To those scared to hear "Bipolar"

Discussion in 'General Parenting Archives' started by NicoleP, Apr 10, 2004.

  1. NicoleP

    NicoleP New Member

    We were too. We were almost willing to keep treating our son for ADHD/ODD because it seemed moreh hopeful, even though he was getting progressively worse. Hearing "bipolar" does not change who your child is. It does not make him more hopeless. It does not make his future worse. It does not mean he is hopeless. In fact, bipolar is very controllable, and many very successful people are bipolar. Your child is the same person he was the day before if he gets a diagnosis of bipolar. The only difference, a big one, is that you know how to treat it. Stims and antidepressants, so often used for ADHD, can make bipolar worse. It DOES matter if you get the label, at least I think so, because the label helps you get the RIGHT treatment. ADHD is not as severe as bipolar, from all i've read on it, and is not progressive. Bipolar, UNTREATED, is progressive and your child CAN get worse. Each cycle causes the brain more is called the kindling effect. The drug Lithium can help health the brain---it has MANY benefits. Unfortuantely, a lot of psychiatrists, not really "up" on bipolar, are more prone to use newer, less effective medications, but Lithium also has anti-suicidal properties. It is important to treat BiPolar (BP) before the teen years as that is when 80% of all kids with bipolar abuse substances, and that just makes them dual diagnosis kids---kids with brain disorders PLUS substance abuse issues. Then they have TWO demons to battle. I have many relatives in my famly, with unmedicated, untreatead bipolar, who are now also heavily into alcolishm or even cocaine abuse. WARNING: The stimulants used for ADHD are very often abused by teens. I have no opinon on whether or not they should be used for ADHD, but a niece of mine who was an addict for a few years, says they are hot drugs on the street and teens often fake ADHD to get them. She says they use pillcrushes to crush them, then snort them, either alone or with other drugs. She says she was addicted to stims during her drug years. yes, s he had an ADHD diagnosis. I hope this little blurb helps. I know where some of you are coming from . Bipolar seems like a death sentence, but only unmedicated, wrongly treated bipolar is that horrible. Bipolar misdiagnosed is far worse. (((Hugs))) to all.
  2. Fran

    Fran Former Site Owner

    Nicole, you are right, of course, but not everyone has experience with bipolar or even treated mental illness. Many folks know only what they see portrayed by dramas as untreated manic person who is out of control.

    There is truth to their fears also. Getting off medication is a problem once someone is feeling better.

    Most of the parents who come here start out being terrified of the possibilities. With time and education and a genuine love of their child they come around to doing the right thing for them. Everyone comes to that place in their own time and with their own way of handling it.

    My son has a great deal of potential but he has a great many obstacles to get around, one of which is bipolar. Truthfully, it is the least of his problems. It is just a part of the mix.
  3. NicoleP

    NicoleP New Member

    Well, I know and I also know how they feel /importthreads/images/graemlins/smile.gif Just trying to be encouraging and hope didn't come on too strong.
  4. tinamarie1

    tinamarie1 Member

    For anyone to say that mental illness in your "baby" is nothing to be fearful about...well, thats kind of insensitive in my opinion. I know you mean well by what you have said, but you have not grown up where I have and in the family that husband has. Here, there is big stigma attached to mental illness. There is a hospital here that kids joke about and say, your mom is gonna send you there (difficult child has had to go there). I am in the heart of the bible belt where preachers have been known to say that the mentally ill are just possessed by demons. THATS NOTHING TO BE SCARED ABOUT? Yeah, really it kind of is and especially knowing that your child has to face people who think in such an ignorant manner (ie: the preachers and followers). Also, we have experienced targeting from our home school once they know difficult child has problems, they assume he is the one always causing problems.
    And really, don't we as parents want to tell our children "you can be anything you want to be when you grow up"...and for a dad to have to explain to his son, sorry you can't be a fireman like the 3 generations before you, or a police officer like your grandmother was or be in the military just like I (dad) was because you have BiPolar (BP). That has crushed my husband, and I have to be a little sensitive to his feelings and allow him to cope with it in his own way as difficult children dad.
    I am terrified every day of what challenges difficult child is going to face, or what trouble he is going to get into or what new diagnosis lies around the corner. It is scary, but I try to take one day at a time and not feel so overwhelmed. I think its totally normal to feel scared about these things.
  5. Fran

