Ticking Time Bomb

[Christy]

I feel like I'm living with a ticking time bomb. Things have been pretty good lately. A few angry outburst but quick to calm and not violent towards me or anyone else UNTIL.... this weekend. We went to Lowe's to run a quick errand, difficult child sees a cooler of large water botttles and wants one. I say, not now, those are too big. We will get something to drink soon but I am not buying that here. Little did I know that this was going to be such a big issue. difficult child shoves the shopping cart into me and threatens to hit me if I don't buy him the water. I tell him to calm down and that we are going to go through the checkout. He will get a drink soon. He was furious when we left without the water. He was kicking and hitting me all through the self-checkout lane. In the parking look he tried to run off and I caught him by the shirt and managed to get him to the van. A man comes up to me and asks if I need help. I thank him as it is probably what persuaded difficult child to get into the car and buckle up. It was a rocky ride home and he spent the rest of the day in his room (I did feed him and provided plenty of water for him--he says, I'm not thirsty NOW!). Could I have done 100 things differently? Sure, I could have bought the water, I could have said we weren't going to buy the water but taken him to a water fountain, I could have been specific by saying, I will buy you a drink at the snackbar outside, etc... But the point is, he felt justified in hitting and kicking me because I wouldn't do what he wanted and he was angry. He did not feel any remorse about this even later when we discussed it. He kept going back to the fact that he was thirsty and wanted the water. I tried to get make the point that feeling thirsty or feeling angry at me does not make it okay for him to hit me. He doesn't get it and I am becoming more afraid to take him anywhere because I never know what will become a "big deal" and set him off.

Christy

 

[Shari]

Christy,
its so hard to know what will set them off and what won't....makes it so hard.
***
With my difficult child, before we go into ANY store, we discuss expected behavior and I read to him from a list of everything that we are going to buy - and we don't deviate from the list. His in-home actually started this, and it eventually paid off. It started off by making a trip to the only store we have in my little town, a DG, every day. We had a list, I had one item (I usually aimed for something like soap of shampoo), he had one item (usually gum or something like that). If it wasn't on the list, we didn't buy. Regardless of behavior, we stuck to the list, and lemme tell ya, more than once, I paid for shampoo and gum while packing a screaming difficult child under my arm...
***
As he got to accepting the 1 item, we started adding 2 or 3, and eventually more and more, and also started adding trips where I got one thing (written on a list) and he didn't get anything. Eventually, it worked. I still don't take him unless I have to, but when I do, I can buy 10 or 15 items and get him a pack of gum and we're good. If I buy one or two, when its in and out FAST, we don't buy him anything.
***
I have no idea if this would help you, but it sure helped my difficult child. Making a point to go to DG every single day was a pain, especially for someone who doesn't like to shop, but hey...it paid off.

 

[klmno]

I don't know- but that seems to have come on awful fast after being relatively stable for a while. I think I might consider that a rage more than defiance. At least, you might want to keep an eye out and see if he acts stable for a short while, then has an outburst again. If so, I think I'd call the psychiatrist before it went on too long.

 

[TerryJ2]

I thought my difficult child was the only one who butted me with-a shopping cart!
been there done that. SO hard.
I'm glad that stranger kind of helped out.
So sorry. I hope difficult child calms down enough for you to ask him what the trigger was ...

 

[smallworld]

Christy, when a tiny amount of frustration provokes a huge raging reaction, I always believe mood instability lies at the core. What are the doses of the medications your difficult child is taking?

I have to believe your difficult child has no idea what triggered his rage because he became so out of control. He is also unlikely to feel remorse because he's exhibiting "stuck" thinking or cognitive inflexbility, another symptom of mood instability.

If things don't settle down, I'd recommend a call to the psychiatrist.

 

[Steely]

Hugs.........
So been there done that..........
And all over a bottle of bleeping water. You know that was not even the real catalyst for this.

 

[Wiped Out]

Christy,
I'm sorry. I know how hard the physical abuse is to deal with. Like you, I'm always thinking well, I guess I could have done A, B, or C. Bottom line is it isn't o.k. for difficult child to hit you. It is never justified. My difficult child is starting to show some remorse but it took a long time to get to that point. At the time he feels totally justified.

It is so hard when you just don't know what will trigger a rage. I definitely would call the psychiatrist if it happens again. I like Shari's suggestion of knowing exactly what will be bought beforehand.

