizations, incidences of bi-lateral mucous plugs and pneumonia decreased, etc. I thought it was a miracle drug for him. This past summer/fall however, the nightmares, sleepless nights, multiple sinus infections, moodiness and mild anxiety, extreme hunger (he can now eat my 6'7" 260 lb. husband under the table and my son only weighs 52 lbs.), thirst, leg pains, reflux and very frequent complaints of stomach aches and nausea, etc. began. He was even admitted to our local Children's hospital in November for a severe upper respiratory infection that affected his asthma and blood oxygen levels and for the first time ever, did not respond to therapy. He was on oxygen for 3 days. Not realizing all this was likely due to Singulair, I took him to his ped. pulmonologist, pediatrician, ped. allergist, a ped. gasteroenterologist, and an ENT. None of our doctors suspected the Singulair--and I still have confidence that they are all good doctors. In December, he had surgery to cauterize the inferior turbinates in his nose and remove his adenoids to try to alleviate the sinus infections. At the same time, we had an upper G.I. series done to see if we could find what was causing all the stomach aches and reflux. The GI doctor found nothing. I am just sick to think that Singulair did all this to him, that we put him through surgery to try and "fix" the symptoms, and doctors and parents didn't know enough about the side effects of this drug to suspect it as a possible culprit!! I called our pulmonologist and pediatrician this morning to report my suspicions and took him off it. I sure hope his symptoms will improve.

Behavioral changes started when my son was 3 years old and on Singulair, 4mg chewables. He became more angry, irritable, and even stated a few times that he wished he were dead. He has had trouble concentrating and has frequent nightmares.

My 6 year old son has had all of these more or less. He has been on Singulair for about 5 months. We took him off last Friday when he started having seizures. It is only now that we are connecting the things he has complained about. He is still going through testing but everytime a test is done it is negative. He is in perfect health. The dr.s are stumped. What happens is, he smells a wierd smell. Then he sees lights. After this he has a bad headache and becomes weak so he lays down. Shortly thereafter he stiffens and starts shaking his arms and legs while clinching his hands. He also grunts and makes a buzzing sound and appears as though he only breathes out. the dr.s say it is not seizures but movement disorder and if it is Singulair it should be out of his system within 3 days... He is still having the seizure type fits and its been a week since we took him off singulair. He is still losing his temper and having horrible dreams as well. Cat scan was normal, EEG was normal, blood work is ok, they want to do an MRI but does this sound familiar to anyone?