I need help (long) need a new direction to look - this is a puzzle

Discussion in 'General Parenting' started by Tiapet, Mar 15, 2008.

  1. Tiapet

    Tiapet Old Hand

    I'll start with the history to help. Since 2002 my middle one has been in treatment. Initial diagnosis was simply ADHD inattentive with ODD and just didn't do well with school. She was born with some physical stuff that was addressed early in life that didn't really disrupt her life too much but might have attributed to some of her attention seeking behaviors/entitlement feelings. The family history of domestic abuse didn't apply to her as she was the favored and was lucky to only witness it (but denies it occurred to any of us- this is what has come out in treatment - idolizes ex for the most part still).

    We have questioned bipolar minimally as the time has progressed and symptoms have progressed. 3 years ago she started stealing food and hiding it. Now it's so bad we are in lock down (started only having to do it at night now have to lock up in day). She lies constantly, almost every word out of her mouth. Academically she still is terrible and refuses to do most of her homework and at school she can become very passively ODD about not doing it and nothing will get her to do it (as reported by teachers). Her stealing was confined mostly to her sisters stuff (who she previously shared a room with until a year and a half ago) but she will steal from any other family member. She is extremely sneaky smart. All of us are amazed at it. Now it seems she's also progressed to things at school, at times coming home lying saying someone "gave it to her" including a teacher (or that she won/earned it- to which I have to check with teacher).

    She is unusually vocal from morning until bed. Something is always coming out of her mouth (sounds or words - usually high pitched) and if not she has something IN her mouth chewing or otherwise (she is also a thumb sucker). Until recently (and at times it is still a bit of a battle ) her hygiene was horrendous. We have to keep her in check as she will not properly wash herself. She used to be able to hold her own with peers but in the last year and a half she no longer really can. They've had enough. She does not act her age at all and has very annoying and bossy behavior, always has been very bossy (and that has been a problem all along). She seems to identify with much much younger children but the parents of those children don't want her around because they are disconcerted by some of her behaviors at times.

    We can not identify if she "gets it" or if she does, does she even care about anything cognitively. It's like you can give her a consequence (or when younger a spanking, unfortunately) and she'd turn around and do exactly the same thing. This would happen over and over again immediately (they say you have to do something a thousand times before a child "gets it", she never did). She is not "mean" or hurtful to animals per say but she "makes them" do what she wants such as hold them down to stay with her. In the past, 4 years ago, she actually took a hodge podge of items (like toothpaste, lotion, powder, etc) and applied it all over a cat who is known to run away from people. How she got the cat to stay still AND apply it all we have no idea! We no longer have any animals because of this.

    She has a fascination for tying things up. If there is a bit of string or yarn around she is tying it to things or tying things up.(like barbie or other dolls or even her bother!) I could go on about this really scary behaviors but I won't because it's best I don't (no fascination with fires or starting them).

    She is hyper focused on sexual things such as anatomy parts. She will notice someone's low cut shirt, etc. There was a commercial on TV for a feminine product where a lady twirls in a skirt and she says "you can see her underwear" ( you could not). That is just an example on things she will focus on.

    She was fully evaluated in 1st grade and had an IQ that wasn't great but not too terrible. Jump ahead to now and she was re-evaluated again by psychiatrist and that's how we do have a mood disorder (although they won't positively say bipolar quite yet), ADHD still, ODD. Her IQ is still on par with some areas week but nothing like we really thought we'd see given her performance in school and the inability to do certain mathematical problems (simple stuff really). Cognitively I really feel there is a problem here but yet nothing is showing up in the tests!

    So this is what I am wondering, is there some other testing I'm missing? I've been around here a long time and yes, I'm worn down and been through a lot so maybe I've forgotten or missing something. This is why I need help desperately. There is something seriously, scary wrong with my child. Enough that the treatment team has hit road blocks each and every time and tell me "we don't know what's wrong". We moved over a year and a half ago (that's another thing, she got worse and the whole family got better as a unit because move was done to get away from environment of "past") and are now down with DUKE and even THEY are hitting the brick wall and batting their heads!

    We have tossed around the notion of the possibility of attachment disorder based on medical history (they say it's a possibility but who knows). All I know is that this one poor child has set the household on end terribly. I want to help her, we all do, but no one knows what or how to at this point. We know that if she is out of house (say to her grandmothers) the whole house is at peace and calm. That is a very sad fact. We can't and aren't putting her in residential as she isn't quite material for there (it was thought about). I mean she is but in reality she "can" function and putting her there is just a warehouse for her and she'd only pick up those things that aren't already wrong with her.

