Discussion in 'General Parenting' started by Steely, Aug 20, 2008.

  1. Steely

    Steely Active Member

    So, I am battling with a bit of a conundrum.

    difficult child used to be nothing short of brilliant off medications. His ability to draw, remember facts, people, places, strategies was amazing. Especially his artistry was striking, her drew pictures that were unbelievable from the age of 5 on. His knowledge of art, music, is striking.

    When we had him tested at this time his collective IQ was 135.

    Unfortunately the more brilliant he was, the more manic he was. He could draw a breathtaking picture, and then be in a rage within seconds, tearing up the picture, and then his room. It got to be where I dreaded his artistic moments, because they always ended up in disaster. I would steel myself in another room, or leave, because I knew what was next. Yet.........he had this gift.

    Over the course of the next several years from 10-14 he spiraled downwards, and fast. He was on more medications than I can remember, and hospital many times. And suddenly his brilliance within certain areas was gone. He was re-tested and his IQ had dropped 20 points. He no longer drew, or had any interest in the arts - whereas before he spent hours a day drawing.

    As sad as I was about his mental cognitive function decline, I also knew if he did not take these medications I would lose him completely. Completely. So he has been on medications since.

    The last 2 years, we have finally found a medication combo that actually works, and he is more stable than he has ever been.

    Last night he came in and starting talking to me about opera, and naming the characters and plots of certain operas, and asking me if I had ever heard them sing.
    "They are amazing," he said.
    (Personally I hate the opera, so it's not like he gets this from me.) We started looking them up on the internet together, and discussing all of it - and I realized it has been years since his interest in the arts has re-surfaced.

    It disturbed me when I remembered where he used to be - and it disturbed me that it is gone. It really tore at me.

    So I question if he is stable enough now to start d/cing some of his medications and have his mind come back into full action? I don't know. His creativity has always been his demise. The more he would get into a project, the more he would self destruct later. Now, he is just even keel, but about everything. Nothing really motivates him - at all.

    I guess I just ask your opinions, as they always give me so much to think about.
    I think of Edgar Allen Poe.........Van this day and age they would have been medicated. Would they have lead possibly a happier life? Probably. But then their gift to the world would have been gone. It conflicts me.
  2. witzend

    witzend Well-Known Member

    Steely, if he's bi-polar, isn't it most likely that he is stable because of the medications? Isn't he more likely to be able to enjoy these things without the mania if he stays on the medications? I mean, his interest is piqued, so it seems logical to see where it goes along with the stability of medications. Maybe he is still brilliant, and seeing it through clearer eyes.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I'm no expert, but am not seeing medications that cause too much cognitive dulling. Maybe Lithium can.
    Frankly, I was told that bipolar, the disorder itself, causes cognitive problems and memory issues as time goes on. But if he is stable, I wouldn't mess with it because if he becomes sick again, will it matter if his IQ goes back up if he can't function? JMO
  4. TerryJ2

    TerryJ2 Well-Known Member

    That's why my bipolar friend won't go on medications.
    I don't know how much of it is a myth (as Capt. Kirk said, "I need my pain.")

    I do know that you are asking an age-old question that only you and your son know the answer to ... and eventually, when he's of legal age, only he will have the wherewithal to do something about it one way or the other.

    I think I would have him practice drawing or doing something musical while he's still on the medications, and have him deal with-the ensuing meltdown when it's easier, and then wean him. But maybe he's not having any meltdowns? I'm not sure how "stable" stable really is. Know what I mean??
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Just from my own bipolar experience, when you go off the medications, you can no longer maintain stability. It's not something you can learn to do. It is a medical disorder. It would be like going off of insulin when you had a serious case of diabetes. I personally would rather be a little dulled than suicidal and crazy and driving everyone else crazy On a more serious note, 60% of all people with bipolar who are not medicated try to commit suicide and there is a high success rate. One in five with bipolar succeed in committing suicide. I would NEVER take that risk with my child, and wouldn't want the child to think, "I don't need my medications." It's a disorder that can be fatal, and, sadly, I know a few bipolars that did kill themselves. JMO
  6. Steely

    Steely Active Member

    Yea, MWM.............that is exactly what I mean. I would never wish pain on anyone, let alone my son. Which is why he is on the medications.

