Back to the drawing board with behavior

We had a fun Friday (insert sarcastic tone here). Hollis was a behavioral nightmare all last week and it came to a big frothy head on Friday. She wouldn't eat. She wouldn't drink. She would hit, scratch and bang her own head. We don't like any of these choices. She also ended up with a low grade fever, so we determined the best course of action was to see if this behavior was related to an illness.

Brought her to the pediatrician, and Hollis beat the living daylights out of me the entire time we waited (a grand total of about 10 minutes). Continued the beatings while I explained to the doctor what was going on. As I was trying to corral the fists of fury, Hollis made her way over to the doc and belted her! Lovely child. The doctor then said she wasn't going to be able to do an examination on her in this state, and sent us to the emergency room where they could sedate her if necessary to get the examination. Oh goody!

Off to the ER we went, fully prepped for an awful time. Daddy joined us shortly after Hollis and I arrived. For entertainment, I ordered up a blood pressure cuff, coincidentally from an old childhood friend who works at the hospital, since I've discovered that Hollis thinks these things are hilarious. The ER doc was fully prepared for a wild child, courtesy of a phoned in warning from the pediatrician, but of course, Hollis decided she was going to be sweetness personified. After her examination determining that Hollis had no fever, no sign of strep throat or ear infection, we came to the conclusion that it was side effects from her seizure meds and the lack of behavior meds that were making her so aggressive, irritable, self-injurious, and generally miserable. A personal consult from her neurologist who came to see what the hullabaloo was all about confirmed our suspicions.

So, the bottom line is, if it ain't broke, don't fix it. We went off her original behavior med, Risperdal, which was very effective, but we were searching for something with fewer side effects. What we ended up with was trying a new med, Abilify, which turned her into Godzilla. We all agreed after this failed venture that Risperdal was just dandy, and we'll just stick to what we know.

Off behavior meds for a couple days = happy?

We decided to give Hollis a break from her behavior med rollercoaster for a few more days to see if we can manage her without them. She's still very aggressive, but is listening more than she was on the last round of drugs, and is 1000% more alert and happier. That last one just was WRONG!

Today it was about 90 degrees, so we spent some time outside doing "summertime" things. We went to the park, which includes an enclosed area for skateboarders, and Hollis was just thrilled to see all the boys there. She could have stayed there all evening drooling over the skater boys.

Not this one either...

The latest behavior med Hollis went on made things worse. She has done nothing but beat the living daylights out of her poor PCA and us all week long. Our behavior management tactics have failed miserably: when she hits, she is supposed to go into her "time out" room. Well, Hollis has decided that she likes it in there, and will put herself in the room willingly. Not much of a threat anymore. The best part of this miserable comedy is that her PCA realized the time out room wasn't working, so she made her sit in a corner, just like we did in the old days. Hollis didn't like that much, but when she was done with the corner and told she could get up, she walked over to the time out room and closed the door behind her and stayed in there for awhile. She is such a smart little devil, and knows how to press all of our buttons! Thank goodness school vacation is over and she'll go back on Monday. We'll be on a different behavior med by then, and hopefully she won't be ready to go ten rounds with her teachers.

Groucherella

Hollis has her grouch on, big time. She went off one behavior med, and we started her on another. We waited to see what her "baseline" was off behavior meds entirely: it was scratchy, bitey, hitty and generally nasty. Not too nice to live with that, for one and all. Today we started on a different behavior med, and so far, she is whiney, grouchy, antsy and still scratchy, bitey and hitty. Never a dull moment over here!

Tweaking the meds

We're trying to get the right mix of anti epileptic meds to get seizure control and minimize side effects, which is quite a tricky balance. Hollis has been very tired lately and also has some tremors, both of which can be side effects of some of her meds. She's had a few blood draws over the last few days to check her levels to see what's going on in the whole system. We're fortunate enough to have a great neurologist who goes into great detail about all the interactions, how the drugs break down, flow through the blood, get stored and released in fat, make their way up to the brain etc. I always feel like a med student coming out of one those appointments. Hollis has 3 or 4 doctors who are like this, that give us a full picture of what we're dealing with in their particular area of expertise. I am always grateful that these men and women will take the time to do this, because we have certainly run across others who are anxious to get us out the door. The more we know, the better we can care for her overall needs.

6 month follow up

We had our 6 month post surgery follow up (OK, a little bit later than 6 months) with Hollis's neurologist in Children's Hospital. He was pleased with the fact she only had 3 seizures in the time since the surgery, and we are too, we just wanted to know if we had to be concerned about having any more surgery: thankfully, he said we're done. We are making some adjustments to her meds, because she's gained about 30 pounds since September - that's largely due to another one of her meds, notorious for weight gain.

This week we also had her Rehab Physician (a.k.a. Physiatrist) appointment, to assess her neuro-muscular situation. Her gait is definitely worse than what it was prior to the brain surgery, but not by a lot. She's getting a new adaptive "girdle" to help give her right leg some support and a bit of a twist, because right now, it points outward about 90 degrees. Should be interesting to see how that works!

Psych

We went to Hollis's psychiatrist today to get the lowdown on her behavior issues (being wildly hysterical nonstop, inability to settle herself down, appetite for destruction, sleep disruption, angry outbursts with aggression, etc.) The behavior has changed so much from the time of the surgery, we weren't sure that it was something that was always there, and was tempered by the seizures, or whether the combination of her meds might be doing something new, now that there are no seizures to contend with.

Dr. W. felt it was probably a combination of her mental status changing after the surgery and now having the wrong psych med for her behavior. Prior to the surgery she was on an anti-anxiety med, as we had guessed that a lot of her outbursts were related to being afraid of various situations she was in (claustrophobic rooms, new environments, doc's offices, etc.). If that anxiety is not as much an issue anymore, then perhaps the medicine is what is causing all this new bizarre behavior. So, we're going to wean her off the anti-anxiety med, and see how she does. If things don't improve, or we still are having the off the wall hysteria and aggression, we'll try another med to see if we can better manage her behavior, because she isn't responding to punishment, avoidance, or praise techniques.