He's BACK!

I couldn't be more thrilled to inform you that the old Ben we know and love is BACK! I attribute his previous bad behavior to the Valium rebound and then to the ADHD meds. Not to say Ben is behavior free now, just back to his previous, manageable behavior. He could probably benefit from a medicine to help with that, but I won't be starting anything any time soon after seeing the bad side effects we saw trying to find something that works for him. Just not worth it right now.

Bad Medicine?

Ben didn't do so well on the medicine he was given to help with his behavior. Actually, when the dose was upped on Friday he started doing down right horrible. In the meantime, he has developed this twitch in his shoulders that seems to be bothering him. It is kind of like a tic, but also makes me wonder if it is a seizure. We have stopped the medicine as of last night and Ben is doing much, much better today. Still has the twitch though. Going to give him some time off meds to see how he does before deciding if we want to try anything again.

Behavior Plan

Ben's behavior continued to worsen and he was really at danger of hurting himself. He was pulling out his trach daily and hitting so hard he was causing himself to bleed. He saw his Special Needs Pediatrician yesterday and after a full exam and an xray, it was determined that he had a large amount of stool backed up in him. That combined with a possible rebound effect from being sedated for so long is speculated to be the reason for his outbursts. He has been started on every other day enimas going forward to prevent this from happening again since it seems to be an ongoing issue. He has also been prescribed an ADHD med to help him recover more easily when getting upset instead of getting hung up on it. We also have a controlled sedative to give in a situation where he is out of control and we can't get him calm. Hoping this helps. Before even getting the medicine or the enima though, he ended up having a wonderful evening and had a bowel movement on his own. That is great news but makes me question starting the meds. we did anyway and will keep you updated on how Ben does. There is a chance that the ADHD medicine might not do anything.

Inspector Ben

Ben has developed a love of inspecting things. If there is a hole in something, odds are Ben has found it and spent many hours looking through it. His favorite is the teeny, tiny hole in the red block from his shape sorter. And it just cracks me up when he inspects me through the hole.
And I found these binoculars at a garage sale for 50 cents and knew they would be right up Ben's alley.

Checking out to see what I look like through these too...

Couldn't pass up a toy magnifying glass for our little inspector. This picture makes me laugh for two reasons. First, his eyeball is HUGE! Second, it captures him doing his sophisticated leg crossing that he does all the time.

Eye Update and Surgery

Ben had his final office exam and his eye appears to be healed. However, the Opthamologist feels a thorough exam under anesthesia is in order to make sure Ben didn't suffer any permanent damage or develop glaucoma due to the injury. This thorough exam is necessary because Ben can't tell us if something is different with his vision or if he has any pain. I'm also anxious to hear the results of this exam because I've been questioning if any of his recent behavior issues could be due to a change in his vision. Since Ben will also be due for his annual trach scope, we have coordinated that to be done at the same time. He will also have a handful of blood work done to make sure all is good with his nutrition, thyroid, organs, etc. And last but not least, Ben hasn't had a head CT in a long time so we are adding that too while he is under. It will be nice just to know that everything is stable with the pressure in his brain, especially since he is doing so much head hitting. All of these will take place on Wednesday, July 27.

And so the behavior problems begin...

We have been struggling with Ben's self hurt behavior (hitting his head on the floor and using his fist to hit his forehead) for a while and it has actually been affecting his ability to progress at school. Recently, it has gotten much worse. I've been warned from other CHARGE families and read posts on the CHARGE Listserv about the challenging behavior issues they face, but I had no idea the emotional tole these behaviors put on a family. I would honestly say the behavior issues are much more difficult than the medical issues of CHARGE. Seems that Ben responds best to ignoring the behavior, but for his safety and to avoid a repeat of the eye injury, we were told we had to stop the behavior. So we started putting arm restraints on him, putting him in bed and setting his visual timer for 3-minutes for a time-out. This only made matters worse to the point where he was self-hurting all the time with no improvements. He was actually getting more hits in doing this than he was from ignoring the behavior. So we are back to ignoring the behavior.
We are also going to the doctor to make sure nothing else is going on medically to cause the increase in bad behavior. A referral has also been put in for a helmet to keep him safe. And the doctor is going to discuss some medicine options that may make him less agitated.