April 8th
2008
12:49 PM
Thank you so much for all the information! My son was prescribed Singulair pills this fall. He has been taking them for seasonal allergies and we had no problems. These were the sample chewable kind. Then came the pills... Unfortunately I did not see the news or read the article about the side affects of Singulair. Within 4 days my happy well adjusted 10 year old had serious sleeping problems along with stomach aches. He will wake up screaming and crying and cannot tell me what is wrong. He said he had a nightmare but doesn't remember what it was about.
My husband was away on a business trip when I started him on the medicine. He came back to a very unhappy and sleepy child. I asked my son what he was scared of and he asked me to tell daddy that he does not feel safe while he is out of town. He can't sleep unless he is by one of us. He's not safe. His bedroom is 15' from our bedroom! He loves his doctor and begged that I call Dr. Becky so he can talk to her.
I could not take this anymore and started thinking about what was wrong. I went through all his activities, friends he's played with, school problems, anything! Then it hit me, effects of Singulair!
Wow, what an eye opener. Fortunately my husband did not have him take it this morning. He will not be going back to this medication. Ever!
Thank you for the information once again. I hope everyone's child gets better. Everyone wants a happy well child. No child should have to go through this. They have enough pressure as it is without the meds making things worse.
Maeri
-- By mar7 | Reply | (7) replies | Private Message me
April 8th
2008
10:09 AM
Hi I am one of the Mom's who's child was affected by this drug.
After seeing so many similar stories and people asking what we can do,
I decided to create a support board. We can share info, stories and ideas.
If you have not already joined please copy and paste the following link
http://health.groups.yahoo.com/group/Singulair_side_effects_friends/
If you have any problem with the link you can email me at
staceynlilphil@yahoo.com
Wishing everyone happy days again!
Stacey
April 2th
2008
12:55 PM
I just contacted CNN to give them a tip/heads up to our message board so that they can consider doing a news story about this situation to raise awareness. Please send them your concerns and personal story to:
http://www.cnn.com/feedback/forms/form11b.html?2
If enough of us email them, they will start to listen.
Lourdes
Mother of Julian
(severely affected by Singulair use)
Suffered severe head drops seizures, obsessive compulsive and agressive behavior and night terror and hallucinations.
Repeating Our Story:
Repeating my post from way down below - IN CASE someone's child with these head drops is looking for someone with similar symptoms. WELL - Thank God! It is so about time! My son, age 6 now was given a very grim outcome/future by two top pediatric neurologists 2 years ago when he started having not the typical seizures we associate with epilepsy (no epilepsy in our family) - his head would drop forward - like his muscle tone in his neck would collapse for a few seconds and he would literally bang his head on tables (this was when he was 3.5 yrs old) - my husband and I always knew in our heart of hearts it WAS THE SINGULAIR he had been taking for 1 year after he had a bad coughing spell the year before - not formally diagnosed with asthma - but the pediatricians insisted it would only benefit him to continue to take it. When we noticed these head drops and his eyes would at times roll back in a matter of just a second or two and he was the most loving, caring and affectionate child and turned into an aggressive and obsessive compulsive child, who also began to have HALLUCINATIONS at night - he would sit up in bed and be seeing things and scream and cry, WE JUST KNEW IT WAS THE SINGULAIR and we stopped it COLD TURKEY on Oct. 31st 2005 - against the advice of the pediatrician. We took him to a neurologist and we told him about our suspicions about the Singulair he, just like the pediatrician brushed it off, but he had an MRI and an EEG - the MRI came back normal, but the EEG was devastating!!! We were told to get ready and pray alot - that our little boy would become a vegetable and would require assisted living for the rest of his life. That he had a rare form of seizure disorder for which there was no cure. We took him then to Duke University Hospital and had him checked by the top pediatric neurologist for a second opinion - he gave him another EEG and the diagnosis from this dr. was even worst - he would probably die an early age due to the severity of his condition and that he would lose all his motor skills and regress to a vegetable. Those were the worst days of our lives. We went back home and put him on anti-seizure medication and prayed ALOT - even strangers added him to their prayer list. Well, the seizures stopped in late January 2006 and just last March of 2007 he had another EEG and it was NORMAL - he was weaned off the anti-seizure medication and is thriving and his a great kindergarten student. Doctors cannot explain how he was cured - there is just no explanation. Aside from the faith we have in God's hand in this cure, we just KNOW THAT STOPPING THE SINGULAIR saved him from further damage and probably loss of life. He is the most affectionate and caring little boy you can imagine and I do want to point out that his speech was affected in our hearts, we know it was the Singulair but in the last year his speech has improved dramatically and he is doing just fine. My husband and I have been struggling to get awareness about the dangers of Singulair and children but the doctors do not believe us. At our last appointment with the pediatric neurologist, I told him, "one day, you will see that we were right about our suspicion regarding Singulair". I do want to add that it was just too much coincidence that when he went for his first EEG in Dec. of 2005, there was another little boy in the room next door that his parents suspected Singulair as the culprit too. If anyone wants to email me and if there is anything I can do to help with my own personal testimony - please email me starwedd2@aol.com - I will be glad to share any other information. LET'S RAISE AWARENESS TOGETHER and stop more damage from occuring. Remember, my son (post is far down) almost became a vegetable and was given a grim prognosis by 2 pediatric neurologists including the top one at Duke. No cure we were told. But we always knew it was Singulair. He was cured and there is no medical explanation. Had he continued to take it he would be the vegetable they had predicted he'd become. Okay, I just emailed DATELINE NBC - please be sure to submit your children's adverse reactions story to them - here is the email address: Dateline@NBCUNI.com I also tried emailing ABC for PrimeTime and 20/20 but they use regular snail mail for story suggestions - please do your part and mail out your story to them at: To submit a story idea to one of the ABC News shows listed below, write a single page letter including your name, phone number, and address. Include photocopies of backup information. On the outside of the envelope, write "Story Idea." If a producer is interested in your story, he/she will contact you. Here are the show addresses: 20/20 147 Columbus Avenue New York, NY 10023 Primetime 147 Columbus Avenue New York, NY 10023 Together we will do something to help avoid more tragedies I went ahead and reported our experience online to the FDA: https://www.accessdata.fda.gov/scripts/medwatch/medwatch_online.cfm
-- By lulycelsa | Reply | (1) replies | Private Message me
March 31th
2008
11:10 AM
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.
