"your child is very sick"

Discussion in 'General Parenting' started by isis, Dec 4, 2012.

  1. isis

    isis New Member

    Anyone see the new DSMV diagnosis?: "disruptive mood dysregulation disorder"
    What do you think?
    I suppose if it provides a diagnosis for which insurance will pay services...but it seems,uh, a little vague! kinda broad! Maybe that's good.

    My son's psychiatrist told us awhile ago that this new DSM V diagnosis was coming out, and that it was formulated for kids like him. And that there is a lot of interest and research in the field right now around these 'very irritable kids'.

    Yesterday, my husband and I met with her to talk about our desperation and ask (desperately) for ANY options: alternative (light therapy? meditation?), intensive therapy in house, in hospital, therapeutic boarding schools etc etc.

    She admitted that 'your son is very sick' (I really like her and really like that someone in the system acknowledges our pain - after several people earlier on who told us to just read this or that book).
    But also, that he is 'unique' and that is why there are not more services for kids like him.
    She said that it has gotten to the point that you cannot admit kids to for aggressive therapy unless they are actively and demonstrably at risk for harming themselves or others.
    (So now I'm confused, unique but there is a whole new DSMV for kids like him, so....).

    Why is the 'system' lagging so far behind? Where is the support? My son is smart and has so much to offer if he could become emotionally stable!; he is suffering and the whole family is suffering and less functional than it could be (it would be good all around if we could be more productive - we could give back more!). I'm not convinced he's so unique. It's just a big fat blind spot in health care. :sigh:
  2. InsaneCdn

    InsaneCdn Well-Known Member

    It's one of many big bad blind spots in health care.
    I'd guess most of us on this board can relate.

    Trinity is trying to get adult Autism Spectrum Disorders (ASD) services... big black hole.
    We've been fighting for years and told our difficult child is "unique", but like you, we don't believe he is really that unique at all... it's just that nobody has gotten all of "them" together to make the point. We haven't found each other yet.
    I remember DF trying to get services for her difficult child - over and over and over.
    Step... ditto.

    We hear you. You're preaching to the choir.

    The trouble?
    It takes MONEY.
    Well invested, in my opinion - we can turn many or most of these kids into productive citizens.
    But... it isn't in anybody's budget.
  3. Bunny

    Bunny Guest

    My son's therapist has told me this in the past. He has not used that exact word, but he's been telling me this for years. It's so hard to definitively diagnose his with any one thing because he seems to fit into so many boxes that the therapist isn't quite sure what to do with him sometimes.

    Simply telling you that you child is very sick is not helpful, unless they give you some very specific direction as to where you are supposed to go from here. Saying he's unique does not help you help him.

    I agree with you that alot of times these kids fall through the cracks. If they do not demonstrate a risk of harming themselves or others we are very often left to our own devices. A friend of mine who is the parent of a difficult child found some very disturbing things in her son's room yesterday and she called several in patient facilities, but they said they can't help her unless he verbalizes a specific threat. Her question was what happens if he never verbalizes anything, but then does something harmful to someone? Why will no one help her prevent something like that from happening? They wished her well and told her to call her psychiatrist and say it was an emergency. She did that. Twice. He never called her back.
  4. DaisyFace

    DaisyFace Love me...Love me not

    Insane is exactly right. It's all about money.

    With the current budget shortfalls - the system can only handle two types of clients: the easy fix and the 'that-guy-is-so-crazy-he-is-biting-his-own-face' lunatic. If you or your child is somewhere in between, there just is no long-term, intensive support structure that can handle that right now.

    So unless your child has a scary, violent episode...there is not much they will do.
  5. isis

    isis New Member

    "We hear you. You're preaching to the choir."

    It's such a relief to find a choir that is singing the same lonelysong I have been singing inside my head for all of these years.
  6. buddy

    buddy New Member

    I am sorry. It's so hard. Even great psychiatrists often can't think outside the box. There are alt therapies that can help. My son does neurofeedback and his brain wave flexibility has visibly changed which matches what we're seeing....he still has days and incidents but he can stop better usually, he can move on quicker, etc. We also do AVE and he falls asleep to that. He has auditory and lang processing disorder and a personal fm system helps. We do horse back riding therapy and have a service dog to help calm. We have weighted blankets and smelly lotion and other calming tools. Inc. In home Integrated Listening Systems (ILS) services (now, that usually needs county funding because its expensive ) These little things add up and while I can complain about issues when compared to even six months ago we've come a long way.

    If you have a nami chapter, maybe they can teach you about county supports in your area? Or just call the county pediatrician. Mental health dept.

    If you're interested it might be fun to start a thread where we can list types of therapies we have tried just to learn whats out there. Doesn't mean any would work, just ideas to research.
  7. isis

    isis New Member

    Wow! So much info in one response, thank you! I had never heard of neurofeedback nor NAMI.
    I think it would be REALLY interesting to have a thread in which people can list therapies that have tried, for what, and whether or not they've been successful.

