difficult child's medications have leveled off...

[totoro]

Well for about the past two weeks now difficult child has started cycling pretty bad again more intense more frequently. She has had a couple of manic episodes in public, screaming in Gymnastics. She hid behind a mat and screamed she was scared and then threw herself off of a balance beam and curled up in a little ball screaming "I can't do this", It took me a 1/2 an hour to get her out of there and she was a wreck, limp noodle by the time she snapped out of it. But then cycled back up and down the rest of the night...
Threatened me with calling the cops because I brushed her teeth too hard !!! :nonono:
I tried not to laugh at that one!!! But of course she proceeded to spike back up and elevate again....
I have had to restrain har a couple of times as well, with biting added for fun. Her violence is still not as bad as it was! But she is just a cycling wreck!!! :surprise:

She has been talking about the bad thoughts in her head again... giant worms coming to take her away... mean people. The night terrors have increased.
Basically she has been on the Risperdal for about 8 weeks now and I figured it leveled off and needed to be increased. I have just been stalling... even though I know it is better for her to be stable.
So I finally called psychiatrist in Chicago and she agreed, increase to .50mg bid. She actually is a bit concerned now about difficult child's dillusions and interest with death.... before she had told us not to worry about it. Not that anyone thinks she is suicidal, at this point but she is suffering.
She does not want to add a mood stabilizer yet due to difficult child's age and would like to try this for awhile longer and see how we do, and watch the weight gain.
difficult child is having some anxiety over that as well.
It has been a long 2 weeks husband has been back and forth for work and now his family wants us to fly out to Chicago for his stepdad's 60th birthday (belated) party... I am nervous for difficult child.
Anyway we do the medication increase tonight... wish us luck.

 

[flutterbee]

I'm sorry things are so hard for you and your difficult child right now. Poor thing has got to be miserable - and your stress has to be through the roof.

You mentioned an increase in night terrors. Were you aware that one of the listed side effects of risperdal is nightmares? (It's either nightmares or just increased dreaming - I can't remember. Look at the printout from the pharmacy that lists the side effects.) When I was severely depressed 4 years ago, they put me on .5mg risperdal to take at bedtime. Both to help with sleep and because of the heavy suicidal ideation - it was for impulse control. I rarely have nightmares, but I was having them every night while on the risperdal - where I would wake up in a panic and it would take 5 minutes for my heart rate to slow down. I quit taking it at that point and just took it PRN for awhile. Even after I quit taking it, it took 2 weeks for the nightmares to stop. You may want to bring this up with her psychiatrist and see what she says.

 

[kris]

<span style="color: #660000">sorry to hear she's having such a rough time. i see risperidal as her only medication. sounds like it's time for psychiatrist to take a look at that. i'd be asking about adding a true mood stabilizer. risperidal alone rarely holds a child with-BiPolar (BP) for long.

kris </span>

 

[Janna]

Good morning,

I was thinking the same thing, mood stabilizer.

Risperdal isn't going to really do anything, at least long term, for mania. Or Bipolar. Dylan has trialed this medication three times, and well, it just didn't do squat for his Bipolar.

The only down side to the mood stabilizers - they take 6-8 weeks or longer (depending on the medication) to work. Risperdal, you can see results pretty quick. The thing is, Risperdal is going to fizz out, with almost certainty, at some point. The mood stabilizer, that will work for the long haul.

Dylan's Bipolar was a mess until we incorporated the Lithium. In all honesty, 17 medication trials, 7 years, countless wrong diagnosis'es, the tantrums, the rages, the out of control emotions, no medication took care of that except the Lithium. No rages since January 12, 2006. 13 months.

I'm sorry you're struggling. Bipolar stinks.

Janna

 

[BusynMember]

Hi, sorry things are tough. Risperdal is an antipsychotic, used for the short term for raging, but it's not a mood stabilizer and won't hold things for the long term. The mood stabilizers (first line) are Lamictal, Lithium, Trileptal, tegretal and Depakote. They take about eight weeks to kick in, but can last for years or forever. Also, I wouldn't take that trip for the birthday party with an unstable kid, even if the family gets mad. If he had a raging high fever they wouldn't expect you to attend and, in a way, this is even worse and certainly tougher. The kids well being has to come before the extended family's wishes and this may be a destabilizing trip for your child and for you! Hugs.

 

[SearchingForRainbows]

I'm so sad for you and difficult child! I wish I could offer you some good advice, but I really don't have any. I think you did the right thing by calling the psychiatrist.