Sending gentle hugs your way.

 

[Christy]

Thanks everyone,

Shari your suggestion is a good one. I do this anytime I must take difficult child to the grocery store. It may have helped in this istance as well.

We see the psychiatrist pretty regularly, our next appointment is July 10th I believe. We will probably wait it out until then unless we have more violent episodes.

I don't think he is stable and really has never been to the point where he was tantrum/meltdown free for a reasonable period of time. The best we have gotten is to eliminate the violence and destructive behaviors for a period of time and unfortuantely, we are starting to see this again. Not regularly but enough that I don't want to take him in public unless necesaary and this is not an easy way to live.

Small, He's currently taking a total of 825 mg trilleptal (divided in 2 doses), 200 mg serequel, 100 mg geodon, and .05 mg clonidine (divided in two doses). The most recent adjustment was to raise trilleptal 75 mg (2 wks ago). We have hopes of tapering off the geodon as it was intended for the trilleptal to replace it but have not become stable enough to do this. The clonidine was lowered from a dose of .05 (3xs/day) to .05 (2xs/day) to .0025 (2xs/day) because it may have been contributing to an agitated, depressed mood we were seeing. I think I am going to ask the for the serequel to be raised at our next visit. Some other medications we have tried and they either worked then stopped working or had no effect are depakote (never had much effect), risperdal & lamictal (worked pretty well for about two years then stopped being effective even at higher doses), abilify (sme improvement but not much, felt bad while taking it, drooling problem and eneurisis) and many stimulant medications, straterra, and wellbutrin for ADHD (ALL BAD! for difficult child)

As for the trigger, he was probably thirsty. He has no ability to delay gratification and is very intense when it comes to having his needs met immediately. In retrospect, I should have got him the dumb water bottle but it doesn't matter. Even if he felt I was being mean or unfair or he felt discomfort due to his thirst, physical violence is not acceptable. He does not get this.

Thanks for your kind words and suggestions.
Christy

 

[smallworld]

Christy, both his Trileptal and Seroquel are low. According to the book The Bipolar Child, the Trileptal target dose for children is approximately 900 to 1200 mg, with some kids requiring as much as 1500 to 2400 mg a day.

According to my son's psychiatrist at the day treatment program he attended last winter, the target dose for Seroquel used to be 200 mg. But psychiatrists were finding that it would work and then quit. It was discovered that Seroquel is metabolized faster and faster over time so in essence the dose goes down if you're on a low dose for a while. Mania is treated at 300 to 600 mg, with some kids needing as high as 800 to 1000 mg. My son was at 800 mg and doing well mood-wise, but he was still sedated after a couple months so we lowered it to 600 mg. He's still doing great at this dose (with his other medications, of course).

You really can't judge how effective a medication will be for your child if you don't get it to a therapeutic level. I hope the psychiatrist is able to make some adjustments so your difficult child will stabilize.

 

[SRL]

For what it's worth, Geoden is a medication that I don't hear used with the little ones very often, but I think every time a child has come through the Early Childhood board trialing it, it's resulted in serious side effects. I see your son is 9 but I thought I'd toss that out.

in my opinion, four medications is an awful lot for a 9 year old. I'd be extremely reluctant to have a child that young on so many medications unless a) all other options had been exhausted and b) the psychiatrist had an excellent reputation for medications.

If he's never been stable has going inpatient to start over with those medications ever been considered?

Has he been seen by a neurologist to rule out seizure activity? We often suggest that to parents who aren't getting anywhere.

 

[smallworld]

Christy, SRL is right about 4 medications being a lot for a 9-year-old. Even if he's not "stable," you might want to ask about weaning from Geodon and Clonidine and focusing just on Trileptal and Seroquel at therapeutic doses. Geodon has been known to activate some kids with mania-like side effects.

Our psychiatrists follow a few simple "rules":

Make one medication change at a time.
Start low and go slow with medication titrations.
Bring one medication all the way up to a therapeutic level before making a decision about keeping or discontinuing.

Good luck.

 

[allie80]

Mine is 3.5 and acts that way so my heart goes out to you. I feel so out of control and I feel embarassed and ashamed that I have no control over him. No amount of 'prepping' helps. He doesn't react to promises or if you do this, you will get this...
I think you did the right thing though. I mean, where do we draw the line at giving them what they want or giving them reasonable options...but I guess there is no reasoning with them at times.
I'm sorry, I am just at loss with everything.

