I have decided to share more about his condition, because I do not feel that my words are enough for others to realize how serious this is. And I feel that awareness needs to be brought to this condition. Dystonia is the involuntary movement of muscles. In Silas, it comes in a few different ways.
Our first experiences with Silas' dystonia were in the form of drug withdrawals the night we took him out of the orphanage. As the days went on, these got worse. During our last layover in Chicago on the trip home, Silas actually turned blue because he was in such pain. With dystonia, anytime Silas' body is under ANY kind of stress, the result is dystonic episodes that cause painful opistotonic posturing. These can best be described as strong muscle spasms that cause his body to arch backwards. Here are some videos from his hospitalization in December 2012. Doctors had no sense of urgency to relieve his pain, so I started video recording the episodes.
He has hypertonic extensor muscles because his body is constantly extending (think a plank position.) He has strong pelvic thrusts that are constant. This really creates a problem in his wheel chair because His heals will rub the footrests causing his heels to have bruises and skin breakdown. We have duct taped pool noodles around his chair, but his tone is so strong he just kicks it off. We have been fighting with the wheel chair rep to get a dynamic chair and he was finally fitted for one about a month ago. This chair will move with him instead of him rubbing against it.
This video is an example of the constant extension of his legs:
His Chair with the pool noodles both zip tied and duct taped:
In his wheel chair, he can have so much pain that he actually breaks out in a sweat as seen in the following pictures:
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Silas can not endure long car rides. We have yet to figure out why but more that 45 minutes in a car causes dystonic episodes, as seen in this video.
As I said ANY time his body is under ANY stress, it triggers his dystonic episodes. If he is getting a cold, is over tired, is constipated,upset because he wants to be held etc. Last week he had a cold. He woke up at 4am screaming and thrashing around like a fish out of water. I tried extra muscle relaxers, holding him, nothing worked.It went on all day until he fell asleep that evening.
What is being done to help him?
We have been to several specialists over the last year and 4 months. It has taken many to figure out what exactly is wrong. Several medications have been tried. He is currently on 8 different medications. The next step is Deep Brain Stimulation surgery, which he is scheduled for in June. We were under the impression that he would be having this surgery much sooner, but that is the soonest he can get in. We may look into going out of state in order to have it done sooner, if we can. We hold him A LOT because it helps him with the pain.
Please pray for our Silas. He is in a lot of pain every day. And that this upcoming surgery will help.
