My son was gasping for air and in my attempt to help, I poisoned him. There was no skull and crossbones symbol on the bottle like one would expect for such a potent substance, but rather, the name “Montelukast.” This small, pink, chewable tablet that is deemed a wonder drug by millions suffering from asthma and allergies reduced my full-of life, passionate eleven year old to a crippled, lifeless shell.
I have been clawing my way up a mountain, desperately searching for the reason why my son Nicholas experienced such an extreme adverse reaction to this commonly prescribed medicine Montelukast (a generic for Singulair). Exhausted and bruised, I am now standing at the top screaming our story to make sure no parent ever has to endure the same torturous climb.
After 9 months, we stopped giving Nicholas his asthma medicine, Montelukast, because we discovered that the side effects included neuropsychiatric symptoms. We were hopeful this was the reason Nicholas had been getting bouts of sadness for the past few weeks. Stop the medicine, stop his sadness. Easy enough, right? Little did we know our worlds were about to be turned upside down. Within days, Nicholas became so depressed he was no longer able to function: he could not eat, he could not sleep, he could not go to school, just cried for hours. Then the panic attacks started. For hours, Nicholas would get lost in his own world of screaming and thrashing with the only escape being sheer exhaustion and sleep. But sleep brought horrific nightmares. How such an innocent mind can create such terrifying dreams is beyond my comprehension and his descriptions will haunt me for the rest of my life. Even worse, Nicholas started to have hallucinations: both auditory and visual. We quickly realized that we could not protect him from his own mind. We were powerless and it was suffocating.
We brought him to the emergency room for a psychological evaluation, then to psychiatrist, psychologist, social workers, pediatrician, rheumatologist, immunologist, pulmonologist, chiropractor, and genetic doctor. ALL assured us this was NOT an adverse side effect of Montelukast, since it should only take 5 days to be out of his system. After other possibilities were explored (i.e. infections, trauma, abuse, autoimmune disease, sleep apnea, family history) and no viable answer was uncovered, the solution was to start psychotropic drugs. But we didn’t want to mask the symptoms; we wanted to uncover the root cause and fix it! We realized we were on our own. Scared and desperate, we spent every waking and what-should-have-been sleeping hours trying to figure out what happened to Nicholas.
We found a Facebook support group with nearly 4,500 members describing their adverse side effects of Montelukast. Tears poured from my eyes as I read about nearly identical reactions to Nicholas’ including depression, anxiety, night terrors, aggression, hallucinations, insomnia, paranoia, panic attacks, and sadly, several accounts of suicide. We also discovered that Nicholas has a variation on two genes (CYP2C9 and CYP2C8) that are needed to properly metabolize this medicine. The pharmacogenomic team at Boston Children’s Hospital believes these genetic variations played a part in Nicholas’ adverse reaction to Montelukast.
Sadly, nothing will change until scientific studies are initiated to identify the mechanism for the neuropsychiatric side effects and their long-term implications. This will never happen unless every sufferer files an adverse event report with the FDA.
In the meantime, we continue treatment with a Functional Medicine doctor that used a full-body detox program to remove the toxins from his system and supplements to help restore the neurotransmitters in his brain. We still have a long road ahead but are seeing our son slowly come back to us.
The memory of Nicholas suffering from these debilitating side effects is seared into our minds forever. We cannot go back to change the beginning of our story but we can change the ending. Our hope is to not only spread awareness to Montelukast users but to ignite change to warning labels and to scientific research. Please help us spread awareness by sharing our story.
My 4 Year old girl only took this medicine for max 5 weeks, but when I took her off it. She started the gasping for breath. She got blue lighted to hospital one day as we thought she was having an asthma attack. All tests were clear, after getting no answers. I looked into the side effects of Montelukast and possible withdrawels. I was horrified, so Took her back the doctors. He has diagnosed it as pop corn lung. She is also suffering with night sweats, bad dreams and small cases of insomnia. Ahe has npt taken this drug for 2 months now.
