CT Scan

Annalise had her CT Scan today. The neurologist was looking for calcification on the brain which would be a huge indicator of one of the types of Leukodystrophy. She was suppose to be at St. Joseph's hospital at 7:30 this morning. Since I was still running a fever last night, I knew I shouldn't take her, but we have already had to reschedule this once before. Luckily John was able to juggle his work schedule a little bit and take her in. I stayed home and got Jacob off to school, then loaded the others in the van and drove up to the hospital. The plan was that John would bring her out to me when she was finished and then he could go straight on to work. The kids and I got up to the hospital around 9:00 and they hadn't even taken her back yet. She was finished about 11:00. So we just hung out in the van in the parking lot for a couple of hours. It was really strange not being able to be in the hospital with Annalise while she was going through this. I'm glad it worked out that John was able to be with her.

Dr. Narayanan had wanted me to let him know when she had finished the CT Scan so that he could look at it. So, when we got home I went to call him, but realized that it was during their lunch break. So I fed the kids and put a very cranky Annalise down for a nap. I decided to lie down with Bryce for a little bit and ended up falling asleep. When I woke up, I was going to call the Dr, but decided to check my email first. Sure enough, he had already looked at the scan and emailed me with the results. He is the most awesome doctor! I love that he is so quick about these things! Never again will I let a doctor tell me it will take weeks to get results from these type of tests back, because now I know better. They can see them almost immediately if they want to!

Once I got the email, I forwarded it to John. Here is a copy of that email:

Hi Mrs. Clayton:

Annalise’s CT looks OK – no calcifications.

I’ll meet you next Monday for her spinal tap – what time are you getting here?. We did not collect blood from her for the neurogenetics study, even though we did get all the paperwork. Shall I get two tubes of blood from her at the same time? We were also going to do gene testing on her for Aicardi-Goutieres syndrome.

I did ask Dr. Hyland about measuring creatine in CSF. They don’t do it.

He suggested that the best way is to measure creatine and guanidinoacetate in blood (for GAMT deficiency), and creatine in brain my MRspectroscopy for creatine transporter defect.

Vinodh

As you can see from the email, there was no calcification, the CT Scan was fine. Good news, but still leaves unanswered questions of course.

I wasn't going to add his email here, but I decided to because of something John just said as we were talking about it. He said that as he read it, he was cracking up because the doctor writes these emails to me like I am a colleague or another doctor or something . Using all these big words and asking my opinions on what to do next. I hadn't really even thought about it until he said that, but I guess that's true. It is kind of funny. The scary thing is that all these words and things he refers to are all starting to make sense to me. I actually know what he is talking about most of the time. Who knows, maybe when I grow up, I'll be a doctor after all! The part that has always intrigued me about his emails is that he always addresses me as Mrs. Clayton and then signs them with his first name. Here he is, the very intelligent, well known doctor treating me with such respect. I admire that. I must say, it is nice to have him on our side and to know that he will talk with us, and more importantly, listen to us, anytime we want/need to. I would love for him to be the one who figures out this mystery for us. I know he would love that also!