    If you have lasted this long with me, thanks. I'm hoping having all your heads out there help me find, perhaps, the missing piece to this puzzle that I (and the treatment teams over the last few years) can't seem to find. Oh and yes, she is on some medications, some others we've tried without success too.
  2. daralex

    daralex Clinging onto my sanity

    First of all so sorry you are dealing with all this - I can't imagine how frustrated you are! This is not my area of expertise, but has anyone considered conduct disorder? Are you able to get difficult child nueropsych testing? It does seem more is going on than has been diagnosed. Hopefully others will be of more help - I hope you find the answers you need quickly
  3. DDD

    DDD Well-Known Member

    Nice to see you again....sorry you need to come back. I can only imagine how frustrating it must be to have access to a fine group like those at Duke and still not have a clue. Sending hugs to you.

    Obviously I have no experience that would qualify me to provide an
    answer for your problems. on the other hand, based on many years as part of the CD family, it sounds to me as though you are grouping "residential" into one basket in fear of your daughter learning new negative behaviors etc. There are so many tiers of "residential" that I would suggest that you consider a placement like Fran had for her son some years ago. I can't remember the accurate term (I'm getting old..lol) but I think it is an Emotional Growth program. It is very expensive and often is compared to funding a college education at a quality university. It is my understanding that the staff is highly qualified and the programs are designed to lead to independent successful living.

    Although I have not dealt with frightening mental health issues I know from decades of experience that before you know it your "child" will be facing adulthood. Since there is no assurance that you and your husband will be able to provide her with all the help needed for her lifetime, in my humble opinion
    finding an alternate setting where she might be redirected makes alot of sense.

    Once again, I'm sorry you all are in such a maze. DDD
  4. smallworld

    smallworld Moderator

    When you get chance, can you add dxes and medications (if any) to your signature. It helps to know what is going on with each child. What medications is this child on now? How is she responding? What medications have been tried before and what exactly was the response?

    Conduct disorder is not a diagnosis given until age 18. So that is not what you're looking at.

    I agree with the need for a full neuropsychological evaluation. An IQ test is not enough to figure out exactly what's going on. She has red flags for both a mood disorder and an Autistic Spectrum Disorder so you really do need to sort it all out. Neuropsychologists can be found at university or children's hospitals.

    Sorry you're struggling so. I hope you make some headway soon.
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I third the neuropsychologist evaluation. She has some symptoms of Autism Spectrum Disorders (ASD)--she could be on the spectrum, high functioning, especially with the high pitched noises, thumb sucking and fascinating with tying. If it's that or anything else in my opinion NeuroPsychs are the best at catching the problem. Unfortunately, if you can't "catch it" you can't treat it. It took us until son was 11 for him to finally be diagonsed right. The neuropsychologist tested him for twelve hours before coming up with anything. He was the most thorough and must RIGHT by a longshot. Good luck :)
  6. SRL

    SRL Active Member

    I was also thinking you ought to look into Autistic Spectrum Disorders. Here's a link to a site on Asperger's Syndrome, the highest funtioning of the Autism Spectrum Disorders (ASD)'s.

    Since she's in her teens you might take a look at Wrong Planet as well:

    What was her speech like when she was young--any delays or adult sounding speech?

    When she was young (or even now) did she line up toys or household objects in straight lines or formations?
  7. flutterbee

    flutterbee Guest

    You stated that the family history of domestic violence does not apply to her as she was the favored one and only witnessed it.

    The history does still apply to her. I only witnessed it, too. I cried every time my brother got into trouble because I was afraid for him. I lived in fear. I had no control. I was on edge...a raised voice, a look, a tone, even my father sneezing would make me jump. I still have trouble with men being loud. It still makes me jump. I, too, was the favored child. I wasn't beat. I idolized my father for many years. My brother was jealous of me because he saw it that I could do no wrong. I felt guilty because I could do no wrong. I felt guilty if my brother did something to me (as siblings will do) and he got in trouble. It was always worse when he got in trouble. I felt helpless.

    Interestingly enough, my brother is the one with the relationship with our father now. I cut my father off for a number of years. He recently came back, but I keep him at a distance. And my brother won't speak to me because of it.

    This might be way out there, but since you're looking for a new direction it's worth a look:

  8. smallworld

    smallworld Moderator

    Tiapet said she was writing about her middle child. I assumed it was the 10-year-old difficult child . . .
  9. susiestar

    susiestar Roll With It

    Has she had any testing for learning disabilities? IQ testing will not show things like dylexia, dysgraphia, dyscalculia, and nonverbal learning disorder (NonVerbal Learning Disorder (NVLD)). this might be a place to start looking.

