Back at square one

Discussion in 'General Parenting' started by SingleADHDparent, Aug 19, 2011.

  1. SingleADHDparent

    SingleADHDparent New Member

    This is my first post on this site. I found it out off desperation. My son and I had one of the worst mornings we have had in years. I know that I handled it badly out of my frustration. He has been in counseling for his behaviors for about 2 years now and was diagnosed with ADHD and ODD in early spring. He turned 5 last month. Things were going pretty well until his birthday. We started him on intuniv in June with hopes of having some of his impulsiveness and anxiety under control before school started. But for some reason everything went downhill after his birthday. For the first week his counselor and I attributed this backward spiral to the excitement of his birthday but after 3 weeks we decided, along with his doctor to increase the dosage of his medication. The one thing we noticed during the original adjustment period to the medication he cried over everything and required a lot more sleep. Now that we have increased his dosage we have seeing that again. This morning I ended up breaking down and crying in front of him because he just would not listen to anything. He was so overtired and yet just would not give in and go back to sleep. I finally took him to daycare and am now left home alone feeling like a terrible mother once again. I feel like all the progress we made over the last 2 years has gone out the window and I am terrified of what is going to happen when he starts school at the end of the month. Apparently there are no support groups for parents in my area so I am posting here in hopes that someone out there has some advice, any advice for us. My son is my whole world and it has been the two of us against the world for a long time now. Last spring we moved back to our home state where we do have the support of my parents who are amazing but even that does not change the fact that the majority of the time it is just the two of us.
  2. InsaneCdn

    InsaneCdn Well-Known Member

    First - welcome.
    Lots of us here are in similar situations - as in, "us" against "the world".
    And you're fortunate to have supportive parents. But that doesn't solve the problem.

    You've noted his medications, and his age, and his diagnoses - good start.
    Who did the diagnosis? how much testing was done? what recommendations were given?
    What kind of behaviors are you dealing with?

    Each of us seems to have our own list of "questions" depending on "where we're coming from" - if you know what I mean.
    I'd be looking at...

    1) quality and quantity of sleep - if this is off, behavior is guaranteed to be a problem, AND it makes things like ADHD worse
    2) motor skills - how is he with tieing shoes? buttons? how about learning to ride a bike or throw a ball? Do you see him as clumsy? Or, can he do stuff, but it takes him longer? If he has motor skills issues, he's getting to an age where this will affect his perception of himself... and he'll need interventions to work around this.
    3) anxiety?

    medications is a whole other issue - for some kids medications work, for others they don't - and for many kids, its tricky to get the right medication and the right dose... you're on the right track with trying stuff and adjusting dosages etc. but its really hard in the mean time.
  3. keista

    keista New Member

    Welcome to the board and ((((HUGS))))

    First off, you are NOT a terrible mother. You did not intentionally throw out the instruction manual he came with - you never got one. When you found one that was a close fit, you jumped in and used it - successfully it sounds. Problem is, such manuals simply don't exist - for ANY kid.

    Second consider that maybe this drug isn't appropriate for HIM. Might have to try others to find a good fit.

    Third, many of us here don't believe that ODD is a diagnosis of it's own. It's more a list of behaviors that can be seen in countless other dxes, and those need to be ruled out, but at such a young age, it is often very difficult to do so. At his young age, it's certainly an acceptable "placeholder" that says there is something more going on with this child, but you need time and age to see what the driving diagnosis may be.

    So, welcome again. You've found a great place for support, guidance and insights. :notalone:
  4. SingleADHDparent

    SingleADHDparent New Member

    We started with questionnaires filled out by both myself and his preschool teacher that his counselor had given us. He is seen by a section of our local mental health department that only sees child ages birth to 6. These questionnaires were then graded and then I we met with his counselor to go over them. The numbers weren't exactly the same but both showed him in the clinic range for ADHD and ODD. At that point he was referred to a child psychiatrist who also works for mental health. At our first session we went over all the medications available and my son's behaviors. His case is considered to be unique because he has days sometimes even weeks where there are no signs of the ADHD or the ODD. But then we have weeks where he is "text book". After much discussion with family and friends as well as research on my own we decided to try Intuniv.

