Newbie...frustrated, confused, and feel helpless

Discussion in 'General Parenting' started by kdmmertz, Jan 17, 2015.

  1. kattriss

    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?

  2. ForeverSpring

    ForeverSpring Well-Known Member

    I am not sure, but I believe that she'd have to sign her consent to allow you to have access to her treatment. But, really, you can't manage her therapy and nobody can force her to take medication either if she won't. I think that starts earlier, at fourteen (the medication). Sometimes it takes years or decades to figure out what is wrong with somebody. I'm a long term patient, from age 23 to now at 61. Diagnoses change with time too and with the doctor's interpretation. They very rarely stay the same. It is not an exact science. The only thing you can do is stop her from seeing this doctor but be careful. If your daughter has a connection with him, and is doing better, you are lucky she is willing to see anyone at all. If you pull her from this doctor, then you may end up on your own. By age eighteen, you can't know anything or have any control of anything anyway and she isn't that far from it.

    Many our kids refuse help. Your daughter is asking for it. I'd let her have it even if you don't agree with this doctor. My daughter went to a doctor in her teens and I never knew what they said, except what sh e shared with me. That's how it is. I think the doctor can get into trouble sharing with you without the signed permission of your daughter. In the end this is your daughter's life journey and as every parent of a troubled adult child knows, we can not control them in any way. They write their own stories, even if we don't like them. That includes their treatment, if indeed your daughter still wants treatment. Without it she could totally collapse and get worse. And it sounds like things are already pretty out of control.

    Good luck!
    Last edited: Jan 17, 2015
  3. 2much2recover

    2much2recover Well-Known Member

    Just a comment on this, you should have had the boyfriend arrested. A 29 year old man has no reason to be sneaking in your teens room at anytime much less 3 in the morning. If she won't help herself by not allowing these type of relationships, you still can by parental authority to involve the police.

    As far as this is concerned you need to look at your State Statutes to see what your parental rights are. Federal HIPPA Law gives you the right to know what is going on in your child's mental health treatments, however HIPPA does allow state laws to set their own laws on treatment vs. parental laws so you need to turn to your own state statutes (laws) and see what the law is where you live. Also, permission for her privacy may have been signed away on your part to get treatment for her. So after checking you state laws, refer back to the paperwork you signed (HIPPA forms) or ask to see them.
    So sorry that you have had such a difficult path with your daughter and I hope you are finally on the path for her getting better.
  4. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    I'm glad you found your way here. You will find many wise members, like the two above, who can offer advise and/or support.

    While my difficult child does not share any similarity with yours, I do see her desire for help as a positive. Perhaps as her therapy and medications move forward, she will be more willing to share and will give you permission to speak with the docs and be a "member of her team". Have you asked her point blank why she does not want you to speak with the doctor? I imagine she believes she is mature enough to handle it on her own....

    I second the info 2much gave, check with your local statutes to verify your/her privacy rights at 16.

    Again, welcome.

  5. kattriss

    kattriss Odds are forever in my favor...

    I should have mentioned that she lied to him about her age and also obtained a fake ID in order to support her lie. We had originally planned to contact the police, however she outright refused to cooperate and threatened to harm herself if we did so. We chose to focus on helping her move past this and not add fuel to an already raging fire. I will say that I out the fear of God into him and he ceased all contact with her.

    As for the other advice concerning HIPPA laws and parental rights, I will definitely check into all of this. Thank you so much for your's desperately needed.

  6. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Adding in my welcome! I'm glad you found our little corner of the world. We were fortunate that both of our kids allowed (easy child/difficult child is now 21 so she tells us but we don't communicate with the doctor) us to communicate with their doctors (although with our son we really didn't give him the option, although he is 17 1/2 he is cognitively where most 17 year olds are).

    I completely hear where you are coming from with the ADHD medications affecting the Bipolar! My son used to rage like crazy on them (he actually does have ADHD along with the Bipolar but there is no way he will ever be on stimulants again)!

