Kiddo's bad medication reactions, we looking at this again?

[HaoZi]

Okay, so some of you kind of have an idea of what I go through with my difficult child. She reads meaning into things that aren't there and then blows up. She had the suicidal thoughts/rages reaction to both Celexa and Risperdal, and some kind of foot pain thing going on with them, too. Last night the foot pain started again and today she had a blow-up at school. She's on Zyprexa right now, 2.5mg twice a day. She's been on it about two weeks now.
I don't know if she develops a tolerance or intolerance to this stuff very fast, if she's been getting wrong diagnosis's from everyone and therefore wrong medications, or if she needs to go up on this medication. We see psychiatrist tomorrow, and I'll be asking for a referral to a neuropsychologist for evaluation, school is working on getting her an IEP in place (it's gone to the district and looks like they will test for emotional disability issues), but I don't know what else I can do to help her.
Today it was "So and so said something about my science work and that means they think I'm stupid and I just want to die/kill myself." She managed to calm herself after about 42 minutes (not bad considering how long some of her rages can go) and was reasonable when I picked her up from school (early again). I'm also thinking I might want psychiatrist to look into epilepsy like someone mentioned and maybe other possible physical causes. Any suggestions/advice/experience?

 

[smallworld]

Does she definitely have Aspergers? If so, who gave her that diagnosis?

 

[HaoZi]

The doctor who also gave her the "official" diagnosis for bi-polar at the hospital. It's something I had been wondering about for a while, and in talking to her other therapists, teachers, and my own experience, we all agree she fits it and so did he. Of course, in looking at a more detailed (i.e. more exact behavior pattern list) for Asp, I was reading it and thinking "This could be me. This also describes more than half the gifted people I've ever known, to varying degrees." A non-verbal learning disorder is also something I'm going to talk to them about looking into, but my main worry right now is just getting this kid through her school day without these blow-ups. She has zip coping skills. She can "get" a lot of things on intellectual level - to a point. She understands A, B, C, and D. She does not get how they connect apply to anything beyond a small scope, but in other ways she grasps certain bigger concepts in a more savant-like way. She has already been questioning life and the purpose of the universe.

 

[smallworld]

The reason I ask is that Aspergers (AS) is often the umbrella diagnosis and mood dysregulation falls under that (it's not true bipolar disorder). To have true bipolar disorder, you need distinct episodes of mania and depression. It's not just about meltdowns. Kids with AS often have odd reactions to medications, which is what you may be seeing in your daughter. That's not to say that medications can't help; it's just that hitting on the right medications can be tricky. My own son (who was finally diagnosed with mild Pervasive Developmental Disorder (PDD) last May at the age of 17) trialed about 35 medications before we hit on the right one. He had major manic reactions to every SSRI he ever trialed, which sent us down the bipolar path for a while, too. But he doesn't have BiPolar (BP). He just has bad reactions to SSRIs.

A Non-Verbal Learning Disability (NonVerbal Learning Disorder (NVLD)) is a spectrumish diagnosis that is diagnosed purely based on neuropsychologist testing. Usually you have AS or NonVerbal Learning Disorder (NVLD), not both.

 

[HaoZi]

She's considered "ODD" but I question it. In her better moods she's quite compliant. I question the bi-polar, too, but many people here have also said their kids' "manic" phase is very different from what is generally listed because those lists are teens/adults. She's quite bouncy and very ADHD in her lighter moods, complicated little creature. A absolute joy when she's doing well, and a total terror when she isn't. She says she's happier on this medication and calms down faster, but with the blow-ups starting again after a nice period of not having any major rages (and not much in the way of minor ones beyond a bit of being whiny) for almost two weeks, I'm worried she's having a bad reaction to this medication, too.

 

[smallworld]

You should google Dr. Ellen Leibenluft and read about the research being conducted at NIMH in Bethesda, MD. She and her research team do not believe that BiPolar (BP) in kids is all that different from that of teens and adults. They believe there is another childhood disorder called Severe Mood Dysregulation that is equally impairing but is not true BiPolar (BP).

One thing you should know about the atypical antipsychotics like Zyprexa is that their effect can wear off and sometimes a higher dose is needed. My daughter has been on Zyprexa for 4 years (for an eating disorder, not meltdowns), and initially we had to go quite high to get her symptoms under control. Once her symptoms subsided, we were able to lower her to a maintenance dose. Something to consider.