Hi all,
I found this page and wanted to add something. A few years back I had started taking Pepcid AC (Famotidine) and was slowly loosing my mind. I started waking with heart pounding throughout my body and paranoia. I stopped taking it and had crazy insomnia where I could not stay asleep for more then an hour for 3 weeks or so with tremor shaking when waking up. Crazy ringing in ears and all of this has slowly gone away after a year and a half. The intense symptoms took a few months. I too had the Doctors tell me it couldn’t be because drugs completely get out of your system after a week. NONSENSE! I am sure with proper treatment and detox therapy I could have come back much sooner. I believe the brain is effected the same way your son was hurt by many many different drugs that damage the serotonin and receptors. I had one Doctor ask me if i had Native American ancestry and I do (Great Grandmother). She mentioned certain lineage has enzyme and gene defects that dont metabolize medication like others. So many people are having mental illness from simple things like Pepcid or your allergy medication its unbelievable. Stay as holistic as you can!! God Bless!!
When I was in practice, I was confronted with a 12-year-old girl with asthma. She was so sensitive to mattresses that she had to sleep on a plastic lawn chair. When I carefully examined her, I found that her body was covered in “goose bumps”, a physical sign of increased activity of the sympathetic branch of the autonomic (automatic) nervous system through the “fight-or-flight” reflex. Since the bronchial tubes are innervated by the ANS, I concluded that her asthma reflected mental stress and brain energy deficiency. I suspected and proved that she was deficient in thiamine and started repeated doses of mega-dose thiamine. Her asthma stopped in its tracts and when I saw her 2 months later, she was asthma free. She is now a practicing lawyer and has remained free of asthma. So, asthma appears to have at least one simple, treatable cause.
My daughter who is now 9 started taking this intermittently when she around 6. She took it whenever her symptoms would worsen. I got her prescription refilled in March 2021 as she was having some issues…a few months later she turned into a completely different child, even after we have taken her off the medicine. She has complete meltdowns, uncontrollable rage, says the meanest things, describes good vs. evil in her head, now has OCD tendencies, among others. I have been researching day and night to try to find answers for my little girl. She started therapy and I am afraid the next step will be wanting to put her on meds, which I don’t want! Please someone help me get my little girl back!!! Laura, I have desperately tried to find a way to reach out to you! Please tell me what the next step to take is!
I had the same experience with Montelukast. It took me two years to get my life back. Trying to figure out how to not have bugs crawling under my skin and how to get out of this nightmare has been my obsession. I stopped taking all pharmaceuticals. I took activated charcoal. Then I took Nigella Sativa, Berberine, and used Thymol and Oregano oil on my skin to sooth myself. I discovered that Montelukast causes certain infections to proliferate because it inhibits Leukotriene. The sensation of bugs crawling under my skin was from a fungal or bacterial infection in my brain. Montelukast inhibits the production of Leukotrienes which help our bodies maintain their protective mucosa layer so we are more susceptible to infection when taking it. This leads to a higher chance of a brain infection as well. Nigella saliva is safe for children, will kill many things we could be are infected with, and does not create an imbalance within the biome. I am a scientifically minded person. Look it up on Google Scholar. It is amazing stuff. In 5 hours, I went from thinking that I was going to die of a rare brain-eating amoeba to getting my life back entirely! Lol! I have not interest in this stuff for any reason other than the fact that it gave me my life back. Thank you!! Hugs!!
This is amazing. I have asthma but it comes and goes and changes, symptoms come and go. The doctors throw inhalers at me, sometimes they worked, other times they made it far worse,now they have given me monkeluast, for a while I felt terrific, no breathing or coughing problems, all mucus gone, far more energy but now feel worn out and muscles hurting all over, coughing, no energy whatsoever. I also noticed that my blood pressure has gone down a great deal which had never happened before. So now I have started to go without my montekulast and see how it goes. Wishing everyone here health and happiness and thanks for reading this.
I am so sad to hear all your stories I am a 44 year old mother and took Montelukast for 8 months and I seriously thought I was going crazy, depression, anxiety, vivid nightmares, scared. I happened to read the side effects and bursted out in tears, I was so glad to know why I was feeling the way I was. I have been off this nightmare of a medicine for a year and a half and am back to my regular self. Yes it helps asthma but the side effects are not worth it. I hope these stories go viral so parents are aware of the side effects this drug.