    I can understand how frustrating it must be to not be in the loop! Lie the others, it is positive that she is seeking help but I really hope she uses the medications the way they are prescribed!
  7. kattriss

    kattriss Odds are forever in my favor...

    Where it comes to the medications, I made it clear from day one that WE would administer them to her each night and make her take them in front of us. At first it was a fight, but after a few days she relented and stopped arguing. She's always been an independent kid who wanted to do everything on her own, but I think she's coming to realize that this is something that she needs our help with. She wants to feel better, so that is something we are very thankful for. Hopefully with time she'll begin to allow us more access to her sessions, even if only for 15 minutes just so we can touch base with her doctors. I've been able to maintain weekly contact with her therapist via email so that I can update her on a regular basis, so I'm hoping I can do the same with her psychiatrist as well.
  8. ForeverSpring

    ForeverSpring Well-Known Member

    As a teen, and I had many problems as a teen and my parents did not want to help me at all (Kudos to you)...but I digress. If my parents had allowed me to get help, I would not have felt comfortable sharing if my words would have been shared with even nice parents. There were many things, including my feelings about them, that I would not have wanted them to know. Also there were deep secrets within me that I would not have told my therapist if I knew my parents had access to it. In other words, I would never have cooperated...probably would have lied to make it sound keep my parents guessing about my innermost thoughts that I just did not want to share with them.

    It is unlikely that your daughter will turn around because of you. Your daughter is still a minor, but she is nearly a legal adult and getting better is 100% on her. She either will want to change her behavior and continue to get help or she will not. Now if she were eleven years old I'd think your actions may greatly impact her healing...but not at her age. My one troubled, drug using daughter did not listen to us at sixteen no matter what we said/did. She went to counseling, and we did not demand to be a part of it although we certainly wished we knew what she'd she wasn't ready for help anyway and it was several more years before she herself got her act together. It was 100% her own idea to straighten out. It will always be their decision, not ours once they hit their middle/late teen years. And if she thinks she has a certain disorder, she can think so and you can't talk her out of it...she would have to determine that.

    I've been in therapy since age 23-now and will probably never be able to stop as it is the best stabilizer and check up for me. I have no idea if your daughter will be like me, but unless it is drug use only and they quit, it is unlikely to be a fix that will be resolved by the time she is eighteen. And by then, you can change your reactions to her...including even throwing her out of the hosue, if you wish....but you can not force her to do anything she does not want to do or is not going to do even if you do throw her out. There are many stories on Parent Emeritus about our grown kids.

    Your child is not yet grown, but she does have the right to have private therapy. And if she does not want to listen to you in spite of the consequences, she won't. Did you call the cops on the 29 year old man who was hiaving sex with your daughter? That is one thing I would have done no matter what. I don't know if anything would have happened to him for that, if your daughter denied sexual contact, however I would know he'd be gone after that!

    We were pretty strict and it still didn't stop our daughter from doing what she wanted to do when she wanted to do it until she decided she hated her life enough to change it.

    Hugs and I'm so sorry.
  9. kattriss

    kattriss Odds are forever in my favor...

    Thank you MidwestMom for your candid response. I do see where you're coming from, and I agree that she should have the opportunity to talk to her therapist and psychiatrist without us knowing the details of what was said. The main thing I am concerned about is having the knowledge I need where it comes to her diagnosis and any medications that are prescribed. I also worry that, given her history, she will lie to doctors to get what she wants (or what she thinks she wants). She has done this many times with her therapist which made it difficult for her to get a proper diagnosis of her condition. When I relayed her bipolar diagnosis to her therapist, she admitted that she would never have come to that diagnosis because in session she became very skilled at hiding things and redirecting conversations. My difficult child in turn would tell me things that were supposedly suggested by her therapist that I later would find out were not true. This has lessened though now that she has decided she wants help.

    Another concern I have is where it comes to obtaining an IEP for her. From what I've read, the process is very reliant on being able to prove that a child has a disability and if I'm not mistaken requires me to have at least basic knowledge of her diagnosis and treatment. Not having access to that information puts me (and her) at a disadvantage.

