Discussion in 'General Parenting' started by ilovemykids, Mar 5, 2008.

  1. ilovemykids

    ilovemykids New Member

    I need to vent (it's my first time here). My heart is breaking for my 6 year old son. He was diagnosed with ADHD and ODD last year,....after trying to get one since he was 18months. I'm so frustrated that we keep getting doctors (I'm so sick of them) who dismiss me, like I don't know what I'm talking about or they say well as long as things in school are doing ok that's all I'm worried with. I want to punch them. We have 3 other small children (younger than him) and his behavior is creating complete chaos in our house and is affecting them too. Plus the medications he's on (Stratera) make him soooooo tired that he started having almost daily overnight accidents (he can't wake up now-hadn't had an accident since 2 1/2) and to keep himself from falling asleep he gets worse just to stimulate himself...on the weekends he started taking a 4 hour nap after being up only 3 hour....again he hasn't napped since 2 1/2. But once again the doctors won't change the the way I've seen 4 and none of them will!!!- seeing another one in a few weeks). I just want to scream!!! He is such a wonderful kid when he's not being defiant....I just wish we could help him better.

    Plus, every year for the past three years all of his symptoms go into overdrive in the winter plus he intentially bumps things, bites anything he can but into his mouth (clothes, blankets etc.) and gets so much more angry. He's actually ruined the top corner of his winter coat from doing it so much...It's horrible...but do you think any doctor wants to pay attention to that...I'm pretty positive that he has Seasonal Affective Disorder (so is the school-his teachers are wonderful)...Of course he's now having to be restrained at school everyday because when he's angry he lashes out and gets physical or throws things (the other day he threw a chair towards his teacher because he didn't want to go to art)...Sad to say but sometimes his behavior embaresses me, and I can't do anything but make a joke about it later (my coping skill)-I know people who don't know my family think we're just crappy parents and that if we'd just put our foot down he'd be "good"....ha ha....We've tryed a zillion different parenting/disapline techniques and nothing has worked really well....we just started a new one (the school and I sat down for 2 hours and designed a program for both places so that he knows the rules are the same no matter where he goes and the consequences are too)-I have a early childhood education and child development background.
  2. smallworld

    smallworld Moderator

    Welcome! I'm glad you found us.

    Sorry for all the questions, but your answers will help us point you in the right direction:
    What kind of doctor diagnosed him? What kind of doctor is treating him?
    What other medications have been tried and how did he react?
    How does he do in school, both academically and with peers?
    Any sensory issues (for example, sensitivity to clothing tags, loud noises, food textures)?
    Any developmental or speech delays?
    Any mental health issues or substance abuse in the family tree?

    If you haven't already read it, you should get your hands on a copy of The Explosive Child by Ross Greene. It has helped many of us on this board parent our extra-challenging children.

    When you get a chance, please go to "User CP" at the top left corner of this page and create a signature similar to mine below. It helps us keep everyone on the board straight.

    Again, welcome.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Smallmom asks good questions.
    Have you ever taken him for a neuropsychologist evaluation?
    Are you convinced his diagnosis is right? If Straterra is making him worse, it makes no sense that nobody will wean him off of it. Straterra is not always a good medication.
    Sounds like he sensory issues, with the biting of clothes, etc.
    I would be looking for more answers. I wouldn't be satisfied that anyone has nailed it yet. neuropsychologist evaluations are much longer and more intensive and involve lots of testing and hours of observation.
    Normal parenting techniques don't work for children with certain disorders. Don't let anyone make you feel as if anything is YOUR fault. Your child is just wired differently.
    Welcome to the board :)
  4. ilovemykids

    ilovemykids New Member

    He was diagnosed by a neuropsychologist almost a year ago. He has been on an IEP since he was 3y 10m. He started in an Early childhood classroom but they thought it wasn't meeting his needs because he was way more advanced than the other kids. He tried Concerta b4 Stratera and that was the most horrible drug ever (dbl. blind placebo trial)...I knew when he was on it because it made everything 10x worse. The neuropsychologist sent us to a pediatrician doctor for medications...She doesn't listen so talked to his reg. doctor (wants to put him on depakote), called a different hospitol referred us to another doctor...found out when we got there that he is another pediatrition but he referred us to a behavioral health practice at another hospitol...(waiting for the app't) and a clinic that deals specifically with EBD in the Twin Cities (8month waiting list).

    He is great at school and at home when he is on....he's like a light switch...either really great or really bad...not much gray. We also have looked into S I disfunction but it didn't really fit him. He gets worse every winter...but that doesn't mean he doesn't have good days....

    He excels in school and gets along well with others (when he's "on")....he is such a loving, kind kid. His teachers just love him....however when he's in a rage he isn't's like he's possessed.

    I was diagnosed in HS with ADHD (not on medications-don't need them although my mother would say I do) No other problems.

