Wednesday, July 13, 2011

Are You Real Mama Bear?

After posting my response to the media’s negative attention on children with bipolar disorder, I received a comment asking if I was real. This person accused my blog of being a marketing campaign for CABF (Child and Adolescent Bipolar Foundation). I was so surprised that my authenticity was in question, so not only do people think that we’re bad parents for putting our kids on meds, but they think our stories don’t even exist. It shows that we have a long way to go in ending the stigma for mental illness in children. Taking one step at a time, here’s the response I left:

Are You Kidding Me!!!

LOL! I can’t believe you don’t believe I’m real. I’m not even a writer. I’m just a mom who has been living in hell for the past 3 years trying to help my son. The only reason I’m anonymous is because I’m trying to protect my son’s identity. He’s only 10 years old and I don’t feel comfortable using his name publicly. He’s aware that I write it anonymously and has given me permission to share his story. As for my cheap photos, yeah they may look cheap, but that’s because I’m writing my blog for free and I use a website that offers free photos for use in blogs, that’s what real bloggers do. If I was being paid to write on behalf of CABF, the first thing I would do is request access to some decent photos.


I started my blog because I was feeling completely alone, I couldn’t find anyone who had the answers to my questions or who could offer me support for what we we’re going through. If you read all 238 posts over the last 18 months, you can’t in anyway deny that I’m a real person. I’ve asked all the tough questions, cried over my fears and the challenges we’ve gone through. Not every experience with medication has been positive, that’s what makes this whole experience suck, our kids face a medical community that doesn’t have all the answers yet. In fact, I just went to Standard this past weekend in search of more answers by asking researchers the questions face-to-face. But just because we don’t have all the answers to our child’s illness, doesn’t make their illness or their family less real. We are real people, with no agenda other than to have society stop judging us and our children and be kind enough to offer us support like the way you do for children with cancer.

My friend’s son had a brain tumor and she too had to make tough decisions with medication and treatment options. Even tough he’s now in remission, she still faces the concerns of the long term effects of those meds, but she needed to use them to save his life. This is very similar to our own experience. I wish my son didn’t have to take any medication, but after having to lock up all the knives in our home because our son wanted to stab himself, after suffering my own bodily harm from my son going into rages and attacking me or seeing my son beg for the doctor to give him medicine to help stop the bad side of his brain from taking over the good side, medication became necessary. And just like my friend, we’re concerned about the long term use of these meds, that’s why we reach out to other parents, doctors and researchers. We want what’s best for our child, we are trying to save their life.

Every word I write is real and the quotes above are from my son’s mouth. I wish this wasn’t my life, I wish that my son could have his life back and we are working on that. I wish so much that my blog was fake, but unfortunately, I am real.

16 comments:

  1. Wow Mama Bear! Your response was well-written. I can relate to every.single.thing you write in your blog as our son has the same condition. In fact, you conversation with your son's doctor prompted me to ask about a mood stabilizer. I hope we get somewhere.

    Blessings to you and yes, you are real!

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  2. OMG, I cannot read comments from idiots like this. I commend you for your eloquent educating response. I probably would have used a lot more four-letter words and told him/her to take a flying leap. I honestly don't care what other people think... I know my son needs help and I'm doing whatever is in my power to help him. I invite those people to come live at my house for a couple days and see how "fake" this illness is.

    I so appreciate your blog and your "real" stories about what we live through every day! You are the best!!!

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  3. I just can not believe that!!! People just have no idea what goes on in the 'real' world. The sad thing is that your story is not unique, that you are a voice for so many of us who have lived with and are still living with this everyday. My daughter is now married but she lives 5 minutes away and I am very much still mothering her and assisting her husband with managing her bipolar condition. To think that we make this c**p up is just insane. Keep your chin up. you are doing an amazing job in the most difficult of situations. I understand that people may think we make this up because it is 'crazy', but it is our life, our babies lives that we fight for everyday. We fight the battle to keep them alive literally. Every Christmas, birthday, mothers day i would look at my daughter and thank God that we made it to that day. To see her walking down the aisle made every one of these days of hell worth the fight. The fight not only against the bipolar itself but against ignorance, judgments and criticism. I am a mama bear, so hear me roar!

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  4. I am appalled at this even being a question. This comes from someone who obviously is lucky enough not to have to deal with mental illness.
    I applaud your response, Mama Bear, though like another responder, I can't say I would have been as articulate as you were in your response. At least we know that we all have the same goal: to help our kids live a normal happy life. LEt's keep supporting each other!