    I guess I worry, because he does not draw, at all, period on the medications. This conversation I had with him about the opera was a first in years. He has no desire to be artistic anymore. I can't ease him into it, because he does not want anything to do with art.

    Maybe part of it for him, is that now that he is stable, he remembers all of the times creativity brought him to his knees, and he is trying to steer clear of it all.

    I don't know. I guess it just makes me sad, because I feel like I am cutting off some gift god gave him, to save his mind. It really is a hard concept when you look at it head on.
  7. TerryJ2

    TerryJ2 Well-Known Member

    Could be. Sigh.

    It's also hard to compare your difficult child to geniuses like VanGogh and Churchill, because there is a spectrum with-everything and we don't know for sure all the details of their cases.

    I feel your loss. I'd encourage him to pursue whatever he's interested in, in the hopes that something will "stick." There is a fear factor there that may be thwarting him unneccesariy, IOW, in order to be good at something you have to work at it and sometimes that means you fail (albeit temporarily).
  8. Shari

    Shari IsItFridayYet?

    There's also the consideration that 100 years ago, childhood ADHD and even mild mania could be channeled and an asset to a self-sufficient farming family...many of the characteristics we have as humans today served a purpose in the past that's gone - ie stress eating, hyperventilation, etc.

    Tough call, tho. Guess its worth talking to his doctor about.
  9. klmno

    klmno Active Member

    I'm going to throw out the unpopular option, sorry- no offense meant to anyone. Our plan is to try taking my son off medications after going through therapy IF has been stable for at least one year (no mood cycling and no legal or school problems). We might never reach that point, but here is the reasoning behind it:

    We don't know for sure that my son is truly bipolar (although he definitely has mood cycling now) and there is some thought that he still might be primarily suffering from depression and he needs therapy to deal with some issues. He also needs therapy to learn preventative techniques and coping skills. However, the cycling might have been started from the prozac, and if so, his brain never had time to heal before being put on mood stabilizers. We didn't have a lot of choice about this- with all the legal problems it was just too risky. Anyway, the psychiatrist felt like there is a good chance in difficult child's situation (not speaking for everyone) that his mood cycling might stop at some point in time and he might not need to stay on mood stabilizers. Also, my thought is, if we doon't go through this process, difficult child will stop taking his medications as soon as he's old enough and moves out of the house, and it's unlikely he'll do it under a psychiatrist's care. I would much prefer to give things a chance without medications while he's a teenager, living at home, where I can make sure he comes off them very gradually, under psychiatrist's care, and with me around to "jump in" and get things turned back around if the need arises. I figure that process will let us both know, for sure, whether or not he has to have medications to function permanently (ie- that he is truly BiPolar (BP)).

    I understand exactly what you are concerned about, Steely. My son's qualities are different than your son's, but he has abilities that I've seen swept under a rug, so to speak, since being put on these medications. Not to mention the side effects and long-term risks. And, I swear, I have a nagging feeling that these medications are making something worse. Everyone tells me that can't happen, but then I've also heard that the brain gets dependent upon them so the slightest change in balance after a person is used to taking them can make them more symptommatic then they would have been if they'd never taken them. All this worries me a great deal.

    So, I would suggest thinking a lot about how sure you are that he is BiPolar (BP), how risky is it to give this a try (how unbalanced did he get before?), how bad does he want to try it, would he come off extremely slow and be willing to go back on if things weren't working out well, does he notice and will he tell someone if he starts getting depressed or manic?

    You have more experience than I do with this- I'm just throwing out what I think needs to be considered. I'll be interested in hearing what you decide and seeing how it goes!!
  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I can tell you that I think going off medications for bipolar is very dangerous because therapy can not control the medical reason for moodswings nor stop the suicidal thinking and/or attempts. Even unipolar depression is dangerous and if it's clinical it is hard to control without medication. I coudn't do it. But that is your choice.
    To the orignal poster: As for creativity...the first time I was in the psychiatric hospital I read a really good book called "Moodswing" by Ronald Fieve. I highly recommend it. It is all about how creative people have a MUCH higher rate of mood disorders than the control population--how creativity can possibly be a form of mania.
    When I first got stable, I did not write at all. Since I used to write all the time, it surprised me that I no longer had the urge. It had nothing to do with bad memories--the medications took away the mania that triggered my creativity. I may also add that triggered my rage, my defiance, my shoplifting, my feeling that I could do anything and get away with it, etc (grandiosity). In general, I didn' t miss that although I greatly missed the "high" feeling of hypomania (this is common. YOU feel great, it's just everyone around me that wasn't so good with
    In time, my creativity came back. I don't know how it will be for you son. in my opinion it's better to be less creative, but be able to function in the world without ending up in jail because you think you won't get caught stealing or ending up in Thailand because you met someone online and stole money to fly there to meet him. Call me silly, but I'll take stability :)
  11. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Interesting post to me because I have been thinking about this a lot lately. My difficult child is a lot younger than yours but I've been wondering just how much cognitive dulling he experiences because of his medications.