    To be honest, I'd rather not know what she says during her sessions because I know it would probably bring me to tears (not sure I have many more left). I also know that she would continue to lie and you said, she would be less likely to open up if she knew the therapists were relaying it back to us. What I would rather have is an opportunity to provide the psychiatrist a detailed account of the problems we've had throughout her life...fifteen minutes is definitely not an adequate amount of time to give him a detailed history, at least in my opinion. Her therapist and primary doctor are open to this. Her therapist appreciates my weekly updates where it comes to any problems, but I didn't get a sense that my input was welcome where it came to the psychiatrist.

    As for the 29yo, we chose not to call the police mainly because threatening him with doing so (as well as contacting his family, band mates, and venues/churches where they play that are hang outs for minors) was enough for him to cease all contact with her and her friends. And of course, she lied about her age very convincingly. We also did not want her exposed to publicity as his stepfather is a council member in the city they live...her mental/emotional state was our primary concern, and honestly it was a very hard decision to make.

    Again, thank you for your response. It's nice to hear all sides and know that I'm not alone in this.

  10. ForeverSpring

    ForeverSpring Well-Known Member

    Oh, hon, you're not.

    I never got to talk to my daughter's therapist either. Worse, they diagnosed her with bipolar while she was using drugs and put her on medication that made her feel so badly that she threw them out plus got ovarian cysts from it. She has quit drugs now for ten years and doesn't have bipolar (sigh). From years of dealing with psychiatrists, I have been diagnosed with (in the old days) manic-depression, anxiety (this is correct and a consistent diagnosis), unipolr depression, bipolar II, Obsessive Compulsive Disorder (OCD) (this is untrue), and many other issues that I know I don't have. The problem is, psychiatry isn't an exact science. BUT...I know what you mean about needing a diagnosis for her IEP. I'd demand that your daughter let you see that in writing so that you can present that to the school.

    I actually liked a neuropsychologist better. We were involved in the diagnostic process every step of the way (we actually had to be for it to work) and we had to fill out tons of questionnaires and so did the school. If your daughter has, say, Aspergers Syndrome, a psychiatrist would miss it because it is a neurological difference, not a psychiatric disorder. And neuropsychs can spot both and do intensive testing. My son had ten hours of testing. He IS on the spectrum and got a great deal of help after his diagnosis. He did not have behavior problems, but he sure struggled with school until we knew how to help him.

    I sure didn't mean to scare you. These teens can be so challenging and, yes, we can shed a river of tears, can't we? I hope you can make some headway. Maybe tell her no car if you can't know the diagnosis? That was the ONLY thing that worked a little bit on my daughter until we had to take the car away from (If you don't laugh, you'll never stop screaming, right?)

    I do wish you the best. Keep posting. If it turns out to be substance abuse, you can post there as well.
  11. 2much2recover

    2much2recover Well-Known Member

    Mostly psychiatrist today concern themselves with what I call " medication Therapy" and if they are working with her therapist, it may be good for you to go ahead and tell the therapist the types of problems and behaviors you have dealt with. This could act in a helpful way to getting a more accurate diagnosis. If you already have a good relationship with the therapist by all means speak to them. If you are worried about doing this in front of your daughter, write it down and mail it to the therapist.
  12. kattriss

    kattriss Odds are forever in my favor...

    No worries didn't scare me at all. I'm one of those people who likes to hear all sides of an issue in order to gain perspective. And yes, laughter is mandatory in maintaining my sanity!

    As for doctors, after all we've been through with diagnosis and misdiagnosis I've become a bit wary of doctors who immediately begin pushing pills. I really like the suggestion about seeing a neuropsychologist...something I had yet to consider.

    And yes, I have a good relationship with her therapist. She's become very much a part of our family the last five years and has always been very open to working with our whole family. I'm trying to work on having the psychiatrist maintain contact with her as she's very open to it.