A Diagnosis!

Yes, you read that right. We finally got a diagnosis for Ty! You have no idea how much of a weight this is lifted off of our shoulders, to finally have a name for what has been going on for the past year.

 For those of you who are on the wth is she talking about wagon; Last February Ty woke middle of the night screaming for me. When I got into his room he way laying on his floor unable to get up and calling out "mommy". When I would try to move him into a vertical position, sitting up or standing, he would immediately, begin jerky movements throughout his body and lose control of his muscles. So we headed to Texas Children's Hospital. In the ER no one seemed to know what was going on with him. So they told us to keep him laying down, since he seemed find as long as he stayed that way, until they could consult with more doctors. We finally saw a neurologist who diagnosed him with Acute Cerebellar Ataxia. It made sense at the time, he was doing what the description of it said. They only thing that didn't make sense was nothing had happened to have caused him to have this. No recently illness, no head trauma, ect, but we went with it. They did a CT scan, and it came back normal. He continued to do this constantly each time he went into a vertical position for days. Then all of a sudden he was completely normal. We were discharged from the hospital, and told its not something that would repeat. And all was fine and dandy, until this past November, when he had another attack. Again in the middle of the night, same thing all over again. Except this time I just called the E.R. to see if they wanted us to bring him in, and by the time they called us back 4 hrs later he was back to his normal self and asleep. His episode only lasted about 20-30 min and all seemed fine, so we chose not to take him in, and just call his pedi in the morning.  So, we went into her office the next business day and she set us up with a referral to a neurologist. I called to make an appt with the neuro and got one for March 26th, 2012. Yes 4 months away! But it was the soonest they had an opening so we took it. Ty's pedi wasn't took pleased that it was so far away, so she talked with the neuro, and they agreed that as long as he didn't have any more episodes between now and then, that they were comfortable waiting that long. So during the wait time, we had test after test run. MRI, EEG, blood work, ect ect ect, all coming back normal. Well all was going well until the end of January 2012. Yup you guessed it, he had another attack. Same thing again, lasting 20-30 min, and this time loosing control of his bladder and bowels. We called the pedi and she talked to the neuro and they agreed an emergency appt was needed. So I call to make an appointment, and they had no openings between then and when his appt in march was, so they put us on a wait list for a cancellation. Luckily someone cancelled and we got in on Feb 7th.

So now to the diagnosis. The neuro saw him, asked questions, evaluated him, and then went to talk with another Dr. 3 Dr's came back into the room to talk to us. They diagnosed him with a form of nocturnal epilepsy. It's a rare diagnosis, but 60%-70% of kids who have this, outgrow it. They said they believe the reason that all his tests were coming back normal is because his is not a centralized seizure like most, instead it is just on one side of his brain. So unless they are doing a test while he is having one, or within an hour after him having had one, then all the tests will continue to come back normal. They put him on some seizure preventative medication, Trileptal, to help control his seizures. They started him off with a low dose, and if he continues to have them, then they will up his dosage. So lets hope and pray that this medication helps him, and he never has another episode again!


And on another good note, i found an app for blogger on my phone :)