Verdict: ADHD, ODD and sensory issues

Discussion in 'General Parenting' started by maxeygirls, Jul 22, 2010.

  1. maxeygirls

    maxeygirls New Member

    difficult child and I spent 2 hours in the evaluating psychologist's office today. In those two hours I had to restrain difficult child twice, put her at parade rest four times (what I use instead of time out, works much better for us... also prompted the psychologist to ask if I was prior military, oops I guess it still shows!), toppled over a chair while in it, fell twice, went totally bonkers kicking everything she could and basically showed her worst... and best. They almost completed half the tests which was more than the psychiatric expected. At the point where difficult child gave up, she was answering everything with the word "blethera" aka "I'm done, leave me alone"
    I was very careful to give the psychologist only the facts, and never to voice my opinions on what could truly be the right diagnosis. Secretly, I've been leaning towards ADHD and ODD for longer than I've liked my 'new' pair of shoes. She was so kind to me and so observant with difficult child, catching things that my overly tired brain totally forgot about. She asked tons of questions, observed, played and tested.
    Finally she turned to me and said her final decision was that difficult child is on the extreme level of ADHD, ODD and sensory processing disorder (SPD). She suggested we try a fast acting, temporary ADHD medication which will show us if it helps and if difficult child will suffer any side effects quickly, then if it does help we can move onto a permanent form. She also suggested speech therapy (hello, been screaming for this for over a year!), occupational therapy (wait, someone to HELP difficult child handle things better?!? CONCEPT!), developmental preschool for 2 years and possibly a sleep medication if difficult child quits responding to the melatonin. She also wants a neurologist to do an MRI for these shudders difficult child has been doing since we're unsure if it's the depakote or difficult child and she's not quite off the depakote yet, 3 more days!
    She went on to say that her hope is to keep difficult child in a regular classroom in her k-12 years and if we are willing to do everything possible, she thinks it's doable. She really focused on difficult child's education, social skills and sleep issues, my sanity, easy child's safety and husband's ability to handle it all. I'm getting pretty used to being asked if I'm medicated yet and seeing the lack of surprise on their faces when I say "No, but I started smoking again and I don't think I have the capacity to quit at the moment."

    I cried all the way home. I know public school systems, I know what a struggle we have ahead of us. I finally had to tell myself "hey, you know the 8 or so years you planned to go to school while the girls were in school? yeah, forget it." I know there's a slim possibility but frankly I can't think that way. If giving difficult child the best chance means giving up on my dreams, I won't hesitate.
    My parents took the news a tad bit better than the bipolar news, husband took it like a champ. I think his first thought was "Hey, I understand her now!" Unfortunately he now thinks this will be a piece of cake. He's thinking once we get the magic pill she'll be *voila* normal. I guess he'll figure it out. In the meantime I appealed to him using a totally new tactic..."you know exactly what she's going through, you have the perfect opportunity to come riding in like a white knight and relate to her, and to help me understand!"
    It seemed to transform him. As I finished talking I could practically see his chest puff up like a cartoon rooster and he spoke with a more certain tone when he said he'd do his best. I'll try anything to get him to be more understanding and maybe since he knows what she's going through he'll finally quit being a jerk about it.
    The pediatrician should be contacting me tomorrow with info on medications, I'm calling the district tomorrow, a friend who is a Special Education teacher is willing to go with me for that, I'll also be calling insurance to find an occupational therapist and speech therapist.
    Right now I feel raw, overwhelmed and just plain tired. I have hope, truly I do. I'm happy with the results but right now I just want to sleep for a week.
  2. maxeygirls

    maxeygirls New Member

    And if anyone has any info regarding what possible medications they may suggest for difficult child, please fill me in! I feel as if I'm totally in the dark.
  3. Marguerite

    Marguerite Active Member

    I'm glad you got some useful answers.

    My vote still is for consideration of atypical high-functioning autism, especially given the language issues. But I do hope that ADHD medications will help. They may make a huge difference.

    The two main medications I know, are dexamphetamine and methylphenidate. Methylphenidate is also known as Ritalin when it's short-acting, and Concerta in the long acting form. I think it's also possible to get LA Ritalin as distinct from Concerta.

    We found rebound issues with Ritalin, with both boys. difficult child 3 was trialled on Concerta and still had rebound. What is rebound? That is when you find a good benefit from the medication, but as it wears off it is as if all the symptoms kept at bay all day have been stored up and trotted out at once.

    We still find some level of rebound with dexamphetamine, but we get it when medications are missed.

    Part of rebound is the child feeling the difference when medications are not on board, and because they stop being used to having to cope, they forget how to and often feel resentful at suddenly not being able to manage as well as they usually do after all. But there is also a chemical form of rebound, that is the one to avoid.

    Dexamphetamine is only available in short-acting form, but we pay a bit extra to get it privately made up into a long-acting form. It is what works in our family.