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  5. GAH! (I tried to reply to that guy's comment on the website--but I'm not sure it went through.) And what the heck was that guy's point? It's not like CABF is some evil organization trying to create an army of kid zombies... I guess it is one of the dangers of the internet (or the media): the power to say stupid things.

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  6. I think the CABF is exactly that, "some evil organization trying to create an army of kid zombies" for selling drugs. Just search for Joseph Biederman and how he is linked to bipolar diagnosis for children, big pharma and the CABF.

    Maybe there are a few real bipolar children who need this meds, but Pediatric Bipolar Disorder is vastly overdiagnosed in the US. This disorder is practically non-existent in Europe. I know depressed people, I know people with Schizophrenia (one of them died from the side effects of the antipsychotics), but I never met or heard about a kid with bipolar disorder.

    This doesn't mean there are some kids who benefit from the meds you use for bipolar disorder. But suggesting that Pediatric Bipolar Disorder is a very common illness like the CABF (bpkids.org) does is unethical.

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  7. Just because you’ve never heard of or met a child with bipolar disorder, doesn't mean that it isn't a real illness. It takes an average of 16 years to get the diagnosis of bipolar disorder, so many people live years with the symptoms before they ever receive the label.

    If you ask adults who were diagnosed with bipolar disorder when they were adults if they had symptoms as a child, they will tell you "yes"! I have come across countless stories of adults who had symptoms as children, some famous examples are author Terri Cheney who explained in her memoir that she wished she had help as a child, that she didn't have to live with the "black beast", she even tried killing herself at the age of 7. Danielle Steele shares in her story about her son (who committed suicide at the age of 19) and how he had classic symptoms of staying up all night long with too much energy and having moods like a tornado and becoming depressed. There are many more examples out there, heck, just ask some of the followers on this blog who have the diagnosis as adults if they had symptoms as children, I know of a few right now that would say yes.

    As for CABF suggesting that Pediatric Bipolar illness is "very common", I would argue that they do NOT suggest this. They only advocate that it does exist in children. No one is saying that it’s a common illness.

    As for the study claiming that bipolar rates are larger in the US than other countries, well already there's been a lot of discussion for why that is, one being that the illness is more prevalent in richer countries, so where there is more medical care, there will be more people diagnosed.

    Also, there is greater awareness and understanding for BP in the US, this brings more acceptance and more people seeking treatment for symptoms that may go unrecognized in other countries. So instead of a person seeking help for their symptoms, being aware that they may have a mental illness, they may turn to drugs and alcohol to self medicate.

    Another issue is the stigma of mental illness. The bigger the stigma, the less likely someone will get help. This may be the case in Japan who has very low rates of mental illness in a culture where such differences are seen as weaknesses that aren't accepted.

    Another theory discussed is the melting pot theory, that the US represents a history of people who took risks to come here to the US in pursuit of a better life. This melting pot brings the genetics of "risk takers", a pool where the rate of bipolar disorder will be greater. In research, they found that where the rates were higher in the US, the parents of those cases had higher rates of mental illness also and one of the greatest risks to getting bipolar disorder is heredity.

    I think there's so much more research needed before we have our answers, just this past weekend I heard Dr. Singh from Stanford mentioned that studies show that our rate of pediatric bipolar disorder is similar to other countries. I hope to get the name of this study to back this claim up, in the meantime, I’m very curious.

    continued...

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  8. Please know that these drugs are not turning our kids into "zombies". When a child receives the right treatment (very difficult to accomplish), the child thrives. Also, in our experience no one is rushing to give my son a diagnosis of bipolar disorder, We are 3 years in with our HMO and they are still reluctant to give him the label, acknowledging that his brain is still developing and even though he has symptoms that reflect it, they are still uncertain. But they also acknowledge that he needs treatment today and are doing just that.

    Our son continues to amaze us. He is more engaged, more creative, having more fun with other kids, desires to play, compromise and resolve conflict appropriately. He is more alive then I’ve ever seen him. Even his face is more bright and his expressions more radiant than ever before. Prior to medication he was hurting all the time, he was miserable. Medications are giving him his childhood back.

    I may not have the mountains of research in front of me, but I have all I need in order to confirm that we are doing the right thing for our son.

    Our son is doing better because thanks to medication, he can.