Brenda, whenever an adult describes their experience with the neuropsychiatric side effects associated with montelukast, it heightens the need to help children that are not able to articulate what they are going through. Although the post-marketing reports of these side effects have been disclosed in the Prescribing Information for years, they are often dismissed by the medical community because there is no “proof” the medication is the cause. However, in September 2019 the FDA held a joint committee meeting to once again review the safety signal for these side effects. In their Briefing Document as well as during their presentation, they acknowledged that this medication DOES act directly on the brain not just the airways like it has been marketed and prescribed for the past 20 years. Distressingly, the FDA has not explicitly indicated its intent to communicate this new scientific information with the medical community and general public. I started a Change.org petition to encourage the FDA to release the information they disclosed during this meeting immediately. Please consider supporting this petition but more importantly, take a minute to read it to understand the scientific findings the FDA MUST release. http://chng.it/Z8MnBD6gQj
Hi Laura,
Thank you so much for sharing your son’s story. I am trying to find help for my son. He has been off of Montelukast for 5 weeks and 2 days. He has so many neuropsychiatric symptoms. I did not wean him off, I just took him off cold turkey as you did when I discovered the possible side effects online when I was trying to figure out why he was having terrible nightmares and insomnia. He now hears voices and is really, really, struggling. I have had a phone consultation with Dr. Higgins and have great hope that there is help for my son; however, I am wondering if I can get the same testing and treatment that she would provide by using someone close to home that we can visit in person. I am wondering what exact testing I should ask for? I read about the urine test for neurotransmitters. Is there a specific list of neurotransmitters I should ask for? And then whatever he is deficient in, we can ask for them to treat that with supplements? And then a full-body cleanse/detox, possibly the DesBio?
Thank you for any information you can provide. And thanks for sharing your story so I don’t feel alone!!!
Hello, Im so sorry to hear about your son, and so relieved to finally be sure that that was the cause for my daughter. She was on Monteleukast for a year, and she was severely depressed. She almost tried to kill herself. I thought it was the asthma, and I didn’t understand my daughter anymore. She complained of having nightmares too and hearing voices. But I thought she was just being over dramatic. I’m almost in tears as I write this. I stopped Monteleukast 6 months ago. My daughter is way better, but we are not completely out of the woods. She has had symptoms of severe asthma for 3vyears.She is 13 years old and she still becomes moody on occasion, I thought it was the fact that she was becoming a teenager, but I know the depression lifted when we stopped that horrible drug.
Hi Laura,
It is crazy what you and so many people have been through with their kids and this medicine. My daughter has been on it since she was 5 and is now almost 10. We didn’t notice she had any changes in behavior, assumed any ‘over emotions’ were just being a kid, a phase. I just read about behavioral side effects of this drug 2 weeks ago so after talking to her doctor, we stopped it 5 days ago. Her doctor said try stopping it and if asthma worsens, start it again, no harm done. She doesn’t believe she has any behavioral problems because, she said, ‘you would see those symptoms almost immediately.’ But that’s not what I am reading, it seems it can happen over time of taking the medicine. Her allergy asthma seems to be doing fine with Allegra and Flonase without singular. But my concern is we didn’t taper singular and I’m scared she will suffer longer and more greatly from not tapering. Her behavior while on the med was lots of attitude and talking back (normal for a kid at any age, but really normal for 8 and 9 year old), but she would get really upset crying about how she doesn’t have anyone for her, no friends, school sucks, everyone in the world sucks and she doesn’t want to ‘do it’ anymore. 5 days off singular and she broke down about school, friends, all the things she doesn’t have that others do, how her life sucks and she sucks and she doesn’t want ‘to do it anymore.’ She asked for a therapist to talk to, not the first time either in the last few years. I feel like her doctor would write this off as normal almost tween girl behavior but I’m scared it could be singular behavioral changes and could last months and months!
My questions for you- should we taper singular, and can we still 5 days off of it?
How do you know if the behavior is singular and not just her being a sensitive, attitude-y girl? I certainly was like that as a kid.