    The major behaviors that got us started were aggression, tantrums and just outright defiance. The aggression was under control for the most part until this week. When he began throwing toys at other children at daycare. The tantrums had stopped for almost everyone but me. However he is now beginning to throw those again as well. They start as just melting down. Every time he has a transition or is told no he cries. When the crying gets him nowhere he increases the intensity until he is in full blow tantrum. This may result in throwing things or needing to be physically removed from an environment for an outright refusal to go. His impulsivity has almost resulted in him being run over by a car which is what prompted the medication increase. He told me that he could not make his feet stop running in the direction of the car. It is my policy that if he wants to throw a tantrum he does it in his room. Last week he tried to climb his wall while in a tantrum and when I addressed this issue with him I was informed that it was his room and he could do what he wanted. The kind of comment you might expect from a teenager but not a 5 year old.

    He is a very restless sleeper. It seems he can't stay still even while sleeping. Last night he was up three different times during the night which is why I told him that he needed to go back to bed at 6:30 am when he got up. He had bags under his eyes and could barely stand. But he just started crying and went into a tantrum that lead to him screaming at the top of his lungs. This in turn puts him into such a coughing fit that we have to pull out either the nebulizor or inhaler. One of the side effects of intuniv is sleepiness but I can't get him to sleep more then 10 hours at night and daycare typically has to roll him off his mat and take his blankets away at the end of nap time.

    His gross motors skills are advanced for his age. However, his fine motor skills are slightly behind. He can't tie his shoes will barely try and really struggles with buttons and snaps. He will wait until the absolute last minute to go to the restroom and will then end up in a meltdown because he can't get his pants off and has to go so bad. His handwriting and coloring are pretty average for his age when he is able to slow down enough and concentrate on it.

    His social skills are also lacking. He throws a tantrum almost everyday when I pick him up at daycare. As we are leaving most times his friends will want hugs. Some days he will give them hugs other days he pushes them away or screams at them.

    Any transition in his day results in crying.

    Most days with the amount of crying and whining I feel like I have a 2 year old rather than a 5 year old. He starts kindergarten at the end of the month and I am terrified. We moved to a very small community with a school that has an amazing reputation for dealing with ADHD which I am very grateful about.

    He spends two nights a week with my parents to give us a break from each other. One day last week we had to take this night away because his tantrums that day were such that I felt I couldn't ask my mother to deal with him. I am afraid to take him too many places because I hate the way people whisper and comment about his whining and crying. I know that eventually he will be able to tell what they are saying and I hate it when he feels like there is something wrong with him. He has already voiced that he was not a good person and maybe everyone would be better if he wasn't around. I constantly tell him that he is not bad just some of the choices he makes are bad choices.
  5. SingleADHDparent

    SingleADHDparent New Member

    His dr did comment that chances are good, given his bio dad's diagnosis of Bipolar, we are dealing with bipolar but refuses to make such a diagnosis until he is sure and would never make that diagnosis at this young age.
  6. InsaneCdn

    InsaneCdn Well-Known Member

    Major Red Flag.

    He has serious sleep issues, and you're not even going to get a proper diagnosis until you can get past this.
    I'm guessing that, days when he does better, he isn't nearly so tired - and when he is tired, he cannot cope with ANYTHING.
    Consider this: sleep deprivation is a classic military torture technique.

    Your challenge: its really hard to get people (medical, mental health) to take this seriously. But you have to.
    Because... the next issue just might be depression.
    And THAT might explain some of his impulsivity... not a direct suicide attempt, but feeling so far down that he doesn't care what happens - its like he's trying to run away from himself.

    Start documenting the overlap between sleep patterns and behavior patterns.
    And then start trying to find solutions to the sleep problem.
    When you solve the sleep problem, you probably won't be dealing with ODD, and might not even be dealing with ADHD.

