anyone else reading this new info on seroquel??

Discussion in 'General Parenting' started by Jena, Jan 1, 2009.

  1. Jena

    Jena New Member


    so is anyone else running across alot of negative info concerning the horrible side effects from seroquel?? I had a friend tell me a friend of her's child some horrible stories.

    I'm reading alot of stuff that's kinda freaking me out to be honest. Some new findings and alot of ppl coming forward with extremely bad side effects from this particular ap.

    So, I was wondering is anyone else coming across this stuff??? I do not like ap's in general, i really don't. I wish we had found a better fit with the anti depressants or anti anxiety medications. but we didnt'.
  2. Josie

    Josie Active Member

    My difficult child 2 was on Seroquel for a while when she was raging. I knew about the high cholesterol, high blood pressure (?), and weight gain and the possiblity of life-long tardive dyskinesia. It also came with the usual black box warning for a/d's.

    Is there something else you are hearing?

    Seroquel made me very nervous but I was more nervous about the possiblity of her hurting herself when she raged. Seroquel did reduce her raging.
  3. smallworld

    smallworld Moderator

    Jen, what specific side effects are you hearing about?

    Like Fairlyoddparent, I have heard about sedation, weight gain, high cholesterol, high glucose that can lead to diabetes and movement disorders. My understanding from our neuro and psychiatrist is that Seroquel is a "milder" AP that some of the others and is less likely to cause movement disorders.

    My son J has been on a Seroquel for a year. We knew about the risks, but decided to go ahead anyway because no other medication was helping J with his anxiety and depression. He is a completely new kid on Seroquel so I'd be reluctant to pull it as this point.
  4. Jena

    Jena New Member

    This is an interesting article. It's not aimed at seroquel, it's ap's in general. I thought it was interesting.

    I guess what I meant was the side effects with the ap's are pretty severe from the blood sugar level increase, possiblity of diabetes mixed with the other side effects. We already have tic's and weight gain. i have appointment with neuro to look into tic's.
  5. Jena

    Jena New Member


    we must of been posting at the same time. I'm so so glad it's working for him. Yet we are on the side where the side effects are evident now entering the 3rd mos of it. I've heard of the same things as well, yet i've heard that seroquel is much more sedating than any other ap, and is also much more likely to cause all those side effects the movement disorder, etc. than the other ap's. A friend had told me and i'm waiting for her to send me more info.

    Like for instance my doctor said nothing about getting blood down for difficult child that I now think is imperative being huge weight gain and the child cannot stop urinating and drinking and eating. that's a whole other issue how the doctor's or at least mine do not really discuss all the steps to take when we use ap's.
  6. klmno

    klmno Active Member

    Jen, All the medications have some negatives about them and some cause more reactions than others in kids/people in general. How much are you giving her? Did you titrate up slowly? My son isn't taking any AP right now, but still, I worry about the ms's he's on. We just have to weigh the negative with the positive. I learning to accept what psychiatrist has told me all along- there is no magic cure and no medication that will "fix" all of it. So, I vary between wondering why my son is on them at all to going to psychiatrist feeling like I'm begging him to try something more! LOL!
  7. smallworld

    smallworld Moderator

    My kids have blood work every 6 months, per their psychiatrists. They are checked for cholesterol, glucose, liver function and thyroid, among others.

    I had a long talk with both our neuro and J's psychiatrist about Seroquel. As I posted above, they said Seroquel is better in the movement disorders department than Risperdal and better in the weight gain department than both Risperdal and Zyprexa. But every child reacts differently so you need to check in with your own psychiatrist to make your own judgments about what is occurring with your child.

    If you are concerned about weight gain on APs, you may just have to add a second medication to suppress appetite. The anticonvulsants Topamax and Zonegran suppress appetite and won't affect the mood negatively of a child with a mood disorder. Metformin, a diabetes medication, is used to prevent glucose problems while taking APs. But you should be aware that these medications all come with their own set of side effects that are different from the side effects of the APs.

    Our children have disorders. They need treatment. We as parents always need to consider the benefit vs the risk in any treatment we choose. We also face a tremendous risk if we choose not to treat them at all.
  8. smallworld

    smallworld Moderator

    by the way, the article you linked was published in 2005. It's not new news.
  9. Jena

    Jena New Member

    smallworld I agree one hundred percent and am hoping you did not take my words the wrong way i had difficult child grabbing at me as per usual while typing. I think it's great your doctor steered you the right way as far as blood tests, etc. mine did not. so i have to follow up on all of those.

    It is all due to our own children and how they accept the medication. Maybe for us this just isn't the right drug afterall. She's ticking all over the place. I just think it's so important for us to know the updated findings regarding the long term usage of the ap's in general. From what i've been reading the ap's seem to stop working at some point, and we often find ourselves having to increase the dosage as well.

    your dr. sounds great, i should of known better and took the time to look into it more.

    klmno - i dont' blame you!! LOL it can be rough. I just think us as parents should be able to get our hands on either via research etc. the continued effects of the medication, especially once long term studies have been documented on it's usage on children.
  10. klmno

    klmno Active Member

    I'm not sure there has been as much research as we'd like to think with using these medications with kids. But, it is better than not being able to find a psychiatrist who'll even acknowledge that something more is going on than bad parenting.
  11. Jena

    Jena New Member

    klmno i agree without a doubt. that's what i heard for years. yet i'd like to find a medication with less severe side effects as with this one.
  12. Jena

    Jena New Member

    ok and i'm officially apologizing for putting the wrong title on this one. I should of waited till i had the enough before posting. :)

    Being home with difficult child bouncing and a fever and i'm losing it.

    anyhow, sorry when i get it i'll copy a link.

