New Diagnosis - Dissociative identity disorder - I am in shock

Discussion in 'General Parenting' started by BeachPeace, Apr 17, 2012.

  1. BeachPeace

    BeachPeace Guest

    After a long diagnostic process that has spanned almost 2 years and many specialists - my son Blue has a new diangosis of Dissociative identity disorder
    I am overwhelmed, in shock, too heartsick to talk about this to anyone.
    I knew my son was sick, I knew he was mentally ill, I knew we were in a "possibly schizophrenia" holding pattern - but I was not prepared for this.
    For some reason it seems so much worse than I had even imagined.

    Has anyone had any experience with a child with DID?

    i need to update my sig line - Blue is now 9
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Before you get too upset, who diagnosed him (what sort of professional) and on what are they basing their diagnosis? What do THEY mean by DID? Does he feel disacotiated (like depersonalization, derealization) or do they believe his personality has actually split.

    Do not panic right now. First of all, there is help. Second of all, I would not buy into this until I got two, maybe three, professionals who were top-of-the-line (Psychiatrists/Neuropsychs) before I would necessarily think it's true. Have you seen this in him? Does he lose time and not remember what he did?

    Color me skepical unless more HIGH professionals really sign on board. I'd find a psychiatrist who actually has treated many patients who have DID. Has your professional had a lot of DID patients? If not...see one who has.

    Please, please, please be good to yourself and try to calm down. Most of our kids have gotten ten different diagnosis....honestly, it is very hard to figure our kids out correctly.

    Do you agree with this professional? If so, why? Or why not? Hey...big hugs to you and try not to panic...try to think about it and even question it. Most importantly, HOW MUCH EXPERIENCE DOES THIS DIAGNOSTICIAN HAVE WITH PATIENTS WHO ARE DID?????
  3. buddy

    buddy New Member

    I'm so sorry for you and your little one. I know nothing but the little bit I've seen on TV (isn't dr phil doing or just did a show with a woman who has this? )
    Does it feel like the right thing to you? Was there talk of treatment?
    I know it is all overwhelming right now so no need to talk abt. it or to answer questions. Blue is very young and I would think that alone offers much hope for a functional life and finding supportive therapy. I pray that for your family.
  4. AnnieO

    AnnieO Shooting from the Hip


    I know this is crazy scary, but let me give you a huge hug. Onyxx was diagnosis'd as DID as well. But it didn't sound right to US - the people who LIVE with her - and then we found some other weird stuff out. After more testing, etc. it was decided it was bipolar and PTSD.

    Now your Blue might or might not. What I would suggest is researching it a bit & seeing if it sounds right.

  5. DDD

    DDD Well-Known Member

    Here's a big caring hug. A number of us have received "scarey" diagnosis and felt that horrible feeling of panic and temporary hopelessness. The diagnosis. may or may not be correct. There are different degrees of dysfunction with each individual. There are also a variety of methods being developed every year to help those with disabilities....a number of us have seen really remarkable improvements.

    It may take alot of sweat and a flood of tears but keep the faith tht you will "sea" possibilities in the future that are not apparent today. Hugs. DDD
  6. buddy

    buddy New Member

    Even when Q was 4 and got his autism diagnosis (the medical one, not the school label) ...I got a second opinion. I even worked at the place that did the original diagnosis. I just had to know for sure. I think there is nothing wrong with going to experts and making sure... and what looks like one thing now, at such a young age could really present differently at a later age.

