Seroquel XR ...

Discussion in 'General Parenting' started by ksm, Oct 26, 2011.

  1. ksm

    ksm Well-Known Member

    difficult child has been on it almost two months and has worked up from 50 mg per evening to 150mg. We have not seen much help with it. In fact, I wonder if things are worse. She has had lots of outbursts - especially in the last week. On Friday last week and almost everyday since, she has broken down in to tears and screaming fits. When we try to talk to her, she gets worse. If we try to console her she pushes us away.

    I will talk to her therapist tomorrow at her appointment - but we have over a week until we see the ARNP about the medication check. I called last week and told about the increased melt downs and they said to continue the rx.

    Do you have to wean off of Seroquel? I know she is still on a low dose, but I feel like we are treating her like a guinea pig. We saw the neuropsychologist yesterday, but since she didn't see difficult child she didn't have suggestions yet. She will be ordering tests... but it could take weeks to get insurance approval. I think I would rather deal with her on no medications... than what we are doing now. Possible dxs are: Anxiety,ADD, ODD, Dysthymic Disorder, Borderline Personality Disorder, Reactive Attachment Disorder (RAD), BiPolar (with hereditary factor); I knew about the anxiety, ADD and possible bipolar... but the other terms came up in the records I got copies of for the consult. Not as true diagnosis... but possible, or rule out diagnosis.

    husband and I are sitting here, unable to sleep after witnessing a horrendous meltdown, crying, screaming and her telling us we hate her. Not sure what to do anymore. KSM

    ps - from previous posts you may remember that Prozac made her feel "hyper" and she had animal type rages on Stratera. Those rages were different than these - in that she was angry - but now she is crying.
  2. buddy

    buddy New Member

    She sounds like how my son was the first time we put him on Prozac and the other two anti depressants we tried. he was just so upset was sad plus anger but not the full rage like what just happened. FInally prozac did work for him but we took like four months to get to 20 mg! we went painfully slow. It then didn't actually help with the anxiety much, but his ability to show emotion (the normal good ones) changed. He was able to be more affectionate. It was kind of freaky but cool.

    I know we just stopped the seroquel when he fipped out on it but it was just the first dose level. Not sure about higher doses.

    It is just terrible to watch your kid feel awful. I am so sorry the medication isn't helping. I hope it either will start to kick in or that you can end it and find an alternative for her quickly.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    This is my attitude after my son was a major guinea pig for his psychiatrist, who threw medications at him to see what stuck. Eventually we caught on that certain medications made him worse. When that happened, even without the permission of psychiatrist (often with help from wonderful pediatrician) we weaned him off BEFORE we spoke to the prescribing doctor. It didn't take much to figure out when drugs were making things even more awful. Why prolong it by keeping him on those medications?
    To be honest, once son was medication free he was 100% better. I can't promise that to everybody's difficult child, but I often wonder if these medications make the kids better or worse. I think it depends on the child, the medication, and the psychiatrist. There are so many psychiatrists who put these kids on five drugs, trying to medicate away every symptoms and insisting on our continuing medications when they clearly are NOT working.

    I have my own horror story. Read it and take what you can get from it and dismiss the rest. When I was young one psychiatrist put me on lithium. I felt like I was walking in a dream and it scared me so much that I threatened suicide. what did he do? Put me on MORE lithium. It got worse. I told him. What did he do? Put me on MORE Lithium. Finally I took a whole bottle of Valium. I knew it wouldn't kill me and I just wanted to sleep. Woke up three days later with a clear head, and two days later saw a new psychiatrist who I told about the Lithium and how weird it had made me feel. Well...

    New psychiatrist believed me and decided to test my lithium level although I had not taken any in five days. When I saw him to get the results, I could see he was holding in his anger. Even after having not taken Lithium for five days, my Lithium level had come back TOXIC. Yes, even after it had had five days to remove itself from my system it was still TOXIC. I wasn't on a high dose, but Lithium was a baaaaaaaaad medication for me. It could have killed me if I hadn't disconintued on my own so in a sense my three days of sleep due to Valium overdose saved my life (hope you can follow this). I have to take a very small dose of any drug, and psychiatrists don't believe me so they put me on normal doses which usually are very dangerous...thus I became...

    ...a cynic. I do have to take medications but if I am given medications and feel terrible and am told to continue those drugs that are making me sicker (and often told to increase the dosage, well)...hogwash. I use my common sense these days. j

    Beware of doctors saying: "it can't be the medications. The dose is too low." "It can't be the medications, he hasn't been on it long enough. Let's give it more time." "Well, it's probably TOO LOW a dose. Let's INCREASE the dose and see if the extra medications help the rages stop..." "It's what is going on in his is definitely NOT the medication." These are the most common things to be told when it actually IS the medication, but the psychiatrist, for some reason, does not want to admit it. Scary stuff.

    JMO and mega-experience. They even say the same stuff to adults and try to make you feel guilty (yes, guilty) if the medications they prescribe don't work. It's crazy! :)
    Last edited: Oct 26, 2011
  4. InsaneCdn

    InsaneCdn Well-Known Member

    When medications work right... it should be obvious.
    The kinds of medications we (board parents) deal with aren't simple stuff...
    These medications tend to have serious side effects.
    Yet... when you have a medication (or combo) that works, the benefits are huge and the side effects are manageable.
    The way I look at it is, there is a problem with the brain chemicals in my child's brain... if there is a combination of chemicals that can correct the imbalance... it should be obvious, and it should be worth it.

