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Help choosing medications

Discussion in 'General Parenting' started by danamarie95020, Jun 8, 2018.

  1. danamarie95020

    danamarie95020 New Member

    hi everyone I’m new here and feel completely overwhelmed - I have a very manic 13 yr old son who is diagnosed PTSD & Bipolar Disorder I - He is currently taking: Lithium / Latuda / Lamictal & Intuniv - every day he cycles and is super aggressive - the psychiatric and I agree we need to change up his medications but he is asking me to research medications and tell him what I want to try - any parents on here with kids similar to mine - what medications are your children on - dr wants to try haldol or tegratol in conjunction with what we have him on and eventually take away one of the other medications - help please
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  2. ForeverSpring

    ForeverSpring Well-Known Member

    Is this an older doctor?? I would never put any child on Haldol and your son is already on a ton of medication. I have personally been on psychiatric medications from age 23 to now at 64. I would be afraid that this much medication would be dangerous. I am only on one medication every night and one PRN. The few times I was overmedicated it was scary. I won't elaborate but....it's not fun.

    i would get a new psychiatrist who is younger and aware of the newer treatments for mental illnesses. There are treatments now that don't even involve medication, certainly not so much. I wish they had had them back in the day.

    Your doctor already has him on two mood stabilizers, a stimulant and Latuda which is rife with side effects. Maybe the medications themselves are making him worse, not better. medications are a crap shoot and them making a patient worse, not better, is NOT rare. At 13 nobody knows for sure what is really wrong with your son. He may turn out to have something other than bipolar. Your doctor wants YOU to pick his medication???? He is supposedly the doctor! Do you think your son on six medications is okay???

    Please keep your son safe. Get another psychiatrist. I sure would if this were my child.
    Last edited: Jun 8, 2018
  3. ksm

    ksm Well-Known Member

    Ask for DNA testing to find the best medications. You can google that for more info. It finds out what liver enzymes you have, then lists suggested medications, and also which medications to use with caution. He may be a an untra fast metabolizer, or a poor metabolizer of specific medications.

    Check to make sure you know what your insurance covers...

  4. danamarie95020

    danamarie95020 New Member

    Thank you - I’ve never heard of that before but I will ask his dr for it - we’ve been through so many different combinations and things work for awhile and then BAM he’s back to being unstable and super aggressive -
  5. danamarie95020

    danamarie95020 New Member

    Thank u - his past dr wanted to switch him to Depakote / seroquel / lamictal ... but he’s left the practice - he was younger and wanted my son off lithium - this new dr seems to think lithium is best but I disagree
  6. ForeverSpring

    ForeverSpring Well-Known Member

    Have you ever taken him for a neuro psychcological evaluation, which is comprehensive testing for all problems often for about ten hours. My son had it.

    The psychiatrists insisted he had bipolar, which is very hard to see in kids. Like all else in psychiatry, it is a guess. My son was on tons of medications and just got drugged out. The neuropsycologist gave him two days of intensive five hour testing then said he actually has a high functioning form of autism, which also causes meltdowns and moodswings and raging. But the cause is different and so is the treatment.

    The medications went away for my son (although some autistic kids need medications but not bipolar medications) and autism interventions were put into place. He will be 25 in August, is on his own and is doing great. Question every doctor. Question, question. Doctors are not Gods and psychiatry is not an exact science yet, mostly guess and theory. There is no way to verify a diagnosis, so mental health patients become chemical guinea pigs. As you see, it's all guessing.

    I saw it first hand. It took twenty years to find medications that worked well for me and I had to fire doctors who wanted to make me a zombie. Your son may not have bipolar and I have never heard of anyone on three mood stabilizers. That's horrible. If he does have bipolar it will show as he ages. I have a mild form of this.

    Personally I don't like lithium and to me depakote is to me worse. In the end, what worked best for me was simply an antidepressant. Every person is different.

