kattriss
Odds are forever in my favor...
Hi all. After many years and misdiagnosis, my daughter (16) was diagnosed two weeks ago with bipolar and PTSD. We have battled behavioral/emotional issues since she was around 2 years old that have escalated over the years.
A little background:
She began having violent rage episodes as a toddler, followed by issues with hyperactivity and lack of interest in school from kindergarten through 5th grade. In 4th grade met with her guidance counselor and school psychologist in the hope that they could help. Though I requested that she be tested for giftedness (as she exhibited a higher intellectual capacity than children her own age), I was instead advised to have her assessed for ADHD. Not knowing any better at the time and looking to them for their "expertise," I made an appointment with our pediatrician to have her assessed. Three surveys later (completed by her teacher, her coach, and us), the pediatrician diagnosed her with ADHD, prescribed Focalin, and sent us on our way...her rage episodes became ten times worse. She was then placed on an additional dose of the medication to counteract the "wear off" of her morning dose...again, rage episodes increased. Finally, after a great deal of pestering on my part, the pediatrician placed her on Strattera and referred her to a behavioral therapist who decided after one visit that my husband and I were the problem and that our disciplinary methods (no different than run of the mill parenting, mind you) were insufficient.
After a year and only a few more sessions (15 minute medication checks), we finally decided to get a second opinion from our old family doctor out of state. He spoke to her one on one for over an hour and point blank told us there was no way that a child with her level of intellect, ability to sit still discussing ancient Egypt and marine biology, and possible photographic memory could have ADHD. He advised us to wean her off the Strattera and ordered blood tests to see if her rage and school issues were caused by a metabolic issue...she was diagnosed with hypoglycemia. After bringing these results to our pediatrician back home, they refused to accept them and continues to insist that a) she was ADHD and b) treated me like some parent that didn't want to deal with her child. The doctor also refused to listen to a recording of one of her rage issues.
Needless to say, we left them and switched her to MY doctor who has been a godsend in many ways. We also found a therapist who has helped tremendously for the last five years. This therapist diagnosed her with severe depression and anxiety, and began anger management therapy immediately. Thankfully her rage episodes became fewer, though transitioning into adolescence came with it's own set of challenges. She began failing most of her classes despite many meetings with teachers, guidance counselors, etc. not once was I asked if we wanted to begin the process to get an IEP, and any plans that were put in place by her teachers were rarely followed through on. By the time she reached high school, things were so out of control that we were losing hope. She had also begun self-harming and engaging in risky behaviors that we had no idea how to handle.
When she completed 9th grade, I decided to try again to have her tested for giftedness. She tested two points below the gifted level, and her reading and writing assessment indicated that she was at the level of a college sophomore. Yet because she was failing most of her academic classes for failure to complete homework, they refused to place her in AP or gifted classes. Soon after this, I decided to transfer her to cyber schooling at home. Meanwhile, her defiance and emotional outbursts, constant cursing, habitual lying, sneaking out, and volatile behaviors continued out of control. In addition, she began drinking.
Which brings us to this past December. After catching her "boyfriend" sneaking into her room at 3am (who turned out to be 29 years old), she hit rock bottom. Her friends began contacting me that they felt she'd spiraled out of control and that they were worried she would hurt herself. She became withdrawn from the entire family, refused to do school work, etc. Soon after this my daughter asked to see our family doctor for a referral to a psychiatrist.
After 15 minutes with me and 45 minutes with her, he diagnosed her with bipolar and PTSD. She is now on lamotrigine and we are in the process of adjusting her dosage. I have seen a difference, and she is less volatile in how she interacts with the family. However, her ups and downs are also much more distinguishable as well.
Here is my current issue: now that she is 16, HIPPA laws prevent us from being in the loop. She had stated that she does not want us involved in her sessions or to know what takes place during them. I was not consulted before she was prescribed a mood stabilizer, and the only thing I was privy to at the end of the appointment was the sign out sheet stating her medications. This has put me at a disadvantage, and I have a difficult time understanding how parents can be kept out of the loop where it comes to a minor. I had to hear her diagnosis from her, and she even tried to tell me that she did not have to take the medication as prescribed on the sheet. Even more concerning is that she is attempting to self-diagnose as having Borderline Personality Disorder as well...something her therapist has informed me seems possible yet disturbing since she actually seems proud of the fact.
Bottom line: we've had a long, difficult journey. Had she been diagnosed correctly from the very beginning, things may have turned out much differently and we could have potentially avoided years of turmoil. I'm angry, but at the same time I feel relieved that we may have finally found the right diagnosis and can finally begin the road to recovery. But I'm still wary considering I feel that as parents we have no say in her treatment.