I'm thinking of you and praying that things get better soon!!! Sending cyber hugs, WFEN

 

[totoro]

Thanks for the replies...
I also think the March Madness is kicking in for her as well!!!
I really do understand the reasoning behind the mood stabilizers, but her psychiatrist feels we should do one medication at a time and let them really take full affect to see if it is the right medication or not. She also believes along with Dr. Feadda that atypical antipsychotics are the medications you start with.
She said difficult child has her whole life to be medicated why rush to put her on a bunch???

From what I have read, this is kind of the new way of thinking especially for the young kids. I might be a little more hesitant to trust Dr. Pavuluri if she were not working on the new DSM criteria, a book and with CABF as well as running the Mood Disorder Clinic. She is a little too busy some times but she knows her stuff.
She agrees we will need to add more but wants to make sure we know what each medication is doing and that it has been given a chance.

I am new to this and have read both sides of this thinking, I will keep reading and when and if difficult child gets worse after this increase or does not improve I will push for a change. I have to give this psychiatrist a chance and my gut says difficult child is not as bad as she could be...the Risperdal has helped.
As for the night terrors she had them worse before the Risperdal so psychiatrist does not think this is a side affect, she is just needing a higher dose now.
Thank you for the support
She is still climbing the walls... after 2 doses... So who knows I may be calling sooner than later!!! lol

 

[jodyice]

Sorry to hear what you're going through. Even though psychiatrist wants to wait before adding a mood stabilizer, I hope it's not too long of a wait.
Remember to take some time and do something for yourself as well.
I wish I had more advice to give. Will keep you in my thoughts. ~gentle hugs~

 

[pepperidge]

you know, guys, we have all read the Bipolar child and have memorized the wisdom that BiPolar (BP) kids need mood stabilizers and that anti -psychotics won't help for the long run etc etc etc.

But you know, sometimes I think we should give (some!) psychiatrists the benefit of the doubt--there is much that is changing in this field, and really a lack of solid clinical evidence on a lot Occupational Therapist (OT) things. Rather than telling posters that their children should be on mood stabilizers, we might want to gently inquire if the poster has talked to their docs about mood stablizers, what their take on the whole thing is, etc, before we go into our mood stabilizer thing. Perhaps there are some psychiatrists out there who are in the forefront of their fields, very knowledgeable about bipolar, and have some reasons for doing the things they do. We might learn whether there is some questioning of the traditional wisdom and where the field is heading.

It seems that totoro's psychiatrist is pretty well versed in her field.

Sorry-- I think we can serve a useful service in alerting posters when something seems very amiss in the medications to symptom relationship, but lets not assume that there is a "truth" out there and that we know it.

Flame away, but I think a little humility on our parts might be in order.

 

[Sara PA]

Nevertheless,

1. the American Psychiatric Association's guidelines for treating bipolar is first a mood stabilizer with a short course in an antipsychotic to control an acute manic phase if needed.

2. no antipsychotic has been able to prove itself to be a long term mood stabilizer. The clinical testing has been done; they don't work for that. If they did, they would be FDA approved as mood stabilizers. Antipsychotics continue to be approved only for short term use.

3. the side effect profile for the mood stabilizers is no worse -- or better -- than for the antipsychotics.

 

[smallworld]

I actually understand Totoro's psychiatrist's reasoning. Totoro's difficult child has auditory hallucinations, and in this case, Risperdal makes a lot of sense to quiet the voices (mood stabilizers will not do that). Furthermore, several psychiatrists have told me they frequently prescribe APs alone in younger children to start with, and the medication's effect can last one to two years on its own (this fact is also in The Bipolar Child). That may or may not happen in Totoro's case, but I don't think the psychiatrist is wrong to try, given that it's always wise to have as few medications on board as possible. It's also wise to make one medication change at a time, which is what this psychiatrist is doing.

Totoro, I hope the new medication dosing makes a difference. Hang in there -- you're doing a great job advocating for your difficult child.

 

[Sara PA]

If the auditory hallucinations are the result of temporal lobe partial seizure activity, the anticonvulsant mood stabilizers have a better chance of stopping them than a antipsychotic which will lower the seizure threshold.

Ya all can roll your eyes at me all you want but the fact remains that temporal lobe epilepsy is one known, proven cause of hallucinations.

 

[totoro]

I really do thank all of you for the input it makes me think about what you say and research more and ask more questions.

I have asked about the seizures... I know Sara PA I need to push to get scans/images etc, but I always ask if it could be anything else???
And maybe she does have temporal lobe seizures, or one day we will find out our diagnosis is wrong. but for now this diagnosis really does fit her to a tee, especially with the family history.
As her psychiatrist said she is classic bipolar, I or II we will have to wait and see. Maybe there is some co-morbid disorders also, but this is the most intense along with the Sensory Integration Disorder (SID).

