Taking difficult child off medications, did I screw up?

Discussion in 'General Parenting' started by maxeygirls, Jul 11, 2010.

  1. maxeygirls

    maxeygirls New Member

    difficult child has been on Depakene (500mg/day) since July of last year, risperdal from July until April and Abilify (2mg/day) from April to now... well until a week ago actually.
    I had made the decision to remove difficult child from her medications for several reasons; finding out exactly who is under the medications, fears of her being downright drugged (slurred speech, groggy, fighting sleep 24/7, strange outbursts), her psychiatrist's lack of attention to monitoring the medications (she may go 2 months before checking the blood tests she said were urgent) and the fact that her psychiatrist swears she needs to stay heavily medicated due to family history (paternal grandmother, not even around her) and how she acted a year ago... she hasn't spent more than 5 minutes with difficult child in a year.
    We got rid of the Abilify first, very slowly (1/2mg change to one dose a day for a week), and difficult child's violence vanished, literally vanished. She could actually communicate clearly and focus. She also isn't fighting sleep all day... but now she's fighting to stay awake at night. I just reduced her Depakene to 400mg/day and I'm hesitant to go any further.
    difficult child has been waking up between 3am-5am since we started Abilify but now all of a sudden she's up between 11pm-3am and stays up until 8am! She's also back to her sneaking ways which means even with the baby monitor turned all the way up and right next to me, she can sneak out and get into everything.
    She takes 9mg of melatonin a night and it isn't time release. I've tried giving her another dose around 3am and it does nothing. Im exhausted, only getting an hour of sleep a night if I'm lucky and I feel like I've made a huge mistake.
    Every time I look over my journal of difficult child's behavior and patterns though, and it seems that she struggles the most during the day when she has sleep problems the night before. She is getting into everything 24/7 and is more defiant than ever before. I can turn my back to pour a cup of coffee and she's vaulted over the baby gate into my room, medication/'no-no item' lock box and hammer in hand from the kitchen and I'll catch her trying to break it open.
    I've often wondered if the problem was based mostly on a sleep issue and now I'm sure of it but what do I do?! There is NO other psychiatrist in town or even in state who will see her until she's 5, I can't stand keeping her on medications that aren't helping and I can't go with close to no sleep for the next year or so until she turns 5.
    We're all suffering again. I don't like difficult child doped up to the point that she talks like a drunk and wanders around in a daze all day but easy child hasn't gotten 5 minutes of my time in a week and I'm so busy chasing difficult child and cleaning up her messes that I don't even remember to eat!
    If anyone has any suggestions, I know this is a huge jumble of info with no clear aim, Im exhausted beyond belief and sicker than a dog so I'm sorry. But if you have any suggestions, HELP!
  2. smallworld

    smallworld Moderator

    Have you considered getting a sleep study for difficult child?
  3. nvts

    nvts Active Member

    Hey Maxey! Wow, sounds like you've got a handful going on right about now. This medication wash without a professional helping out (is her pediatrician on-board?) is kind o' scary stuff. I've often thought about it, but always chickened out.

    If you would like, PM me with your city and state and I'll google around and see if I can track down other child psychiatrist's that would see her.

    Are you totally commited that the diagnosis is correct? Have you had a full neuropsychologist done on her? There are a lot of things out there that could either be co-morbid with bi-polar OR show the same symptoms as bi-polar.

    You've got to be exhausted - 1 hour of sleep and another looking for attention.

    Oh, yeah! Have you talked to anyone at NAMI? They're the National Alliance on Mental Illness. They may have resources available to help you out.

    Keep posting! We're here for you!
  4. SRL

    SRL Active Member

    We don't advocate doing a medication wash without a doctor's guidance. Even if you know the doctor will disapprove, it's still your child and you can insist. It's wise to find out what medications need to be tapered, and how much time is recommended to taper them off.

    I'm sure you are exhausted! This is hard to cope with even while rested. Can you adjust your sleep schedule to sleep while she's sleeping? I know you won't be able to get your usual stuff done, but it's critical that you take care of yourself right now. Use paper plates and anything you can think of to make your life easier.
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Go to a GP to help reduce medications.
    The symtoms you are discussing are common with Depakote, especially too much Depakote. My teen daughter was on it and hated it. She said "I'm qutiting. I can't think while I'm on it." She threw it away (she was 19). She was sleeping all the time on Depakote, got cysts (Depakote can cause cysts in females) and was in college and said her memory was gone.

    A GP can help you reduce the medication. You may want to see a neuropsychologist first. in my opinion they diagnose better and they will see very young children and since they do intensive testing, you can get closer to what the real problem is without medication for now. I'm not a huge fan of medicating a very young child too much, since there is rarely a concrete diagnosis. So I think you're doing the right thing, but I'd get a doctor on board. It does NOT have to be a psychiatrist though.
  6. maxeygirls

