I'm sure that many of you have heard bits and pieces about TJ's health this fall. Some of this will be repeat information but I think it will be best for me to start from the beginning......
Friday August 15th it started. During typing class, TJ noticed that he was not able to make his left hand hit the keys he was trying too hit. He held up is hands and noticed that his left arm was "jerking" uncontrollably in a fairly slow rhythmic motion. Jerk, jerk, jerk.... the school nurse had no clue what was wrong and no one really knew what to do other than give him a Tylenol and try to get him through until the end of the day. He wasn't in pain but as the day went on his arm started to go numb and it got cold to the touch. Very strange. I took him to the family doctor as soon as he got home from school and he had no clue. "I'm stumped" were his exact words. I asked him to try to find a neurologist who could give an opinion and we went home not knowing any more than what we did when we started.
On the way home from the doctor I called our former neighbor, Larry Formanek who is a chiropractor in Knoxville. I thought that maybe TJ might have a pinched nerve of some kind that could be causing the problems. Larry agreed that it could be a pinched nerve and suggested that we find a local doctor who could take a look (thanks Larry!!) . TJ's jerking stopped for a brief time that Friday night but started again Saturday afternoon and he slowly started to lose all the feeling in his arm from the elbow down. I wasn't able to find a chiropractor on the weekend......Monday morning came with no change and we decided to consult with the neurologist just to rule out the possibility of a blood clot or stroke or other equally frightening things. Lucky for us a new doctor had recently moved to town from Houston (Dr. Chris King) and he was able to see TJ right away.
Dr. King admitted TJ to the hospital and ordered several tests (two MRI's, an EEG, spinal tap and blood tests) with all results normal. The only progress that was made was the discovery that an anti-seizure medicine given in an IV stopped the twitching in his arm. Dr. King thought that he was possibly having what is called a "focal seizure" but since it was highly unusual, he just was not sure. Referred us to Vanderbilt University.
I was NOT impressed with Vanderbilt. Over 100 kids in the waiting room...doctors too busy to pay attention. They asked us to bring TJ back for a week of in-patient testing during TJ's fall break the week of October 6th but really did not think that what we described was a seizure. They had no clue of what was wrong BUT they doubled his dose of the seizure medication anyway and made him as sick as a dog. Does that make sense? Nope, it didn't to me either. Like I said...I wasn't impressed. We decided to continue with the lower dose Dr. King had prescribed until TJ could have the additional testing done at Vanderbilt.
About a week before the test was scheduled, TJ completely stopped taking the medication and didn't tell anyone that he had made the decision to do so. (teenagers!!!) When we found out that he was not on the medication and the arm-jerking had not returned, we (parents and Dr. King) decided to let him go without meds to see what would happen. Maybe it was not a seizure?
This was the perfect opportunity to try a chiropractor and that's exactly what we did. I found a highly recommended office and was so very pleased to get a diagnosis--Thoracic Outlet Syndrome. When I looked on the internet, all of TJ's symptoms could be found related to this syndrome. We were so very happy......and so very relieved to FINALLY have someone tell us that they knew what was wrong.
The bubble broke on October 31. On the way to a speech team tournament in Cincinnatti, Ohio, TJ had a grand mal seizure. Joe drove 8 hours to pick him up that night to bring him home and we watched and worried over him all weekend. Dr. King put him back on the anti-seizure medication and asked us to bring him in on Monday. Monday morning TJ had another seizure at school--this one was worse than the first and he stopped breathing for a time. Luckily, he was able to feel the episode coming in time to get out of the classroom and to a safe place before it hit. That is also highly unusual and we consider it to be a blessing.
We still do not know what is wrong or what has caused the seizures. We are currently trying to find a doctor who can do a higher magnification MRI that will be able to give better results than what we can get in Murray (Vanderbilt wouldn't do the 2nd MRI even though they had the capability). TJ has spent the past several weeks taking anti-seizure medications and having a VERY hard time with severe side-effects. Lots of vomiting, confused thought processes, the room "spins" for hours and he usually sleeps about 18-20 hours a day. He has not been able to go to school since November 2 and now has a teacher who comes to him 2 days per week so that he can try to get caught up on his classes. As time goes on he is able to tolerate the medication more and more but as he gets better....they increase his dose and then it starts all over again. (Apparently he needs to take a "minimum" dose in order to prevent further seizures--you have to build up to that "minimum" over time). It has been a very difficult few weeks but TJ has tolerated all of it with an amazing attitude and without complaint. I know I would not have done as well if I were in his shoes! We are hoping and praying that he will be able to go back to school in January and that we will find a diagnosis soon.