Does anyone else have a similar story? Any advice on how to navigate the obstacles that HIPPA laws have placed in our way?
~K
A little background:
She began having violent rage episodes as a toddler, followed by issues with hyperactivity and lack of interest in school from kindergarten through 5th grade. In 4th grade met with her guidance counselor and school psychologist in the hope that they could help. Though I requested that she be tested for giftedness (as she exhibited a higher intellectual capacity than children her own age), I was instead advised to have her assessed for ADHD. Not knowing any better at the time and looking to them for their "expertise," I made an appointment with our pediatrician to have her assessed. Three surveys later (completed by her teacher, her coach, and us), the pediatrician diagnosed her with ADHD, prescribed Focalin, and sent us on our way...her rage episodes became ten times worse. She was then placed on an additional dose of the medication to counteract the "wear off" of her morning dose...again, rage episodes increased. Finally, after a great deal of pestering on my part, the pediatrician placed her on Strattera and referred her to a behavioral therapist who decided after one visit that my husband and I were the problem and that our disciplinary methods (no different than run of the mill parenting, mind you) were insufficient.
After a year and only a few more sessions (15 minute medication checks), we finally decided to get a second opinion from our old family doctor out of state. He spoke to her one on one for over an hour and point blank told us there was no way that a child with her level of intellect, ability to sit still discussing ancient Egypt and marine biology, and possible photographic memory could have ADHD. He advised us to wean her off the Strattera and ordered blood tests to see if her rage and school issues were caused by a metabolic issue...she was diagnosed with hypoglycemia. After bringing these results to our pediatrician back home, they refused to accept them and continues to insist that a) she was ADHD and b) treated me like some parent that didn't want to deal with her child. The doctor also refused to listen to a recording of one of her rage issues.
Needless to say, we left them and switched her to MY doctor who has been a godsend in many ways. We also found a therapist who has helped tremendously for the last five years. This therapist diagnosed her with severe depression and anxiety, and began anger management therapy immediately. Thankfully her rage episodes became fewer, though transitioning into adolescence came with it's own set of challenges. She began failing most of her classes despite many meetings with teachers, guidance counselors, etc. not once was I asked if we wanted to begin the process to get an IEP, and any plans that were put in place by her teachers were rarely followed through on. By the time she reached high school, things were so out of control that we were losing hope. She had also begun self-harming and engaging in risky behaviors that we had no idea how to handle.
When she completed 9th grade, I decided to try again to have her tested for giftedness. She tested two points below the gifted level, and her reading and writing assessment indicated that she was at the level of a college sophomore. Yet because she was failing most of her academic classes for failure to complete homework, they refused to place her in AP or gifted classes. Soon after this, I decided to transfer her to cyber schooling at home. Meanwhile, her defiance and emotional outbursts, constant cursing, habitual lying, sneaking out, and volatile behaviors continued out of control. In addition, she began drinking.
Which brings us to this past December. After catching her "boyfriend" sneaking into her room at 3am (who turned out to be 29 years old), she hit rock bottom. Her friends began contacting me that they felt she'd spiraled out of control and that they were worried she would hurt herself. She became withdrawn from the entire family, refused to do school work, etc. Soon after this my daughter asked to see our family doctor for a referral to a psychiatrist.
After 15 minutes with me and 45 minutes with her, he diagnosed her with bipolar and PTSD. She is now on lamotrigine and we are in the process of adjusting her dosage. I have seen a difference, and she is less volatile in how she interacts with the family. However, her ups and downs are also much more distinguishable as well.
Here is my current issue: now that she is 16, HIPPA laws prevent us from being in the loop. She had stated that she does not want us involved in her sessions or to know what takes place during them. I was not consulted before she was prescribed a mood stabilizer, and the only thing I was privy to at the end of the appointment was the sign out sheet stating her medications. This has put me at a disadvantage, and I have a difficult time understanding how parents can be kept out of the loop where it comes to a minor. I had to hear her diagnosis from her, and she even tried to tell me that she did not have to take the medication as prescribed on the sheet. Even more concerning is that she is attempting to self-diagnose as having Borderline Personality Disorder as well...something her therapist has informed me seems possible yet disturbing since she actually seems proud of the fact.
Bottom line: we've had a long, difficult journey. Had she been diagnosed correctly from the very beginning, things may have turned out much differently and we could have potentially avoided years of turmoil. I'm angry, but at the same time I feel relieved that we may have finally found the right diagnosis and can finally begin the road to recovery. But I'm still wary considering I feel that as parents we have no say in her treatment.
Does anyone else have a similar story? Any advice on how to navigate the obstacles that HIPPA laws have placed in our way?
~K