Friday, October 4, 2013

Still Standing and Hanging In

Yesterday afternoon I came home to find my husband on the phone with our pediatrician. The doctor was returning a call hubs put in about antibiotics. Colin recently had a blood test to see if he had any signs of the strep virus that causes Pandas. While the test results came back negative, we were wondering if there were any other bacteria that could be causing my son's condition and if antibiotics would help.

Our doctor replied no, however, he had some news. He reported back that there is interest in our case. There is a researcher (psychiatrist?) at Children's Hospital that wants to see our son. Her assistant should be contacting us to set up an appointment.

I wish I had a chance to speak with our doctor, so I could get the information first-hand. Things get lost in translation. It does appear that our pediatrician has been talking to Psychiatric department heads at both Ohio State and Children's Hospital. We know that there are other cases of Misophonia in our area but not sure the extent. From what I can tell from my support groups, Colin is a pretty severe case and a bit unusual. I've been pleasantly surprised at how supportive our pediatrician has been.

This was the one bright spot in our day.

Cloudy with a Chance of Rages

The morning did not go so well. Colin was more triggered than usual for the 1 mile ride and kicked Dad's car door before heading into school. There was no cross country practice after school so he was picked up at 3:30. Hubs got to enjoy raging all the way home that continued for some time. When I called from work to get the evening plan, I could hear yelling in the background.

Our 15 year old had a wake to go to for the friend who had died suddenly last weekend and piano lessons afterwards. Colin decided to skip swimming due to an ear ache (wax or water ?). I used my middle-son as a middle-man to communicate for me. I needed to know if I could get Colin to a doctor or nurse to have his ear looked at. I was told no, it was probably wax.

Shortly after my husband and 15 year old left the house, the lawn crew came to our next door neighbor. This is the source of our worst rages. No room in our house can shield our son from the sound. We quickly escaped the area in my mini van. Colin wanted to go to the movies but I went to Dairy Queen instead. He refused to leave the car and did not want anything. I bought a Blizzard on the off-chance he would eat it and some ice cream for myself.

I endured death threats and curses all the way home. My husband would be horrified that I responded with questions such as how & where?(it's going to be a surprise!)  and threatened to take my miso-son with me when told to "die in a hole". I don't think Colin really hears me during his rages.

Colin spent the rest of the evening watching t.v. in the dark basement. He likes to chill out alone and with the lights out. Eventually he came upstairs to his "B&B". We need to figure a way to install a hidden camera in that bathroom. I'd love to know what goes on.

The last few nights when I opened the door a crack to turn off the lights, he was not lying on the floor. It would appear he was standing up, leaning against the counter. I have no idea if he is trying to sleep standing up or if he is getting any sleep at all. Tonight (3 a.m.) , shortly after I turned out the lights, they came back on. I so want to go in and see what is happening but that is a huge risk for the rest of the family. I would almost certainly trigger a screaming rage and the other boys need their sleep. I am baffled as to how Colin can seem to function as well as he does at school.

At this point we are barely holding it together. We have a son who can not talk to us or even be in the same room. He will not eat food we have either prepared or touched (take out). He eats huddled at a corner of the kitchen  counter. From the moment he enters the house, he strips to his underwear, puts on his headphones and wraps himself in his blanket. This is our new-normal.

Help can not come fast enough.

We are a work-in-progress!!!!!!

1 comment:

  1. So glad to hear that your pediatrician is supportive and not just brushing you off. Hopefully he is your doorway to insight and answers!