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Looking for some much needed support

Discussion in 'disABILITIES Community Board' started by disneydreamin247, Feb 7, 2012.

  1. disneydreamin247

    disneydreamin247 DIS Veteran

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    My DS will be 8 this year. At 2 he was diagnosed PDD-NOS. That was then changed to Asperger's. This year it was changed to ADHD/ODD. The medication is not helping. The doctor says there is no treatment for ODD. I am at my wits end because my DS is so out of control and I can't help him. He is barely 8 and I can't handle him. What will I do as he gets bigger and stronger? Homework is a daily battle. He gets violent, screams and curses, throws things, rips down curtains. I fear for his future. I'm afraid he will have to be institutionalized for his safety as well as others'. Does anyone have any advice for me? I feel so hopeless.
     
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  3. Maggie'sMom

    Maggie'sMom DIS Veteran

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    Is the doctor you are working with a specialist in child psychology or a child psychiatrist? My first recommendation would be to seek out at least a second opinion. While ODD isn't something that can be resolved with medication alone, that doesn't mean it can't be treated. Treating it involves very regimented behavioral modification.

    Is he being treated with ADHD medications? If so, has his behavior worsened with the introduction of the medication? There are certain disorders that ADHD stimulants can worsen, and there are many kids who are misdiagnosed with ADHD. It can be difficult to get a correct diagnosis, as you have found.
     
  4. disneydreamin247

    disneydreamin247 DIS Veteran

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    No, she's a developmental pediatrician. He's being treated with a non-stimulant ADHD med (generic Intuniv). He takes .5 mg 3x a day. The insurance company won't cover the brand name, and the generic isn't as effective. I feel like I'm fighting a losing battle and I can't get a break anywhere. Thanks for letting me vent.
     
  5. Maggie'sMom

    Maggie'sMom DIS Veteran

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    Vent anytime. You need all the support you can get, even if it is just from strangers on the internet. :)

    Some background on myself. My DD was diagnosed at age 5 with bipolar disorder. She also has co-occurring ADHD which we haven't had any luck treating because the ADHD meds completely screw up her mood disorder. We considered a co-occurring ODD diagnosis, but when her mood is stable, those issues disappear so her problems are pretty specific to the mood disorder.

    Intuniv was one of the ADHD meds we attempted and had disasterous results with it. After 10 days on it, she was in a state of almost constant rage. I have scars on my arms from where she dug chunks of my skin out with her bare hands. I discontinued the Intuniv and saw immediate improvement. Our experience with Intuniv was very atypical. But I bring it up to let you know that every child reacts to medication differently, and don't hesitate to question the doctor on the meds if you don't believe a med is helping or if it might be making things worse. Have you noticed any improvement since starting the Intuniv?

    I'd recommend you get your son in to see a child psychologist. They could have a different viewpoint than the developmental pediatrician. And in tough cases such as what you are dealing with, that might be helpful.
     
  6. disneydreamin247

    disneydreamin247 DIS Veteran

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    I think my son could have bi-polar as well. His "father" has it, and I can just see it in my son. He can be in a complete fit of rage, throwing things, and hitting me and then I tickle him and he starts to laugh and change his mood. My sister (she passed 2 1/2 years ago) had rapid cycling bi-polar and that's how it seems sometimes. He will fly off the handle over the silliest things. This morning I was up early and made our ADRs. I called him to get ready for school and it set out morning right off on a negative note. He was in a mood from the get go. I feel like a bad mom because some days I dread him coming home from school. How awful does that sound?
     
  7. jdb in AZ

    jdb in AZ <font color=green>It could end up curdled<br><font

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    It sounds like a stressed, honest, mom. :hug:
     
  8. Maggie'sMom

    Maggie'sMom DIS Veteran

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    This is why you need to get in to a child psychologist. I'm not saying your son should have a bipolar diagnosis. That's not something I can say based off a few posts on a message board. But I think it would be good to have him evaluated by someone else.

    The diagnosis of mood disorders in children is somewhat controversial. Some professionals refuse to consider a bipolar diagnosis in a child before adolescence, but it does exist. My DD's current psychiatrist (she has both a psychologist and a psychiatrist) doesn't like to label a child under age 13 as bipolar, but she does acknowledge that the disorder exists in children. She prefers to stick with a label of "unspecified mood disorder". However, she fully recognizes the cycling, mania, and depression that are the hallmarks of bipolar disorder.

