You all got time to hear this shit because I have good news! Sebastian does not have a brain tumor! And more good news, he hasn't had a...

Celebrate Every NF Win

You all got time to hear this shit because I have good news! Sebastian does not have a brain tumor! And more good news, he hasn't had a bad headache in a whole week!


First, in case you didn't hear, Sebastian made it through the MRI without wiggling at all. The tech said he didn't have to re-do a single image and he did better than many adults! They were also very impressed that Brian had him practice ahead of time. I think the practice helped a lot, and that we impressed upon him how expensive important it was for him to be still for it.

We saw Sebastian's neurologist yesterday and she reviewed the radiologist's report of the MRI with us. There were a couple of spots, what they call Unidentified Bright Objects (UBOs), because they show up as just a bright spot on the image. They have no mass and so are not pushing on anything. They are very common on MRIs of kids with NF1 and do not cause any problems that they know of. I stumbled my way through a few abstracts of studies done on these spots, and they are studying the correlation of UBOs with learning disorders. But it didn't sound like anything definitive had come from these yet. Still very interesting as they all mentioned that a majority of NF1 patients had these spots on their MRIs, but only while they're young. Apparently the spots can lessen or go away entirely as they grow up. Fascinating, and definitely worth further study, but thankfully nothing to be concerned about.

The neurologist thinks Sebastian likely experienced his first migraine (and hopefully last in my mind), probably triggered from illness, since he'd been so sick right before. There's quite a long family history of migraines on my side, so it's not surprising between that and NF1, that he may suffer from headaches. The good news about that is there are plenty of us in the family with experience in figuring out headache triggers. So I'm confident we will be able to figure out his and help him avoid the pain as much as possible. 

With this in mind, we also took him to see my naturopath yesterday, as I knew from my own experience that natural medicine tends to be much more helpful in finding the source of things like headaches. And giving you gentler treatment options as well. Here we talked about things like diet, probiotics, supplements, and essential oils. I'm not against treating him with Ibuprofen, but I want to save that for when it's really bad. I like having other options for whenever it's not so bad, and ideas on working towards preventing it.

In my own experience, headaches are more often than not caused from something basic. Not getting enough sleep, not drinking enough water, eating unhealthy, and not getting enough exercise are at the top of the list. For me the list extended into things like inhaling any fragrances or chemicals, which can trigger an instance migraine complete with light sensitivity and nausea (seriously people, lay off the perfume and cologne, you're killing me). So yes, migraines suck, but I feel much more confident and prepared on how to handle this than any other diagnosis they may have thrown at us.

Next steps will all depend on if they come back at all, and if so when, how bad, any obvious cause, etc. So we'll see what happens. But in the meantime, I'm going to keep celebrating every win we get on this NF journey. And doing my happy dance, which I'm not gonna lie, probably looks a little something like this:

2 comments:

  1. Migraines run in my family as well (weather related and hormones related). I think what you're doing is wonderful and I agree to use the more gentle and natural stuff first.

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    1. Thank you Carrie! It seems to be working well too!

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