    Fran Former Site Owner

    B/P is a spectrum also. Some are less affected or better able to function with medication. Some have overlaps of learning disabilities, or other thinking disorders. It will complicate and make the future a little more "unknown". Environment and intervention have an affect also in the outcome of b/p.

    No one knows what the future will hold for our kids. No one knows what research will bring out for our kids in terms of treatment. You have to have faith that there will be a place in this world for everyone.

    There is no doubt that raising a child with b/p or AS or MR or Reactive Attachment Disorder (RAD) is not easy. Each of us grow through the different stages of grief, mourning, anger, frustration and acceptance several times in the course of raising our children. I still get so mad that my son had the misfortune of getting our particular mix of genes. He has to work so dang hard to do what other kids do so easily. I then go through a period where I am not so angry.
    Over riding almost every day and every decision I make for difficult child is fear. Fear of the unknown. Fear of the possible complications and even more the fear of what I do know about my difficult child.

    If I am still fearful and angry about issues aimed at my difficult child who is almost 20, I suspect someone new to the diagnosis and the potential pitfalls will be fearful also.

    Nicole, I think you wanted to put a positive spin on b/p and we should. It is not the end of the world but is does take time to find your center when a diagnosis is new. No matter what that diagnosis is.
  6. timer lady

    timer lady Queen of Hearts


    I am fearful for my difficult children and their diagnosis. Not the diagnosis itself (which is a frustrating and confusing disorder to treat) but at the preconceptions of people who do not understand a mental illness, b/p specifically.

    The media has used this & other mental disorders for entertainment purposes and in the process have misled the public on the realities of living with this type of disease or disorder.

    The hard part for me is the lack of closure. The ongoing problems - social, emotional and personal are huge. With so many of the physical illnesses there is closure. A recovery period and then wellness or sadly at times death. And those same physical illnesses are understood and tolerated, if you will, unlike the mental illnesses that still have such a stigma attached.

    I am fearful for my GsFGs future. Fearful that stability cannot be attained or retained. Fearful of the holes they dig themselves into that just keep getting deeper and deeper. And I will do my best to guide them, get them all the help they need, raise them with morals and hope they stick.

  7. NicoleP

    NicoleP New Member

    Well, I never said it was no serious or that there is no stigma. My family is full of bipolar and I grew up with it. Denying a child has it, however, doesn't help the child. My son has it. He is doing great and had he not been diagnosed with it, he would still be floundering with ADHD medications, which didn't help him. Not everyone with a brain disorder (as I like to call it) is incapacitated. There are lists of bipolar folks who are as productive as Abraham LIncoln, Winstin Churchill, and many, many movie stars. Calling somebody who is bipolar NOT bipolar doesn't mean they are different or don't have it. To me, I'd prefer this diagnosis, which is helped or controlled by medications to CD, which is not. This is just my opinion, of course. I just hate to see people suffer just because their child has a label, when there is so much hope. They have made so many strides in just ten years. In another ten, when our kids are grown, I expect them to have made many, many more. I see kids here who have just labels of ADHD who are in worse shape than my son....the key, in my opinion only, is to know exactly what you are dealing with and to tackle it the best way you can. It doesnt' help to treat a pnemonia like it's a cold, nor does it help to treat any brain disorder as though it were something else. Again, this is all just my opinion and experience, and I am personally glad not to be too afraid of the label to help my son. I know we ALL want to help our kids, but sometimes that means facing the difficult. Hugs to all of you /importthreads/images/graemlins/smile.gif
  8. SunnyFlorida

    SunnyFlorida Active Member

    I was/am one of those who is very fearful about my difficult child 1's diagnosis of BiPolar (BP). Why you ask? because although BiPolar (BP) can be treated, the treatment does not always last and it seems that the medications need to be adjusted frequently. This is not like asthma or allergies. This is more like brittle diabetes.

