Need medication advice!

[P-nut2004]

Ok so I've been doing some research online on difficult children medications (concerta, risperdal & zoloft) and I think I'm more confused now than I was when I started. Concerta info says it should not be given to ADHD kids with anxiety, which difficult child is diagnosis'd with and has serious issues with. Zoloft says it is only supposed to be used for the treatment of Obsessive Compulsive Disorder (OCD) in kids (difficult child has 'Obsessive Compulsive Disorder (OCD) symptoms' according to psychiatrist but not enough to add it as a diagnosis) but psychiatrist put difficult child on Zoloft for the Generalized Anxiety Disorder (GAD). Also the Zoloft clinical trials I read seem to suggest it only works when the dose is continually raised which is not safe. Risperdal is a whole 'nother issue, I have found very controversial info on its use in children & it appears it is mostly prescribed for Autism Spectrum Disorders (ASD)/Pervasive Developmental Disorder (PDD) kids with anger outbursts. I know they put difficult child on that one for her temper tantrums because she can get pretty nasty, psychiatrist started it almost 1yr ago when she killed easy child 1&2s guinea pig in a rage.

Bottom line here is that the only medication that has done its job well in my opinion is the Concerta, difficult child has improved 110% in school this year & is now above grade level and not getting into trouble every day. However we are still seeing constant anxiety, she picks her skin constantly until it bleeds (usually her cuticles and nails but often her hands or random bumps and scabs), she steals, lies, comes unglued every time something she doesn't like or doesn't expect happens, and refuses to do most anything she is asked to do...I could go on but most of you know what I'm dealing with. Her meltdowns are not nearly as violent as they used to be and I credit the Risperdal for that but its kind of a consolation prize considering I would much rather we didn't have 50 meltdowns a day. On top of all of this we still have the ongoing constipation and incontinence, its not just bedwetting, she 'drizzles' (her words) often throughout the day so she wears pads, and she keeps UTIs & bladder infections. The urological symptoms pre-date the medications, but from what I've just read the medications may be worsening the issue. And although she does not have a diagnosis of depression she did have a depressive episode about 2mo ago where she became suicidal and has been having periods where she is very moody and withdrawn, I suspect she is still having the 'bad feelings' but is afraid to tell us because the psychiatric hospital visit scared the cr@p out of her. psychiatrist blew this whole episode off by the way

Sooo......here's the question part: Do any of you have any experience with these particular medications? Or any suggestions for other medications or other treatments? Any feedback at all is greatly appreciated as our psychiatrist is very difficult to deal with and resistant to adjusting difficult children medications. Thanks for reading this, I kno its a long post

 

[TeDo]

I can't really give you any advice. The only one of those medications we have dealt with is the Risperdal and that was a disaster for us. It does sound like a lot of medications for a 7 year old. Have you asked for a referral to a neuropsychologist? I would highly recommend you try to get psychiatrist to agree to the more thorough testing. The diagnosis's you list for difficult child could all be a part of something different.

Hugs to you.

 

[HaoZi]

Risperdal was a nightmare for us, too. Highly aggressive, easily agitated, self-harming, other-harming, etc. Would happily erase that from my memory if possible. What Kiddo is on now works pretty well for her, though I think one of them needs to be upped on next visit, just not sure which one. She's not an angel by any means, and while her behavior was wonderful on Zyprexa and Clonidine (though the Z dose had to adjusted up a few times) she couldn't handle the Z physically.

 

[P-nut2004]

Thank you both...

TeDo: We have had a full neuropsychologist panel done (3 days worth, which was exhausting for difficult child) her diagnosis previous to that was just ADHD ODD, the rest was added as a result of the neuropsychologist testing.

HaoZi: Unfortunately difficult child had self-harming & violent behavior before the risperdal but Im not sure it's doing enough good to keep her on it 3x a day.

I'm just very frustrated with the whole situation right now. I hate to be giving my baby these medications that have potentially serious side effects when they don't seem to be doing much. I want to try to talk to her psychiatrist about this but I know if I don't have all my info together & make myself very clear as to what I want psychiatrist will just blow me off again and write next months scripts. psychiatrist is also very 'stuck up' any time I try to say I read anything etc. as if I should never question her authority......Im really not sure how to go about switching psychiatrists either because we had to go thru a very long process to get referred to her with medicaid.