    The important thing of course is to get the help and support for the issues that are happening. I am sure you are all over that since you have been at this so long.... One of the saddest days ever for me was to see the words on paper, in black and white. But you know what??? He was the same kid I had lived with, the same kid who hugged me, the same kid who had good moments and rotten moments, and we just pushed on. It is the same kind of grieving process (as I am sure you know) as a death, hard to believe, anger, why??? please God no...etc. Eventually we really do have to accept them as they are. The diagnosis we get can help guide therapy adn get insurance to pay for things. But they are people first, not their label. super soft hugs for you, we have all been there.
  7. BeachPeace

    BeachPeace Guest

    The diagnosis does seem to fit sadly. This was from a pedi psychiatric MD and a developmental-behavorial pediatrician MD at a large teaching hospital. Blue's Neurologist referred us there because he was concerned that Blue had schizophrenia. neuropsychologist consult a couple of years ago was PTSD with dissociation - but I did not really grasp what that meant at the time.
    I am feeling a little bit calmer and trying to get through this sadness so I can get into the "warrior mom" mode and find experts in DID.
    It is like unlocking a puzzle and this is only one piece, right?
    Thanks for the encouragement
  8. BeachPeace

    BeachPeace Guest

    I just wanted to add that everytime a new diagnosis is added I get angry
    (again) at his bio mom.
    The md that gave us this new diagnosis of DID was so very kind to me and said that it was actually a highly evolved way of surviving the horrific abuse Blue has suffered. She was encouraging and gave me some cards and a referral to a therapist that specialized in adoptive kids.
    I now don't think the Reactive Attachment Disorder (RAD) diagnosis is accurate as that was given by his pedi MD yearsago just because he was having psychosis and raging and he happened to be adopted. He does have a few attachment issues but that is not where the dysregulation stems from.
    My poor baby.
  9. buddy

    buddy New Member

    Glad it is starting to process already. Sounds like you are with some good people and the truth is as you have already experienced, the other diagnosis. is not fitting now, this one does, and in a few years someone may say something else, but if this seems to fit then the important thing is to do just what you are doing, find the people who can help.

    My heart breaks for your son that he went through anything so severe that it would cause him to need to survive like that. I could relate totally to what you said about the birth parents. I generally am pretty forgiving toward my son's birth parents but when he really struggles I think, if you guys had done your job, he would have been to a doctor right away, he would have been diagnosis'd sooner with his brain mass and it is likely that far less damage would have been done. Their addictive behavior caused him to suffer far beyond not having food all the time or even the car accident they were in.

    I will be interested to hear how you feel the therapy goes and what they say in terms of prognosis etc. Any time we get a diagnosis at least one good thing is it steers us toward new help. There was a woman in a support group I belonged to many years ago who said she had that diagnosis. and she was attending a lot of therapy but she had a job and family and did not seem depressed or dysfunctional overall, though I am sure it is not easy-I wont pretend to know her from that brief time. I never asked her anything or pried into her life, but I remember it because it is such a unique diagnosis and we did talk about every day things that we were there to support each other through. I only mention it to show a person with that diagnosis who seemingly (again I admit I didn't know her well) had many positive things going on in her life. Your son is so young and has your support, he may have an even better chance of improvement than many people. I will pray for you in your journey. When our kids have very unique needs it is a whole added layer to the warrior experience, hard to find other warriors who can relate. Thank heaven for this board.
  10. SearchingForRainbows

    SearchingForRainbows Active Member

    I think you're handling this very well. Whether or not you believe this, you're already in warrior mode, beginning to look for professionals who can help your child. You're a step ahead of where you were prior to getting the diagnosis. You're now able to find the best possible treatment because you know what it is you're dealing with.

    Your child is going to get the help he needs because of you, your determination, your strength, your courage, your love... Be gentle with yourself. It takes time to process what you've just learned. Try to remember that your child is the same child the day before the diagnosis was made as he is now. Allow yourself to feel angry, sad, scared, etc... Lean on close friends, family for support. Lean on us. We understand...

    Thinking of you as you begin this journey... Many hugs... SFR
  11. TerryJ2

    TerryJ2 Well-Known Member

    Many, many hugs.

    Blue is in good hands with you and with-the pros you have gone to, and are seeking out.

    I agree with-the others ... give it time, and be open to a new diagnosis in a few yrs. You never know.

    Either way, I completely understand how you feel about the bio mom. :(