I talked with the doctor from Boston Medical Center last Friday and he wanted some additional information about Kellans episodes, which I emailed to him. He then emailed me Monday and said Kellan "almost certainly has" benign paroxysmal torticollis. That combined with my 99% sureness that he was never having seizures is enough for me to breathe easier and say with confidence that this is BPT. This is a relief for me in that I am glad these are not seizures. But the downside is that there is no cure or treatment for BPT. Dr. Rosman assured me that it almost always goes away by the time they are 3. He has not had an episode since Christmas Day. Dr. Rosman did say he would like to see an EEG during an episode just to eliminate that small possibility that these are focal seizures, which he wonders about because of the eye deviation during the episodes, which he said isn't typical of BPT, although on the blog Justin found, several of the parents describe similar eye deviation. Our local pediatrician is in agreement with us on this and just thought that if he begins having numerous episodes then we would try to go to the hospital for an extended EEG, like they suggested in Denver. I am so grateful to Dr. Rosman. For him to have helped us like this is truly amazing, I know how most doctors are!!
So Kellan has been off his anti-seizures meds for a couple weeks now and is doing really well. Cooing more, smiling more-I even got a picture! I took him to Denver last Thurs to see the physical therapist that specializes in treating kids with Ds. She is amazing!! She got Kellan to reach for a toy! I was so proud of him! I videotaped most of our therapy so Justin could watch, and so I could remember what she wants us to do with him. She would like to see him monthly until he walks, then much less frequently, like every 4-6 months. We'll have to see with insurance and all, but I sure would love to take him to her every month.
Justin and I meet with the genetic people from Shodair next week. Not sure what all they'll tell us, but should be interesting. I got on the computer at work and printed the chromosome sheet they did, and sure enough, there it is, that little 3rd one on #21. Weird to see it.
I hope you enjoy the picture. Kellan is a great cure for a bad day!!