    I don't understand the lingo in here....could you tell me what they mean...ex. difficult child? so I can write my sig.
  5. nvts

    nvts Active Member

    Hi! My brain is "sludgy" (I haven't finished my first "cuppa" coffee!), but you can get all of the "lingo" in the first forum. All you have to do is click on the tab up top (next to home) hit the Forum button and the very first forum listed will have all of the acronyms.

    Once you get used to fiddling around on the board, you can look at the home page and look at some of the symptoms that different kids have.

    Are you sure it was a full blown neuropsychologist (several hours of testing over a few days?) or did you go see a neurologist and then a psychologist? It just bugs me sometimes because one of the automatic diagnosis that gets thrown out there is ODD (they pinned that as my oldest's only problem - in reality we've got Aspergers Syndrome which mainifests with ADHD AND ODD, and last week they threw in PTSD for a chaser) when all it takes is a little more testing to get to the root of many of our children's problems.

    Don't feel like you're alone! We're here and to many we've really made ourselves a neat little family!

    Welcome to a great crowd!

  6. tryinghard

    tryinghard New Member


    Welcome to the board. My son is 12 and diagnosis'd as ADHD when he was 7. I know exactly what you are talking about. It is so frustrating.

    I know that every child is different, but my difficult child had horrible reactions to Straterra. He was definant and very depressed.

    I hope you get someone to listen to you....keep fighting! I am glad you found this site because they people here have really given me excellent advice and support.

  7. susiestar

    susiestar Roll With It

    Welcome! I am so glad you found us. Lots of info and support here, welcome to the family.

    HAs your son been tested by a private occupational therapist for sensory integration disorder? It may be one of the best things you can do right now. Check with your insurance and then make an appointment. USe the clothes chewing to justify a referral if one is needed. A school Occupational Therapist (OT) evaluation will only focus on what is hurting his abilty to learn. You need the overall picture.

    The book, "The Out Of Sync Child" is wonderful. It explains Sensory Integration Disorder (SID), and gives things you can do. The book, "The Out Of Sync child Has Fun" gives games and activities to help with Sensory Integration Disorder (SID). I found that by doing hte activities in the Fun book I had ID'd the problems my youngest had. The evaluation said it lead me to exactly what he needed to do.

    I think this needs to be a very HIGH priority. When you get the Sensory Integration Disorder (SID) helped it can make so very many other behaviors much better.

    The night-time accidents are not unheard of. Soemtimes it helps to get the child up when YOU go to bed. Have him go potty then. It may not eliminate the problem, but it can help. Others will have more tips.

    If you go to the FAQ/Board help forum it show a thread for a Parent Report. This is a way of organizing everything. It can help give the whole picture to you, the docs, the teachers, and anyone else you work with. It is helpful to send it in advance if you can. Be sure to check the CDC Milestones thread on the Early Childhood forum as you do the Report. It can jog your memory, and can help you see if he hit the milestones early. late or on time.

    It can help to fax the questions to the doctor a day or so ahead of an appointment. Be sure you have a copy (and a spare because things often get lost). Be prepared to sit in the office until you get some answers/results. Make sure the doctor knows you are NOT happy, and that things need to change. Ask WHY??? to everything. And wait for answers. Or say, "That is interesting information, but it doesn't answer XYZ"

    Remember, YOU pay the doctor. He is not "doing you a favor" by listening, nor is he God. It is just fine to reasonably, calmly and politely insist on answers. Getting mad, emotional, etc... (other than the tear you can't hold back) usually do NOT help.

    Keep coming back. Others will be along soon with help and ideas.


  8. looking4hope

    looking4hope New Member

    Welcome! There are many of us here who know what you are going through, so feel free to vent. We're here to listen -- and give our two-cents worth!

    After reading your post, I think you need to consider a mood disorder or bipolar as a condition. My difficult child, also originally diagnosed as ADHD, did not do well on stimulants at all. His behavior got worse on them, and it took two hospitalizations for the psychiatrists to agree to take him off. He is on Strattera (among other medications -- see the signature), which in combination with the other medications has been good. However, Strattera alone in a child that has bipolar or a mood disorder can also send him into mania, so it isn't a good fit by itself. been there done that, and now I realize that as my child grows and his brain develops, medications will always need to be adjusted!

    The reason I suggest bipolar is that many people with the disease have a seasonal component to it. They tend to get depressed in the winter, but in kids with BiPolar (BP) they become more aggressive when depressed (read "The Bipolar Child" and also "Parenting a Bipolar Child", both are available at It's also very difficult to diagnose a mood disorder, much less BiPolar (BP), in a child, so even though you've gone to several psychiatrists and a neuropsychologist, I would still seek other opinions.