    A neuropsychologist testing will also help. Maybe you will find a new direction to go to help her.

    Sorry it is so bad.

  10. SaraT

    SaraT New Member

    I too recommend a full neuropsychologist evaluation. My difficult child was also diagnosis'd by pediatrician with ADHD/ODD at age 6. Now, at 12, a full evaluation has changed it to ADHD, Mood Disorder not otherwise specified, and Aspergers. Mood stabilizers and stearing her into an interest that is constructive has made a bit of difference. She still has her meltdowns, but not as bad or as often. Several things you mentioned gave me the RED flags for both autism spectrum disorder and mood disorder. I am not saying your difficult child has these, but in my humble opinion it would be worth checking out and possibly ruling in or out.

    A correct diagnosis makes all the difference in getting the right treatment for our difficult children.

    Sorry you are having such a rough time. I hope you can find the answers.
  11. DDD

    DDD Well-Known Member

    I'm assuming that Duke did a neuro/psychiatric. If not, absolutely get one scheduled. Hugs. DDD
  12. Tiapet

    Tiapet Old Hand

    She has never had a "neuro" pschy, just a full pschy evaluation done with IQ testing and the likes (yes the learning disability testing too). I thought she had dyslexia myself (I am still not convinced completely she doesn't but twice now she's been tested and it's come back negative). She has been on, I believe all ADHD medications, abilify (paradoxed), Resperidol (paradoxed), and several other I can't recall off top of my head without digging out records to see them all. We haven't tried depakote, tegretol, lithium or the likes as of yet. I would only consider topomax as she has a tendency to gain weight like crazy with her eating habits (perhaps it's a disorder because you have to watch her or she will eat non stop besides the stealing). The problem with the Topomax is the "stupiditis" (cognitive dulling) that comes with it. She can't afford to loose any more functioning then what she has now unfortunately. She doesn't sleep well unless she takes clonidine which is what we've been using now to maintain (along with concerta for the ADHD but it's not enough). We need a good mood stabilizer but not sure where to go or with what at this point (will be revisiting that issue in the next month). Her waking up at night is pretty much related to eating. She will wake to eat. The funniest thing is, she could fall asleep on the middle of the living room floor watching tv, be asleep soundly, snoring and someone will mention food and she bolts upright, wide awake! It's uncanny!

    As for the abuse, she does not feel bad when someone else gets in trouble. In fact she goes out of her way to get her younger sibling IN trouble. Even if he is not in trouble she will make trouble one way or another for him to get in trouble. It's become such a tough issue because he will have to lock himself in room or come sit with me and she will antagonize him to no end. He tries and can hold his own for a while not to be drawn in to her whirlwind knowing she just wants trouble but he is young and can only take so much. We as adults can only take so much before we actually get drawn into her drama as well so I do understand how hard it is for him.

    OK now another unfortunate twist to this all (re residential issue), yet another reason we can't place her in residential is my ex! If we did so it would be blocked and she would have to go live with him (which would be a complete disaster for reasons I can not get into on board). He has partial rights so my hands are partially tied on some things. It's very very frustrating at times. And no, he doesn't really care about the good of her, trust me!

    I had wondered about a neuro psychiatric evaluation but, forgive me because I've been through a lot and brain does not function nearly like it used to, I could not remember if that was the virtual same as the evaluation we've already put her through. How is it different as far as the battery of testing? We've had her eyes and ears checked as well. She was behind on walking because of physical and slightly behind on talking because her energy was focused on physical but nothing that she needed intervention for as she has been followed all along through the years. All this stuff has slowly been coming out, but always there slightly, over the years. It has just been coming more fast and furious as she is reaching puberty.
  13. smallworld

    smallworld Moderator

    What were the credentials of the person who tested your difficult child?

    If you could list the tests administered to your difficult child, we might be able to tell you how thorough the evaluation she had was.

    One benefit of using a neuropsychologist comes with how the tests are interpreted and connected to various disorders.
  14. Sara PA

    Sara PA New Member

    Lamictal is approved for the treatment of bipolar disorder, a true mood stabilizer, and is weight neutral. It is also the least likely to cause cognitive dulling.

    The antipsychotics like Risperdal (and often mistakenly called mood stabilizers) are the most likely psychotropics to cause large amounts of weight gain.

    The anticonvulsants used as mood stabilizers are probably less likely to cause weight gain than many of the antidepressants.

    The stims, while causing the loss of appetite while in the body, often cause rebound voracious eating once they leave the body.