    Haven't used this medication... so can only speak in general... but would be wary of cold-turkey stop unless it was life-threatening - many of these medications are not good to just stop. Definitely safer to scale back...
  5. ksm

    ksm Well-Known Member

    I am going to call the ARNP office and tell them I think we need to stop the Seroquel and how to make that happen (stop, taper). Until the psychiatrist runs the tests she wants... I think we are just guessing on treatment because we are guessing on the diagnosis. KSM
  6. AnnieO

    AnnieO Shooting from the Hip

    I can tell you from our experience with Onyxx, weaning off ANY medication is probably best.

    And it didn't help her. Made everyone's lives worse, forget side effects...
  7. buddy

    buddy New Member

    KSM, sounds like a good idea given what you are seeing. In general when mine has had to go off something we go down like we went up. But everyone is different and every medication is different so??? I know I posted this somewhere else but difficult children doctor has explained that at the beginning levels of the AP's you might not be targeting the chemical system that your child needs affected and so that is why they sometimes say to stay on until it is built up. She said if they ever tried it again he woudl go inpt. and start high then go down to the right dose. For me, I think it is totally not worth his upsetting everything that is going right to do this one thing and I would only do it if nothing else was working for him. That's because all this disruption of routine is going to be a bear to overcome. But not all kids have that issue so if it ever comes to that it could be a question to ask. After how rageful my son got on seroquel (and risperdal when he was really little) I would just be so fearful no matter what doctor is saying. It would be my last choice. Hope they give you a good response and help you to do things in a way that will not trigger further upset for her. HUGS to you all.
  8. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I have been on Seroquel XR and I didnt need to taper off of it. I was on Seroquel regular before I went on the XR version. Actually, I was on both of them at one time at one point but we found out that Seroquel made my cholesterol increase drastically so my psychiatrist just had me drop it immediately and I went off cold turkey.

    So basing it on that, I dont think you need to taper. It is not a drug that is one of the anti-seizure drugs that could possibly cause a seizure if you stop it.

    But...that was just my experience so take it for what I did.
  9. ksm

    ksm Well-Known Member

    I have called the ARNP and is still waiting on a call back. It may be even tomorrow before I get an answer. I still have some of the 50mg pills left. I was thinking maybe a couple days at 100mg, then a couple days at 50mg. then stop. But, I will keep waiting for the office to call me back. KSM
  10. InsaneCdn

    InsaneCdn Well-Known Member

    go to one of those medicine sites on the net, and look up the actual "drug information sheet" for that drug... it will tell you all the "expected" side effects, and a whole raft of warnings... including if this drug should not be stopped suddenly...
  11. jal

    jal Member

    difficult child was on Seroquel 50mg am and 50mg pm for a few years. husband and I wanted him off of it because of weight gain and we saw no real benefit to it. Under his psychiatrist we tapered this past spring. He's been off it for several months.
  12. forkeeps251

    forkeeps251 Member

    I haven't read through all the other replies, but here is my story with Seroquel:
    My husband had been given it (two different times) for suspected (but not diagnosed) bipolar disorder. The first time he went on and off it with no side effect, and I am guessing it wasn't for very long.
    The second time he went on it, he had a sudden, rapid weight gain. He is a small guy and went from weighing around 140 lbs one month to 180 lbs the next month. He stayed on it for a while, and I don't know his exact dosage. I want to say he was on for probably 6 or 7 months. When he decided to stop taking it (he hadn't noticed a major difference and was sick of the side effects), he stopped taking it cold turkey like he had the FIRST time he was on it.
    BIG mistake. He was so terribly sick. I have never, in the 10 years we have been together, seen him that sick. He couldn't keep down anything and was dry heaving every hour. He couldn't, and hadn't slept for almost 4 days. He couldn't keep down even water. We tried giving him a dose but he threw that up as well. We finally had to call his doctor and request some anti nausea medications be sent over to our pharmacy. It took a couple of tries for him to keep that down as well... and when he finally did he ate a few crackers, took his normal dose of seroquel, and finally went to sleep. When he woke up it was like nothing had happened... he was fine. After that he followed the recommended gradual step down from the medication and within a month he was off of it.
    I guess on the plus side, he lost about 10 lbs of what he had gained when he first started it by going through that. He lost (most) of the rest of it eventually too.
    My advice: be on the cautions side and don't quit cold turkey, or at least ask your doctors recommendation. I wouldn't wish that on my worst enemy. It was scary, almost (although I don't know first hand) like watching someone go through heroin withdraw or something.
  13. DammitJanet

    DammitJanet Well-Known Member Staff Member

    That sure didnt happen to me! But like I said, be sure to ask your doctor. I know my doctor would have never told me to quit something if cold turkey if it would have been bad for me but this medication was actually harming me. I also seem to be able to go cold turkey on medications pretty well though. Well, unless you stop all of mine at once. Had that happen once by mistake and it wasnt a pretty sight!