I am one of the parents who had difficulty getting a doctor to even consider my child had any mental illness. When she was very young, we noticed extreme behaviors, but in our area, the general thinking was that children do not have mental illness....if there is a problem in a child, it is a parenting problem.
Before any doctor here would even SEE my child, me and husband had to attend countless parenting classes, psychiatric evaluations etc. I remember at the time, I kept saying how does an illness know a persons age?
The whole idea that a child could have a mental illness was relatively new. SO many of the medications for mental illness for children and adults are relatively new, as well. The entire field of mental illness is relatively new compared to treatment for other types of illness, and medicine in general has seen MAJOR advances all over in just the last 50 years.
Mental illness can be so devastating that people do push hard for answers and help.
People get desperate. There was one point in my childs life, I yelled ...... the side effects make little difference if my child dies from suicide.
Me and my child have been involved in many research studies etc.
Yes, currrently my child, my husband and myself are all medication free, as is my son..for mental illness. Over the 20 years we have been dealing with mental illness we have trialed nearly every psychiatric medication out there, between us. We have had a wide variety of doses of so many medications.
ANY medication for any health issue CAN have serious side effects. Vaccines can have serious side effects. Nothing is harmless, nothing is without risk.
When I first came to this site, I was haveing some difficulty with the growing awareness of dangers of some medications. I was also a little angry, becuz when me, husband, difficult child and son were on some of the medications, and we complained of some side effects we thought we saw...doctors would not listen to us......and now years later those things we experienced are documented as real possible side effects. When our difficult child got suicidal on zoloft, we got a visit from CPS and were accused of not giving her the medication at all. (thats just one example)
Yes, my daughter, my difficult child was on seroquel, at various doses from 25 mg to 400 mg.......in combinations of all sorts with and without other medications on board. As a young child she was quite thin, but she was on Ritalin, then. She is now morbidly obese......it is possible she is diabetic, but she is now 20 and has had such an extreme phobia of needles, she refuses flat out to permit glucose testing......and she developed very very very high blood pressure on seroquel. (it runs 200 over 120 at rest) SHe has been off all medications since 2004. the weight and blood pressure never reversed. All thru elem school and middle school, her cogintive abilities were strong, and she was in gifted student programs and accelerated classes. She was bright. She was athletic and earned presidential fitness award all her years grades 2-7. SHe had her black belt in Tae Kwon Do. In standardized testing she tested out ranking in 90-99th precentiles always.
She now cannot even focus on the tests to even do them. SHe has serious difficulties spelling, and can no longer add or subtract, even. Reading is seriously difficult for her.
We are not at all sure just exactly what has happened. I have 2 friends whose livers failed while on medications......and they passed away from liver failure. I have 3 friends who were on psychiatric medications long term, and gradually lost cognitive function in very very noticeable degrees. Maybe my difficult child had some TIAs or mini strokes? Maybe her brain cells were damaged from medications. We just do not know. Maybe her mental illness just destroyed her brain. At the time when she was being medicated, we were doing the best we could with the knowledge and resources available at that time. Her quality of life due to her symptoms from her diagnosis'es was extreme enough.......it warranted we try something. CPS demanded we try something, school required we try something.....
In hindsight, the docs are no longer sure which of her symptoms were from illness and which were from medications......At this time her diagnosis is bipolar with extreme severe social anxiety, general anxiety and extremely severe panic attacks. Her docs did a medication wash in 2004 to try to establish just where they stood at the time with her.....and by 2005, her many docs decided NOT to add in more medications......and have held to that since then.
At one time, she was wild and running wild on the streets. Always manic. She was never violent, but she was suicidal at times. For the last 2 years, she stays home, most of the time she demands to be in the same room as me, and if I am not available, she will sit in same room as husband and now her sister. For the last 2 years she sleeps 16-20 hours a day. Even as a young child and a toddler and infant she NEVER slept more than 3 hours at one time.
She often asks me "mom, did I help other kids who are just starting to show symptoms have it easier to get treated?" When she was in middle school and early HS she knows I went and spoke at forums like county board meetings, state capitol etc trying to get programs started to help the kids and their families. I helped get WRAP around going here in my county......I helped get more Special Education going on here. I also spoke at Presidents Commision for Mental Health.
There is a phone number to call to report drug side effects.....I used that number often...I think it is called Medwatch.
We feel like we were guinea pigs. We prefer to use the term pioneers. We had to push so hard to get our daughters illness recognized........and yes, it is possible she now suffers effects from treatment. It is our sincere hope that our experiences help fine tune treatment for other kids coming along the path. Our daughter does continue to be involved in research studies. Maybe that is her main purpose to being alive.
Yes, people do need to be aware of side effects from medications and treatments. Yes you do need to keep a watchful eye out. Yes you need to have a good working relationship with your team and docs. I found it a sign of the times recently at the docs when easy child had to sign a form at our docs saying she would be an active participant in her care and she would educate herself, as well, and that she would question her treatments. 30 years ago, no doctor I know would have wanted that AT ALL, much less demand a patient sign a paper saying they would be that way. To me it almost felt like it was a way to try to absolve the doctor of any responsibility or liability. The world of medicine is coonstantly evolveing..........and it is constantly changeing. I turn on the TV now? I see parents of kids with downs syndrome and autism, and talk shows discussing the difficulties families deal with day to day when they have children with these disorders. Hm....our personal experience iwth a child my difficult children age is that at the time we needed compassion and help- we were outcast, criticized, ridiculed.
Nope, no pill is going to magically fix everything at no cost. There WILL be a cost to most helpful things. Yes you have to be mindful of the risk-benefit balance. You need to be aware of possible side effects so you can keep an eye out. Yes, medicines can have minor side effects, or they can have major side effects. They can even have life threatening ones and or irreversible ones.
SOme people when I first came to this site did not want to hear about the negative side effects.....they were afraid if they knew about all of them they might be frightened away from the help they might gain from those same medications. If a medication had a possible side effect recognized that only affected say 2% of persons useing the medication, people would say that was such a low % ..well, yeah, it is a low % .....but if you fall in that 2% it sudenly no longer matteers so much to you that only a low percent of people experience THAT side effect..
Many docs would not discuss certain side effects, for fear people would either not even try the medication, or for fear they would be subject to power of suggestion and just by hearing of the side effect, they might imagine they have that side effect? Many patients would assume that if there was some danger, their docs would have warned them?
Some docs also defended their not telling patients about certain side effects by sayng hey, the medications came with a warning label on the bottle, or with the bottle.or some docs would say well, THATS the paharmacists job to tell people more about the medications. I remember people posting, angry at pharmacists becuz pharmacists DID try to warn people, and people said no, my doctor did not say those things, why is the pharmacist sticking his nose in?
In the world today, it is wise for everyone to research their medications.....look them up online, read the drug inserts that come with your medications.....ask questions directly. Not just with psychiatric medications, but ALL medications. If a medication has side effects that lab work can detect, ask the doctor for the lab work if the doctor is not routinely ordering it. Many docs have nurses who are in the office for the express purpose of educating patients about their medications.
Yes, my daughter does have long term side effects from seroquel specifically. BUT seroquel can be a great medication for some people.....and depending on your childs symptoms etc......you might be willing to accept those possible risks.
