She is driving us nuts...

totoro

Mom? What's a difficult child?
difficult child has reached her therapeutic level of Trileptal... 600mg total a day. She is down to
.25mg Risperdal bid. She is NON-STOP all day, hyper, oppositional, anxious, defiant, labile, clingy, fidgety, insecure, unable to focus, she is cycling up and down all day... very negative and she said today that she is having a hard time listening because of the tea party in her head, they make it hard to hear... all that blah blah blah... She also told me yesterday that the fairies were talking to her. So I don't know if the auditory hallucinations ever left? or if they are back???

Her violence is still down... but she is unable to keep her hands to herself or listen.

husband said last night I really don't like manic Kiki... (half joking)

I know it has only been a week and a half... but when is the earliest/ latest anyone has seen ANY effect from this stuff????

We are going to the new psychiatrist on Monday?!?!?!?!!? Scary.... So of course we will be discussing this... just curious all your opinion.
Thanks
 

TerryJ2

Well-Known Member
Oh, dear, fairies in her head? At least she's verbal about it. Poor thing! (Poor you!!!!) I wish I had some advice but not knowing what she was like b4, I don't know what to say. It does sound like the medications are way high... all I know it's that trileptal is an anti-seizure medication.
Is she on anything for her hyperactivity?

And you have to wait until Monday? I can only offer cyberhugs. {{{ }}}
 

Steely

Active Member
Trileptal made my son manic, over the top, like I had never seen him. It was the scariest week of my life. He smashed our car windows out, smashed the house up, he was over the top, in my opinion almost psychotic, and consequently spent 3 weeks in the hospital trying to get stable. It was horrible!!!!!!!!!!!!
Obviously I pulled the Trileptal immediately, and never waited to see if something would kick in. The psychiatrist said "I have never heard of this happening with Trileptal", but I have heard other similiar stories. You just never know with these medications, they can have opposite effects than what they are intended for. In my opinion, if she is worse on the medication, I would stop it....but that is just my two cents.
Good luck!
 

totoro

Mom? What's a difficult child?
It is so hard to say... She was so bad before we medicated her... wanting to die, voices, SO violent, we were restraining her sometimes 2 times a day... She was manic and having psycholtic episodes... with just Risperdal... the violence decreased... but the depression got worse, and then she started getting worse again.... just like before but without the extreme violence.

So now she is back to like before, but a bit more heightened... like every emotion is kicked up a notch... so much more quick to react but without such violence.
Her pediatrician. of course says give it some time....

hmmm....

I hate having to decipher all of this and try to push for her.... I am going to be really p'd off if this psychiatrist acts like we are over reacting... not necesarily about the Trileptal but about everything... She is the only one left here taking new patients... I need to like her!!!
 

pepperidge

New Member
Sounds a bit like my youngest son, minus the tea party. I get so worn out by all the emotional reactivity of it all.

We found that Abilify really helped the impulsiveness which was over the top. He can't do stimulants (unlike my other son whom they work miracles on.) So it might be worth reading up on that one before you see psychiatrist on Monday.

I would think that with existing diagnosis etc she will take you seriously.

We have found it useful to boil everything down into about two easy to read pages. Symptoms, medications tried so far, doctors consulted with diagnosis, Occupational Therapist (OT). just put it on paper with the dates etc. makes it easier when you go to see new psychiatrist.

I guess the question is what experience your new psychiatrist has with Early Onset Bi-Polar (EOBP). You might ask how frequently the psychiatrist sees it, what medications they tend to start with, whether she thinks your daughter's case is severe enough that she needs to go to a special mood disorders clinic, anything that will give you some sense of where she is coming from.

Good luck. we just started my youngest on Trileptal last week. Started at 150 at night, now adding in another 150 in the morning. So far nothing bad, but nothing good yet either...