    Also, raising a child to take medications is one thing but things change when they hit adolescence. They must test the waters, they want to be like everyone else, they don't want to be different even though they know they are. It's very heartbreaking to hear your child say that they hate themselves.

    Mine has gone off his medications at least twice since starting medications for BiPolar (BP), that I know of. this last time he really felt the difference and has been taking them regularly. While our psychiatrist is one of those who use the newer ones, he does that due to the literature describing side effects. Lithium is the gold standard, but it has a limited theraputic window and blood levels are required. It's one of those medications that you can try but if you go off of it you may not be able to go back on it as easily. So they hold off giving it unless the others aren't working.

    I am not up on BiPolar (BP) research so I don't know if BiPolar (BP) should have been the correct diagnosis all along or if ADHD kids have a greater tendency towards BiPolar (BP). I do know my nephew was diagnosis BiPolar (BP) at age 19 after a manic episode and has been on Lithium for 5 years. His psychiatrist is attempting to remove the lithium at a very slow rate.

    I am saddened that my difficult child 1 seems to have all the mental health genes on both sides. There has been a good change in him, I just pray that it lasts and he succeeds.

    NicoleP, I thank you so much for your advocacy for BiPolar (BP) and look forward to learning from your knowledge.
  9. slsh

    slsh member since 1999

    Just MHO, but I think it's a pretty normal reaction to be fearful of any "diagnosis". I was raised in a family where any psychiatric problem was simply due to a faulty character, a weakness. Hogwash, I know, but... it's hard to overcome what we've been raised with. on the other hand, thank goodness thank you is *my* kid, not my parents', LOL. :wink:

    I think also that we need to remember the grieving process and be supportive of folks who are struggling thru the early (or *any*)stages. None of us expected to have kids with- MH issues. Having to adjust our lives and sometimes our expectations, having to help our kids learn to function appropriately (I mean the intensive work we put in, above and beyond the "normal" parenting)... maybe I'm selfish, but there are still days when I'm angry at fate that my son has to deal with- BiPolar (BP). I think grief is a revolving door - you work thru it, but then you have to do it all over again because, as Linda said, there is no resolution.

    Nicole, all you say is right on. There is hope. There are many folks who have lead decent and productive lives with- BiPolar (BP). But I know that it took me a while to reconcile myself to thank you's diagnosis and all that it could mean to him and to our family, the good and the bad. Actually, I think I had a better handle on it when he was first diagnosis'd - kind of an "aha" moment, we weren't crazy, this kid was dealing with more than just "bad parenting skills". Now I think I have more worries and fears about his future because... well, thank you just hasn't had a consistent stabilization on medications (Lithium was a bust for us), he can be pretty volatile, and I worry about his ability to make decent choices about long term treatment. But... one day at a time.

    Just my two cents. :wink:
  10. susiestar

    susiestar Roll With It

    Wow, what a topic. We really touch the heart of everything here. When we were trying to rule BiPolar (BP) in or out for my Brandon, I got tons of fflack from my family. (They visited while I was stressed & saw books I was reading about it). Weirdo relatives be dipped, it was all my fault. If I just hadn't moved and had another kid, he would be fine.

    As soon as my mom found that it was a wiring (read hardware) problem, not a more nebulous problem she could "blame" on me, she was a little easier to take, but it was still my fault.

    Every diagnosis, physical or mental, with difficult child has been that way. My folks don't act that way about my pcs, or my niece, just the 1st born male grandgfg. he can do NO wrong and they can't wait to enable him!! And its all my fault LOL!!!