 

[HaoZi]

I was wondering about a higher dose, but hard to tell if that would be the way to go because we tried that with Celexa and she got much worse in a short amount of time.

 

[BusynMember]

My son had all sorts of strange and DANGEROUS side effects on both Risperdal and Zyprexa. One of them was pain in his muscles and fever-like symptoms. Some kids can not tolerate those medications at all. My son was able to tolerate Seroquel.

 

[HaoZi]

The reason I ask is that Aspergers (AS) is often the umbrella diagnosis and mood dysregulation falls under that (it's not true bipolar disorder). To have true bipolar disorder, you need distinct episodes of mania and depression. It's not just about meltdowns. Kids with AS often have odd reactions to medications, which is what you may be seeing in your daughter. That's not to say that medications can't help; it's just that hitting on the right medications can be tricky. My own son (who was finally diagnosed with mild Pervasive Developmental Disorder (PDD) last May at the age of 17) trialed about 35 medications before we hit on the right one. He had major manic reactions to every SSRI he ever trialed, which sent us down the bipolar path for a while, too. But he doesn't have BiPolar (BP). He just has bad reactions to SSRIs.

A Non-Verbal Learning Disability (NonVerbal Learning Disorder (NVLD)) is a spectrumish diagnosis that is diagnosed purely based on neuropsychologist testing. Usually you have AS or NonVerbal Learning Disorder (NVLD), not both.

I'm not ruling anything out. Everyone involved is going out of their way to help her except psychiatrists and kiddo herself. Hopefully will get a referral a neuropsychologist today, but if psychiatrist won't give it to us I'll be calling her pediatrician instead.

 

[smallworld]

Do you need a referral? We just went to a neuropsychologist on our own.

As you've probably read on the board, ODD is not a helpful diagnosis. It's a collection of behaviors for which there's an underlying cause. When the underlying cause is identified and treated, the oppositional behaviors typically subside and improve. Any doctor who gives ODD as a primary diagnosis isn't looking very hard, in my humble opinion.

 

[HaoZi]

That's my take, too, SW. Yes, the neuropsychologist's office won't even answer if they take Medicaid because we don't have a referral. psychiatrist refused to give referral. Director of that office was there today and I had a long chat with him after kiddo's appointment. Kiddo's medication was doubled, now she's having foot pains again. GAH. Director said he will present my concerns at staff mtg tomorrow and see if they can help push a referral or bring someone in to do it. IEP is moving forward, SD has agreed to test her for emotional disorder, but what they can screen for is limited. Kiddo is refusing to do homework, so we'll see how the "natural consequences" thing goes down. Hoping the new dose of medications will help and not make things worse like the previous ones.

 

[Mitchy]

Where I live we need a referral too but since he's getting therapy from a public health organization, and the psychiatrist is part of that therapy, that requirement is waived. You may want to see if your state is the same way.

Still working on a signature.

My eldest has a raging case of ADHD but is getting better every year at this point. He was diagnosed with Asperger's but that's been reversed based on his progress in the last three years. He now functions normally.

My youngest has PTSD and ODD. He's the one in the therapy program, which has failed. He's moving to a new program next month. He is very hard to deal with and why I could use a "soft place to land." I'm so tired of being yelled at all the time.

We all survived domestic violence. Now their dad won't spend time with them, and tells them their behavior is why. I feel so bad for them and even worse because I know they might be better off if he doesn't spend time with them.

 

[Jena]

haozi - I'm so sory your going through all of this. sounds to me like your doing everything you can to get the help she needs right now. i hope night goes well and the foot pain thing stops. good luck with-the referral tmrw!

Mitchy - hi why don't you open your own thread, post so everyone can welcome you!!

 

[HaoZi]

She's been up and down with the foot pain this evening, not even walking around helped much like it did the other night. Turned on the AC so I'm going to freeze my rear end off but she's settled down a bit. Doesn't bode well for tomorrow and she never did get her homework done.

 

[HaoZi]

Nasty morning so far, she's been in "everybody hates me/I want to kill me/you're stupid/you're a liar" mode. Not sure if this another bad reaction to medications or just a bad attitude and crankiness. We'll see how the day goes.

 

[smallworld]

Sorry it's not going well. Hope the day gets better.