    If bipolar is misdiagnosed as ADHD, the treatment can drastically worsen the disorder. A family history of bipolar is something that has to be considered when diagnosing your DS.

    PLEASE seek out a child psychologist as soon as possible. Many have long waiting lists, but it's worth it if you can finally get a diagnosis and treatment plan that works for your son.

    And as much as I hate to admit it myself, I know exactly where you are coming from when you say you dread your son coming home from school. Dealing with a child with these problems is absolutely exhausting.
     
  9. disneydreamin247

    disneydreamin247 DIS Veteran

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    I have to say thank you so much for listening to me and helping me. It really helps to talk to others who understand. I'm going to be looking up providers on our insurance and making an appointment ASAP. I have seen signs of bi-polar in him since he was much younger and no one has taken me seriously. I had to fight to get him into Early Intervention as a toddler, to get him an IEP for kindergarten, and to have doctors listen to me and diagnose him. It's a lifelong battle and it is exhausting, but I just can't give up on him. He is so bright and I know he could have such a bright future if he gets adequate help.
     
  10. bookwormde

    bookwormde <font color=darkorchid>Heading out now, another ad

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    First ODD is almost never a primary diagnosis, but is instead a maladaptive manifestations to some other diagnose or set of circumstances that has continued for a long period of time without proper support.

    There are very effective treatments for ODD, they are finding out the core issue that is triggering the behaviors and properly supporting those needs. Medication can make ODD much worse for 2 reasons. they masks the underlying needs so the child does not get the core supports they need and they are all at some level psychoactive so the child often never feels like "himself".

    I have worked with a lot of families who at the point where you are at this age or a little older. When a proper diagnosis is found and proper supports are in place the ODD goes away in a very short period of time.

    In the end the ODD was all about communicating that the child was not being listened to and understood and was not having his social, clinical and educational needs met for the vast majority of those who had ASD characteristics.

    Since you have had an alphabet soup of diagnose I would say that the clinical competency of that you have had availability to has been marginal at best.

    The anxiety that these kids are under is astounding and overwhelming, so in many senses the ODD is a perfectly rational reaction and attempt to get help.

    Beware of psychiatrists who will just hang another alphabet label on your child without having the competency to investigate , understand and identify the root cause which is most likely based on neurological genetic differences that make interface with the typical world difficult and stressful.

    My suggestion would be to get an appointment at Kennedy Krieger in Baltimore or Yale child center and stop listening to "amateur clinicians" and rely on the most highly qualified available

    bookwormde
     
  11. Maggie'sMom

    Maggie'sMom DIS Veteran

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    Definitely contact a psychologist, not a psychiatrist, for evaluation.

    I had a larger post typed out earlier but lost it. Grrrr...

    OP, I wanted to tell you. You are a great mom. You are fighting for your son's future. You've been fighting for what he needs. I know it's easy to get down and discouraged. I can't tell you not to let that happen because sometimes it's impossible to stop it from happening. But know that you aren't alone.
     
  12. disneydreamin247

    disneydreamin247 DIS Veteran

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    This thread has really lifted my spirits. Support is an invaluable help when going through this, and talking to people who don't understand just doesn't help. I really appreciate you all taking the time to read my posts and write back.
     
  13. nbenson

    nbenson Earning My Ears

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    Get a neurologist.
    Try diets. Had some of same issues, ended up having a seizure disorder. Used tons of really risky meds. Cut down to 3 needed, and low carb diet. We always noticed that my daughter would get very hyper, and out of control after milk, esp chocolate milk.
    It will get better.
    Advocate for your child, and find doctors who care and listen.(Hardest part) If it is really bad, be specific and clear, letting the doctor know the situation, is really out of control. Get statments from teachers, sitters, daycare, family members, so the doctor can see it is not only you experiencing these problems.
    God bless you, and good luck!!!!:littleangel:
     
  14. Kay1

    Kay1 <font color=red>Check out Ricki's hidden Mickey!<b

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    Rishperdal has helped my son, though lately his behavior has been terrifying so he's seeing his doctor this coming Monday. She'll probably just increase his dose.