    PS I remain interested in people's thoughts on this new DSM diagnosis...("disruptive mood dysregulation disorder").
  8. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Well, I had to look that up and that is what my 26 year old son has now been dxd with. A couple of years ago a psychiatrist did another full psychiatric work up on him and reclassified him as not having early onset bipolar but having what then was known as Temper Dysregulation Disorder. It appears they have just changed the name a bit.
  9. isis

    isis New Member

    She (psychiatrist) told me that the psychiatrist community thinks they (themselves) are overdiagnosing bipolar in kids, not that many could have it, and this diagnosis is the alternative.
  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I like it. in my opinion "mood dysregulation" is more accurate regarding our children who can't control their emotions...moreso than, say, bipolar. There is no way to know for sure if a child diagnosed as bipolar will really get those bipolar highs and lows, but it is a fact that many of our kids have uncontrollable mood dysregulation that interfears with their lives.
  11. TerryJ2

    TerryJ2 Well-Known Member

    Isis, ditto and ditto. I agree, that this is actually a good alternative to bipolar when you're dealing with-little kids. Even though it is almost hopelessly vague. It's a working diagnosis so that parents can get svcs and scrips.
    I hear you.
    And this isn't the last we've heard from the Powers That Be who write the DSM. Give it another few yrs and they'll change the names again.

    It isn't totally about the money, per se. It's about how insurance companies create their own little pkgs, and what the pharmaceutical companies want to hawk. The other component is the education system, and that needs a two pronged approach--one with-lobbying the state legislature and municipalities and making sure our kids have svcs available, period, and second, that MDs can write up dxes and ltrs to send to the school admin to make them provide the svcs.
    Around and around we go.
    In regard to your son being "very sick," I guess that just means she's empathetic and saying that she sees something. Which is better than nothing.
  12. JJJ

    JJJ Active Member

    Our district had huge trouble wrapping their mind around my Tigger. Eight years later, they have an entire program for "unique" kids like him. ENTIRE PROGRAM ... as in an entire floor of one of the local schools (to the sweet cost of a $2 million renovation) including four active classrooms, calming rooms, crisis rooms, therapy rooms and a couple empty rooms that will be used as more "unique" children are placed there via IEP for social and emotional needs. Our district also has an entire seperate building for children with behavior disorders.

    These "unique" children are overwhelming our schools and our mental health system. We need funding for treatment and for research to determine why there are increasing numbers of children like this. (Is our environment poisoning our kids? Are we witnessing the beginning of an evolutionary change in the human race?)
  13. isis

    isis New Member

  14. TerryJ2

    TerryJ2 Well-Known Member

    Yes. I'd love to see more studies on that. It is getting scarily more prevalent.
  15. InsaneCdn

    InsaneCdn Well-Known Member

    The research won't happen.
    Nobody is prepared to pay for people to ask politically incorrect questions.
    And - in my opinion - that's where a big part of the problems are.

    I'm not convinced that Autism Spectrum Disorders (ASD) is any more prevalent today than it was 100 years ago... it's just that Autism Spectrum Disorders (ASD) people had more options 100 years ago, ways of doing things that worked (you didn't have to stay in school, you could learn good skills from your parents and earn a living from that, for example). They are less of a fit in today's society, and get less of the resources they need on every front.
  16. isis

    isis New Member

    I agree about the prevalence, is it increasing or not?? and definitely agree that perhaps a huge part of the problem is our current high speed overstimulating society and these kids being unable to accomodate to the wacko necessities of life these days (in my vision, mine would have been an excellent upstate new york farmer 100 years ago - he would have excelled rather than lagged).
    However there is no question in anyone's mind that there are poorly described environmental factors that are impacting other aspects of health with demonstrable increased prevelance of serious conditions in rich industrialized parts of the world - makes sense intuitively that neurodevelopment could be being affected as well. There is research money going into treatments for all sorts of medical conditions, and lots of it. It is quite possible that there would be a bigger bang for the buck to tease out preventable causes of debilitating childhood conditions then find new expensive medicines for cancer in older folks (but I'm not against cancer research! don't ding me for that!) in terms of 'quality life years impacted/saved' a real measure in medical research.
    Still preaching to the choir, I know.
  17. InsaneCdn

    InsaneCdn Well-Known Member

    That's my general take on things, too...
    Slower pace, more hands-on learning, more in tune with natural cycles (sleep in the dark, for one)...
    Not that mine would have been a farmer... but the hands-on learning etc. all fit.
  18. IT1967

    IT1967 Member

    I think that new DSM diagnosis describes my daughter to a T. And my son to a lesser extent. But I don't know that it'll change anything for us in any way.