I know everyone means well. (I hope) I am just trying to help my daughter the best way I can. I don't want her to struggle like most of my family has.

Thanks

 

[tiredmommy]

totoro-
Always remember that we are just parents who've been there done that with the difficult kids in our lives. No one knows what's best for your difficult child but you & the professionals you trust. Continue to educate yourself & advocate for your difficult child. You are doing a great job, Mom.

 

[Janna]

Uhmm, I wasn't implying she should run out and get her difficult child a mood stabilizer, hope it didn't come off that way.

Just knowing from our own experience, reading the Bipolar Child, and having my own BiPolar (BP) kid that didn't succeed on antipsychotics alone (and knowing that they are not for long term use), it would be a pretty good suggestion.

FWIW, I didn't know that Depakote was a mood stabilizer when I came to this website, and Dylan had trialed that (with bad result unfortunately). Additionally, I didn't know what to treat the BiPolar (BP) with, until someone here with BiPolar (BP) suggested the mood stabilizer. Once we got the Lithium in, life was great.

Just our own experience.

Janna

 

[totoro]

Thanks Janna-
I know what you are saying. I know one day I will probably say why didn't we get her on the darn mood stabilizer earlier??? I had a hard time putting her on the Risperdal.
I know we will one day have her on one, I am just trying to take it one day at a time. And hopefully make smart decisions.
I do appreciate your input

 

[pepperidge]

Totoro,

You've got a really difficult kid on your hands--and one so young at that. It sounds like you have a well reasoned plan from the psychiatrist. From what I read here and know from my own situation, it takes most of us considerable time and a lot of agony in making the decision to start medications. There is really so little known about kids as young as yours.

I am glad you have found Risperdal to help. It made a big difference for my son.

Whoever said this is not a sprint but a marathon sure had it right. Hang it there-- you're in it for the long haul. And you are miles ahead of many of us who who wasted a lot of time and suffered through inaccurate diagnosis'es and wrong medications.

good luck with the dosage increase.

Chris

 

[ellenr1]

(Risperdal is an antipsychotic, used for the short term for raging, but it's not a mood stabilizer and won't hold things for the long term. )

My two difficult child's were on risperadal. It made my daughter's nipples leak fluid like a nursing mother and she ate her way into another jeans' size in two weeks.

My son was on .5 mg for at least 18 months, in conjunction with-zoloft. I was never told that it was for short term use. He ended up back in the hospital. All risperadal did for him was make him groggy enough to fall asleep quickly at night, and then getting him up in the morning (6:30 am) for middle school was just an awful chore.

I find myself getting more and more ticked off at how medications are so casually prescribed for kids without concern for side effects, and this is by child psychiatrists who are supposedly good at what they do!

I wish I could tell you that Lamictal helped my daughter, but I think she may be one of those adolescents who has treatment resistant depression, or she has been consistently prescribed the wrong medications.

 

[dreamer]

totoro:
I am not gonna bash your doctor, LOL- cuz you know why..LOL......same doctor as us. And yes, out of countless docs, way more than 10 psychiatrists alone.....this doctor did best by us. And whle we do not have to get on a plane to go to the doctor, it is still 2+ hours each way for us. And in my opinion, well worth it.
No, my kids are no longer on any medications----and it was with the docs agreement to try this for us.....no, my kids are not perfect off medications.....I just wanted to toss it out there this doctor does not Rx cavalierly. And this doctor is HIGHLY respected in the world of Early Onset Bi-Polar (EOBP) research.

I do not know what the magic answers are, thats for sure.
I do` know my dtr was short and slender due not at all to genetics when she was younger, but due to use of stims. She was far more slender than ANYONE on either side of family, and far shorter.
While we have trialed nearly all psychiatric medications, we did NOT trial respirdal......altho dtr DID use Seroquel for quite a time. ANd while on seroquel she did gain weight and while both sides of family run heavy- she is by far the heaviest. SHORTER than everyone and HEAVIER than everyone. by far. Even on low doses of seroquel.
As for Lamictal, she could not tolerate side effects at even 12.5 mgs.
She was also trialed on a microdose of Lithium, but she did not do well with side effects on that, either and it made doctor nervous becuz the docs have never been able to get a blood draw out of my` dtr. Not even under sedation.
I mostly posted just to offer my moral support. Hang in there. Keep communicating ith doctor........Hugs.