Taking GFG off meds, did I screw up?

[maxeygirls]

GFG 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 GFG from her meds for several reasons; finding out exactly who is under the meds, fears of her being downright drugged (slurred speech, groggy, fighting sleep 24/7, strange outbursts), her pdoc's lack of attention to monitoring the meds (she may go 2 months before checking the blood tests she said were urgent) and the fact that her pdoc 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 GFG in a year.
We got rid of the Abilify first, very slowly (1/2mg change to one dose a day for a week), and GFG'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.
GFG 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 GFG'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 pdoc in town or even in state who will see her until she's 5, I can't stand keeping her on meds 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 GFG doped up to the point that she talks like a drunk and wanders around in a daze all day but PC hasn't gotten 5 minutes of my time in a week and I'm so busy chasing GFG 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!

[smallworld]

Have you considered getting a sleep study for GFG?

[nvts]

Hey Maxey! Wow, sounds like you've got a handful going on right about now. This med 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 pdoc's that would see her.

Are you totally commited that the dx is correct? Have you had a full neuropsych 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!
Beth

[SRL]

We don't advocate doing a med wash without a doctor's guidance. Even if you know the doc will disapprove, it's still your child and you can insist. It's wise to find out what meds 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.

[MidwestMom]

Go to a GP to help reduce meds.
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 NeuroPsych first. IMO 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.

[maxeygirls]

smallworld- I'm looking into one, without the pdoc'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 dx is more wrong than right. There are no other pdocs in town who will treat her and are covered by our insurance. Her pdoc 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 GFG off bit by bit. The pediatrician is on board 100% but doesn't feel comfortable enough with such heavy meds at GFG'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 GFG not sleeping. DH has been gone for military stuff and just experienced his first night with GFG 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 GFG 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 GFG up today instead of letting her crash to see if she'll sleep all night tonight.
At this point, Im really glad DH 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 PC was screaming due to GFG waking her up for a 3rd time (PC sleeps 12-13 hours, wake her up 10 minutes early and she's NOT happy).
I also spoke with DH 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 GFG gets up. It gives me anywhere from 5-7 hours a night.
Right now my biggest fear is running out of coffee...

[smallworld]

I don't think you should see a pdoc. A pdoc 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.

[smallworld]

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?

[maxeygirls]

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 neuropsych 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 meds because they work "sometimes" and even more of them think the problem is parenting, environment or something along those lines.

[maxeygirls]

Great news! GFG'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 GFG will begin evaluations the following week. They told me to CANCEL GFG'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 dx entirely, if it'll be something I haven't done tons of research on, or if she'll need meds again. I'm excited to be making progress but I'm also scared to death.