our story in a nutshell

Discussion in 'General Parenting' started by jenndyson, Mar 17, 2010.

  1. jenndyson

    jenndyson New Member

    I've just joined this group and am thrilled to find others going through many of the same things our family has. As an introduction, I'd like to give a brief recount of our son's life thus far.
    "E" as we call him is now 5 years old. He was difficult from birth....developmentally delayed, fussy, etc. At 3 months old we found that he had a massive hole in his heart and suffered from tachycardia. Right before his 3rd birthday, the hole was repaired via open heart surgery and the tachycardia melted away on its own. One would think that would be enough but then the behavior problems only worsened with age.
    Every visit to the pediatrician I would proclaim that something just wasn't right....he's too aggressive, too demanding only to be placated with "he's a boy and very young. he'll grow out of it". But as the years went by and schools asked him to leave I knew it was much more. So I jumped over the pediatrician and took him to a psychiatrist last fall. After many hours of testing, we were given a diagnosis of extreme ADHD, ODD and bipolar with a possibility of Aspergers in January. According to the psychologist who did the evaluations, E is so young and developmentally delayed that the bipolar or Aspergers are hard to pinpoint. So he went with a bipolar diagnosis because E exhibited many more of those symptoms than the Aspergers. E is very demanding, attention seeking, defiant, aggressive, unfocused....ADHD and ODD. One minute, hour, day or even week he is happy and loving but that is subject to change with no triggers that we have yet to find, aggressive towards animals, exhibits hypersexuality on occasion....bipolar. He also hates tags, is particular about placement of things (sometimes), loathes extremely loud noises and is a whiz at puzzles and on the computer....Aspergers.
    His current medications include Concerta and guanfacine. The Concerta is doing a great job of keeping him focused but the guanfacine seems to be wearing off and the aggression is coming back tenfold. We have an appointment next week with the psychiatrist and I hope we will be changing off of that one on to something new. I really hate having to medicate him since he was medicated for so long for the heart conditions but the medications truly have helped. And after trying everything to avoid medications to no avail I've concluded that sometimes you just gotta do what you gotta do.
    We battled the school system (big time) and he is now in a special needs class with one of the most amazing teachers ever. She truly was my Christmas gift this past year and I tell her so constantly. E's reading and writing have improved dramatically during the past few months and under her supervision he is functioning in a regular classroom for short periods of time.
    And though things have been going great the past few months, he seems to have "flipped" again. He is extremely defiant towards just about anything I say, attacks his 8 year old sister whenever she crosses his path and has begun hitting and pinching us again. We met with a psychotherapist last week and have another appointment next week so that's getting started but in the meantime I feel as though I'm losing ground quickly. How can things go so well only to fall completely back into disarray so fast? Bipolar is my only answer because all my reading shows ODD being more consistent.
    Anyway. That's our story in a large nutshell. ;) I have many questions and look forward to hearing from and reading the stories of others dealing with similar issues.
  2. smallworld

    smallworld Moderator

    With all due respect to the psychiatrist treating your son, he's giving E the wrong medications if he truly thinks he has bipolar disorder. Mood symptoms need to be treated first and foremost. In general, kids with bipolar disorder need a first-line mood stabilizer (Depakote, Lithium, Lamictal, Trileptal, Tegretol) plus an atypical antipsychotic (Risperdal, Seroquel, Zyprexa, Abilify, Geodon, Invega) to achieve stability. Stimulants like Concerta and SSRI antidepressants tend to destabilize kids with BiPolar (BP).

    Here's a link to the Treatment Guidelines on the Child and Adolescent Bipolar Foundation website:

    These guidelines, based on medical literature and formulated by a consensus conference of child and adolescent psychiatrists, provide step-by-step strategies for the treatment of depression and mania in young patients. Some parents find it helpful to print the document out and bring it to appointments with their children's psychiatrists.

    Welcome to our corner of cyberspace. I hope you find a lot of information and support here.
  3. Shari

    Shari IsItFridayYet?

  4. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Welcome to the board. Im also from NC. If you dont mind sharing, which quadrant of the state are you in? One of the bigger areas or one of our littler rural areas? I hope you are in a bigger place so you have more access to mental health care.

    I also agree with Smallworld that if they think bipolar he needs to be on a mood stabilizer. That should help more first. Then tease everything else out. We also have a pretty good autism program called TEACCH I think. Or something like that. I may have the wrong double letters. I think it is out of either Chapel Hill or Fayetteville. I live near Fayetteville and know a pretty good psychiatrist.
  5. KTMom91

    KTMom91 Well-Known Member

    Adding my welcome!
  6. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Adding in my welcome, glad you found us but sorry you needed to. You will find much support here!
  7. jenndyson

    jenndyson New Member

    We went the mood stabilizer route first with Depakote and there were no changes at all. There are several levels of bipolar, some responding adversely with ADHD stimulants while other levels respond well. Trying him on the Concerta was kind of an experiment to see how he would react since he's too young to pinpoint a bipolar level. As you may know, if you have a certain level of bipolar, stimulants will cause a psychotic episode....fortunately he didn't go psychotic. In fact, the Concerta has helped him enough that he can actually sit at a computer and play/learn, happily do his homework, and play Wii whereas before he couldn't even slow down enough to even attempt such things. In all honesty, I would not be surprised that if in a couple of years with some maturing, the bipolar diagnosis leaves us being replaced with Aspergers. With E being only 5 and extremely immature, psychiatric evaluations are difficult and not completely conclusive. I definitely agree with the ADHD and ODD...the ODD being the most troublesome. And that's why I'm here....support for those days when I just don't think I can take it anymore.
    Janet....love the Rocky Horror reference! One of my fave cult movies! I am in Greenville so not that far from you. We have a TEEACH center here but without the official aspergers diagnosis it's not an option right now, although it can be easily obtained. Again, he presents with more bipolar symptoms than Aspergers and that is why the Aspergers was not included in his diagnosis. My mommy instinct tells me that as years go by we may find the Aspergers to be more prevalent. Right now, it's the ODD that's kicking my butt. Since we've just started this journey we're still in the retraining of our parenting selves. In fact, just this morning E tried to rile me up which in turned would usually rile my husband up. I kept my cool, repeated my request then pulled the hubby aside to inform him that E is only trying to pit us against each other and we shall not let that happen. And you know what, it felt good. Good to know that regaining some control is still possible.
  8. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Nice knowing someone else so close! I will write more later. I have a huge day today and wont be one much. This is my busiest day of the week. Therapy, then group and then my son and daughter in law are arriving tonite. I might be able to sneak on sometime. If not, I will definitely be on tomorrow.

    More then!
  9. TerryJ2

    TerryJ2 Well-Known Member

    Hi, welcome!
    Gosh, I can see how he would have both dxes. Sigh.
    We've only used a few medications so I'm not good with-advice on that, but it sounds like you're going through the right steps. Bravo for a fantastic teacher!
    Stop by any time to vent. You're in good company. :)
  10. tictoc

    tictoc New Member

    Your son sounds so much like my difficult child! My son doesn't have an official autism spectrum diagnosis, but that is in the back of everyone's minds (and he receives sp ed services through the autism inclusion program at his school). We have had a lot of ups and downs, but he is now doing well on a combination of Trileptal, clonidine, and imipramine. Next month we might lower the clonidine dose and add guanfacine in hopes of getting better control of the ADHD symptoms and reduction in tics.

    Good luck.