This has been a bittersweet week for us. Monday marked seven months of missing our angel. Seven months on a journey that seems to have no destination. Sure I have enough “knowledge” in my head now, that I could probably produce and market my very own catch-all designer molecule for the treatment of depression, anxiety, PMDD, bipolar disorder, athletes foot and ringworm, but am I furthering our cause? Am I making a difference in the world?
On this journey, there are small but meaningful victories along the way. Whether it is having a psychiatrist admit that Anti-depressants are the most likely cause of my son’s death, or the one I had today. I brought a woman to tears today. Not because I hurt her feelings, but she saw that I cared for her son’s health and well being more than his paediatrician did.
Here is the story. This ladie’s teenage son, whom she adopted(having Fetal Alcohol Syndrome) has attention issues and an aggressive persona, as many kids, with or without FAS have. She listed off over half a dozen medications that her son has been on, to try and control these behaviors, most being amphetamines. None of these drugs has provided any particular “Positive” results(Let’s all give a collective “No Duh!!!).
I can’t tell you how many times I’ve been speaking to a well meaning parent about our ordeal, and the dangers of psychotropic drugs, and I usually just bite my tongue at the rhetoric of, “Oh, I know ADHD is a made up condition, but my son REALLY has it and the Ritalin really works for him.” Sometimes I am goaded in to outbursts and today was one of those days.
The previously mentiond lady, had this past week taken her son back in to see this paediatrician, because after his latest medication, he has become increasingly violent toward others and himself. What was the doctor’s natural reaction to this complaint? Let’s up the dose.
She was unable to tell me the name of the drug, but can remember the doctor telling her it is normally used to treat menopause. I am not going to judge this woman, as I have been desperate at times with dealing with difficult behaviors with a teenager. That being said, my first reaction would be to question why a teenage boy with aggression issues, is being prescribed a medication that is indicated for the tratment of menopausal women. Most likely this drug is an SSRI.
It was heart-wrenching to watch any last vestage of faith in the medical system drain from this woman, as I explained to her that, essentially her son was being used as a guinea pig. The vast majority of these drugs are contraindicated for paediatric use, and that there are no fail-safes in our present medical system, to prevent the off label prescribing of at best, useless drugs and at worst lethal poison.
She was devastated knowing that for several years now, the violence, behaviors and physical tics her son has, are not some physical condition that her son is challenged with, but a direct result of the medication she has willingly been making him ingest. I really don’t know what will come of it, but she did say she was going to wean him off the meds he is on and seek a second opinion.
That’s as close to a victory as I am feeling these days.
In other news. I have found that lately, I have adopted the persona of research scientist, using my own family as a longitudinal study.
Recently, I came across studies that show incontrovertible evidence of faulty serotonin receptors in the brainstems of babies dying from SIDS. The hypothesis is that these are the same receptors, that regulate a baby’s autonomic nervous system(heart and breathing rates). Scientists are baffled as to what could be causing these defective serotonin receptors, but it also doesn’t appear that they’re asking the obvious questions either. It is either a case of a naturally occuring congenital defect en masse, or…….. some iatrogenic cause, like say pre and peri-natal exposure to a serotonin altering drug. It is interesting how, in North America, we have some of the most advanced medical technology in the world, yet the United States sits at number 46 in regards to the World Infant Mortality Rankings. The worst of any western nation, even falling behind Cuba….CUBA!
Why? Could there be some casual link between the increasingly high levels of unneeded prescription drugs we love to ingest and the actual increase in SIDS deaths. Me thinks so. But what do I know, I’m not a scientist.
So, this past week, we had Andrew go through a sleep study. It’s is something we’ve been concerned about since he was born, but never really gave it much thought. Our concerns have been his episodes of Apnea while he sleeps. He’ll just stop breathing for 10,15, 30 seconds at a time, and then start back up with a big gasp or a choking episode. Well, the sleep study confirmed what we’ve known all along, but worse than we’d imagined. In a six hour period, he stopped breathing in excess of 30 seconds, 48 times. There was another 50 plus times less than 30 seconds, in the same time frame. Faced with this information, I have decided to have the other kids tested as well. And to my shock and horror, very similar results.
Thus far, we have only had the three boys exposed to Effexor tested, so I guess the proof will be in the pudding when we have Emilie tested. I speculate that, having no familial history of Sleep Apnea, and in the wake of a negative result with Emilie, we would have an argument for a long term effect caused by Effexor. It is exciting news, just as it is disheartening news. Knowing that I am getting closer to conclusively proving these drugs cause not only immediate, but long term damage to babies, brings me elation, but also fear, knowing that my children are living with a silent killer.