Discussion in 'Special Ed 101' started by PiscesMom, Aug 3, 2017.

  1. PiscesMom

    PiscesMom Active Member

    Hi. Ok, this post is about my youngest daughter, who is a sweetheart. (Yay!) She is extremely anxious, probably agoraphobic, she has autism, upper average intelligence, and just holes up in her room. Her old psychiatrist wouldn't prescribe anything but Prozac, even tho she was not functional, and barely ever went to school.
    We just saw a new psychiatrist today - it took ALL of her strength to get out of the car, even to the point of having trouble breathing.
    He prescribed Prozac, the same dosage, plus .5 mg of Risperdal.
    What can I do? I want her to go to the special therapy school her district put her in. I want her to have some teen years, somewhat of a life. She will even learn how to care for horses at this place!!! <3
    Is this a dangerous medication?
    I am panicking. (of course, thats what i do)
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  2. ForeverSpring

    ForeverSpring Well-Known Member

    It made my autistic son sleep all the time, cry a lot, gain 20 pounds in a month and he started twitching. Didnt help him at all.

    At this point, my almost 24 year old son is independent. He hates all medication.

    But he was able to do school...even so, for us Risperdal was a nightmare. Zyprexa was just as bad. No medications ever helped him
    Autitistic interventions helped him the most.

    Hope your daughter has a better experience.
  3. PiscesMom

    PiscesMom Active Member

    I hope so too. I guess I will monitor closely. I am worried, it seems like a very serious drug.
  4. ForeverSpring

    ForeverSpring Well-Known Member

    It is. Go9d luck. Watch her for tics and automatic movements and rush her back to doctor if that happens. It can be permanent if you dont address it
  5. PiscesMom

    PiscesMom Active Member

    ok. omg.
  6. slsh

    slsh member since 1999

    PiscesMom - medication management is an art, not a science. It involves a lot of trial and error because when it comes to psychiatric medications, it's impossible to predict how *your* daughter will react to the medication. It can be different for everyone. Absolutely, a lot of the medications our kids are on (or maybe *all* of them) have the potential for scary side effects. For example, Prozac (and virtually every other antidepressant) has a black box warning about use in peds patients.

    My son *became* psychotic on an antipsychotic (Seroquel). Zyprexa did nothing. Ritalin caused extremely violent outbursts. Lithium fried his thyroid. Depakote eventually caused hyperammonemia (after over a decade on the drug). Not expected reactions, but not unheard of. The very best thing you can do for your daughter is educate yourself not only about possible side effects, but also if routine lab tests should be done and potential medication interactions, be alert and aware of your daughter's response (if any) when a new medication is added, and have a good line of communication with psychiatrist. You can ask psychiatrist and pharmacist about side effects/labs/interations, but I'd also recommend triple checking them yourself. rxlist.com and drugs.com were two very reliable sites I depended on.

    On the plus side, she is starting at a very low dose of Risperdal. My son maxed out at 8 mg a day (at age 9). At that point, he did start showing neuro side effects and we had to stop it (although he was on it at a lower dose later in his teen years). His side effects resolved. He had been on it for almost 3 years and, for us, it was a miracle drug. He did gain weight on the medication from the start, but it was not something that interfered with his quality of life or ability to participate in activities. He went from a very thin kid to one with a pretty solid physique.

    Unfortunately, it sometimes comes down to do the potential benefits outweigh the potential risks. Is the possibility of it improving her ability to function in her daily life worth the chance of a side effect? That's a pretty weighty decision to have to make for your child, and it's an individual one.

    For every horror story about a drug, there's a success story - and vice-versa.
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  7. seek

    seek Member

    Hi there PM: If you are looking for anecdotes, my elderly mother was put on that drug. It is a MAJOR drug . . . my mom was put on it to tame her down because she was acting out in her Alzheimer's!

    I read later (after she passed), that doctors were prescribing that drug to the elderly in error (it wasn't' intended for that population or to control behavior in that way - can't recall details) and that it can cause death (again, can't recall details of what it actually does ). . . I hope you can research it and get some expert advice. I
  8. PiscesMom

    PiscesMom Active Member

    thank you! it is so hard. to have to make choices that are impossible to make. i will just be very careful - do everything you say. insist on lab tests, watch her carefully.
  9. PiscesMom

    PiscesMom Active Member

    yes - i will!! thanks! i tend to research like crazy.
  10. ForeverSpring

    ForeverSpring Well-Known Member

    As far as I know they dont lab test Risperdal.

    In case you werent told, Risperdal is an antipsychotic used off label for other things. It doesnt hurt to try if you watch very closely. VERY closely. Be a proactive mom. If your psychiatrist was not upfront about this being an antipsychotic and warning you about the possibility of movement disorders, is he or she the type of doctor who respects you as intelligent and is open with you? I would demand openness or find another psychiatrist to do the prescribing. These are serious drugs. I am guessing they are a step more serious than antidepressants, but not sure. Know everything before you give a medication to a child. Educate yourself.

    Good luck!
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  11. slsh

    slsh member since 1999

    Actually, for some reason I was thinking my son had his cholesterol levels checked on a regular basis on risperdal, but .... how random is that??? So I looked up the insert for risperdal and, yes, lipid abnormalities are possible. (I can remember lab work my son had 15 years ago, but I can't remember what we had for dinner last night, LOL.) He was usually on 2 or 3 medications at any given time and got blood work done every 3 months, and I always made sure a comprehensive metabolic panel and a CBC were included. Like you, I was very hesitant about medications and worried about putting all those chemicals in his growing body and what effects they would have. For our family though, all other interventions had failed spectacularly and he was becoming more and more dysfunctional (and dangerous). Very difficult decision for me to make - the lesser of 2 evils, essentially.