    These doctors seem to really not know what to do with your son. Which makes sense since they aren't sure what he has so they are throwing every medication possible at him. medications can make us worse too. Been there.

    Does your son get therapy? Is there any chance you can take him for a neuro psychology evaluation? You find them at university clinics and hospitals usually. They tend to test carefully and in detail and in my opinion are much closer to being accurate than psychiatrists who I found mostly just listen to us talk about symptoms.

    Although our neuro psychchologist, who is a psychologist with extra training in the brain, admitted freely that doctors all over, even the esteemed Mayo Clinic where he was from, "diagnose wrong all the time. There are no blood tests." Psychiatrists tend not to give testing that often. I personally think your doctor group is perplexed and clueless about your son and prescribing way too many medications. That is guessing. Our sons psychiatrist did that too.

    I wish you luck and hope you decide to go with fresh eyes to help your son. These guys aren't helping him and it's scary that this doctor asked YOU to tell him what to prescribe. That's insane. What an in my opinion incompetent copout because HE is all out of ideas! (Shudder)
    Last edited: Jun 9, 2018
  7. Copabanana

    Copabanana Well-Known Member

    I agree with the others but want to add two things.

    First. I think it may be a red flag that the MD is asking you to take responsibility to research and recommend medications.

    Second. I would consider seeking out a psychiatrist either at a children's regional hospital or a university medical school. Once your child is established on a medication that is effective, he can resume regular follow-up with somebody local.
    Last edited: Jun 9, 2018
  8. Wish

    Wish Active Member

    I am bipolar with extensive history that is now under control. I've tried every medicine in the book. I will only now take a few now. Lithium which is great but you need to have regular blood work done to monitor levels. I can't stress how important that is because if it goes over a certain level, it becomes life threatening. However, as long as blood levels are checked, lithium works wonders for me. I love lithium. The next two are latuda and lamictal, I feel pretty ok with those too. I vary between three of these medications every few years. My psychiatrist asks me too, years ago, what I want to try, I trust him.

    Medicines I stay away from are seroquel (massive, massive weight gainer) and abilify (works great for derpession but amps up my anxiety to level 100).

    This is just all just my personal experience of course. What works for me may not work for others. Good luck.
  9. danamarie95020

    danamarie95020 New Member

    My son is a victim of DV via his dad - that’s where the PTSD comes into play - my family has a history of Bipolar - sister was hospitalized and my son has been sent to EPS 3 times for 5150 - he tried hanging himself at 9yrs of age - I will see about the neuro psychiatric evaluation - he’s in therapy - has been for years but he won’t talk about things
  10. Copabanana

    Copabanana Well-Known Member

    I know your post is specifically requesting info re medication.

    Forgive me.

    Have you considered expressive arts therapies for the PTSD?

    Art. Music. Movement. Dance. Theater.

    What about equestrian/equine therapy. This can be free/low cost. It can be enormously settling for children and adults.
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  11. JRC

    JRC Active Member

    Hi. i'm sorry that your son is struggling.

    Yes, my son has bipolar disorder. He does not have aggressive behavior, however. He currently takes lamictal, lithium, abilify and risperone. We are currently reducing the risperdone to zero. Not there yet. We hope to have him either on a monotherapy or a combo of only two drugs. But medication is tricky and takes alot of trial and error.

    I'm confused by your doctor's suggestion that you should research medicine. You are not a pharmacist. Neither am I. I can not tell you what will work well for your son because every person reacts differently to these medicines. For example, my son is so sensitive to rispderidone that he goes through what's called "intra dose withdrawal" from dose to dose. This is why we want to remove it from his medicines and only use it PRN.

    I would look for another doctor, one who specifically treats children with bipolar disorder.
  12. Wish

    Wish Active Member

    I too have PTSD and I think this is a wonderful idea. My friend, who's 17 year old son also has PTSD, started doing theater last year and it has changed his life. A life saver indeed. They are in poverty level and get help through community care. The program is free for him.

