Sunday, August 04, 2013


The past couple of months we have noticed signs that Nick is starting puberty. It has been a challenge with his behaviors to say the least. If you thought puberty was rough with a typical child, with a kid that cannot tell you how he feels, it is even more of a challenge.

Not sure where we left off, but will recap what has happened this summer. Nick had his EEG in May, and that came out normal.He was having a good week that week-the week prior his neurologist had increased his depakote and we usually get a few good days after that. This time we had about two weeks worth of good days. After that, the jerks/twitches/stares started coming back. I sent in a video to the neurologist who then stated that he did see some seizure activity and his depakote was increased yet again. We were told to follow up with another specialist. So we set that appt.

We saw that doctor on July 22nd. The appointment was at 9:30am, which means we had to leave the house around 7am just to get there in time. Trying to get out the door with Nick at that hour is a feat in itself. I packed everything the night before. 17 pages of notes, 2 CD's of videos the school managed to get, my own videos, changes of clothes for Nick and extra diapers and wipes. Now I know that we did not even see the doctor-but her nurse practitioner. The nurse proceeded to tell me that everything is behavioral. Even jerking and twitching, even when he is happy one second/pissed off and smashing his head against the table or wall the next. Even when he falls asleep for 2-3hours after longer is all behavioral. I was told a number of insulting things like "we need to be tougher on him", "I have no idea how you have stuck it out for 9 years", and "You might want to put him in a hospital for a couple of months so you can have a break". That was a gem! She blamed everything on autism and told me it was just going to get worse. Nice huh?? She looked at the videos for all of two seconds, and dismissed everything I had to say. Well guess what? It has been two weeks-we have raised our expectations of him-and we are still dealing with this. SURPRISE right??!! The next Monday I met with his BCBA and the RN that works with him in school. They also think that this is not all behavioral and that something else is going on. They told me to follow my gut and keep pressing to find out. Have not noticed any major jerks for about a week, but the other things are still there. The sudden aggression, the teeth grinding with head shakes, and the self injury. I don't know whether we are just going through a good period and he is not having jerks, or that they have really gone away. It is hard to tell. All I know is that he is still volatile, but at least he is not having head jerks in which he ends up biting his mouth all up. As far as medication, we cannot increase on anything right now. He is at the max dose for his weight. I do know that he is much worse in the mornings after going all night without his medication, and it takes a while after the first dose to see any reprieve. Until then, it is Jekyll and Hyde for hours.

It has not been all bad though! We finally closed on our house and should be getting the keys any day now. We are excited to finally be moving soon but also I hate the whole process of actually moving! If I could magically have everything done and set up I would. There is so much that we have to start doing next week. Getting boxes and packing things up, getting things straightened out with the school district, all I want to do is just crawl in a hole.

In other news, we have started receiving wrap-around services! We get 20 hours a week with a home support staff. They are here to help with behaviors at home, they take him on walks, and they come with me to help with him while I run errands. Yesterday we took him to the park, and then got lunch from Wendy's. We have gone to the grocery store, K-Mart, and on a trail walk. Taking Nick out in the community is hard work but necessary. We have had this service for just about two weeks now and Nick has taken to them really well. We also have 3 hours a week when a BCBA comes into the house and we discuss his behaviors. We have only seen this person once so far. so they are still trying to get to know our man Nick. We have the therapist here 6 days a week for a couple of hours each day. Next we are working on respite care.

We have a couple of appointments coming up, but they are just routine check ups with the dentist and pediatrician. Nothing out of the ordinary. We will see if the dentist says anything about Nick's teeth grinding. I am sure they will notice the effects it has had. I also plan on showing those videos to his pediatrician at our next visit and see if they can recommend another neurologist. All I want to know is what these things are. That's it.


Christy Morrison said...

I think you are right to get a second opinion and I am glad you are sticking with your gut feelings as his mother and going forward to get one. No one knows him like you and with the rude, dismissive care you received from the first neurologist it sounds as if her mind was made up before she even sat down with you. I hate that there are doctors out there that are like that but they are no better than anyone else. They have prejudices and they can be wrong. In the military we have had to fight on more than one occasion to say, "No, there is something worse going on here!"...and we have always been right. You are such a strong person and I know getting a second opinion is the right decision. Stay strong, super mama! I love you.

gskyhawk said...

The in-home care for Nick will greatly help you, Amy. I'm glad it is available. Also, I'm so happy to see that you have a new home!

My son's medication is at its limits, too. His psychiatrist had prescribed Wellbutrin (Bupropion) to him but it has yielded more complications. Instead of helping with reducing OCD behaviors of breaking toys and tearing magazines, he became more anxious and ruminated every day about his bad behavior. He does the property damage on impulse, then he feels guilty about it later.
I'm learning more neuroscience research about how different his brain is to a non-ASD brain. The main difference is the hardwired socialization and communication glitch. Behavioral therapy has definitely helped him communicate, thankfully. I worry about how he is developing academically - it seems he doesn't see words the way you and I do. He may have a sort of a processing problem specifically with reading. I hope this can be overcome. I have him scheduled to undergo a series of psychological tests at Diagnostic Center of Los Angeles.
Research into medication for certain negative behaviors is still in its early stages, so we shouldn't get too anticipated with results.
Be involved in your favorite hobbies and interests and pamper yourself - we are doing the best job. God Knows We're Worth It.