Side effect or personality? That’s the million dollar question! In order for a doctor to claim a medication definitely or possibly caused the symptom they typically look for 2 things: the symptom started when the medication was started and the symptom stopped when the medication is discontinued. However, this is not always the case when it comes to the effects induced by montelukast. Both the World Health Organization and the FDA acknowledged the delayed onset of symptoms and we are fighting hard to have the potential for post-discontinuation symptoms recognized as well. One of the reasons these adverse reactions are thought to be “rare” is because parents struggle to identify the symptoms as side effects because like you they question if its just part of growing up, or a phase, or situational, or hormonal, etc… After hearing other stories that were eerily similar to ours, understanding that the FDA recognized many of the symptoms as side effects in the drug labeling, and uncovering genetic variations that are believed to cause impairment in metabolism, I made the conclusion it was the medication.
As far as tapering AFTER you have already stopped for 5 days, I would advise against it. Many report that symptoms actually worsen once they restart the medication. I understand how terrifying it can be to not know what her recovery will look like so I wanted to give you a few tips that seemed to help us. First, I think it is crucial that your daughter understands this medication had biologic effects on her brain and it will take some time to reverse. She is not alone in feeling everything she is feeling right now. Explaining that you believe those feelings are drug-induced, might give her some relief and hope for recovery. Second, diet is key! Try to eat as clean as possible eliminated or limiting processed foods, artificial colors/preservatives, etc… Third, she should get daily exercise and plenty of rest/sleep! Lastly, try to avoid stress as much as possible.
Please feel free to join the Montelukast (Singulair) Side Effect Discussion and Support Group on Facebook. This group has a lot of information and support from others that have been through the same with their children.
Laura – thank you for sharing your story, fighting for your son and spreading awareness. We are in the midst of this with my 9-year old son. I’m praying God can lead us to healing and help. I’ve been in touch for an appointment with Dr. Higgin’s office. This is a nightmare. Thank you.
Lara, I am so sorry to hear about your son. Please remember you are not alone and there is hope for full recovery. There is a Facebook group called “Montelukast (Singulair) Side Effects Discussion and Support Group that has a lot of information and support available.
Hello
I needed to urgently. Know pls
My son has been in this for about 3 weeks now. It *seems*to have been helping him but I read of the side affects and therefore stopped it to avoid any possibility of any negative side effects of long term use
This is the first day he hasn’t been taking it (did not give him last night’s dose) and he is very aggressive, moody and sensitive.
My question… Is this due to him stopping the tablet?
How long. Does it take for the tablet to be removed from. The body?
If he was better on the tablet should. I get him back on?(I don’t want to do. That) Why now after he’s left it?
Also his throat symptoms have began starting up a little more after I left it…. I’m. Worried what alternatives are there?
Yes many report experiencing new or worsening symptoms such as being aggressive, moody and sensitive as well as anxiety, depression, hallucinations, AFTER stopping the medication. This scary experience can last for days, weeks, or months AFTER the medication is discontinued. While the medication should clear the body after only 5 days, the effects it had to the brain’s receptors, neurons, and neurotransmitters may take some time to reverse. My best advise I can offer is to make sure your son understands that his brain needs time to heal from the unintentional effects of this medication. He needs to understand he is not “going crazy” and he is NOT alone…there are many other children that are going through the same exact thing. To help the brain recover, he needs to be as healthy as possible…eat healthy (eliminate as much processed food, artificial dies/colors, sugar, MSG, etc), get plenty of rest, drink lots of water, minimize stress. If symptoms continue to intensify please consider PANS/PANDAS which has very similar symptoms to the post-discontinuation period of montelukast. Please know that many children become hypersensitive to other medications after taking montelukast so this may be a good time to explore his asthma triggers – mattress/pillow slip covers, air purifiers, washing hands/face, changing clothes, rinsing his sinuses, and research how foods (dairy, wheat, refined sugars) can make asthma worse. Lastly, I would not suggest putting him back on the medication as many report the stopping/restarting can make the symptoms worse.
Please know you are not alone. Feel free to reach out to me with any questions and please consider joining the Facebook group called “Montelukast (Singulair) Side Effect Support and Discussion Group where you will find a lot of support AND research regarding the post-discontinuation symptoms of this medication.