    Good luck, and I hope my suggestions help. Let us know what this new doctor says,ok?
  9. ilovemykids

    ilovemykids New Member

    4 hour neuropsychologist may be bi polar...however if it would be it would have to be rapid cycling...he's like a light great...freak great all within a short time frame...that is why I'm hesitant to do depakote. He was ahead on every dev. milestone except talking (he talked early too however it took quite a while for us to really understand him because he mushed all his words could understand him perfectly if it was only a few words and not a story) explain more when he was little we never could re-direct him (hours of trying) temper-tantrums=hours, ignore him=get worse... When he is good he is AMAZNING!-such a wonderful kid...kind, compasionate, loving, funny etc. but when he's off look out (mainly if he doesn't get his way or the way he thinks it should be (perfectionist)). Ex. At school the other day he went into a huge water puddle (wouldn't get out or stay away after repeated requests), when they went to get him out he took off-hit 2 teachers had to be carried to EBD room (still fighting)...took 2 hours for him to calm down and then "snapped out" of it-and was perfect the rest of day.
  10. ilovemykids

    ilovemykids New Member

    To the Sensory Integration Disorder (SID)...the school Occupational Therapist (OT) worked with him on it (that was what they thought-psychiatric just wanted an easy ADHD (school doesn't agree with this diagnosis)...Occupational Therapist (OT) everyday....defensive at first (scrub brush/high impact/weighted vest etc) but grew to like it however it didn't help behaviors much so we deemed it not nessasary....did this for a whole year (scrubbing-every 2hrs round the clock for two weeks, working our way down to 2-3x/day)
  11. susiestar

    susiestar Roll With It

    It still sounds like some Sensory Integration Disorder (SID) component going on. Brushing didn't help, nor did weighted vests and things, what ORAL stimulation did htey work with? Seems to be a BIG oral component - that is what chewing on his clothes and biting things is telling you. The books I recommended shoudl have activities for oral stimulation to help.

    I also think bipolar. Kids tend to be VERY rapid cyclers. Some can cycle within the space of minutes. Depakote might very well be needed. Some kids need more than 1 mood stab.


  12. ilovemykids

    ilovemykids New Member

    I'm not a dr. but depakote has sooooooooo many side effects (reg. blood tests for liver function)....makes me nervous
  13. ilovemykids

    ilovemykids New Member

    Well we tried 5 medications (ADHD)...all which made things back on stratera...and I hate it!!! It only takes the edge least an episode a day still....the crappyest (?) thing about it all is that my 4 yr old is copying behavior and so is my next youngest...(they think it's a good way for attention)....I just want a normal life~!~~!!!!!! School starts again in a week and I just know I'm in for it. He's napping 3 hrs a day and when he doesn't LOOK OUT! Poor kiddo....he is probably one on the best kids out there he just can't figure it out.............................. Oh did I mention he's started saying things like I wish I was dead...contacted his Dr. appointment on Fri.
  14. jal

    jal Member

    Your difficult child sounds A LOT like mine. He was diagnosis'd with-ADHD and Early Onset Bi-Polar (EOBP). Was on Depakote, Abilify, Straterra and Tenex. My difficult child cannot take a stimulant to save his life. We have trialed 7 different stimulants. Each one makes him more agitated and prone to physicality. My difficult child is just finishing up a 3 week psychiatric hospital stay this week and they trialed a stimulant (which we told them would not work) so they went back to the old class of medications they used to used which are anti-depressants. This so far has been proven to be the only thing to help with his ADHD.

    Straterra never worked well for my difficult child either.

    Good luck. I do sympathize as I know what you are going through.
  15. TerryJ2

    TerryJ2 Well-Known Member

    Hi, welcome.
    I would be ready to throttle the dr.
    Clearly, it's the wrong medication and your son has something else going on, especially if he's chewing on things.
    I would switch doctors asap. I mean, driving to the Twin Cities may sound like a long drive, but it's worth it if you can find a good dr.
    I am so sorry the other kids are copying your difficult child. Argh.
    I'm sending calm and clarity through the DSL.
  16. Calgon_Take_Me_Away

    Calgon_Take_Me_Away New Member

    I wanted to chime in and say WELCOME! I've been on my own hiatus for the past couple weeks.

    I'll start by saying, are you sure you aren't raising my child 3 yrs ago? I can so empathize with what you're going through.

    Before doing medication changes in Sept 2007, we did thyroid and food allergy testing. Both came back normal so we switched medications.

    Stimulant went from Adderall XR to Concerta. Dropped the Abilify. Added Depakote! Let me tell you, Depakote (from what I see) helped in 2 ways: he stopped thrashing about during sleep (hitting, kicking, yelling, growling, teeth grinding) and his rages stopped completely (rages that were full blown restraint needed). He gets Depakote levels tested every 3 months. Currently he's on 625 mg with- levels of 84 in July. At 500 mg his level was 64. They use a butterfly needle and it's virtually painless for difficult child.

    He's now on Vyvanse instead of Concerta.