 

[Christy]

Thanks again for the practical and knowledgable advice!

I agree four is more medication than I would like difficult child to be on. This is the combo he ended up with after a psychiatric hospital visit in March. I have heard some not good things about geodon but actually this medication made a difference when he started taking it. It replaced depakote that was not helpful even at theraputic doses. however like so many medications weve tried, it stoppedbeing as effective later. At the time of his psychiatric hospital visit due to wildly agressive rages, he was taking the geodon, serequel, and straterra. Thinking backwards, we realize that the increase in agression corresponded to the gradual increase in straterra. We didn't connect it because we did see a decrease in ADHD like symptoms and by the time we realized it, he was out of control. The psychiatric hospital visit was a terrible experience with daily rages, restraints, and PRN medications. I would like to avoid another visit if at all possible. I will push to begin tapering off the geodon while raising the trilleptal and serequel. The clonidine is currently controling the hyper symptons (mania) but hopefully if the other medications become more stabalizing then we can lose that medication as well. We are already on a very low dose.

He had blood tests done two weeks ago and trileptal is in the theraputic range but has room to go higher if I am reading the results correctly. He's at 16 and the range is 10-35 ug/ml. There were a couple of other things about his bloodwork that were out of wack so I will be discussing these with his psychiatrist and regular doctor as well. But since I am posting, let me pick your brain as well. These were the flagged items on the report...

Thyroxine (T4) 3.9 Low (range 4.5-12) (T3and TSH in normal range)

Lymphs percentage 52% high (range 28-48) (Actual # of Lymphs in the normal range just high in percntage to other tyes of cells)

Lp(a) cholesterol 24 high (should be less than 10) All other cholesterol #'s in good range.


I am having a hard time playing internet doctor and understanding these results so if anyone has insight, I 'd like to here what you think. I plan to discuss the results at appointment on the 10th and schedule a regular physical with regular doctor following psychiatrist appointment.

Thanks again!
Christy

 

[Sara PA]

I know some doctors use them but I wasn't aware that there had been a therapeutic blood level established for the treatment of bipolar with Trileptal. I do know that it is widely believed that the therapeutic dose based on mg/kg/day for bipolar is generally higher than for seizure control. What dose is he on?

Low T4 and normal TSH could indicate a pituitary issue. At the direction of the hypothalamus, the pituitary gland controls the hormonal response to stress (and everything else, for that matter).

by the way, what is the TSH level? And what does the sheet say is "normal range" There are differing ideas about what is the "normal" range.

Hmmm, suddenly I'm wanting T4 levels and pituitary exams for a lot of our kids....

 

[Christy]

Sara,
Thanks for responding. My son is curently on 825 mg of trilleptal. Interesting, I will ask the psychiatrist about the difference in levels with bi-polar vs. seizure control.

His TSH is 3.152 uIU/ml the normal range is listed as .370-6.000

His T3 is 32% (normal range is listed as 24-33)
Freee Thyroxine Index is 1.2 (normal listed as 1.2-4.9)

I really don't know anything about thyroid/pitutary/hormonal issues and this is the first blood test where anything has been out of the normal range so I am anxious to find out what this means.

 

[smallworld]

My understanding is that Depakote is dosed by blood level, and the therapeutic level for bipolar disorder is higher than the therapeutic level for seizure control. Lamictal and Trileptal, on the other hand, are dosed based on clinical response. I know our psychiatrists and neuro won't go above 400 mg Lamictal for mood stabilization. My son is stable at 400 mg Lamictal (with his other medications) while my daughter is stable at 175 mg Lamictal. I gave you the dose ranges for mood stabilization with Trileptal in my post above.

I don't know anything about thyroid function. Sorry!

 

[Sara PA]

For seizure control, the target dose for children 44 to 64 pounds is 900 mg/day. Heavier kids would have a higher target dose. How much does your son weigh?

And kids clear the drug from their system at a higher rate than adults do. How close to taking his medications was the blood test done?

 

[Christy]

He's 72 lbs.

The test was done at 9:00 am with his last dose at 9:00 PM. psychiatrist instructed us to hold off the AM dose until after the blooddraw.

 

[Big Bad Kitty]

I have no advice, just sending hugs.