    I personally have been "doing" essential oils since November 2017, and it has helped very nicely for both of my illnesses and plus my physical pain. I buy them from Doterra. They are 100% pure. Most essential oils sold in stores are synthetic so please stay away from those.

    In any case, they help calm me so much. I never thought I'd be into something like essential oils (lord knows I do not have the money for them), but a friend of mine urged me to try hers and I was sold the minute it was put on me. She put the peppermint oil on my chest and when I inhaled, it opened me up is the best way I can describe it. (I struggle with some breathing issues) and it felt so good. I could breathe. I ordered a set the next day and I never do that. I don't have to tell you what it means to someone when they are bipolar and they actually find something that works that calms the symptoms down some. Dr. Teals epsom salt (take a hot bath) is great too, makes me so sleepy. Of course these aren't cures by any means, but I have found them to help in a semi-significant way along with my medications (always ask doctor first before you mix medications and essential oils).
    Last edited: Jun 9, 2018
  13. ForeverSpring

    ForeverSpring Well-Known Member

    I respectfully disagree. Take him to a new doctor or, better, a neuropsychologist. He needs a fresh opinion and definite testing. And any doctor who specializes in ADHD, autism, bipolar any one disorder sees his disorder in every child. It is not a good place to be if you want to understand your child better. Your child may have been misdiagnosed. It is common.

    Please be flexible and keep an open mind. As an adult, me talk health patient,which is easier to diagnose, I got many different diagnoses from different good psychiatrists. Making your sons functionality better is in my opinion the first priority. I like doctors who are open and don't just treat one disorder, and I have been a patient for forty years so I have been around the block a few times with doctors.

    Please take care of yourself as well. You matter too.
  14. HMBgal

    HMBgal Active Member

    We did the DNA testing on my grandson and all the ADHD medications, Intuniv, abilify, Strattera, Concerta...all had limited effect and we didn't know why. According to these tests, his genetics simply don't allow the drugs to work the way they're supposed to. Right now we're trying to get rid of the Abilify. We tried the anti-anxiety class medications (BuSpar) with limited success, even though it was in the category that was likely to work the best. So now we've switched to an anti-depressant and having some luck with it (Viibryd). He was diagnosed with ADHD, General Anxiety Disorder, and most recently,. Disruptive Mood Dysregulation Disorder (DMDD). That last one was the one they added when they suspected that bipolar might be in his future, but he's too young to make that diagnosis for sure. And it changed the classification of medications. That's when they added the Abilify (aripiprazole). He will coming off that as soon as we can find something works for his anxiety. We're trying to change one thing at a time, controlling the variables so we know what's what. He's never been on more than two at a time (Concerta and Intuniv, for example) and an anti-anxiety and the Abilify. I've sometimes that I would like to just titrate him slowly off of everything, give him a few months and see how he does. A medication wash/vacation. But we haven't done it yet, and he's really not aggressive anymore, unless he gets lit up and goaded by other kids. And he's generally anxious all the time, and irritable.

    The DNA testing is something that some doctors really like and insist on if a child has been on a ton of different medications and not having much relief from their struggles. Some say the tests don't work at all. It has been a proven test for other classes of medications, but doing it for psychiatric and ADHD is a fairly new use of the test. My grandson's insurance company paid for it 100%. Kaiser (if you're California) wouldn't even consider it; they just trialed medications to see what would stick. United Healthcare and Aetna both said they would pay for it.

    Grandson has also had social groups, behavioral specialist at school, group art therapy every week, one-to-one school based therapy weekly as well as facilitated group meetings every day with his class (8 other kids with emotional/behavioral challenges to the extent that they need a special classroom to provide the support and smaller environment.

    My big takeaway is that having you do the research doesn't pass the smell test. I looked long and hard for a doctor that had medications as his speciality.
  15. JRC

    JRC Active Member

    There are people on this board who don't believe children can be diagnosed with bipolar disorder because their son was misdiagnosed over a decade ago.