 

[TeDo]

difficult child is also on medicaid and we are free to go to any doctor/specialist we want. Is she on straight medicaid or managed care through the medicaid program? If it's managed care, there are still other approved psychiatrists to choose from. You could call your insurance company for names. You need a psychiatrist that is going to work WITH you.

 

[ML]

Our psychiatrist was saying they would give the Risperadal to manster if he didn't already have an existing weight problem. He is on a stimulant and zoloft (for Obsessive Compulsive Disorder (OCD) and anxiety which was pretty bad) and clonidine for tics. When he's on his medications, has his sleep, etc. he's a very pleasant kid to be around. They don't make him into a easy child or anything, they just (for us) take the symptom intensity down from over the top to manageable.

 

[P-nut2004]

TeDo: We moved to a new county a few months ago & the DSS here is a nightmare, but we also just got a new pediatrician so maybe they can direct me to a new psychiatrist, we had to get a referral thru our original pediatrician to get the psychiatrist we have now so I will ask them when we go next month for her urinalysis. Also psychiatrist & therapist r very closely connected (psychiatrist referred us to therapist) & I am a bit afraid of the reaction when I switch psychiatrists but of course I know that is not what matters.

ML: difficult child has the opposite weight issue, she is 7yo and has gone from 46lbs to 40lbs in six months, in which time she has also gotten taller, I was horrified when I realized a few days ago (when we hit shorts & tank top weather) that her knee caps, shoulders, elbows & collarbone are sticking out, she looks starved but psychiatrist monitors her weight & even tho I have mentioned that difficult children pants have gotten too big psychiatrist doesnt seem concerned. Sleep is another issue that psychiatrist doesnt seem to care about; difficult child gets up several times a night, we had to install a camera in her room so I can check when I hear her up because if she hears me open my door she's back in bed before I get to her room. After monitoring her it appears she is not getting nearly enough sleep, some nights she does seem to fall asleep easily but she always gets back up & she wakes up every morning completely manic (talking non-stop literally from the second her eyes open, bouncing all over the place, unable to pay attention to anything). I have also mentioned this to psychiatrist but she didnt feel we needed anything to help with sleep so I am thinking of trying melatonin if I can find the extended release form.

I know that there is no combination of medications &/or treatments that will make her a easy child but right now her behavior is still upsetting to her, she gets very frustrated with herself & I know how horrible it feels to be out of control of your own brain and body. The rest of us would of course like her to be more easily manageable but I am not as worried about how her behavior effects us as I am about how it impacts her self image. I am very scared that these depressive episodes will get worse if we do not find the right combination to help her function better. Thank you guys so much for your input, I am so glad I found this place, it has been such a huge help in the short time since I joined!

 

[InsaneCdn]

On the "sleep" issues...

First - hugs and nods... yes, its a problem; no, the docs don't see it that way.

We're still pushing on that one - don't have outside help yet, but found a few things that worked for us (a different situation than yours, so no direct ideas...).

But we have definitely found that problems with quantity OR quality of sleep have a direct impact on behavior and emotion.
(and, behavior and/or emotion issues also affect sleep)

 

[HaoZi]

P-nut, when did her self-harming start? Was she already on medications at the time, or was it before any medications? Risperdal wasn't Kiddo's first fling with it, just her worst. She did it on Celexa, too.

 

[P-nut2004]

Insane: Thank u it helps just to know that there are others dealing with the same issues. I definitely think finding a way to improve her sleep habits would help how irritable she gets in the evening at least.

HaoZi: Unfortunately her self-harming predates any medications or diagnosis, I wish it was just a side effect. One of our scariest episodes ever was what made me decided that there really was something wrong that she needed help for; at 5yo she found DHs razor in the bathroom and cut both of her wrists open in the middle of the night. She never even cried, I only woke up because I heard her trying to clean up the bathroom and found my 'baby' wondering around in nothing but a pull up with blood all over her and toilet paper wrapped around her wrists. Since then most of it has been small things like skin picking & some injuries from risk taking behavior like jumping off of high places.

