Singulair Leg Cramps, Pharmaceutical Reps, Behavior Issues, Restful Night, Night Terrors

Posted over a year ago

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. ... more »

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!

5 Replies

Catherineevans - I work in the healthcare field and see the reps come and go, they are mostly young, female, dressed to kill and look like a model. They bring food all the time and their usual pens, gadgets, etc. Since this happened with my granddaughter I have written to my Senator and listed our complaint on the FDA website. I think your idea is great since we had her on it for 2 years with no questions being asked, we trusted the doctor who still says he sees nothing wrong with it for the majority of patients. I told him to go to this website and see the almost 2,000 stories mostly about children. This drug was not tested on children and yet they acted like it was so safe. God knows what's in this to cause such destructive, psychological symptoms. We also have no desire to put our granddaughter through a lawsuit but the pharmacuetical companies are playing russian roulette with our children and that's just too much to bear. Those drug reps are like actual drug dealers, they give their little inservice on how great the "new drug" is but they do not have medical or chemistry or any scientific degrees. This is appalling but they are getting away with it. They are making 6 figure salaries with no knowledge of what they are doing, as long as they look good and talk sweet the doctors order the drugs. The doctors themselves are usually too busy to read up on any scientific studies and they take the pharmaceutical companies word at face value. I guess we are writing from all over the country but we do need to organize!

Posted over a year ago - Reply

Flindy - i also wrote my congressman and ask them to look into this, you are right our drugs come every 3 months in the mail, in a plain white pill bottle had they put a big pink sticker on it telling me to read new updates,i would have, and would have taken my son off of it then, as far as the sleeping it took a good 3 weeks to straighten out, but it did, and for that i am grateful.

Posted over a year ago - Reply

Steddave - I wanted to reply to your post because I am glad their are folks out there who are being proactive about these issues. I have had major problems because of this drug and feel those responsible should face jail time for their crimes. If I were to smoke pot--which is harmless compared to this drug--I would face real time. These people are sanctioned by our government and offer those in power high dollar salaries if they play ball. After reading your post I am going to contact my congress woman and ask for investigations into these practices in the hopes that others don't have to go through the same nightmare we have. I have little hope of real change though as there is so much money to be made and many who are supposed to be overseeing things are more than happy to turn the other way and take that money. Like you, I have been telling everyone who is willing to listen about the problems with this poison. I wish I was able to get past this but I am, as I'm sure you can tell, quite angry about this and will seek legal action against these people. The only way things seem to actually get done in this country is to sue. What a sad state of affairs, but that has always been the way of it when you look at our history. Thank you for your inspirational post. Good luck to you and your family.

Posted over a year ago - Reply

Concernedcitizen - We need to be active in getting legislation that requires drugs companies to tell the truth and the whole truth about their medications to the doctors. The doctors needs to receive complete information on how the drugs work, every part of the body that could be affected, and the complete list of side effects. And, we need new guidance about how to protect our children against being over-medicated unnecessarily. Here is a good common sense idea from England. These people are right. If our children need medication, then there should always be review about how to get them off medication if possible. Should Preschool Wheezers Ever Be Treated with Inhaled Corticosteroids? Sejal Saglani1,2, Nicola Wilson1,2, Andrew Bush1,2 1 Imperial School of Medicine, National Heart and Lung Institute, London, United Kingdom 2 Department of Pediatric Respiratory Medicine, Royal Brompton Hospital, London, United Kingdom ABSTRACT The syndrome of preschool wheeze commonly regresses completely in the preschool years, but it may lead to prolonged symptoms and established asthma. Although epidemiological studies have established that there are several different phenotypes, it is currently impossible to assign the majority of wheezing preschool children to a phenotype prospectively. Bronchoalveolar lavage studies have shown an increase in total cellular inflammation in the youngest, symptomatic children, and that in older preschool children the neutrophil is the predominant inflammatory cell in the airway. Endobronchial biopsy studies have shown that eosinophilic inflammation and structural airway wall changes are absent in symptomatic infants but appear in severe wheezers by the age of 3 years. Treatment guidelines are not evidence based in this age group and frequently do not appear to consider either the likely pathology or the different patterns of symptoms. Pure virus-associated symptoms may be treated with intermittent β-2 agonist or anticholinergics by inhalation. If this fails, intermittent oral leukotriene receptor antagonists or short courses of very high dose inhaled corticosteroids could be considered. The role of oral corticosteroids is highly debatable in young children with virus-associated wheeze. Prophylactic therapy may be considered for chronic intermittent symptoms (interval symptoms between acute episodes). The choices are oral leukotriene receptor antagonists, or inhaled corticosteroids, which should be introduced in a three-stage protocol to avoid overtreating the child with evanescent symptoms. Because the natural history of preschool wheeze is one of improvement, treatment should be tapered after a period of stability. Unfortunately, neither corticosteroids nor any other currently available therapy modifies the long-term outcome of preschool wheeze. In conclusion, corticosteroid treatment may have a small role in preschool wheeze, in particular for those thought to have early asthma, but the uncritical application of recommendations that are appropriate for older children and adults with asthma has led to widespread overuse of these medications. There is an urgent need for better treatment of preschool wheeze. http://www.thieme-connect.com/ejournals/abstract/srccm/doi/10.1055/s-2007-981648;jsessionid=8E04D36394E8F8947A950943A3822D8A.jvm3

Posted over a year ago - Reply

Sp2008 - I am so glad things are getting better! If you haven't already come join us at http://health.groups.yahoo.com/group/Singulair_side_effects_friends/ Its a support/info group for members here!

Posted over a year ago - Reply

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