    Please remember that people are giving you advice here based on the lens of their own problems and anxieties.

    Given your family history of bipolar disorder, it's important you find a doctor that understands how to treat your son.

    Also, there is another community which you can join for a fee that puts you on a list serv (email list) with other parents of children with similar disorders. They match you to a community based on your child's age, description of illness, etc. I'll PM you the information. This group has been very helpful to me especially when it comes to medication. No one gives suggestions but will describe their child's progress on different therapies.

    Good luck :)
    Last edited: Jun 10, 2018
  16. ForeverSpring

    ForeverSpring Well-Known Member

    Jrc I believe it. But kids and even adults are never sure it is right. I am sorry. I have been the patient for forty years. There isn't much difference now than then when it comes to diagnosing. There are no tests to prove a diagnosis and, per many psychiatrists words, no way to be sure a diagnosis is right. Sorry but those are facts that doctors have told me and I am passing their words along to others so that they can research, try harder, get second opinions and fight for their kids. It is the only way. No one psychiatrist is God or always right. Did you know that we medicate for psychiatry more than in any country on earth? We do yet we are no more successful in treating mental illness. Many countries wont medicate kids, let alone give them heavy diagnoses. We are in the minority. It is my opinion only, of course, but I think they have a safer, better approach because medications are not benign and no diagnosis is a certainty.

    The DSM itself, which I believe is only used in the U.S. ( I think Europe has another book) is all there is. Nothing else. And the opinion of the doctor. A second, even third opinion is a good thing, even for diseases that can be proven, like cancer and diabetes. Every fo docTor is different and some help us and some don't. If the doctor is unhelpful, what point is there to keep using him or her?

    Why would you be against having a fresh second opinion? I don't get it. And why cling to one diagnosis for. 13 year old child? Like most, this kid has many diagnosis. Because nobody really knows. Helping this child function is most important. If he had not been evaluated for all mental health areas AND physical illnesses too, he has not been completely checked out. Things like a bad thyroid and epilepsy can cause behaviors. They should be ruled out. All she has is one doctor group that hadn't helped and their opinion. Yes, opinion.

    JRC, I am a long time mom too and a long time patient in the mental health community and I am an advocate now and I sympathize with you and your need to think that psychiatry can be pin pointed in the same way cancer can. I am a patient and I know it isn't the same. Without a definitive way of testing, which hopefully will come with time, we need to treat the behavior. Too much medication for a child....sorry, but it just makes common sense that it is harmful to kids and adults. There are other ways to help change behaviors. I know FIRST HAND. I don't really care if there is a bipolar in kids. How good is it to give them Haldal with two mood stabilizers which I have taken and they really made me zombie like...but I could say "no more." A child may be acting calmer because of being drugged. This is different from being helped. Drugged feels horrible but certainly calms certain kids. This child is not better. The psychiatrist is so unsure of what to do he is asking HER to do the work. Why? Because medication is a crap shoot. I lived this. They try things but they dont know. The test for drug compatibity is promising but mentally ill patients I mentor tell me that I me Tor it doesn't always work. And side effects to all these medications are brutal. I am one who had many. So did my son.

    I am very involved with helping young people who are in the mental health community. I am a mentor. The patients talk to me. I am close to many. I work along side others who are older and survived mental illness. I see and hear a lot. And talk to the other mentors too. We are all very close and confide.

    JRC, I don't remember your story. But I do know that getting the medications right along with therapy can take years. And every diagnosis is the doctors best guess. The doctor from the esteemed Mayo Clinic said so and, being a doctor, I trust him more than either than us. He said verbatim "Any diagnosis is just our best guess. Mayo misdiagnoses all the time." Then he added something like I said...there is no way to prove a diagnosis. I can't quote how he said it. The exact words elude me but he meant that. The scary part is he was the latest one to say this to me, but not the only one. Not at all

    JRC, I'm glad your son's doctor is helping him. Every person helped is a victory to be celebrated.