  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    My son should never been on anti-psychotics (this is my own warning...doctors put kids on medications they don't need). That aside, he trialed Risperdal Zyprexa and Seroquel. He got movement disorders right away with Risperdal and Zyprexa and never did with three years of Seroquel. But he did gain a ton of weight and hasn't lost it in four years. He still craves sugar and we've testing him for diabetes soon. This is after four years off of ALL medications---I'm convinced it (and the Lithium he was on for the same amount of time) caused permanant problems because he wasn't like this before taking those drugs. He was very fit, now he's quite overweight and craves sugar all the time. He does not have a mood disorder so craving carbs makes no sense other than the medications screwed with his metabolism.
  14. Jena

    Jena New Member

    MWM - Yes, I have heard of that as well. How the medications can change our children for the long term. I"m sorry to hear that he suffers with even being off the medications for so very long. I had a friend with whom told me several things about seroquel, not too far off the mark of the listed warnings, more the frequency and severity of it she was supposed to send me links, hence this thread I started yet she didn't.

    I think that it does come down to weighing the risks out. Also what irritates me, oh sheesh now i'm going to start is alot of these drug companies with their clinical trials how they are handled is bs to some extent. Now, believe me I'm not paranoid yet at the end of the day the pharma companies wanna make money, they want their drug on the market. All too often they push it onto the market before its ready and then first 3 - 5 years we begin to hear the nightmare stories of side effects, etc. because yes first ppl are all different their biochemical make up, etc. yet also the trials were not run long enough, or well enough.

    For me personally I think it comes down to having the blood tests run, etc. and than make my decision from there regarding continuing the medication.

    maybe we should start a thread mainly of side effects from different medications that we see and our difficult child's experience.
  15. dreamer

    dreamer New Member

    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 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 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 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 might be willing to accept those possible risks.
  16. totoro

    totoro Mom? What's a GFG?

    It is a very hard thing to figure out.
    What I do is, I have printed out Dr. Pavuluri's Medication Guidelines. It is lengthy... You can purchase it as well.
    There are others as well, but since she has treated K and I feel comfortable with her and I agree with her Book Advice, I like her medication guidelines.

    Anyway, I bring in a medication guideline. I will have looked through it *again* prior to this apt. I know kind of what direction the psychiatrist is going to head regarding medications.
    So I have my own mental list as far as what I think and what I want! :)
    I can also flip to to any medication she might bring up and look at it quickly and see info on it!
    I usually will highlight areas I am interested in or or concerned about.
    I then will ask why she is choosing this medication? Why not another one over this one or that?
    I have the side effects high lighted and I can ask about them.
    Our new psychiatrist laughs at me when I whip this out. But now that I *trust* her it is not such a bit deal... but it also has dosing guidelines so I can go along with her dosing amounts, then I can questions her!!! Which they LOVE!!!
    Here is the link:

    I am sorry you are struggling with so many questions. It is so hard to make these choices and then have the worries of all of the side effects.
    I just hold onto the fact that I know K does so much worse off of medications.
    We have done a medication wash and she is worse. I remember my baby prior to medications almost 3 years ago. Even with the side effects, she is better than that little girl.
  17. lizzie09

    lizzie09 lizzie

    Jennifer, what type of movement disorder did you see with seroquel?
    Like your daughter my son is on a low enough dose 3 x 25mg and it seems ok not sure yet bout weight with it because of Christmas.
    All these medications are scary. I hope he might be taken off it in Feb though doctor thinks it should be continued...I cant post the changes as in medication in signature,,,tried to edit it and failed
  18. Jena

    Jena New Member

    Dreamer thank you so much for taking the time to share your story with me and others. What a story it is, you have done some very impressive things giving back and sharing and educating and helping. While all the while helping to treat your child and find answers, wow that blew me away bigtime.

    I'm sorry that you went through so much and your difficult child. It is a long hard road and often confusing and as you stated and know all too well life long effects from the medications. I'm so glad to hear how well she is doing right now, that is amazing and a source of hope for me and i'm sure others.

    THank you again.

    Toto - I know you go thru the same thing as I with the seroquel effects and bang your head into the wall as well with K's weight. If it was just the weight (not that that's good) yet adding in the risks of the diabetes, etc. and the tic's we both see in our kids ugh. Anyhow thanks for the links i appreciate it as always :) I hope K's been well lately, and N.

    Lizzie - Hi, what i have noticed with my daughter is new tics, that i can only logically attribute to the seroquel. She had several tics yet they have diminished greatly the past several years as she began to grow. Yet now we have new ones with her hands that especially kick up when she gets anxious at all. Her fingers are constantly moving, it's like she's always counting or something yet she isnt' counting at all. I hope she can continue to control it to write in school without it being a problem. I've noticed it worsening the past week or so now that she's home and i have been lucky to see her more. Her teacher notices nothing unless a limb falls off lol.

    The tic's came on rather suddenly, i'm in the process of scheduling an appointment at neurologist. i know their tic's due to seroquel i can bet on it. it wouldn't make sense for her to pop up with new tics out of the blue since she's had the same tics since she was 1 year old pretty much.

    Lizzie i didn't start this to scare anyone, infact the entire reason i started it was to share info yet the dingy friend who was sending it to me hasnt' been home and forgot :( yet as you can see seroquel works wonders for some children, and can truly help them. For us it has done good, difficult child isnt' swinging anymore, subtle swings yet nothing we can't survive or she more importantly.

    Yet it's time for the blood work, etc. to happen due to the increased weight, thirst lately urinating alot we have all noticed.

    I wish you luck. We went thru the first 6 weeks with no side effects at all. I hope you have continued success with the medication.