 

[HaoZi]

Oh wow hon, I'm so sorry! I'd be trialing more medications, too. If they suggest tegretol ask them to try trileptal first, while it takes more to get the same results as tegretol it has a far lower side effect profile and doesn't require monthly blood draws. It's really helped my Kiddo (and yes, her psychiatrist suggested tegretol and I said no, I'd rather try trileptal first, if it doesn't work then we'll consider something else). I don't know if they would suggest either to you, or if they would be compatible with what difficult child is on now, it's just that most docs won't suggest trileptal before tegretol. We've been through a number of medications because Kiddo has atypical reactions (not all of them as bad as the celexa or respirdal reactions, but too much for her to use them, like neuropathic pain in her feet, medications that "should" sedate activate her instead, etc.) to many different medications in many classes of drugs.

 

[TeDo]

I am thinking of trying melatonin if I can find the extended release form.

We just started melatonin this week. difficult child was put on an antidepressant that seems to make it difficult for him to get to sleep and stay asleep. I just bought the 1 mg tabs and started with one tab, now he's taking 2 because 1 didn't help him sleep longer. He is falling asleep fast at 9:00 or so and doesn't wake up until around 6:00 now. I didn't know they made extended release but the regular seems to be helping a lot.

 

[Marguerite]

We tried the risperdal with the boys. It did seem to help smooth out a lot of the problems, especially the raging and anxiety. But difficult child 1 was sedated quite badly plus gained a lot of weight. difficult child 3 was on a much bigger dose than his big brother and had no weight issues but also minimal benefit. It was too expensive to keep taking if the benefit was not sufficiently noticeable. When difficult child 1 stopped taking risperdal, the extra weight came off.

Zoloft - difficult child 3 can't tolerate it but it works wonders for difficult child 1. He calmed down a lot, it reduced a lot of his Obsessive Compulsive Disorder (OCD) and anxiety. Similarly, easy child 2/difficult child 2 has been put on it and it has made a big difference to her ability to cope. Her Obsessive Compulsive Disorder (OCD) has eased off and she can at last begin to plan out solutions to problems.

Stimulants - they SAY you shouldn't give them to kids who have anxiety, but I think you need to examine where the anxiety is coming from. If the anxiety is at all connected to the problems they have with not being able to maintain focus, then stimulants can actually reduce the anxiety because it reduces the cause. For example, difficult child 3 has really severe anxiety issues, but if he misses taking his stimulants, his anxiety is actually a lot worse because he knows he is not coping.

Ritalin/Concerta - our boys had bad rebound on this one. That's why they take dexamphetamine. We get it made up into a sustained release formulation. It actually has meant that the total dose is reduced.

With medications, you observe what works and what doesn't. Use the good stuff, ignore or don't use the stuff that makes little difference.

Marg

 

[P-nut2004]

Update: I called difficult children p-doctor on friday and left a message, then again yesterday & got voicemail again...left another message. Finally she calls me back today and I tell her difficult child is totally 'of the chain'; bouncing off the walls, flipping out over everything, totally incapable of focusing. Also told her about monitoring her at night and that I'm sure she's not getting enough rest. She said that sleep deprivation is probably causing her behavior, which was my opinion as well, I asked about trying melatonin...she says thats what she was going to suggest, then tells me "Thank you for informing me and involving me but it sounds like you have this figured out, we'll see how the melatonin is working when I see you next (at the end of June)" Pshh who needs a psychiatrist LoL apparently I've got this....not really, Im sure better sleep will help some but I don't think that's the whole issue and I hate it that psychiatrist is always in a hurry to get the info and find a quick fix, I still didn't get ANY feedback from her other than telling me I had the answers already.....GRRR....We have an appointment with the new pediatrician soon so maybe they will be able to refer me to a better psychiatrist.

 

[Wiped Out]

My daughter has been on risperdal for about 2 months and definitely it seems to be helping with her anxiety. Fortunately, she has not gained any weight (she's a size 0 and it hasn't affected her at all).

When my son doesn't sleep well he gets so manic it is scary. The first question the psychiatrist often asks is how is difficult child sleeping. I hope the melatonin helps!