    Therapy is also very useful, and you can do a lot yourself. One thing to watch for - does she seem bright? In which case, she may be constantly craving stimulation, and if you can provide it, especially intellectual stimulation, it will teach her to focus on academic stuff for long periods of time. Although easy child was not technically ADHD, we did find that she needed to be kept stimulated. Her teachers went crazy trying to keep her busy. She was a horrible kid when bored. difficult child 3 is similar. So we invested in a lot of computer software such as Zoombinis, Carmen Sandiego, various interactive books and cartoons in an educational vein - that sort of thing.

    Something we did for difficult child 3 to help with language delay problems, was we bought a hand-held 20Q game. This is a remarkable gadget that seems to read your mind. But what it does do, is build more mental pathways between different parts of the brain, connecting ideas and knowledge about whatever word or topic you have chosen. We had bought the game and then noticed how it did the same sort of job as an exercise we'd been given by the Speech Pathologist.

    Follow your instincts and if something seems to help, use it. Do it. Think outside the square. Trust yourself to be able to do a great deal for your child. Also trust your child to have a good instinct for what will help her.

  4. maxeygirls

    maxeygirls New Member

    Thanks for the info. Everyone who has seen difficult child thus far seems to believe most of her speech issues come from a series of ear infections she had for 8 months as well as the stress she's had and they are convinced that she doesn't fall on any spectrum of Autism. Trust me, it's been looked into big time.
    That poor child has dealt with so much in under 4 years of her life and although I know there is something actually wrong, I'm still convinced the stress brought the symptoms out stronger and sooner than if she'd had a semi normal start at life.
    She already has her own computer at my parents house with several learning games, and it'll be moving to our house as soon as we have the room.
    Thankfully ADHD is something I'm very familiar with how to deal with and the ODD and sensory issues explain a lot. In a way, it's a blessing to have a husband who is still showing HUGE signs of ADHD because it seems to have clicked a light on in his brain and he's dealing with her better. I just hope it lasts.
    Currently our goal is still to transfer from national guard status to active duty, finally get difficult child enrolled in the military's exceptional family member program(which includes respite care up to 40 hours a month), get a place where she has her own room and get her a yard to get some energy out... oh and a dog. difficult child is dying for a dog. Somehow 4 cats aren't enough, she has to have a dog. God help me, I think she's her mother's child... I had 37 animals when I was 16.
    Last night I felt pretty overwhelmed, today I'm feeling like it's sinking in and I can do this. Now all I can do is wait for her pediatrician to call with info on medications, the psychologist was calling her as we were on our way out the door.
  5. joneshockey

    joneshockey Guest

    I am glad that you got some answers yesterday... We are also considering medications for our B2's ADHD. Concerta is what has been reccommended from the pediatrician, but I am a little bit concerned about the irritibility side effect. B2 has a big issue with being irritable already and I am worried that it may make his current issues worse. I discussed this with B2's psychiatrist at yesterday's appointment and we have decided that we should probably wait until B2 goes back to the psychatrist in Sept. since he is the one who perscribed his current medication. We may end up changing our minds if he has issues once he starts back at school. Keep me posted on what medication you are perscribed and how your difficult child is doing on it once you get going with it.
  6. Marguerite

    Marguerite Active Member

    That sounds like the rebound I was talking about. And it's not necessarily irritability. difficult child 3's friend would get weepy as it wore off. Over time, he has adapted so he is a bit more prepared for it now. It really does vary from child to child, and if it is a problem then it's simply a matter of changing to something else. Within a day or two of stopping Concerta, it's washed out totally of the body.

    We started difficult child 3 on ADHD medications when he was 3 years old. For him, it was the best thing he could have done.

    On the language issue - it doesn't make a lot of difference if the language delay is due to autism, or ear infection; delay can cause lifelong problems of reduced brain pathway connections and you can deal with this by deliberately making new pathways with exercises and word games including the hand-held one I mentioned.
    We drive a lot, going to lots of places, so we adapted a lot of exercises to word games played in the car. Never lose an opportunity!

  7. maxeygirls

    maxeygirls New Member

    Umm...ok I think I'm in shock here. The psychologist and a friend of mine who is a Special Education teacher both suggested giving difficult child a little caffeine to see what she does. husband drinks an energy drink before going to my parents simply to calm himself down so he doesn't drive them up a wall so I figured it was worth a shot. difficult child is always begging to share my coffee so this morning I got out two of my 'mommy' coffee cups and made my usual 2 cups and poured about half a cup into hers along with creamer. She's been calm all day. She ate her lunch, played with easy child nicely, no extreme moods, seems more aware of her surroundings. At one point I shoved her blanket off the couch, which typically means a full blown tantrum. This time she looked at me, walked over and said "If you throw my blanket on the floor one more time, I'm sending you to parade rest for two minutes!" That is the longest and most clear sentence she's ever said without any help. The caffeine is beginning to wear off and I'm not getting my hopes up but I really think we're on to something here.
  8. joneshockey

    joneshockey Guest

    Wow... I am impressed, maybe I should try that with B2 to see if it works - tomorrow may his trial day! Did you just give her the caffeine once or multiple times during the day? Did it affect nap time at all? Please let me know... I am interested.
  9. Marguerite

    Marguerite Active Member

    caffeine is a stimulant, but it is a blunt instrument. In our family, it makes our kids worse. Probably because the amount needed is wrong, or its action is too broad.