Let us know what the psychiatrist says.
 

totoro

Mom? What's a difficult child?
Thanks Pepperidge-
We started at "the" mood disorder clinic in Chicago, with one of the top psychiatrist's in the country, who feels difficult child is pretty severe, but needs someone local to follow her...
Yeah we have the parent report and the video...
This our 6th evaluation... by various people, we are starting to get it down... slowly!!!

I have looked into Abilify, have heard good and bad. I am glad difficult child 2 is doing well on it. We are going to ask about it.

Thanks
 

Sara PA

New Member
I have heard a lot of parents say that everytime they increased the dose of Trileptal, things were actually worse for a week or so, then things settled down.

by the way, 600 mg of Trileptal is the initial target dose for children under 44 pounds. The therapeutic range is 600-900 for that weight. For 55 pound kids, the range is 900-1200 mg/day. Trileptal is one of those drugs that children often pee out faster than adults do.
 

jannie

trying to survive....
I'm sorry things are going a bit crazy in your household. I want to warn you, however that it often takes 6-8 weeks until you see a benefit with any mood stabilizer. How long has she been on it? My child did not settle down until at least 8 weeks. I'm hoping things will get better. Hopefully your doctor will provide you with more information.

I will tell you that I never thought my child would succeed--I was so worried--However, now in first grade things are definately better--

Fingers crossed for your little one-
 

totoro

Mom? What's a difficult child?
I know it takes weeks to get to the target for the mood stabilizers... I was just wondering if you are supposed to see ANY improvement??? It has been a week and a half... she just hit her target dose. She is 51 pounds by the way... chicago, psychiatrist decided the doseage. (start low and go slow).

I am just anxious.... letting it out to you guy's...
thanks...
 

smallworld

Moderator
T, your difficult child could be worse right now for 3 reasons: 1) therapeutic dose for Trileptal is judged on clinical response, and she may not actually be at a therapeutic dose (even though the psychiatrist told you 600 mg is a therapeutic dose); 2) 1.5 weeks on a mood stabilizer is not enough to judge its effectiveness because it does take 6 to 8 weeks for mood stabilizers to kick in fully; and 3) you lowered Risperdal, and her worsening behavior now could be the result of that, not a result of Trileptal's ineffectiveness. I'm not saying you should increase Risperdal, because your difficult child had bad side effects, but it's pretty certain she's going to need an antipsychotic (because of her auditory hallucinations) in addition to a mood stabilizer. I'm not trying to be discouraging, but the medication roller coaster can take you on a wild ride until you get the kinks worked out. It has taken more than a year for both my difficult children to gain some sense of stability, and believe it or not, we're still tweaking doses for maximum benefit.

I'm truly hoping you like the new psychiatrist on Monday. Please keep us posted.
 

Wiped Out

Well-Known Member
Staff member
Totoro,
I'm sorry things are so rough right now. Sending hugs and prayers your way. I hope the psychiatrist appointment. goes well on Monday.
 

totoro

Mom? What's a difficult child?
Smallworld- I was kind of thinking those things also... I do believe she needs an AP and agree we most likely can't change the Risperdal for a bit nor should we increase it. I just keep hoping to see a little improvement... And I hate to watch her with all this chaos going on inside her.

And the flu is still here at my house!!! Poor husband and easy child...
 

pepperidge

New Member
Totoro

I was trying to think if I had any hot tips for coping with all the "drama" of it all. It is so, so exhausting, and all the more so because of your daughter's young age. No no hot tips, just try not to react to it all. I'm still looking for the hot tips!

I guess you have heard a million times now that you need to take whatever small breaks you can. Easier said than done with two small ones that need constant supervision.

I hope you find something that works quick. We took a few years to get my son the right medication combo, and still haven't yet for my youngest.

Sometimes I think I just can't go on with all the yelling, crying etc. But we do. It does take a toll. Do whatever it takes to get a break, and try to keep some adult type outlet (hobby, sport, whatever).