    When he was in first grade and the sd did testing, he qualified for Special Education because of his behavior. He scored in the superior range in a couple of areas (verbal/linguistic and something else) and was above average to average in other things. At that point nothing was below average.

    Two years ago when we had his neuro-psychiatric testing done, he was extremely below average in everything, some things as low as the 1-5 percentile range.

    Granted the testing was done by two different individuals, different tests and I put much more stock in the nuero-psychiatric's testing but still it is an amazing difference.

    Before medications he was such a creative problem solver, not so much anymore.

    Sorry, I know I'm not helping much but I do understand where you are coming from. With my difficult child I'm 99% certain medications are necessary, still there is that nagging doubt.
  12. totoro

    totoro Mom? What's a GFG?

    Steely~ I know what you are saying and feeling. We can look at the facts, the science. But, we can not take our heart out of it, the emotions.
    I struggle with this decision, with my Bipolar as well as for K.

    It is easy to rationalize the sensible choice. I do not like losing my ups. Even though I have been hospitalized, have been addicted to things have made many bad irrational choices.
    My mental illness also has formed who I am now. I was never medicated (self medicated though) until I was in my 30's. I can't honestly say I wish I had been. My life may have been easier. I could even have dulling from not being medicated and self medicating?
    For me now, I am exercising, eat healthy and keep a schedule. I take mega vitamins and am still on medications. But I am slowly decreasing them as much as possible. I am also at this point, pretty good at ID'ing when I am going too far up or too far down.
    I know I "need" lots of things to help keep me stable, but I am willing to try and see what the lowest doses I can get by with.

    With K we are pushing the vitamins and at this point not going to keep adding medications until we see that she really needs them. So just Seroquel for now. I have seen dulling from the past medications, she feels it. Her IQ has dropped since her Nuero-psychiatric evaluation 2 years ago. She was right around your G'SFG also, now it is lower. I will never do what we did last year though, when we let the psychiatrist keep starting and stopping medication after medication. "Go slow and stay low"
    I don't know what the answer is S, I wish it was cut and dry.
    I know what "they" say... stay on medications. But not a week goes by that I wish my daughter did not have to take medication, I wish I did not either.
    How does difficult child feel about this? Has he ever talked about it?
    Tough choices at times.
  13. Sara PA

    Sara PA New Member

    Pretty much all the drugs except the stims have some capacity to cause cognitive dulling -- antidepressants, anticonvulsants, antihypertensives, antipsychotics -- some more than others.

    I stopped taking both an antidepressant and an anticonvulsant because of cognitive dulling. Cognitive dulling was the only reason I stopped the antidepressant and part of the reason I stopped the anticonvulsant.

    I had epilepsy, not bipolar. I took anticonvulsants for 15 years and the antidepressant for two of those years. After discontinuning them (years apart) -- the anticonvulsant was stopped over a period of months, the antidepressant I just stopped taking, IIRC -- I never again experienced the symptoms for which the drugs were prescribed.

    I simply couldn't stand how slow my brain worked. Didn't matter that no one else noticed it, I did and I hated it. I was willing to risk recurrence of my symptoms in order to think the way I use to. For me, it worked out. Had the convulsions come back I would have started taking medication again. Had only the partial seizures restarted, I may have just lived with them. Depression would have to be so severe that I couldn't get out of bed for an extended period of time before I'd ever take another antidepressant.