    While I was researching, I found that risperdal is FDA approved for schizophrenia (adult and adolescent), bipolar disorder (adults and children/adolescents), and autism spectrum disorders (pediatric). It is used off-label for a whole host of other things. There is a black box warning about using it in elderly patients with dementia-related psychosis. FWIW.

    You're obviously a well-informed mom and very thoughtful about the choices you make for your daughter. Whatever choice you make, it will be the right one for you guys. Sometimes it felt like I was being asked to make choices that were waaaay above my pay grade - when in doubt, I absolutely believe in following your gut.

    Good luck.
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    Last edited: Aug 4, 2017
  12. PiscesMom

    PiscesMom Active Member

    We didn't talk much to the psychiatrist. I didn't want to drag things out, as she was panicking.
    SOT, do you think I should not give her Risperdal? Or just to be super careful?
    In the state she is in now, I don't see her going to school. We have home services, but we just talk, and they help me with things. She does not come out of her room.
  13. PiscesMom

    PiscesMom Active Member

    I didn't want to ask questions because my daughter was with me, and I wanted to get her home quickly. It was a struggle just to get her out of the car.
  14. ForeverSpring

    ForeverSpring Well-Known Member

    I cant advise, Pisces. I dont know. Just be aware if you decide to try that evrn low doses CAN cause serious side effects and that automatic movements, if they happen, can become permanant. I have tried many yukko medications myself and many made me feel worse. Lithium dragged me so far down that I barely could function and it made me suicidal. And thats Lithium. I loathe mood stsbilizers. Literally they space me out and flatten my emotions. I probably dont need them...I do not have bipolar 1. But if I had to take them, I dont know if I would anyway. These medications arr not pleasant.

    Adults know when they feel badly and can choose to discontinue medications and talk about options to psychiatrists. But children dont have that power. I think we put our kids on incredibly high level medications too often. Other countries do not do this, I believe.

    Many people who quit taking their medications feel worse on them. I have been there. Many are not being defiant...they cant stand how medications make them feel.

    For my own self, with my experiences with myself and Sonic, I would not medicate an autistic child unless the child was hurting himself and others. I prefer autism interventions. Occupational Therspy, Physical Therspy, academic supervision and social skills classes helped my son. medications made him go backwards.

    Remember, I am no expert. I am just a mom.
    Last edited: Aug 4, 2017
  15. PiscesMom

    PiscesMom Active Member

    yes, so then if she won't do that - cannot do that - what then? thanks for your advice - i really appreciate it.
    i mean, the next step would be residential. i think? we have (they are interrupted right now) home services, but she wouldnt leave her room.
  16. KTMom91

    KTMom91 Well-Known Member

    Miss KT took Risperdal for several years, during high school IIRC, along with Ritalin? Concerta? after the Strattera experiment when she was in junior high. I don't remember any side effects or miraculous cures, but she did stop punching holes in the walls while taking Risperdal.
  17. ForeverSpring

    ForeverSpring Well-Known Member

    What about autism interventions? I dont see how behavioral health facilities help auristics. They are neurologucakly different, not mentally ill. Do you have an autism society near you to help guide you? I know some professionals work specifically with autism...those are the people I would want helping...
  18. PiscesMom

    PiscesMom Active Member

    SOT - I will look into that. She also should qualify for Regional Centers, when her teacher is back from break, I will have her write a letter. And I have tons of psychiatric reports, IEPS... And, no, she is not mentally ill. Well, except for the anxiety. She's a great girl, talented, smart, kind..(ok mom will stop there). You never know who they will accept, but I think its a strong maybe.
    KT, yeah... she is not punching holes in walls. When I do internet searches, people say things like Now my child w autism isn't violent, and she would never ever be violent.

    I realized I don't have to decide right now. No rush.

    Thanks so much everyone for writing here. I don't know what I would do without this group.
  19. ForeverSpring

    ForeverSpring Well-Known Member

    Anxirty is part of autism. You cant be autistic without anxiety. My son has gotten so much better. I hope your daughter will too.
  20. JRC

    JRC Active Member

    Hi PM.

    My son has a lot of experience with Risperadol. He's been taking it for 18 months.

    He started a an incredibly low does in the micrograms. He's gradually worked his way up to 1mg with a PRN (taken as needed) up to 1.5 mg.

    It's not clear to me why your daughter was prescribed this drug. Is she psychotic? Is she manic? Is her mood severely dsyregulated? All of those would be reasons to be on Risperdal.

    This drug does have side effects. Some have mentioned weight gain. That is very true. Cognitive dulling is another side effect. Long term impacts on the brain? I personally don't know. But when my pediatrician found out that my son was on it she said "you would not be a bad mother if you took him off that medication." What she didn't know and what we didn't accept at the time was that my son is bipolar and actually needs this drug right now. But that is an aside from your issue.

    If I were you I would find out specifically why this drug is being prescribed. I'm only reading anxiety as a mood disorder with your daughter. Not psychosis. Also understand, my son is also not a behavior problem. At all. The risperdal is to keep the hypomania/mixed states in check.

    I think riserdal has a short half life. So in the short term, please don't be concerned. But, you do need to find out the specific indications that risperdal is achieving in your daughter.

    big hugs