    With each diagnosis I get scared, get on the web, get some books, learn all I can, and do what needs to be done. And after years of trial and error I always follow my instincts over what my parents, the books, or some md, phd, msw, or othe "expert" who spends an hour or less with my kid says. If it feels wrong, we get another opinion. After I think it through, of course.

    I did the same thing when my daughter had a hernia, when my easy child son got diagnosis'd with-food allergies and asthma, etc... EVERY problem with your kids is scary. Mental illness is worse in some ways because society puts a huge pressure and blame on hte victim and the family. Maybe our generation can help change this.

    Happy Easter to All!

  11. Cory

    Cory New Member

    the key, in my opinion only, is to know exactly what you are dealing with and to tackle it the best way you can.

    You are absolutely right that this is the key. The problem is however, that knowing exactly what we are dealing with is often not so easy. I am comforted by your post, yet my difficult child 1 does not fit the classic bipolar criteria. Her psychiatrist says he is 60-70% sure that's what she is, and is thus treating her on Lamictal. But so far we've seen no significant improvement. It's the fear of the unknown that makes this so hard. We don't know the battle we are up against. All I know is that it breaks my heart to see her suffer so. And I feel so helpless knowing that nothing I am able to do is helping her yet. I only pray that in time we will be able to figure out the puzzle and know how to go about treating it properly. This is a never-ending struggle. First the language disability, then the Tourettes, then the ADD diagnosis (which was no surprise by that point), then depression/anxiety, and now the probable bipolar. All of this just leaving us with more questions than answers. She's only 13 now. How will she ever make it through the very difficult years that lay ahead without knowing what or how to treat it? As far as I'm concerned, this is nothing but a crap shoot and the docs are all throwing darts in the dark.

    I thank each and every one of you for your words on this post. You describe my feelings so well, and at least I know I'm not so alone anymore.

  12. NicoleP

    NicoleP New Member

    Cory, thanks. I really think our kids usually have more than one problem. We just have to hope for the best and do the best we can for them. I guess I've learned not to be afraid of labels...we have had to many...and to concentrate on the problem that seems most serious. It's not that I'm joyful about all this; it's that I have some control since I have SOME idea of the demon we are righting. The other stuff seems less important. Hugs to everyone. I hope this wasn't offensive. i meant it to cheer some of you up...not sure I succeeded.
  13. transformtriumph

    transformtriumph New Member

    Having a child with any serious illness is worrisome for a parent. It doesn't matter if it is a mental or physical illness. This is especially true for an illness that currently has no cure.
    I do feel that bipolar is being way over-prescribed currently and fortunately many children will be found to have a less serious condition.
  14. NicoleP

    NicoleP New Member

    Well, Brady has it. The medications are a miracle for him. Strangely, i think it's the opposite and that many ADHD will end up having bipolar. If anything I believe it is underdiagnosed in favor of ADHD. But that's for the future to tell and we'll all have to see how it turns out /importthreads/images/graemlins/smile.gif
  15. SunnyFlorida

    SunnyFlorida Active Member

    Times certainly have changed. It's people like you Nicole that help us change it.

    I remember when difficult child 1 was younger and it was not a good idea to have an IEP. It was not a good idea to label a child. The services today for children are so much more than they were years ago. Times have changed and its ok to have a diagnosis, its ok to have an IEP, and in fact, it's somewhat protection for the child.

    I don't know if bipolar is being diagnosis more nowadays than before, but if it is...I think that's a good thing. That means to me that more people are aware of it and the more people who are aware then more treatment options will be available and more people will be desensitized to the negative feelings we may have for bipolar.
  16. natalie

    natalie New Member

    Hi All, Finally found time to read this post. Nicole, I confess to being one of those who fear the BiPolar (BP) label. So glad you brought it up, and as always the wonderful souls on this post brought up tremendous points about it. I've often wondered what you all felt about this.