    He's twenty and huge. He was diagnosed with autism though his neurolgist said it's possible he is bi-polar and even schizophrenic. The worst thing happened Saturday night. He attacked me in my sleep - hit me in the mouth then bit my leg. Pretty depressing and frightening.

    Sigh. :sad1:
     
  15. My2CrazyGirls

    My2CrazyGirls DIS Veteran

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    You have gotten some good advice here. ODD stems from something else and you need to figure out what that something else is. Aspergers, ADHA, Bi-Polar etc. That is the hard part! Not every child fits perfectly into a diagnosis so it will take an experienced professional to figure this out.

    Our DD is almost 7 and although she is not violent her attitude is often that of a teenager! The way she talks to us can be so disrespectful. She does not understand other people have feelings and cannot see their point of view. She has an inflexible personality. She used to lash out and hit but now she rarely does which is nice. She was diagnosed with Asperger's less than a year ago. ODD was first though. She does not fit the mold of Asperger's so it was not a simple diagnosis but it is supported by both her excellent developmental pediatrician and psychologist.

    Keep coming back here to vent and discuss. It will help you and personally it helps me too :)
     
  16. disneydreamin247

    disneydreamin247 DIS Veteran

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    That is so frightening. I'm so sorry you're in a similar situation. I fear my DS attacking me in my sleep. When he gets enraged it's pretty scary to watch.

    Thank you. It really has helped me. My coworkers and friends look at me like I'm crazy for letting him behave that way, they din't understand I really have NO control over him despite my best efforts. I'm hoping to find a good psychologist to help diagnose him and get to the bottom of what is causing his troubles.
     
  17. clanmcculloch

    clanmcculloch DIS Veteran

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    The "mold" for asperger is the presentation typically seen in boys. Girls typically present very differently which is why it is so much harder to diagnose girls. Girls are frequently missed and when they are correctly diagnosed, it's typically much older than boys get diagnosed. The books all describe the male presentation.
     
  18. My2CrazyGirls

    My2CrazyGirls DIS Veteran

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    YES, you are absolutely correct! I am sure that some boys do not fit that mold perfectly or fit perfectly into other diagnoses. It truly takes a team (a highly qualified team) to figure the complex kids out! I hope the OP can get some answers as to where the ODD is coming from. For me, knowing why my daughter acts the way she does is very helpful....doesn't make it easy....but it gives me some perspective.
     
  19. GraceLuvsWDW

    GraceLuvsWDW DIS Veteran

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    My dd is dx Asperger's and I will tell you that she can become aggressive and defiant when there is something "going on" that needs to be addressed. Sometimes it is really hard to figure out what that may be. With my dd, she is unable to have the self analysis and self realization to tell me "I am mad/upset about XXX". A lot of times it takes some serious analyzation on my part to figure it out.

    Here is an example: My dd had been doing really well in school and we had greatly reduced her anxiety and school refusal. Then, out of nowhere, she started having serious anxiety again. She began begging me not to make her go to school. She started crying and becoming defiant during homework and she couldn't focus on anything. She was really irritable and grouchy all the time. I had asked her teacher if anything happened at school and she said no, not that she was aware of. I did a lot of analyzing and carefully asking questions as well as questioning the other moms, and finally found out that the math teacher had said some things to dd that caused all of this. She had told the whole class they were to have a timed multiplication test in which she would only have 3 seconds to reply with each correct answer.

    This doesn't seem like a very big deal but to my perfectionist, anxious dd it was an overwhelming, daunting, impossible task. She has selective mutism so a verbal test with 3 seconds to respond would be very hard, if not impossible.

    Her reaction to this was not to tell me but act out in a way that many would see as a personality disorder or a mood disorder. If I had gone to a Dr and told him of the behaviors we were dealing with, it probably would have resulted in a mood stabilizer or tranqilizer prescription.

    I tell you all this because I had to do the work to figure it out so I could fix it (I had her exempted from the test) to get her behaviors to subside. Behavior is communication! For parents of ASD children you have to be very diligent in understanding the whole picture to try to "fix" the behaviors.

    Believe me, dd has days where any reasonable Psych would insist that there is "more than just ASD going on". But as parents, we have the tough job in trying to determine what is just a reaction to something they are not able to process or deal with. Good luck!
     

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