    I will still tell posters this if their dear children suffer even while in a doctor's care. The DSM changes as often as cell phones and the DSM is all we have and it is not absolute or it would never change. And too many medications affects a person's body. And children's brains are still developing. Yes, some adults take five medications, especially if they are schizophrenic. I know people who take this much in order to stop hallucinations. But they are adults and have a say and still often have to change medications.

    I care less about diagnosis than putting that many medications into the brain of any child. Contradictory drugs. Two mood stabilizers. A stimulant. Latuda which advertises vile side affects. Now thinking of Haldal???

    He is 13. Is this helping him? Not a bit. His brain is still changing. Although I had severe anxiety as a young child and horrible depression at 13, I am glad there were no medications for children at the time. I am 64 and still have all my faculties. I shutter at the possible effects of children on Haldal and other heavy duty medications....what it will do to their brains in their futures.

    I stand strongly by that second opinion. I am sorry that you don't like it but I always share my own experience and opinions. Nobody has to listen to me or you. People will do what they want to do. I feel safe that parents can take it all in and think for themselves. I am not afraid for parents to get as much input as possible, even opposing opinions. It helps them. I happen to be a big believer in second opinion if the doctor is not helping. That is in my opinion the very best way to get well. And this child is not well.

    Love and light and nothing malicious meant. It is only how I strongly feel that my own experience shaped and I wish to share it.
    Last edited: Jun 10, 2018
  17. JRC

    JRC Active Member

    Jesus Christ, SWOT. What the hell?

    No, you don't know my child's story. Nor do you clearly know anything about my thoughts on second opinions. What part of me telling her to see another doctor isn't about getting another opinion?

    I can't even read your TL;DR missive.This isn't about me. Let me just say this: bipolar in children is real. Most children with bipolar are mis-diagnosed for years and don't get the proper treatment. That is not a good outcome. You telling people that it's not real is freaking bizzaro. Does every child who looks bipolar have bipolar? No. They don't. But that's why we have doctors and second opinions. For the record I got FOUR OPINIONS about my son because I found it all so hard to believe. Even though I have 1. A bi-polar grandmother; 2. a depressed father 3. a nephew with schizophrenia and 4. a nephew with bipolar and autism.

    Please step back. And stop telling people that their doctors are wrong. That is just freaking weird.
  18. ForeverSpring

    ForeverSpring Well-Known Member

    I am not stepping back. Anymore than you will. And you didn't even read what I said...then you can't contest it.

    I didn't say doctors are always wrong but they often can be, even about illnesses like what is causing a sore knee. You yourself got four opinions which is in my opinion very smart.

    I never said your son is not bipolar.

    I am sorry you don't like my advice but getting a second opinion is not weird nor is it weird to question your doctor. I trust the doctors who have told me this. A good doctor will also encourage a separate opinion when he is stumped.

    I will post and you can refute it but I am not going to be shut down. People need to hear all experiences in my opinion. You have good points but so do I. Have a great day!
    Last edited: Jun 10, 2018
  19. ForeverSpring

    ForeverSpring Well-Known Member

    Dana, I was also diagnosed with PTSD for familial abuse. There are good therapies for that now. Look up EMDR. It's cool and very effective.

    I am so sorry you and your son have gone through so much. I send love and.light! There is help and hope.
  20. JRC

    JRC Active Member

    SWOT, getting a second opinion is not weird. I never said it was.

    What you are missing here is that NO ONE wants their child to have this diagnosis. I literally doctor shopped to get as much info as possible because I didn't want this to be true. Your breezy attitude about this diagnosis being improbable is insulting. And it's dangerous. But please. Continue as you will. I'll make sure people know that you don't know what the F you're talking about.