Hi everyone, I just wanted to quickly share with you my scary and alarming experience that I had when my son(8 yrs at the time) was prescribed singular. In retrospect I do regret not filing a lawsuit, but all my energy was devoted to the situation at hand. A healthy smart child who was put on singular out of nowhere developed tics and awkward movements- scared the hell out of me!! Took him to hospital, MRI’s, EKG’s, neurologists, developmental physicians, etc. To make a long story short… On my own I stopped the singular and almost immediately, well within a few weeks ALL SYMTOMS STOPPED AND NEVER RETURNED.
I am sorry to hear that your son also suffered these terrible side effects. It is heartbreaking that parents have to fight so hard, ALONE to help their child. If you haven’t already, please file an adverse event report with the FDA: https://www.fda.gov/medwatch
Also, there is a Facebook group that not only supports people going through similar experiences with this medication but also is advocating for change! Please feel free to join: Montelukast (Singulair) Side Effects Support and Discussion Group.
I would like to share what we are currently going through with my six year old son and monteluskast and would love to hear any helpful tips as we are now trying to make this wrong right.
My son was referred to a pediatric pulmonologist and was seen for the first time February of this year (2018). We left this appointment with a prescription for monteluskast. He was to take this with his other medicines which include flonase, cetirizine, and flovent inhaler. His asthma was finally under control. I was ecstatic thinking that now that my baby felt better his grades would improve at school. He is repeating kindergarten due to excessive absences bc he was so sick the year before. Fast forward to a couple of months ago. He has continued to fall behind and started acting very aggressive, punching himself in the face to the point that he has bruises, telling me he just wished he was dead, and that he hated himself. The school psychologist was brought in and performed a number of tests in hopes to figure out why he was not retaining the information being taught. Her conclusion was for me to take him to his pediatrician to rule out anxiety and depression. He saw his Dr the next day. This was an appointment strictly for his behavior/attention problems. We went over the list of medicines he was on and walked out with a referral to a counselor and a follow up appointment in January.
I noticed the warning on the bottle yesterday about depression and change in behavior. I feel as though I have failed because I didn’t notice it before. He has been without the medicine for a week and his attitude has improved he is happy again, no longer hating life like he was. I am beyond mad and upset that out of all the doctors he has seen no one once brought up the side effects of this medicine. I am upset that his pediatrician didn’t sound the alarm when we were there not even a month ago for an appointment on his behavior alone. We went through his list of medicines that he was currently taken. Not once did anybody say this could be the problem. My six year old son now has a mental health file open, has been ostracized, criticized, and punished for actions that were out of his control.
Where do I go from here? I read briefly about detoxing the poisons from his body. I will be forever grateful for any pointers and helpful info to help get my beautiful child back to the happy loving boy he was before this horrible medicine wreaked havoc on his brain.
My heart aches to hear your story Jessica. Honestly, its been over a year now since our experience and the guilt is still there…not sure it will ever go away. Instead of letting it consume me, I use it as fuel to keep advocating for change. The truth is until doctors are provided with indisputable, scientific evidence for the mechanism of these neuropsychiatric side effects patients’ mental health problems will not be recognized as side effects of the medication and other diagnosis/treatments will continue to be explored. Doctors rely on the Prescribing Information which indicates there is only minimal distribution across the blood-brain barrier. However, in recent years researchers from around the globe have been evaluating the biologic effects of montelukast on the brain. As parents, we gave our children medication that was marketed as an asthma/allergy medication but yet are left unaware that it is actually crossing over the blood-brain barrier in quantities significant enough to have biologic effects? Its not right. The FDA has relaunched a safety evaluation for this medication and I am hoping that their review includes the plethora of studies showing the biologic effects on the brain. Please help me let them know that this is not as “rare” as they believe by filing an adverse event report at http://www.fda.gov/medwatch
As far as helping your son recover, I would first suggest joining the Facebook group called Montelukast (Singulair) Support and Discussion Group. This is a great source of support for you to realize YOU ARE NOT ALONE as well as a great source of documents/research for your review. Second, you must make sure he is as healthy as possible – plenty of rest, exercise, and diet – try to eliminate processed foods, artificial colors/preservatives, limit sugar, etc… Support him and show him as much love/patience as you are capable of giving! Lastly, please feel free to contact the doctor we used (she works remotely) Dr. Evelyn Higgins http://www.doctorhiggins.com 631-438-6721. If you decide not to go with her but start a detox program please make sure it is a FULL BODY and not organ specific!!