    I really am reluctant to see my child as BiPolar (BP) for so many reasons listed by others here. The diagnosis is new for children, it's life long, the stigma with society, the suicidal risk as they grown older, and an uncertain future. Some psychiatrists I know overdiagnose it, while others are skeptics.

    While I write this, new info is being learned, however. Research is all new and seems to be occuring everywhere. That is hopeful! There is some new scan of the brain called the SPECT scan that is supposed to be a very accurate way of diagnosing ADHD and bipolar. As time goes on we are supposed to know one way or the other if our kids do or don't have the disorders and even the severity. It is being refined, and because of radiation exposure, it is used cautiously on kids.

    I have two cousins who were diagnosed with BiPolar (BP) as adults. Both had successful lives, one as a priest, one as an attorney. Neither of them showed any of the symptoms as children with the disorder. One was a very mild mannered kid. Very soft spoken. The other a pretty average kid. Neither had the meltdowns we see in our kids. Both did well at school. The first was diagnosed in his early 30's, the other in his 40's.

    I am not sure if because our society has grown more aggressive and violent that our difficult children show more aggression than those diagnosed before. Amish BiPolar (BP) kids show no meltdowns like ours. A study was done on this recently which was pretty interesting. Agression isn't a difficult part of the disorder for them and that is attributed to their not watching tv, not being around a fast paced life and not playing video games!!!!

    The lable scares me as the medications for it are so tricky. Like others said, there is a lot of switching and adjusting. Plus, as time goes on some can cause permanent damage to the liver and pancreas. But, our kids have to function. Without those medications, they would have no life with any normalcy. They might not be able to live with us or go to regular schools if it weren't for the medications. It helps so many to feel better. That has to count.

    I think we are all doing the best we can in how we address it, whether it's with medications, natural rememdies, therapy, prayer, etc. Knowing our kids have an illness that is lifelong, without hope for a cure at present is scarey and sad.

    A psychiatrist I know says, however, that we are all born into this life with our own challenges to work through. No one goes forward without their growing edge. She believes it is a task we have from birth. Not all confront their challenge, others work on it all the time.

    What I hold onto is that our kids will have experienced our loving them so much that we pursue any avenue to help them. Hopefully they will feel valued. I hope they will learn to never give up as a result, and that they will have learned along the way how to manage the disorder from the years of growing up with us, the years in therapy, and the assistance in schools.

    No matter what we call it, we still have to learn how to treat the symptoms and what works with our kids. Mine is in the BiPolar (BP) spectrum at the mild end. His is intermittent explosive. Will it morph into a serious form? Will it improve? I can only hope. So many mental health issues are now being called part of a spectrum. Hearing the BiPolar (BP) diagnosis could mean any range of problems as well as many forms of treating it.

    I haven't gotten there yet, but I am trying to find a way to live our life as a family given who we are and what our challenge is. As I am seeing, and Fran, you seem to be one who does it best, accepting the realities and being honest with ourselves seems to help us confront what we face with our kids in a more successful and impactful way. Staying grounded,focussed and honest I think helps me feel less afraid of what my son is managing and what he will face in the years to come. Thanks Nicole for helping us face the fear with each other!

  17. NicoleP

    NicoleP New Member

    Hi /importthreads/images/graemlins/smile.gif I started out posting to try to give reassurance, and got so many thoughtful, good responses. I do know bipolar exists in kids. Not only does my son have it, but relatives have had it. Just as early onset schizophrenia exists, but is still hard to diagnosis., it is none-the-less there. ADHD was once scorned too as was autism by some doctors. I see the difference in my son on Lithium. It wouldn't help him if he had something else, and he did have hallucinations, now controlled. Myself and my bipolar group friends feel it is actually underdiagnosed and called "severe ADHD" a lot and then you go to the older kid's board and see that suddenly these kids have a BiPolar (BP) diagnosis., but my object wasn't to say how many kids have bipolar and how many don't. All I wanted was to hug those who have to deal with it, and to offer hope. My son is doing well as are many of my bipolar relatives. It seems it all depends on compliance, at least n our family. I hope you all had a great holiday.
  18. LAURA

