Side Affects from AP's that didn't go away???

Discussion in 'General Parenting' started by totoro, Apr 7, 2008.

  1. totoro

    totoro Mom? What's a GFG?

    I have a question? Well K started Risperdal in 12/06 a low dose... the dose was .50mg starting, she went up to 1mg. It was Difficult Child'd on 3/7/07 due to: tongue thrust, drooling, movements-abnormal to her regular ones. Increased agitation. Overall just bad side affects... oh and the weight gain.

    So then 3/8/07 we started Abilify, 2mg... she has been up to 10mg. 10/31/07 we Difficult Child'd abilify and she has been off of all medications since, February- which was just a small amount of Lamictal. Titrated down very slowly.

    So on Abilify she continued to have movements and tongue thrust... with finger movements, foot movements... lots of tics. Impulsive very non-stop things. Like she can't stop... not so much Tourettes like, with the jerking. But more like impulsive, like she NEEDS to do these things now.
    It is irritating for her body not to, like a finger nail bitter...

    So on the one side affect guideline, and of course psychiatrist3 said No way was any of this caused by medications... But psychiatrist1 was the one who wanted her on Cogentin RIGHT AWAY... Because psychiatrist1 said it was the Risperdal...

    But it says this for Risperdal:• Increased risk of extrapyramidal symptoms with dosages above 6 mg/d.

    And this for Abilify: akathisia (10 %). EPS all types 6%,

    By the way here is the link for my Bible to AP's... she has done studies on most of the medications...

    My question is, K still has a lot of the side affects!!! She did not have these prior to starting the AP's... 2 psychiatrist's have said NO, could not have been, she was not on them long enough or high enough doses!
    But I am thinking, how do they know??? Have they tested them on every child? What if K is one of the kids that was affected by a low dose? AND is suffering from permanent side affects??? She still has tongue thrust and she still has movements/tics.
    Could the AP's have triggered something? Or could this all be COINCIDENCE? Her issues were getting worse at the same time she happened to be starting AP's???

    Then what do we do about future medications??? What do we do if another psychiatrist wants her on an AP??? How do I sit there and argue this one if they say, "well the evidence says this" or some other lame excuse? They all say, well these things will stop when she stops the medications... When?
    Has anyone else seen this and what did you do??? Should I just steer clear of AP's?
    I feel like we should.
    Thanks... it is just getting close to our new apt and I am trying to get ready, again.
  2. smallworld

    smallworld Moderator

    T, my son had a very bad reaction (dystonia and akathisia) to Risperdal. His symptoms did subside after being off Risperdal for about a month, but the severity of his reaction spooked us so much that we didn't try another AP for 2 years. Of course, Seroquel has worked beautifully with no side effects whatsoever. But it doesn't always work out that way.

    I'd recommend a neuro consult before putting K on any new medications. Neuros know much more about these movement disorders than psychiatrists do. When you go for the appointment with psychiatrist5, ask him for a referral to a neuro and make an appointment ASAP. That way you won't be second-guessing what medications K should trial next.

    Good luck. We're all rooting for you.
  3. gcvmom

    gcvmom Here we go again!

    My understanding of tardive dyskinesia is that it can sometimes be permanent... I think most drug-induced dystonias are temporary though.

    I would definitely consult a pediatric neurologist on this one.

    difficult child 2 just had a dystonic reaction to Zyprexa about a week ago. But his main symptoms went away after about a day or two off the offending drug.

    Hope her symptoms improve!
  4. totoro

    totoro Mom? What's a GFG?

    Smallworld you are right... I am just so mad that we have asked so many times... and it is just like the blood work ups, or the allergy checks, "Oh she doesn't need that"
    Well I think she does... even husband does now. My Grandma died from a Brain Tumor, and said to husband tonight, "What if anything was going on that we could see? or anything that was or could be explained by a nuero? that could help her?"
    Even if it is on top of her Early Onset Bi-Polar (EOBP)...
    Thanks ladies... I will research Pediatric Neurologists in Tucson and ask for a Referral!
  5. totoro

    totoro Mom? What's a GFG?

    I have found a list of Neuros!!! I bookmarked them and even if I can not get a referral I will call and set up our own apt... I am tired of this. The one that looks good specializes in Movement Disorders!!! I actually found 2 that specialize in Movement Disorders, not just Epilepsy.
  6. SRL

    SRL Active Member

    Have you checked into PANDAS? I have a nephew who turned out to have Tourette's symptoms, but whose symptoms went from barely noticable to greatly exacerbated during treatment for a strep infection. He looks more typical Tourette's Syndrome now but at the time it more closely resembled PANDAS.
  7. Wiped Out

    Wiped Out Well-Known Member Staff Member

    My difficult child also suffered from Tardive Dyskensia when put on Abilify. It started within two days of being on the medication because he had him on too much. For him it wasn't permanent-lasted a couple of weeks. My difficult child is not on any of the common APs now but an older one. He has been on it for two and a half years and hasn't had any return of the TD. so far.
  8. smallworld

    smallworld Moderator

    T, make sure you take K to a pediatric neurologist. A neuro will also be able to evaluate for PANDAs and tic disorders that are not related to medication-induced dystonia. My son has a tic disorder on top of BiPolar (BP).
  9. totoro

    totoro Mom? What's a GFG?

    In will look into all of that.. thanks so much. K has never had Strep. at least Strep. that needed to treated. She has never had the spots on her throat... she has been sick infrequently in her life. Just colds.
    The only major thing she ever had was 2 Urinary Tract Infection (UTI)'s when was 18mos and 4yo... and we had every test done for those.
    I will still ask about PANDAS though just in case she had mild Strep???
    I have had strep 2x's since being older and I knew it!!!