I hope this helps…I am here if you need more info so please reach out!
Laura, I am currently going through similiar experiences with my son right now. How is your son is he getting better? Did he have severe asthma or other health issues at the time?
Amanda, I am so sorry to hear about your son. My son is doing much better both emotionally and asthma management. Yes, when we started him on montelukast his asthma was considered “uncontrolled.” As you can imagine, we were scared to discontinue this medicine that was a game changer for his asthma. However, we made some lifestyle changes including diet, air purifiers, frequent vacuuming, mattress/pillow slip covers, daily saline sinus rinses and have observed significant improvement.
Please know that the recovery period after stopping montelukast can be tough. Medicine induced changes to the brain, whether it is for therapeutic benefit like in psychotropic drugs OR as an unintended side effect like in montelukast, may take some time to reverse. Its important to make that recovery process as easy as possible – eat healthy (eliminate processed foods and artificial colors/additives), get rest, and exercise.
Please consider joining the “Montelukast (Singulair) Side Effect Discussion and Support Group.” It is a great resource of information and support by thousands of others that have been affected by these side effects. Please feel free to continue to reach out to me and know you are not alone.
Just checking in… has your some made a FULL recovery?
Has anyone reported irreversible side effects?
Our daughter experienced sides after 28 days in the drug. She’s been off for 3 days now and already seems to be getting better.
Hi Terry. Yes my son has made a full recovery. Sadly, he suffered immensely for 3 long months and then had some lingering emotions/behaviors for a few months after that period. Not everyone suffers like this though so I am hopeful that your daughter will continue to improve each day. Please consider joining the Montelukast (Singulair) Side Effect Discussion and Support Group and most importantly, please let the FDA know about her side effects by filing an adverse event report http://www.fda.gov/medwatch
If I may share a short story about Montelukast. I am an asthmatic and have been taking Montelukast Sodium for many years–this is brand name Singlulair. Than one day I too was switched to the generic Montelukast and got very ill. It took me some research to find out that Montelukast is NOT the generic form of Singulair!! I wrote an article about it: https://cluelessdoctors.com/2014/07/18/brand-name-versus-generic-drugs-are-you-in-danger-of-clueless-doctors/
The generic for Singulair is Montelukast Sodium. The chemical formulas are very distinct, and while many people tried to convince me that the “sodium” was there as a byproduct, or that the body has enough sodium, etc., that is all incorrect. When the generic name lists “montelukast sodium” for the brand name at the FDA–as it does–the generic is the full chemical formula of montelukast sodium and not just montelukast. The two drugs do different things in the body and also, the generic montelukast is not coated properly so it dissolves in the stomach rather than in a later step. Singular brand name product is coated so that the metabolism is not in the stomach.
I contacted the manufacturer of the brand name and was able to force my healthcare provider to change their generic to the proper formulation, though I am given the brand name. Please always check the chemical formulas for brand name and generic!! The active ingredients must be identical.
Thank you for sharing your experience and excellent easy-to-follow article. I hope you don’t mind me asking you some follow up questions. After reading your post, I confirmed with our pharmacist that my son was taking Montelukast Sodium chewable 5mg. Over the 9 months of treatment no changes were ever made. This medicine worked wonders for his asthma but had horrific neuropsychiatric side-effects. You mentioned the importance of the coating; would that apply for the chewable? This topic often comes up on the support group, “Montelukast (Singulair) Side Effects Support and Discussion Group.” Although I do not have an official count, it appears that the adverse events are experienced from both generic and name brand. Lastly, I read in the comments that you competed genetic testing. I would be so curious to see if you have any variations on the 3 genes (CYP2C8, CYP2C9, and CYP3A4) needed to properly metabolize this medicine, which can only be found in the raw date section of 23&me.