    LAURA New Member

    Dear Nicole,
    I am one of those Mom's who is afriad of that diagnosis. I see my neighbors X boyfriend who acts like a complete and utter IDIOT. He yells and talks NON STOP about the most embarrassing and foolish stuff. NOT ONE PERSON in our complex wants to hear what he is saying. And we try to stay away from him because he has chased people into thier apt and up the stairs ( Me ) when he had a rage attack. My own son is suspected to have this disorder and I am needing as much advice as I can get. I need to find a support group and I see that you are from Illinois too. Can you help me out please :wink: I am having my difficult child re-tested to determine if he is bipolar ? And to see why his ADD and ODD are getting so much worse. The medications are making him act like a demon, and he is so quick to anger. As I learn more and more about this disorder it makes sense why the current medications are making him act worse.
  19. NicoleP

    NicoleP New Member

    Hi there /importthreads/images/graemlins/smile.gif My best guess as to why your son is getting worse is because, sadly unknown to many psychiatrists, antidepressants and stimulants both often, if not usually, make bipolar kids worse. Once we took my son off these ADHD medications and depression medications he finally got better, not until. In our bipolar group, it seems this is the pattern for most of the kids as well. Both ADHD medications and antidepressants activate mania. Your kid may not have ADHD at all. It could just be misdiangosed mania. We thought my son had SEVERE ADHD. As for ODD, that is part and parcel of the spectrum of bipolar and is caused by the medical disorder. Once the chld is stable, he SHOULD be a lot more compliant. Can't tell you all the stuff we'd gone thru. I'm not even sure anyone would believe The honest to God big difference was removing ADHD medications and antidepressants. Lithium also was a great help...I love Lithium. I could do a commercial for I swear it gave my son the normal childhood that he was destined NOT to have. I am daily amazed. SEroquel was a great add on. Rule of thumb in our BiPolar (BP) parent group is "Treat the Bipolar and see w hat, if aything, is left after stability,t hen cautiously CAUTIOUSLY treat it, if the child can tolerate the medication." Most of our stable kids are on Lithium and some antipsychotic. Are these ALL bipolar kids? Of course not. This is our group and it's what I have seen and know. You may want to read "The Bipolar Child" by Dimitri and Janice Papalos. Excellent book and a great medications chapter that I swear I memorized. The wrong medications are almost as bad as no medications, so make sure you have a doctor who will treat bipolar first and worry about the more shadow syndromes later. It took us many doctors just to get past the ADHD/ODD diagnosis., yet treatment for both was not working. I wish you luck. Really, bipolar is NOT the end of the world as I have many relatives with bipolar who function well. One is a high school principal, one is a lawyer, and one is just a regular teacher. The ones who dont' do well are those who won't take their medications (always a scary issue when the kids become teens). Hugs and take care.
  20. Nee

    Nee New Member

    I have had to really struggle growing up with a mom who had severe dperession all her life that required her to have lengthy stays in mental hospitals. The stigma our family faced was very real and painful. My child is helped with concerta and zyprexa. At this point he has not been diagnosis with BiPolar (BP) however off medications I see symptoms that could be BiPolar (BP) or early BiPolar (BP) as he can be very silly at night when medications have worn off. I know the pain of mental illness and I don't want him to go thru
    the stigma nor the severe disabling depressions. Now however I do have a lot of hope d/t the tremendous research/ technology that could bring solutions for these disorders. I hang onto this
    hope. Also for us the low dose zyprexa and the concerta does wonders. The Psychiatric nurse at the dr.'s office says in her opinion zyprexa is an awesome drug. She has seen true miracles in terms of what it has done for patients in her practice. I am thankful I am coping with this problem in my child today and not 50 years ago.It is still tough but I know that for us there may be hope we will see total recovery.