Tuesday, January 31, 2012

Looking toward the horizon

Today I met with Dr. Johnson at OHSU to discuss her recommendations for Bryce. First of all for the last few weeks we have been meeting with her and she has been talking with Bryce to get a better feel for what's going on with him. Last week Bryce had blood work done, just some simple things like Vitamin D and Thyroid levels. He has had done what is called a Strep titer. This is looking for any bacteria that Strep carries lingering in his body. When this happens and is untreated it can cause high anxiety and involuntary movements both of which Bryce has. These movements happen when Bryce is excited, his hands go up in the air and his face contorts in a small way. This has been going on since he was about a year and a half.

So his Vitamin D was very low, she started him on 2000 IU a day. Also his first strep titer came back and it was elevated. Normal levels are 166 and his was 197. Good news is that the second round of the titer came back not elevated. So what this means is there is bacteria somewhere in his body, he could just be a carrier of it. Right now the only thing we can do is watch him closely. He will have bloodwork done every 3 months to check his levels. Also if at any reason he complains of a sore throat OR if he has a temp above normal, we take him in to get tested right away.

Bryce shows significant signs of anxiety, social anxiety and seperation anxiety. We also thought for the longest time that Bryce was having insomnia at night, because it would take him over 2 hours to fall asleep. What Dr. Johnson believes is that since Bryce has such a high amount of the seperation anxiety, that he is coming out of his bedroom because he needs to make sure we are there, that we have not left. He needs to touch us, which is why he constantly asks for hugs and kisses when he comes out of the bedroom. What is happening is that when he lays down, his mind starts racing and his anxiety builds up. I have this same problem actually and I do have a prescription for medication that when this happens I can take that calms my brain down and helps me fall asleep, it is truly an amazing drug for someone who has this horrible disease.

We will be increasing Bryce's anxiety medication and adding a new medication that will help calm him down at night. On top of the OTC Vitamin D, he will also be taking an Omega 3 supplement that will help with the focusing issues as I have taken him off of all his ADD medication. Bryce will start a congentive behavioral workshop that will help him learn to overcome some anxiety and teach him how to deal with certain situations. Ryan and I will also take some courses to help us learn how to communicate with Bryce when he has meltdowns and how to help him as well.

It's a long road ahead but again we are taking it one day at time. Thanks for listening.

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