I think you have a legitimate question in how long until you see some benefit. I would think that since you are probably close to the therapeutic dose, that you should see some positive benefit pretty soon. Perhaps not the full benefit, but something to indicate that it is worth continuing. Sounds like you did with Risperdal. Let us know what the new psychiatrist thinks.

Hugs from further to the west of you...
 

smallworld

Moderator
Actually, the new psychiatrist may change to a new AP because it sounds as if your difficult child can't go high enough on the Risperdal to control her hallucinations without experiencing bad side effects. The goal of APs is to completely eliminate the hallucinations.
 

Janna

New Member
T,

I didn't read all the responses, so I apologize.

Dylan trialed Trileptal, but we never got it to anything theraputic. It didn't do anything for him, I guess he was on it about 2 weeks, he was probably around 4/5 years old - just wasn't the one for him.

BUT - again, I want to remind you of the awful reactions he had to the Risperdal. Talking to the walls, barking like a dog in class, increased mania, talking non stop - he really reacted bad.

Just a thought. I know you were having problems pre-Trileptal, too - so, I wouldn't assume it's that.

Janna
 

timer lady

Queen of Hearts
Another thought....

Your little one is in such a period of growth. difficult child's very young - the diagnosis might change time & again. Along with that the medications.

I remember that medications for tweedles dee & dum at ages 5 through 7 were never very successful. The diagnosis's kept changing & have until they hit 9 or 10.

Can your difficult child self calm in anyway? Does television (not the parenting norm, but our children force us to do things differently), help the situation? Video games?

How about a favorite blanket - will difficult child wrap up in a favorite blanket or quilt?

Is your yard fenced? Can you let difficult child outside to play with-o total supervision? If so, husband & I assigned kt, wm & the dog a digging hole in the yard. (The sandbox wasn't enough) I let them dig for hours in their spot - they always had to fill the hole back in & put their tools away.

A long bath with lavender or chamomile essence drops. Again, it may or may not help.

I didn't have the time to wait for the "correct" diagnosis or the medication to "kick" in. I had to come up with a survival plan for the entire family.

Just wanted to offer some of the everyday things I used that helped sometimes....others not so much.
 

totoro

Mom? What's a difficult child?
Timerlady-
This is part of my problem... we have things setup to help her self soothe. We do not have a fenced yard but I can sit with a cup of coffee and watch them in the back.
The problem is, she is so needy and clingy and BORED. Everything last for a grand total of minutes, and then she is done. If one of us is not right there with her she wont do it or it lasts minutes, if we are with her it might last a few minutes longer.
We have had to break down and let them watch a bit more television, but it seems to elevate her more at times. Although she is able to leave her "head" for awhile.

I can get her to go in the hottub at times, but again I have to be with her... she just wont self soothe or try. I will put her on the guest bed and say just jump, jump out the angries the sillies etc. and she will if I am right there. But the minute I walk away she stops. "I can't"
She has a puppy, and a little video game, leapster... it is all so hit and miss for now. I kind of think the stabilization is a big part of this???

She will not feel the internal calm until she is stable...
I try so many techniques and keep reading, and use suggestions from you guys... but not much helps yet. She is a good girl she is just so scared all the time and needy. Yet on the other hand she is the most ougoing girl I know!!!
Thanks
 

pepperidge

New Member
How about clay? My youngest used to like to make clay snakes for a long time. Just rolling out the clay. Play dough?

Has she ever tried a gameboy?

What about books on tape? You can get them from the library. At that age, my kids loved Frog and toad (by Lobel) Beverly cleary, I forget what else (Fantastic Mr. Fox).

Probably nothing you haven't already tried sorry.
 

timer lady

Queen of Hearts
It really sounds like your difficult child cannot tolerate being out of your sight. I think this is the norm in many of our anxious little difficult children.

I filled a container with rice & beans (about 6 pounds worth) & hid little items in the container for them to find. kt would spend hours sorting the beans, while wm loved to dive into to find the hidden toys.

I wish you luck finding something that works for your difficult child.
 
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