    maxeygirls New Member

    smallworld- I'm looking into one, without the psychiatrist's help it's hard. Trying to find a developmental pediatrician who is actually covered by our insurance to refer us.
    NVTS- I am convinced the diagnosis is more wrong than right. There are no other psychiatrists in town who will treat her and are covered by our insurance. Her psychiatrist told me to cut her Abilify in half for 5 days, give her 2 days to adjust, cut her Depakene in half for 7 days then stop cold turkey. I was NOT comfortable with such a rapid method and contacted the pharmacist who was able to give me a more gentle schedule, taking difficult child off bit by bit. The pediatrician is on board 100% but doesn't feel comfortable enough with such heavy medications at difficult child's age to handle this herself. I dodnt even know about NAMI, I will look into it later today.
    SRL- Im really trying to take care of myself, it's hard considering I'm sick again with difficult child not sleeping. husband has been gone for military stuff and just experienced his first night with difficult child like this. He's exhausted, short tempered and would pull his hair out if his head wasn't shaved. He now understands why I said he was kind of lucky to be deployed through the worst of this over the last year.
    The biggest thing that stands out in my mind through all of this is that difficult child continued to have these issues even while medicated. With Depakene and Risperdal she was drugged, dazed, slurring, sleeping 24/7, with a slight change in the Risperdal she was bouncing off the walls. With Depakene alone she was semi-stable but unable to sleep well and with Abilify added it was as if a calm child was fighting a demon and it was anyone's guess who would win that day. The violence I saw last year as well as on the Abilify is now gone after over a week of having no Abilify, which is great. Im really considering trying to keep difficult child up today instead of letting her crash to see if she'll sleep all night tonight.
    At this point, Im really glad husband and I have had so many struggles in our marriage because we're able to bond together right now, minus a few sleepy jabs at each other around 4am while easy child was screaming due to difficult child waking her up for a 3rd time (easy child sleeps 12-13 hours, wake her up 10 minutes early and she's NOT happy).
    I also spoke with husband about working out a sleep schedule for us. He's home at 3-3:30 and I figure if I go to sleep immediately, he can handle dinner and bed times, go to sleep when the girls do and I'll wake up a few hours after that when difficult child gets up. It gives me anywhere from 5-7 hours a night.
    Right now my biggest fear is running out of coffee...
  7. smallworld

    smallworld Moderator

    I don't think you should see a psychiatrist. A psychiatrist will likely want to medicate, and I'm not sure that's what you need right now. You need, above all, to know what's going on with your daughter.

    Do you have a children's or university teaching hospital near you (or within driving distance)? If so, you need to find a neuropsychologist to evaluate her. If not, you might want to call the local chapter of your Autism Society (www.autism-society.org) or NAMI (www.nami.org) to find out who the best evaluators are in your area. Without knowing what is driving her behaviors, you won't know what interventions to put into place.

    In the meantime, have you considered asking the pediatrician about using Benadryl to get your daughter to sleep at night? Some kids have a paradoxical reaction so if you go this route, you need to test it out cautiously, but it might be a way to buy you a full night's worth of sleep until you can figure out what's going on with your daughter.

    Hang in there and keep posting. We're here for you.
  8. smallworld

    smallworld Moderator

    One more thought:
    Has she had full blood work to rule out physical causes, such as thyroid, strep titers, Lyme Disease, all of which can affect mood and anxiety?
    Has she had a neurological evaluation (EEG and MRI) to rule out seizures?
  9. maxeygirls

    maxeygirls New Member

    I wish benadryl worked for her! She takes up to 9mg of melatonin and that works for 4 hours... sometimes. Giving her benadryl is as effective as giving her a tic tac :(
    I'm going to call my mental health advisor with our insurance and find a neuropsychologist today.
    It's so wonderful to have somewhere to turn where other parents understand! People I know who only have PCs think Im nuts for removing her from her medications because they work "sometimes" and even more of them think the problem is parenting, environment or something along those lines.
  10. maxeygirls

    maxeygirls New Member

    Great news! difficult child's mental health advisor through our insurance company was able to quickly find a psychologist who only does evaluations and a developmental pediatrician. I have a parent-only meeting with the psychologist next week and difficult child will begin evaluations the following week. They told me to CANCEL difficult child's next appointment with her psychiatrist. The pediatrician has asked for me to send the results from the evaluation as soon as I get them and we'll go from there.
    The unrealistic, hopeful part of me wants to get a paper back from the psychologist that reads "Your child has no mood disorder or other conduct disorder. Your daughter's problem is all because of your parenting, fix this, do that, talk to her in this way and the problem will vanish." But I know better and now I'm wondering if they'll change her diagnosis entirely, if it'll be something I haven't done tons of research on, or if she'll need medications again. I'm excited to be making progress but I'm also scared to death.
  11. tiredmommy

    tiredmommy Site Moderator

    Congrats on the referral! My Duckie was briefly rx'd Atarax at age 3 due to her lack of sleep. It worked beautifully for a few weeks, then she built up a tolerance and had some side effects (namely, sneaking around at night and hoarding items in her room). Has she been to an ENT? Sometimes enlarged adenoids and/or tonsils drive a child's sleep problems. Duckie's primary sleep problem turned out to be undx'd allergies and cough variant asthma. We've really seen a remarkable turn-around in her behavior as these conditions have been effectively treated.
  12. maxeygirls

    maxeygirls New Member

    She was examined for any physical issues at UCLA Resnick, including an ENT and they found nothing. I'm open to repeating everything though, you never know if something was missed!
  13. SRL

    SRL Active Member

    That's great news. Push for the most comprehensive evaluation you can get.