More Tests for Cam

A few months ago we took Cameron to see his geneticist at Primary Children's Medical Center. He had to get an MRI....the reason it took so long was because they had to sedate him. It was a very long day, and at the end, the doctor told us that there were 2 major concerns that the radiologists had with his MRI. He had a fatty deposit at the base of his spine. It could be nothing, or it could mean that he has a tethered cord. Causing all sorts of problems with his lower body muscle control, and eventually problems when he gets older.

The other thing they were concerned about was his lower lumbar area. They thought it might be aggravated lymph nodes, but they can't rule out a tumor. So his doctor recommended that we go back in 3-6 months. I was not really happy with this outcome, but what else could I do?

It's been 3 months. And when I was talking with my service coordinator yesterday I mentioned that the geneticist said that he wanted to see us in 3-6 months, and I'd probably call him that day about it. After she left I was just sitting there when I got a call from, who else? The geneticist. Coincidence?? Who knows!

He told me the results again, and told me that after discussing it with his supervisor and the radiologist they'd like to do another MRI. He had mentioned maybe doing a CT scan (no sedation), but after discussing it, they decided that an MRI would be best because they could also do a cine (pronounced: sinny) test where they could determine if he's got a tethered cord. BUT he also wants to sign us up for ANOTHER study where they'd look at the scoliosis a bit more. I don't know what all is included in THIS study, but I agreed to sign up for this one as well (the fact that THIS one pays made it an easy choice!)

It's just super annoying to not have specialists IN MY AREA! Not that SLC is that far away, but it's far enough. Enough that it's 6 hours plus of driving all in one day.

I'm thinking that THIS time, I want to stay over night IN TOWN!! (We stayed with my sister in Logan for the first trip...STILL took us forever to get to SLC the next morning!) I'm going to try and convince my mom to help pay for a hotel room! (My mom goes with us to EVERY appointment...Cam uses her as his security blankie...)

NF1 usually IS something that runs in families. BUT it's a dominant trait...meaning that if Cam had gotten it from me (my maternal grandmother DOES have NF1) my mom and I would BOTH have to have it, and we don't. His is a mutation. If you're familiar with genes at all...his is called a gene deletion. Basically, he has NF1 because in his DNA there is a whole gene missing that turns OFF the NF1.

When we go to do these tests we prepare him by telling him that some nice doctors are going to be helping him. His FIRST question is always, "Are they going to hurt me?" The last time we did the stuff for the study they told me that they had to draw some blood. I warned him about it...BIG mistake!! The kid freaked out when ANYONE came into the room...ANYONE!! Then when we went for his MRI and I knew they'd have to do an IV...I didn't warn him...it went MUCH smoother! The thing about the drugs they give for the MRI is that it works IMMEDIATELY. Not even a minute had gone by and he was asleep! He was way loopy afterward, but didn't have a bit of a problem...except for walking and standing up straight! He's a good kid at his appointments.

I'm going to try and set up the appointments for when Cam is out of school...I printed off his school's schedule, and we're looking at either March 1st and 2nd or the last week of March. Either way, I'll most likely be there in March. (Hopefully the roads won't be so bad!)

So here we go again! Luckily the doctor doesn't think he has the fast growing bad tumors, but he doesn't want to take any chances!