Hi Laura,
I find that my variant information for CYP2C8 is missing from my 23andMe (it is maddening how many things are missing!), but I do have some variants for CYP2C9 and have no variants in CYP3A4. It is important to note a couple of things about SNP variants: variants don’t necessarily mean bad things. For example, the “wild type” (original, unchanged) SNP for lactose is “lactose intolerant” and the variant would be “lactose tolerant” (lactose tolerant was a random mutation about fifteen thousand years ago, so the wild type is lactose intolerant) and so sometimes a variant is a beneficial one. Thus, looking only at variants doesn’t necessarily tell much.
Furthermore, having a particular variant, even if homozygous–meaning both copies have been inherited or mutated–still does not mean that the gene is expressed. Genetics is always a potential and not a given. Lots of epigenetic factors must act on a gene as well to switch the gene on. With this said and done, with as little variance as I show, for example, on every report I get, among the first ones is that I am a fast metabolizer and so many medicines either hurt (SSRIs, all time release medicines, warfarin, SSRIs, and other serotonin mixes) me or don’t work for me (opioids, anesthetics). I have awoken in the middle of surgeries so yeas, there are problems, even though I show no variance in all of the gene SNPs under question. This makes me think that there is much more to this than variants and perhaps the lack of variants can matter more in some cases.
Singulair is known to have the possibility of adverse reactions, which are likely to be more severe in a child than in an adult. I personally have not experienced any of what your son has (I am not member of that FB group you mention). I must be very lucky for not having any side effects but I have a trick up my sleeve and that may be my savior, and for your son as well.
Since I am a migraineur and started to have lots of health issues, as a scientist I attacked the migraine problem–you can read many of my articles on that and nutrition subjects at HormonesMatter and also in a book. In the process of discovery of what actually causes migraines, I decided to change my nutrition completely, and have been on the low carb high fat (LCHF) diet (50-70 carbs grams a day, no grains of any kind, no sugar or other sweeteners, increased fat but no oils, only animal fat), and lots of nutrition-dense food gave me my start to recovery. It was interesting to find that my asthma nearly completely vanished and all allergies completely disappeared starting 3 months after I quit all grains (by then I was already completely sweetener free for 2 years so the only change was cutting grains out of my life). So my asthma and all allergies, of which I had plenty of, and many other symptoms, such as arthritis and others, all left me after grains were stopped. Asthma is an autoimmune disorder and can–in theory–be reversed or put to remission, provided the irritant causing the immune reaction is removed.
Today, if there is any grain (not just glutenous but any grain, including rice, corn, and oats too) of the smallest dust on any food I bite into, I get an asthma cough from the first bite! This is very important because what it tells me is that I can start reducing my Singulair and see if I can be completely without it–this is something I am just now going to start since I had other medicines to titrate off of that I no longer needed. I would suggest that you try the nutritional change with your son. Other typical foods that can start an autoimmune reaction leading to asthma are: eggs, dairy, and peanuts. Grains need to be stopped for life–grains are not food for humans. They are merely autoimmune targets because their protein adheres to human protein and the immune system must kill both to get rid of grain proteins. I am not talking about gluten but all grain proteins, all of which fall into the prolamin family. Prolamin has a high content of proline and glutamine (these are amino acids that are used to biosynthesize other proteins—-so they have critical functions). In wheat, these prolamins are called gliadins, while in other grains they have mostly unheard of Latin names, such as zein of maize (corn), hordein of barley, and secalin of rye. See the complete (rather complex) article here. So all grains need to be stopped for life. I would try cutting back eggs, dairy, and peanuts for 2-4 weeks and then adding them back one at the time per week. If his asthma worsens, that food needs to be removed for perhaps life.
There are other foods that can cause trouble because of the chemicals in them. Beans, for example, have lectin, a potent toxin, which can only be cooked out of beans by pressure cooker. Many vegetables, such as spinach, broccoli, and similar, can be asthma irritants with their chemicals (they are for me). So you may try some vegetable elimination as well and see if he improves from that too.
Another thing to try is the ketogenic diet. This diet is used for children to cure them from epileptic seizures and since migraines are of the same nature, I thought I give that a try. For me it was a life saver in many ways and it is extremely beneficial for children, as it is brain regenerative. As he gets older and can do several days of fasting (not recommended for children who are underweight and medical supervision is important), asthma actually reverses from a fast. The length of fast is something you need to discuss with a ketogenic specialist. There are very specialists few around but it is increasing in popularity. I have been on the ketogenic diet now for 3 years and will probably never ever leave it. And because it is regenerative, it places the body back into its best shape and form. It is possible that your son will be able to go without Singulair. It is a worthy try!
