TMI swirling in my brain --make it stop!

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Registered: 10-09-2003
TMI swirling in my brain --make it stop!
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Sat, 06-18-2005 - 11:52pm

If you have a kid with a mood disorder comorbid dx, HELP!

~ Chelsea
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Registered: 03-26-2003
Sun, 06-19-2005 - 12:50am

Chelsea, I wish i could be of more help. I know you tried omega's. We actually had the best luck taking away meds, adding supplements and changing his diet. Also, coming to the acceptance that he isn't going to be NT. He still needs lots of coping skills. He still needs to make tons of behavior improvement, but he also has made lots of improvement. He certainly is trying so hard, but still has glitches. Baby steps I figure.

As for school, give it a try. What is EBD? Emotional and behavioral class I think? then they should be able to handle behavior there. My concern with those kinds of classes with autism spectrum kids is that they can tend to be a target because they are not typically as "savy" and manipulative as typical ED kids are. But they should be able to manage behaviors there pretty well.

My DH tells me there are more and more kids coming up that have this mix of challenges. It isn't rare anymore. I wonder if you could have a district autism specialist consult to his class for him. Then with the ED teacher and autism teacher colaborating they possibly can come up with a good plan for him.

Mike's teacher and class was not the "right" kind of program to handle Mike. He was the only one with behavior challenges for a large part of the year. But he had a wonderfully gifted teacher who worked her tush off and made a behavior plan that worked for him. Sometimes more than a particular program, a good teacher is what is needed.

I will keep my fingers crossed that it all works out great.

Renee

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Registered: 03-31-2003
Sun, 06-19-2005 - 2:58am

Oh, Chelsea, I feel your pain! My son, 7, is dx with Asperger's and "mood disorder-NOS". Currently he's doing very well, but it wasn't always so.

In David's case, the mood disorder has been the thing that has been so tough...although who can say really where the line between two neurological disorders is? Last year at this time, before he was dx (and medicated), life was just unbearable. My sweet, gentle boy was GONE, and in his place was a child who woke up first thing in the morning yelling foul, hateful words, talked about killing himself, and screamed in rage if you gave him the wrong spoon. We barely left the house last summer, because he panicked whenever he saw a stranger. He would often get manic, and become very wild and destructive, or, worse, hypersexual...lewd and disgusting. His behaviors (which I now recognize as symptoms) alienated us from our neighbors to a point where I'm not sure we'll ever quite recover. Before we began to realize there was a neurological problem, I thought he was doing that stuff for attention or control, and it really hurts to look back and think of how angry I got at him.

I'm not entirely sure what some of the acronyms in your post mean, like ABA tx, or EBD. But anyway, is Justus on a mood stabilizing medication, like Trileptal, lithium, or something like that? My David is on Trileptal, which has been wonderful. Our sweet darling is BACK! Of course, each child is different, and what works for one might not work for another (or work, but have bad side effects.) We had to add a small dosage of an anti-psychotic also, because the max dosage of Trileptal wasn't quite enough after a while. We tried risperdal and it made him manic, in a really horrible way. Abilify is what we settled on. It works, but he does get stomach aches and dizziness sometimes. But, he's not throwing his underpants out the window or jumping up and down IN the toilet bowl. He does get kind of wild and goofy sometimes, but it's possible to get him calmed down before he gets dangerously out of control...I guess like any little boy.

He's not doing any therapy at all, and I'm not entirely sure what would be appropriate. I was just thinking today that what he needs is a zen master. He needs to learn to enjoy the moment, forgive himself for his tiny mistakes, and RELAX.

Anyway, from what you write, it sounds like Justus is not on the right medication. It's not uncommon to have to try a few. I highly recommend a book called "Straight Talk About Psychiatric Medications for Kids" by Timothy Wilens, MD. (I'm not sure about that last name: you can find it at www.bpkids.org) The first line of defense is a mood stabilizer (one that works for your child); without that, no therapy or discipline will do a bit of good. A lot of kids also need an anti-psychotic to go with that. I can see now, in hindsight, that some of the very disturbing things my son used to do were very likely because he was having delusions and hallucinations. Surprisingly, when the Trileptal stopped being quite enough, the Abilify (an atypical anti-psychotic) literally made him stop climbing the walls.

You said that what's good for the autism is bad for his bipolar. Are you talking about medication or something else? I really think that once he's on a mood stabilizer that works for him life will get a whole lot better, and he'll be able to respond to therapy, and be able to handle life.

Please, talk with his doctor about the medications. And get that book; if you don't like the sounds of side effects or you feel uncomfortable with the doctor's choice of medication after reading about it, say so. Knowledge is power, as they say. Remember, though, that every kid responds differently to a medication, and if it seems like the doctor doesn't know which one to prescribe, it's at least partly because there is a lot of trial and error.

I wish you lots of luck. I know how hard this is. Try to remember that he's not acting this way on purpose.