    Has he always been so restless in his sleep?
  7. SingleADHDparent

    SingleADHDparent New Member

    InsaneCdn - Yes he has always been so restless in his sleep. He started sleeping through the night at 5 weeks old but even though he was sleeping all night he was constantly moving. Once he learned to roll over he would go from one end of the crib to the other in his sleep. Every time I would check on him he would be in a different spot. To this day I still can't keep blankets on him and had to move him out of a toddler bed at 3 because it was just too small for the amount he moves. However, once he is asleep it is almost impossible to wake him up. No matter how much he is tossing and turning you can't wake him. Often times I will find him standing in the hallway crying. After the first couple times I figured out that he is still asleep but knows he has to pee. He will get just out of his room and then stand there and cry. I have to bring him to the bathroom and stand him in front of the toilet and aim his penis. Then put him back in bed. He will sleep through the whole thing. Other nights he is in my room 3-4 times during the night because he actually wakes up. I had to put parental locks on the tv's so that they won't turn on before 7am because if he does wake up he will stay up all night watching tv being careful to keep the volume low enough as to not wake me up. I am such a sounder sleeper that for 2 years I slept in our living room for fear he would get out of the house or hurt himself when he got up. I have tried putting him to be earlier but that results with him laying awake until way passed his normal bedtime out of spite. Not matter what time he goes to bed he is up by 6:30 at the latest. If he gets too overtired you would swear I gave him speed. There have been times when I had to give him herbal remedies to calm him enough to be able to even function and after about 3 days they would calm him down enough to sleep. Now that we are back in our home state I can't get those herbal remedies locally. I recently tried calm child because he got so excited over a vacation in March that he wasn't sleeping and I couldn't have him fly across the country like that. It got us through the flights but that was it. His counselor recently recommended melatonin but with sleepiness being a side effect of intuniv I don't dare give him something to make him sleep. We see his psychiatrist next week so I will bring all this up again to him.
  8. InsaneCdn

    InsaneCdn Well-Known Member

    This definitely sounds like a sleep quality issue. Not getting enough of the right kids of sleep...
    Some medications have sleepiness as a side effect, but do not improve the quality of sleep - in which case, you may need a different medication.
    The 'right' medication may not even have 'sleepiness' as a side-effect (or intended effect) - but rather, might be something that re-balances his brain chemistry.

    Sounds like you're working with some decent doctors!
  9. keista

    keista New Member

    Whew! At least the Dr has it in mind, because, honestly? After reading your subsequent posts, it REALLY sounds like that's what it is. There's always discussions of BiPolar (BP) presenting 'differently' in kids, but that does not seem the case here - in my opinion is seems like a classic presentation except for the time requirements. My very first clue was:
    Reading through, this was the first red flag for me. ADHD symptoms don't just go away. In certain situations, they sometimes don't materialize, and then that's when you ask yourself, what was different? How can we apply this to a different situation to make things easier? But just no symptoms? I find it hard to believe if the true diagnosis is ADHD.

    Disclaimer time: I am not a Dr, I do not diagnose. I'm a mom who has been researching BiPolar (BP) and it's spectrum disorders feverishly because my own daughter "seems" to fit, but not really quite 'there'. I keep hunting through resources and looking for more pieces to her puzzle.

    Have you read The Bipolar Child by Ross Green yet? If not, pick up a copy. For me the most useful information was regarding medication. SSRIs as well as most ADHD medications are NOT good for BiPolar (BP) patients. This is another piece for my puzzle. DD1 is 0 for 3 with SSRIs. One was just a bad side effect so she didn't use it long, but two others made her worse - MUCH worse. Although your psychiatrist has BiPolar (BP) on the radar but doesn't want to make it official yet, he can still try medicating appropriately.

    As Insane mentioned, start keeping a log of behaviors. It may start painting a clearer picture of what's going on. Yes, the sleep deprivation is causing problems, but what is causing that sleep deprivation, since most of the time, he appears to be sleeping.
  10. InsaneCdn

    InsaneCdn Well-Known Member

    Keista - it will be a sleep quality issue - as in, whether he's getting enough REM sleep etc.
    Might call for evaluation by a sleep disorders clinic where they can measure this stuff to see how bad it is,
    And then, of course, the $64 question... WHY?
    Because you have to know THAT to fix it.

    But I've seen all sorts of strange and extreme behaviors caused by sleep issues.
  11. SingleADHDparent

    SingleADHDparent New Member

    Yes I got very lucky with the dr we got. My major concern was over-medicating my son. When I voiced my concern I was told that I am the mother and will be in total control over whether or not we continue with a medication. If at any time I don't like the way my son is acting on a medication we will stop it and try something different. I have seen so many children that lose their wonderful qualities once put on medications.
  12. InsaneCdn

    InsaneCdn Well-Known Member

    And I have one who... well, all those wonderful qualities only show up when we get the medications right.

    Its like walking a tight rope!