Good luck and let me know how things work out! 🙂
Angela
Hi Angela,
I completely understand what you are explaining about epigenetics and how expression is perhaps more important than a variant. The best summary I read about this concept is Dr. Ben Lynch’s explanation of how a gene can be “born dirty” (variant) or “acting dirty” (expression). In this case there are several pharmacogenomic studies showing these specific P450s cause impairment or variability in the metabolism and responses to drugs including adverse events and desired effects. In fact the drug labels for these medicines have been modified by the FDA to describe the evidence and identify the specific tests needed for selection of those patients with certain pharmacogenomic biomarkers. This can be viewed on the FDA’s “Table of Pharmacogenomic Biomarkers in Drug Labeling.” I understand that a genetic variant is not the only reason WHY some people experience the adverse events from Montelukast but strongly believe a pharmacogenomic study specific to Montelukast must be initiated. This medicine gives so many allergy/asthma sufferers a quality of life they wouldn’t otherwise have. How great would it be if we could identify those individual patients most likely to experience adverse events and either exclude them from being prescribed the medication or regulate dosing guidelines? The idea of “personalized medicine” … it might be able to help other families not endure what mine did!!
Thank you also for all your advise about diet. I could not agree more. We were terrified to take our son off this medicine because without it his asthma was considered uncontrolled. However, after we completely changed his diet I am relieved to report that his asthma is almost non-existent!
Thanks again
Laura
Hi Laura,
That is terrific news about your son’s asthma being under control from dietary changes! I totally agree with what you write about Singulair and the side effects–and indeed, it is listed on the FDA’s website so there is no secret about it. It is unfortunate that genetic testing is not done until trouble arises (and even then it is not done! It is usually private funds that cover that for those in the know). It could be used as preventive; however, no medical institution or associated field can make a living on prevention–hence the trouble.
Personalized medicine is what we can do with nutrition. You could see the changes for the better in your son’s asthma and I could in my asthma and many other health conditions I had that all vanished. However, if a doctor advises you of nutritional change, he/she may lose their license, so they cannot. Here is what one MD told to one of my friends about a special preventive test for something: “I don’t understand it, and for the prescriptions I need to write I don’t need to understand it.” For many doctors (not all but most), prescription-writing is all they need to do and understand.
I am sure that there will always be need for medicines in some cases but I would say (just estimating) that over 60% of our ailments are nutrition-caused and another 40% are driven by stress, environment, and lifestyle choices, in general. I now look at every health condition in all of my patients as nutritional first, lifestyle second, and when those fail, then medicine. <3
Best wishes to you and your family!,
Angela
I’m really interested to hear more about the process of detoxing and where we could seek support for that. Our 5 year old has been taking this med since he was just over 2. Last year he was formally diagnosed with insomnia (that didn’t start until he was almost 3) and he exhibits many of the other symptoms you have mentioned.
Hi Monica. I am so sorry to hear about your struggles with your son. Is your son still taking the medicine? If so, many believe it is very important that you wean him off the medicine rather than stopping cold turkey. Although it is not supported in the medical literature, many believe it alleviates the severity of symptoms. To help our son heal, we found a Functional Medicine doctor that used a urine analysis to measure the levels of his neurotransmitters. I believe this was a crucial step in his recovery because we weren’t “guessing” what would help him. For example, several doctors wanted us to give our son a SSRI antidepressant assuming his depression was caused by his serotonin level being off. Turns out, his serotonin level was perfectly in range but rather his glycine levels were not. Armed with this information we started a protocol of supplements for a few weeks before starting a 14 day full body detox. The program was called DesBio OmniCleanse Detoxification Program. Its my understanding that it may be difficult to find a doctor that uses this testing so please feel free to reach out to our doctor (she can work remotely.) Her name is Dr. Evelyn Higgins http://www.doctorhiggins.com 631-438-6721. In addition, please feel free to join the Facebook support group called “Montelukast (Singulair) Side Effects Support and Discussion Group” for more information. Please know you are not alone.