Please keep us posted.

Evelyn

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Sun, 06-19-2005 - 3:04am

I just wanted to clarify that all my talk about mood stabilizer medications are because Justus is dx with bipolar. I don't want anyone to think I'm saying this is a suitable or appropriate treatment for ASD symptoms. And, of course, I'm not a doctor; this is not intended as medical advice, etc. etc.

Evelyn

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Registered: 12-24-2004
Sun, 06-19-2005 - 5:49am

Chelsea,

I think you are doing the right thing in trying to keep life simple right now. You may want to add some "off days" to your schedule also. For example, once a week if you could manage it, you could try adding part of a day when your son is with another caregiver (DH?), and you take your other child somewhere for special one-on-one time. You could also add a day when you just don't do anything planned and let your DS do what he likes.

I'm sure you use all these methods already, but we have to do a lot of preparation for Cassian to help him make good transitions. At home, we write social stories, post written schedules, dramatic play (rehearse) new situations, etc. This all helps to prepare him better for doing different things.

Cassian may have a co-morbid mood disorder, but he is not yet diagnosed with that. When we upped his SSRI, he showed impulsive and aggressive behavior, although DH and I both thought his social responsiveness was much better too. It was a double-edged sword. We reduced the meds and this problem was eliminated. We are going to try new meds next month to see if another SSRI will maximize the positives and minimize the negatives.

I think it takes a long time to figure these kids out. In fact, I have a friend whose son is now 15 yrs old and dx with bipolar. It took until this past year to find a psychiatrist who could get his meds and dx right. He takes about 4 different meds now. Previously, the docs had been seeing him as ADHD, but he also has many Asperger's traits. Once his meds were figured out, his mom says he is like a different person.

As for the research that says after age 8 BP kids are less trainable, I tend to disagree with that assumption. I haven't read the literature in the BP area, but there are so man other areas in neuropsych that are coming up with evidence of later flexibility in the brain. There are still so many myths out there, like Autistic kids who don't learn language before age 5 will never talk, and Autistic kids over the age of 7 cannot benefit from most therapies. These myths are still considered common knowledge by some people, but newer research doesn't support them.

Also, I have found many instances in research where something becomes "common knowledge" among experts, but it is actually pretty poorly supported by the literature. In several instances I can think of only one study or an article with no research backing it up made a statement that experts clung to for decades. These assumptions changed the way reseach and practice was done for many years. With this kind of thing happening, I can certainly understand why many educators and practitioners discredit research on a regular basis.

Keep us posted on how things are going.

Suzi

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Registered: 03-26-2003
Sun, 06-19-2005 - 7:44pm

You are sweet for clarifying that. Actually I will say that Cait is on Trileptal for partial seizures and I have noticed her mood and such are much better. She is not mood disordered, but she is a pre-teen in the throngs of puberty. They are ALL mood disordered. Noting quite like a girl with her first experiences with PMS.

I don't mention meds or additional mood dx for Mike because we got burned with meds for him and I finally decided on my own it wasn't the way to go with him. But I do understand how it is important for some kids and know many with BP where mood stability is key and that comes ofte from medication.

When Mike was at his worst the doctor wanted to label him with a mood disorder. Mike had a tantrum in her office and proceeded to need to be restrained for over a 1/2 hour by me. He was spitting and saying horrible things. he stopped aggressing when she said she would call the police and he would go to the hospital. I explained to him that meant he would be away from me and he stopped hurting us long enough that I could get him to my car and I had an appointment with her the next week myself where I would get her imput. She also gave us some depakote to try.

I tried talking to her during the next week. Mike was having a horrible time on the depakote and she wouldn't even return my calls. When I did get her, she didn't even listen to me. Just kept saying that kids with Asperger's don't have rages like that. Only lower functioning autistics. That he must be something else. That was incorrect.

Finally, after thinking I decided that he was done with meds. Everytime we tried a new one he got worse. On looking up side effects and info for the meds he was on I learned that they may have been causing the rages, not an additional diagnosis. So I cancelled the appointment. got info on how to wean him from meds from the neuro, cancelled the next neuro appointment and went a different route.

After 5 years of going to doctors so they could just write another scrip I had had enough. I swear, no matter what the recomendation was the same. Lets try this med now. It never made things better for him. Only worse. For the first time since he was 4 he is med free. He isn't perfect but it is better and I feel like I have a handle on what we are doing and were we are headed.

Boy, that is a long way around the fact that mike likely fits the diagnosis of additional mood disorder. He likely would have gotten one if I didn't cancel appointments. His psychologist does say he has mood lability, but it a side effect of his particular AS symptoms, and we have decided to go at this a different direction than meds. It has worked for us, but I know it wouldn't work for all.

Renee

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Mon, 06-20-2005 - 12:11am

Thanks so much for your input, ladies.


Yep, EBD is emotionally and behaviorally disturbed, Renee.

~ Chelsea