-- By lulycelsa | Reply | Private Message me
March 28th
2008
11:35 AM
Okay so I'm reading all of your postings and I about to totally flip out. My 6 yr old was diagnosed with a very mild case of asthma (an occasional cough that got worse with colds) when he was around 3. The doctor prescribed him Singular and I'm almost positive they started him at 5mg and now I'm reading that it's not recommend at that dose until 6yrs. He is very prone to severe mood swings....one minute screaming "I hate you!" and making commits like "I'll get a knife and kill myself!" to acting like there is nothing wrong and the previous outburst had never occurred. As a rule he is an extremely lovable kid but has these sudden outbursts. Having said this he has been off the medication since October with out any noticeable change. My concern is that if this medication has these types of side effects could it have long term or permanent effects on such young and still developing children. Has anyone else out there had their child off the meds for more than 6 months and not seen improvement in their behavior?
-- By poohina | Reply | (2) replies | Private Message me
February 12th
2008
10:26 AM
I'm not sure if this is related to Singulair 5mg. chewable, but now that I've been reading everyone's experiences, I fear that it may. My 7 yr. old has been taking Singulair 5mg chewable tablets these past 2 years. He takes it during the months of Sept. to October. His pulmonologist has not determined whether or not he is an asthmatic or not. When he would get a common cold, he would almost always cough as if he had the croup and he would need to use a nebulizer with Pulmicort. The Singulair worked great. He hasn't needed the Pulmicort for almost a year now and colds this year were limited to two minor sniffles.
My son just started experiencing sharp pains on the left side of his chest. They would come quick and hard and disappear within 2-3 seconds. We immediately rushed him to the Emergency Room. He had experienced 5 quick episodes during Sunday, February 10th. The first 3 were spaced out about 20 minutes apart. the fourth was about an hour apart and the 5th and last occurred 2 hours after. The ER conducted a chest x-ray and an EKG, Neither showed any abnormalities. He felt a quick pain today, which is Tuesday. He has an appointment with a cardiologist on Wednesday morning. Now that I have read a number of postings, I am frightened. My son has not only experienced pains in his chest on the left side, but night sweats. occasional leg cramps. nightmares and is extra sensitive to emotional situations.
I'm pulling him off Singulair. Last night was his last dosage.
June 11th
2007
3:39 PM
My daughter just turned 3 yrs old, and was put on Singulair about a month ago. In this time I have noticed she has been stuttering. She is 3 yr old that has a huge vocabulary & is very smart (if I do say so myself). It is very odd to me that she is stuttering. In asking the DR, he did not feel it was medication related. But may I also add that she is fully potty trained & in the last few weeks has been wetting the bed every night.
Is anyone else's child stuttering?
-- By alyssasmom | Reply | (1) replies | Private Message me
August 19th
2008
10:58 PM
My daughter is 12 and just started taking Prednisone 5 days ago (40mg - she weighs 105lbs) .. I've been watching her salt intake - tonight she looks a little pale to me - is that a side effect? has anyone else experienced that? She has Ulcerative colitis (2 years this month) - started w/asacol, colazol, 6mp (gave her pancreatits) now is on methotrexate since Nov '07 - was put on prednisone because of a recent flare - to me none of these medications have put her into remisson - always goes 3-5 times a day - sometimes blood - sometimes not - don't know if prednisone will help - so afraid of the side effects -
-- By jmmm70 | Reply | (9) replies | Private Message meDr. said if it doesn't - Remicade will be the next option - after that surgery - only thing - my daughter has never complained of pain - except when she was on 6mp -
sorry for babbling - just so scared...