New diagnosis

Discussion in 'General Parenting' started by tal627, Jul 1, 2011.

  1. tal627

    tal627 New Member

    My son has had health problems since 13 months. He had his first seizure then. He also has asthma, allergies (gets 2 shots once a week), was recently diagnosed with Aspergers and ODD.

    I've known for years that there was something "different" about my son. He is 11. The fits started at about age 8. It was horrifying and psychotic. The fits would last for 45 mins at a time and would just go on and on, fit after fit. Evenings were awful. We videotaped them but nobody wanted to see them. We had a neuropsychologist test done and that dr told me, "There is no miracle drug for your child." With that test done, they found NOTHING. I used to go to bed at night and would ask my husband (who is his stepdad) if I should drown myself or slit my wrists.....

    In April of this year, I think I met an angel. She specializes in behavioral issues. Within 10 minutes of sitting with us, she diagnosed him as Aspergers and ODD. I was in tears....not that that was anything new......I was AMAZED. Everything she said was DEAD on. I got the words I'd been searching for for YEARS!!!

    Although it doesn't make things any better. His dad (we are divorced, divorced when he was 5) blames me for everything. Says he doesn't act that way for him, that it's all me.

    The school doesn't see it and tells me that just because he is diagnosed in a clinical setting, doesn't mean he will be in a school setting.....they won't reevaluate him and say he is "too high functioning" and that he wouldn't qualify for anything more.....

    He saw the new psychiatrist 2 days ago and they added Tramazol (not sure if that's the correct name or not) to help him sleep and for anxiety and depression, to the other drugs (Abilify 5 mg/day and Vyvanse 50 mg/day) and also increased the Abilify to 10 mg and Vyvanse to 60 mg. I am hoping and praying that something helps. Something has got to give. I do not know what to do anymore.

    Mornings usually start with yelling and screaming (psychotically) and crying because he doesn't want to get out of bed. I am so grateful that it is summer and I don't HAVE to deal with it at the moment!!! :)

    Seems as though over the last few months, he has gotten worse. I've seen him start to argue with his dad at my older son's baseball games some and just the other day with my sister. He is also starting to now argue with me publically.

    I just told my husband last week that I hate him.....gosh it's awful. Can't believe I told him that and that I'm now typing it. I told my therapist yesterday (I just recently started to go) that also. She said I'm not the first and certainly not the last to feel that way/say that. It's the first time I've ever said it out loud but not the first time I've felt it. It's not him I hate, it's the behavior.

    My therapist asked me if I'm on any medications, I told her Zoloft but that doesn't seem to do anything. She suggested Lexapro. Do any of you take medications? I go to the psychiatrist on 7/15 so we'll see what he says.

    Do you all experience this? Sorry I just typed and typed.......just typed what came to mind. Thanks!
  2. TerryJ2

    TerryJ2 Well-Known Member

    Welcome Tal627.
    What sort of doctor diagnosis'd your son? Does he go to a public school? Because you should be able to take the dr's report to a mtng between you, the school soc wkr, the assistant principal and several others, and ask for a 504. A 504 will allow the teacher to move his seat right next to hers, send you notes every day about his behavior, check off whether the assignments were turned in, etc. Don't call the same person you spoke to b4.
    Another thing I would mention is that whichever medication works best for your son, give it to him an hr b4 he has to actually get up. For us, it's Adderall, because our son is ADHD. It makes a huge difference. By the time he HAS to get up, dress and eat, he is calm and happy. B4 that, we went through what you are going through. It took us several wks to get the routine down but now it's perfect.
    If the diagnosis for your son was given by a soc wkr, make an appointment with-a neurologist/psychologist and bring copies of the paperwork from the "angel." Keep a journal of his behaviors and what times of day they occur.
    Have you tried dietary changes? Many of us here have our kids on gluten and dairy-free diets. It takes months but it's worth it.
    Also, I would establish a strict routine for your son in regard to bedtime. Sleep is VERY important.
    I would also cut out activities that you know for sure will aggravate him, such as loud restaurants, etc. He gets so agitated and ramped up that he cannot help but explode. Imagine yourself with-PMS, having just been fired, just got in a fight with-your husband, and someone rearended your car. That's what your son feels like if he's got too much stimulation, which may be something "small" like flickering flourescent lights at the mall.
    Best of luck!
  3. TerryJ2

    TerryJ2 Well-Known Member

    Oops, my son no longer takes Adderall, he takes Concerta. FWIW.
  4. TerryJ2

    TerryJ2 Well-Known Member

    Oh, and I would take him to therapy at least every 2 wks, to get his behavior under control. He can mature and learn to control himself. We give our son rewards. Now that he's older, he will accept a sentence, "I'm very proud of you." When he was younger, it was a magazine or a candy bar.
    We have to be careful with-Aspies and rewards because they are so literal, they get stuck on thinking it will be the same reward no matter what.
  5. DDD

    DDD Well-Known Member

    Asperger's is such a tricky diagnosis. There is no "cure" but there are ways to help. It takes alot of patience and preferably a calm demeanor and a calm home and limited outside stimulation. We found that a medication to aid sleep helped difficult child be better prepared for the next day. One of the smartest things I ever figured out, lol, was to take his morning medicine into him when he was still assleep. The pill, a drink, and sometimes a small snack next to his bed did wonders. I had to get up thirty minutes earlier but when it was time to get up his medication was in his system and he rarely gave me any flack. Also for us it really improved mornings when we established a routine for bedtime that included getting his shower and laying out the clothes he wanted to wear the next day. That made a HUGE improvement in the mornings.

    I have had limited experience with allergies and agree that dietary issues should be explored. I'm embarrassed to say that twenty years ago I did not know that secondary smoke could cause so many allergic reactions. We did not smoke in the house or the car except on rare occasions but easy child/difficult child did have frequent ear infections etc. that turned out to be a reaction to secondary smoke. I still can't believe that it never occurred to me! Good luck. DDD