    But if caffeine works like this, think about it - this is what is called a paradoxic effect, which is what they are aiming for in using stimulant medications in ADHD.

    Good news! Just don't overdo the caffeine!

  10. graceupongrace

    graceupongrace New Member

    We tried Ritalin and Concerta for ADHD/ODD, and they were better than nothing, but Vyvanse has worked much better for us -- more effective, longer lasting (11-12 hours!), and difficult child says he "feels better" on Vyvanse than he did on the other medications.

    Hope you're getting closer to a solution!
  11. GoingNorth

    GoingNorth Crazy Cat Lady

    husband had ADHD and since he couldn't take medications while in the Army, he drank massive amounts of coffee and chewed on chocolate covered espresso coffee beans. (I tried this things and they gave me palpitations, LoL)

    Once he returned to civilian life, he tried a few ADHD medications, but rebound was HORRIBLE, as others said, it was like he'd saved it up all day until he got home.

    He went back to the coffee, going so far as to drink several cups right before bed time so he could settle down
  12. tracyinks

    tracyinks Guest

    My 6 year old has been on Vyvanse for almost two years... it does really help his focus. Also I do sometimes let him have a drink of my coffee because of the calming effects it has on him.. (but they don't last long)

    Concerta did NOTHING for him.
  13. maxeygirls

    maxeygirls New Member

    Note to self: The negative effects of caffeine if consumed by a 3 year old after 12 pm are not worth the positive effects. difficult child was fantastic all morning and most of the afternoon until our other ADHD household member came home from work. She had a little more(1/2 cup of weak coffee) caffeine at about 1pm and was up until 3:30am. Oh well, you win some you lose some.
    The caffeine did work to regulate her, but the stimulant effects seem to last far too long and I think the fact that she wasn't running amuck all day means she didn't run off her usual energy. I was also warned that we may have the same problem when she starts whatever ADHD medications we decide on and may have to consider something stronger than Melatonin for sleep.
    I'll be calling the pediatrician on Monday to get the status on medications.
  14. Marguerite

    Marguerite Active Member


    Be aware, stimulants do similar things, so you also will need to NOT medicate after a certain time of day (it varies from kid to kid and changes as they get older). With sustained release medications, you might find that one dose in the early morning is all you need to last all the school day and taper off into the evening.

  15. agee

    agee Guest

    We tried all the stimulants with our little guy, and we've found that Vyvanse works the best for him. Just like others have posted, it lasts the longest and the rebound is far less severe than any other medication.
    Good luck -
  16. maxeygirls

    maxeygirls New Member

    At this point I'm convinced of two things; it wasn't just the coffee that was keeping her up, and the medications she was previously on (depakote, abilify, risperdal) were literally sedating her.
    She has been getting around 1-4 hours of sleep each night except for two nights last week. She swam for over 2 hours on Saturday and was still up all night so it isn't lack of activity.
    Last night I told husband to get the allen wrench and he watched in awe as I went into 'crisis mode,' disassembled easy child's crib, moved it into our room, packed up every single toy, book and stuffed critter in the girls room, put child locks on every window with vice grips, barricaded the front door, locked the fridge up, stashed our medicine lock box in a hidden location and the key under my pillow and unplugged the phone so difficult child can't call her grandparents at 3am. Truthfully he tried to help but after doing this alone for so long and being so exhausted I just wanted to get it all done.
    The psychologist warned me that difficult child may need something specifically for sleep aside from the 9mg of melatonin, which is currently doing nothing.
    I know the medications were sedating her because although she slept, she was still tired and she slurred her words and couldn't even speak a full sentence. The longest sentence I ever heard her say was "I want that, please" and it sounded more like "eyee waaaamt daaaat, treeeese!" but since Friday we've been hearing clear sentences like "If Papa comes over, can I read with him and build a castle?" and "I don't want to eat that, can I have cheese instead?" She is currently unmedicated and has developed the ability overnight to communicate past 3-4 word statements which nobody could really understand. However if she stays unmedicated for long, they better medicate me!

    husband has no idea what he's in for and just keeps remarking how difficult child can't go very long with so little sleep, she has to crash sooner or later... ha ha ha. Don't hold your breath, buddy. I almost feel sorry for him, he has no idea what he's in for.
  17. Marguerite

    Marguerite Active Member

    Risperdal alone could have been responsible for the high level of sedation.We found with difficult child 1, although he is 10 years older than difficult child 3, he could only take a quarter of the same dose and it still would put him to sleep for hours and he would be groggy when he woke.

    Stimulant medications don't necessarily keep a kid awake. Especially if they're only given early in the day. If they are going to work as that should on a hyperactive child, stimulants will actually help them focus and concentrate more effectively.