CABF Member Asks NIMH to Increase Funding for Research
By: Barbara Troost, CABF Family MemberMay 13, 2005
Good afternoon. My name is Barbara Troost. I speak for myself, and my husband, Michael. We live in South Bend, Indiana.
My youngest daughter is now 30. Bipolar disorder is especially rife in her biological fathers’ family: he, her fraternal aunt, her grandmother, (who was a suicide at 42), and, her 2nd cousin, who was a founder of the National Depressive and Manic Depressive Association in Chicago in the 1970’s. I have an aunt, and a cousin who have bipolar disorder.
My husband adopted my daughter at 5. At 6, she was diagnosed with ADD and an IQ of 137. At 13, her symptoms worsened shockingly. Finally, at 15, while she was hospitalized, we were told by doctors she “was probably bipolar, but she was too young.” And… "she could not physically tolerate lithium”. No drugs other than Ritalin and Prozac were offered. We were advised to try lithium again when she turned 20, good luck, and GOODBYE.
Our family suffered greatly under those years of chaos and brushes with the law. I do not overstate to say it was misery .Yet we could not bear the stigma of giving up custody to the court system. The financial burden of large psychiatric bills, took us near bankruptcy, then years to pay off.
At 16, she was pregnant by another patient she met while hospitalized. That pregnancy was terminated. At 18, she became pregnant again. That child, a boy, is now 11. We raise him. Our daughters’ outcome is very poor. Like many, she self medicates with alcohol and street drugs. She lives on the fringes of society. She was unable to parent. My husband and I have had custody and legal guardianship of our grandson since he was 4.
Then, at 23, she eloped with my bipolar 50 year-old, cousin, after knowing him two weeks. Many years ago, he shot his first wife in the head and jail and court committals followed. Our daughter said she married him “ because they had so much in common.” They have a young child, and they now are estranged. We know we are unable to raise this child too.
When our beloved grandson was diagnosed with early onset bipolar disorder at 10, we were heartbroken: both for him and, for us. We did not know how we could face more years of pain. It is better our “second time around” because of advances in understanding and medications, and the information and support we have received thru CABF. Still, we have many times been strained to near breaking. We know we are not alone; there are many other grandparents in our exact position. Most do not have the resources we are fortunate to have.
Our grandson recently finished 14 weeks here at the NIMH, as a child volunteer in Dr. Liebenlufts’ Severe Mood Dysregulation and Lithium in Children study. He was a “tough customer.” We are truly grateful to the NIMH, and Dr. Kenneth Towbin, and his wonderful staff, who carry on this difficult research while giving children sensitive and world-class care. We know that research is the only way to stop this horrible heritable disorder that at the very, very least, robs innocent children of happy and healthy formative years.
Our boy is now at a residential treatment facility, which is covered by insurance. He will then go on to wilderness therapy. The cost is $20,000.00 for 60 days. These funds detract from our retirement. But, we have it. Most parents do not. Experience has taught us that intervention MUST come while a child is still manageable. So, early accurate diagnosis and therapy must be a priority too. Treatment begun too late helps guarantee a dismal prognosis. Information must be disseminated to Pediatricians! They are the first to hear of parents confused concerns. They must be trained to question, and to see the red flags.
I ask that the NIMH increase childhood bipolar and mood disorder funding dramatically by transferring adult study monies to childhood research, now that it is known that mood and bipolar disorders, and the root of schizophrenia begin in the early years. Current funding is such a tiny percentage of the budget. I respectfully ask that you consider that mood and childhood bipolar disorder, narrow or broad, with its’ societal implications, and sheer numbers, is crucial.
Last summer I had a conversation with my grandson, after he calmed from a rage that bears repeating. He said: “if my mom has this, and I have this, my kids will probably have this too, huh?” This child is highly intelligent and no fool…. I told him “yes, that might well be so” -- as I thought of my secret prayers to God that he, like his mother before him have no children. He began crying: real sobbing, and said: “ no NICE girl will EVER want to marry me”…he then screamed out in near hysteria, ”Why can’t they give me a shot to cure ME?? ” I’ll take the shots grandma!! I promise!!!!
Please help my grandson, and the thousands of other children like him.
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