    For some of us, cognitive dulling is a deal killer.
    Last edited: Aug 21, 2008
  14. Fran

    Fran Former desparate mom

    Steely, the bottom line is functioning.
    If your son can function within his disorder then medications are an issue of discussion. Eccentricity is fine as long as your difficult child can function.
    My son was stable for a long time at 15. We decreased medications very slowly. He did great as long as nothing changed. School let out for the summer and I had to go out of town for 2 days. It triggered the mania that was very difficult to get better control. It will be until difficult child himself is willing to try weaning but it would probably be in the hospital.
    My son was once classified as gifted Learning Disability (LD). His strengths continue to be strong but he has never really improved his weaknesses even with all the tools available.
    Suffering for art or brilliance sounds great in theory and in the movies but it's not so good with the day to day living or the life of those around them.

    Maybe now that your son is stable he can re start his interest in art. Sounds like he is doing just that. He may sit down next week and draw. It may not be the brilliance of the mania but it will be satisfying for him, hopefully.
  15. TerryJ2

    TerryJ2 Well-Known Member

    Good point, Fran. Big difference between eccentricity and functionality.
  16. everywoman

    everywoman Active Member

    My son is now 20 and has not had any medications since Nov. 2006 when we sent him to Teen Challenge and he had to be medication free. Prior to that, he was never really stable on the medications. There would be moments, but brief ones. He chose at 18 to not be medicated. He knows the option is there if it gets too much. He chooses to self-medicate with marijuana. Again, his choice. But, he is more stable today than he has been in years.
  17. DammitJanet

    DammitJanet Well-Known Member Staff Member


    This is such a difficult topic. I know without a doubt that my IQ has dropped because of the medications. Would I be willing to go off them to get back the points? Nope.

    My degree is in accounting and today I have a really hard time with simple math. One day I was sitting at a stop light and noticed a sign for a store that advertised drinks 4 24 packs for 15 bucks I think it was. I couldnt do the math. Heck...just sitting here right now Im having a hard time figuring out what the answer is! I said to my son...oh look...six bucks a piece! Ummm....I dont think that is the right answer because he looked at me funny!

    I used to learn anything easily and now I cant. It really does bite. My IQ was tested in high school at 142 so I should have had a few points to
  18. klmno

    klmno Active Member

    We discussed BiPolar (BP) and how it is being viewed differently for children/adolescents, long-term outcome and how this is being researched in counseling today (just myself and intern therapist). I won't go into all that because it is a little lengthy and might be controversial. But it did make me feel better about our short -term goals and "ideal", long-term goals for difficult child.

    One thing that sticks out in my mind is that I consider it a little different if an adult is confident about their diagnosis and knows they need their medications to be able to have the quality of life they want. No one should ever try to convince that person to stop taking their medications, obviously. But when we are parents giving our kids medications and we aren't sure that the medications might not be appropriate or that they might be doing harm in some other way, or if we're in a position that we aren't confident about the diagnosis or the kid is an older teenager who isn't comfortable with it either, I cannot view that the same as the adult making their own informed decision about themself. Nor can I view it the same as a parent who refuses to give a kid medications when they clearly need them for safety.

    In difficult child's case, right now he has to have them- there's no question about that and he takes them. But, as I said before, the day might come (a few years from now) when I am not as sure that he still has to have them, or that he wants to try coming off them, and I'd rather try it while he's still a minor and living at home.

    As long as the only choice is either mania/suicidal tendencies and having better mental ability OR being stable and having less mental ability, difficult child stays on medications.
  19. Steely

    Steely Active Member

    Yea, I agree with all of you in, in so many ways, and on so many different levels. It is all hard.

    I guess I am grieving the loss of part of a child I knew. There seems to be so much loss in having children like these. Their loss of innocence, their loss of themselves, their loss of a normal life. It just get to me sometimes. It does not seem fair that part of their positive traits get lost in all of this, in addition to having to deal with all of their daily mental cr@p.

    I really do think I might start slowly titrating down on his medications. Slowly half a mg at a time, and just see what happens. We are in a place where if he gets out of control, he will readily take his medications again. He no longer poo-poos them, but sees them as an aide. When I talked to him about what he wanted to do, he told me it was up to me, I was in charge of that. Which, I think means he trusts me implicitly, and does not want to to take responsibility for making such a big decision.

  20. klmno

    klmno Active Member

    He sounds really cool and sweet, Steely- I think you've got a great kid!! Whatever you do, I hope you keep a psychiatrist in close contact- just in case!