Neurology apt

Well, it was another big day for us and the road on Collin's NF Journey. We finally had our apt with the Neurology Dr. For those that don't know and are new to this blog it is VERY important that kids with NF be followed by Neurology to make sure there are no tumor developing on the brain, or other Neurological changes. I might suggest to those that are JUST reading the blog for the first time to go back and read the first few posts on here it will fill you in on what NF is and help you better understand what is going on with Collin.

  All and all the appointment went well and we didn't learn anything major that we didn't already know. Really I'm not gonna lie that the whole thing felt like a waste of time and money and gas..The Dr said "Collin has NF, NF can lead to some serious neurological issues including tumors on the brain." Yup thanks Doc, tell me something I don't already know. OK, I know he is just doing his job and being that this was a first appointment didn't really expect to much from this apt. I knew it was gonna be just the run of the mill office visit.

  The Dr examined Collin, oohed and ahhed over how many CAL's he has and asked family history, and Collin's developmental history ect, ect so on and so forth.

  Finally when we got to how Collin had developed the weird tick. Which has disappeared in the last 4 weeks. The Dr did say that this semi concerned him although given they were going away not majorly. After doing some muscle strength tests with Collin and seeing how he is STRONG, yet low tone all at once he talked to me about how Collin will need at some point an MRI...which is something that most NF kids need. After tossing the idea back and forth should it be now or should we wait and talking with Dr. Greismer who is HEAD of neurology we decided that since Collin's tick are slowing and his low tone is symmetrical that we will wait a year to get the base line MRI. The reason for it is given Collin age and inability to be perfectly still he would need to be sedated and lets face it since it's nothing urgent we would all rather wait. So, for now the game plan is to keep an eye on him, should the tick return I am to video it as often as I can AND give them a call ASAP and we will schedule an MRI. We were also suggested to get Collin on to a Orthopedic Dr in Boston. There is definitely some very slight bowing of his left leg and he pigeon toes both feet slightly.

All and all it was a bunch of being told things I already know and keep doing what you are doing. I guess it's better than going in and hearing a bunch or things we don't know and throwing another wrench in the mix right!!!!!

So that is that, nothing exciting but for now that is fine with me!