    * * *

    CNN story of US rates of Bipolar Disorder:
    http://www.cnn.com/2011/HEALTH/03/07/US.highest.bipolar.rates/index.html

    Article discusses higher rates of bipolar disorder and family history
    http://bipolarnews.org/?p=486

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  9. Oh my god my sweet Mama Bear! I read this the day you posted, but could not respond because it really made me angry (YOU didn't, but the audacity of ignorance did)! Please, ARE you REAL!? This commenter obviously has never read your blog or any of the other parents who are truly struggling with what we are day to day. Niether has this person done any research regarding the true issues surrounding childhood bipolar disorder.
    You are truly a warior for all of us my dear as you eloquently slash the daft and dumb with your wisdom, truth, and reason. There is nothing left but truth when we live with the children we are raising, as we HAVE to have the sharpest senses and the most pationate hearts to admit to the pain our children are suffering, so that we can get the help for them that they so desperately need.

    I'm sorry you were put in this position within the "community", but you certainly are the Bear for the job! :)

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  10. Mamma Bear, I was the first Mom to speak up in the article about the frustration of the bad press bipolar disorder gets. It was with a mix of relief and sadness that I read your reply. Relief that you helped me to feel less alone, and sad for your son and the kids just like him. I am not even going to comment on the guy that thought you were not a real person, except to say there is no way we could make half of this stuff up. ;)

    Thank you for sharing your story and for the link to your blog. I didn't realize there were blogs like yours out there and I am looking forward to reading it.

    Susan

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  11. Hi Susan! I’m so glad you found us, these blogs have been a great way to end the isolation we so often feel. I look forward to hearing more from you, feel free to vent or just share your story with us, I read every post, sometimes more than once when I need encouragement. I’m off to read your comment on the article, it will be nice to read something that doesn't put us families down. : )

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  12. OMG I could have sworn I commented on this post....but I guess I didn't submit it. I just wish to say that children can suffer from Bipolar disorder. I only wish I had been diagnosed earlier because that could have saved me from several breakdowns, a couple of institutions, and even some heartbreaks from losing friends due to my irrational behavior.

    Also, it is sad that some people are so opinionated that they refuse to recognize or even acknowledge the facts and symptoms placed before them.

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  13. In the Pink-Thanks so much for chiming in!

    I kinda appreciated the opportunity to explain our situation to those that don't believe it, I know many people think this way, so to have the chance to share things from our perspective is helpful for me, I wish I could do it on a larger scale!

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  14. I am a little late chiming in on the accusation of CABF, but wanted to share this:

    From the CABF website:

    "Bipolar disorder is a hereditary illness believed to occur in at least 1 - 2 % of the adolescent and adult population, with bipolar spectrum disorders believed to occur in 5 - 7 %. The number of children diagnosed with bipolar disorder is rising as doctors begin to recognize signs of the disorder in children. Children with bipolar disorder are at risk for school failure, substance abuse and suicide. The lifetime mortality rate (from suicide) is higher than some forms of cancer."

    That is 1 to 2 % of children and adults combined. Obviously there are more adults with a bipolar diagnosis than children, so that would be less than 1 or 2 percent of children with the diagnosis.

    This doesn't sound to me like they are saying it is very common. The point is it is real, and these children (and their families) need help, not judgment and hatred.

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  15. I had a friend with schizophrenia. She took antipsychotics, she didn't get better, she died because of the drugs. One day her heart stopped beating, a known side effect of the drugs. Give your kids all meds you want, but be aware that many of that drugs are most likely harmful to the brain and the body in the long-term.

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  16. Anonymous-I’m so sorry to hear about your friend. I understand the warning you give about the long term affects of these drugs, but what we face is also the long term affect of not treating the illness, which can also lead to death.

    It is unfortunate that families have to take these risks, but we are reminded that even Tylenol and Advil come with serious risks in a very small percentage of people. Not everyone will experience heart problems, only a very small percentage might, most will do better and have a life worth living, unlike the option of not treating the illness which only brings complete pain, self medication and sometimes suicide.

    Being aware of the potential harm medication can bring, we are very careful in having regular blood work to monitor the function of these vital organs to make sure they are safe, along with appropriate dosing.

    Just as cancer patients take risks with their vital organs when they seek chemo treatment, these patients have to choose between the less of two evils. They have to make a risk-benefit decision. This is the same for our child. We have to make the decision to have him live with symptoms of his illness or side effects from the medication. Neither is optimal, but for us, the choice to go without meds is unbearable for my son.

    Without meds he wants to kill himself, he has no pleasure in life and he is living in a nightmare seeing monsters that don't exist. This is not a life.

    Now with meds, he feels happiness, he enjoys life and can live many years getting the most out of it.

    I hope that someday the medical community will come up with better options for treatment, but until then, we are left with no choice but medication and therapy.

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