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!

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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:

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Well Happy New Year! I sure hope your year has started off better than ours. It's been, well, challenging to say the least. And not just since the new year, but for almost a month now. As if the holidays aren't stressful enough, we had to add a hefty dose of illness to ours.

It all started on December 17th. Sebastian began throwing up rather suddenly. It seemed to be some sort of stomach virus as Oscar developed the symptoms later that day as well. They both recovered quickly from the stomach part but also seemed to develop colds right afterwards. Nothing too surprising as it is Oscar's first winter in preschool and Sebastian had made it most of the school year so far without getting too sick. Thankfully, Brian and I managed to avoid the stomach part of it but I did catch their cold which hung around for weeks. Typical winter for me.

The odd part happened a few days after the boys seemed to be through the worst of this bug. In the middle of the night on Oscar's birthday, the 22nd, Sebastian woke up screaming in pain with a headache. His exact words were "my head is exploding." Not exactly the words you want to hear your child use...ever. We did what we could to calm him and gave him some children's tylenol. He suffered on and off for several days. By Sunday we were very concerned and called the advice nurse and his pediatrician's office to get the on-call doctor. Both said the same thing. We should probably go to the ER if we think it's that serious.

We hesitated at that. Not only because the ER is obscenely expensive, not covered by our insurance unless the deductible has been met, and a ridiculously long wait for mediocre healthcare. But because we weren't sure if the doctor really believed Sebastian needed emergency care, or if it was because he has NF1. Headaches are very common among people with NF. Sometimes it's from a tumor, but not always. The fact that he had been sick a few days before and was still fighting a cold made us question if this was really an NF issue versus just a really bad sinus headache. Sebastian has always had a low tolerance for pain and been on the sensitive side, which makes it very difficult to tell when something is serious. 

So we waited it out, got him in to see his doctor on the 26th. She was uncertain about the cause of his headaches and remained on the fence about if we should go to the ER still. The issue being that scheduling imaging and getting the results takes a long time. We were very frustrated by this. Why is our system setup in a way that we can't get urgent healthcare? It's only super slow or emergency for things like this, no in between. And yes, I called EVERY urgent care in our area, and not a single one of them have a CT scan or MRI machine. The doctor recommended going to the ER if any new symptoms developed or the headaches continued after the cold symptoms were gone.

The cold went away and the headaches continued, but just in the afternoon and at night. He woke in agony again late on the 27th, and so, sick of the uncertainty, Brian took him into the ER. They did a CT scan and said it was clear. The doctor labeled them "tension headaches" and said to keep treating with Ibuprofen and Tylenol.

Tension headaches seems like a very broad diagnosis, especially since he's had no history of headaches. It sounded more like one of the many labels that actually means "we don't know." Sometimes, instead of a vague diagnosis, I'd prefer the doctors were honest and just admitted to not knowing. Some people think the label helps. But going on 5 years now knowing about Sebastian's NF, I'd have to disagree with that. We have the label. It doesn't really help, but instead trades the stress of not knowing with too much knowledge. We know all the things that might go wrong. It makes every tiny thing that happens to him into something much bigger. Maybe he does have a tiny tumor in his head somewhere causing these headaches. Or maybe he just has a lingering sinus infection, crappy posture which is hurting his neck, clenching his teeth, an unknown food or environmental allergy, not drinking enough water, not sleeping enough, etc. etc. forever and ever. The list of things that can cause a headache is ridiculous.

But as everything with NF, we simply do not know. And the only way we have to even attempt to know, is to run more tests. The headaches continued at night for over a week. Some nights it wasn't so bad and others we slept very little. It got to the point where we started giving him Ibuprofen in the evening before dinner just to avoid the onslaught of pain. And it gave us all some much needed sleep. Then Oscar caught yet another stomach virus, and two days later it hit the rest of us at the same time. It's been a rough couple of days. But oddly enough, Sebastian has not complained of a headache since then. Maybe he's just been distracted by the stomach pain? Guess we'll see tonight as we're all on the mend now.

But last week when it was still bad, we told the doctor we were still concerned even though it didn't seem to be an emergency. They tried to schedule an MRI but of course their soonest available was several weeks out. They put in an urgent request to a different hospital, this time at OHSU (which has been better anyways in our experience), and he is going in tomorrow afternoon.

If you've been following my blog for awhile, you know we've avoided the MRI for years because for a child, it requires full anesthesia. In the past we were told the youngest a kid had made it through without being sedated was 9. Not sure when this changed, but now they offered a different option. They can let him watch a movie instead of sedating him. This was amazing, and hilarious, news. Amazing that there's a chance he can do this without the drugs. And hilarious because what does that say about TV? Yep, we're still laughing.

So Brian, being the resourceful man he is, decided it would be a good idea to have Sebastian "practice" for the MRI. He had him lay on cushions on the floor and watch the TV upside down, but this didn't seem quite enough, or good on his neck. Even in that awkward position, he made it about 30 minutes without moving. But Brian worked on a better design, and came up with this:

That's an iPhone above the glass

He's made it the 45 minutes, but I did see him wiggle a couple times. Hopefully that will be acceptable as tomorrow is almost here. If you have any positive vibes, healing energy, prayers, magic crystals, or whatever happy thoughts you have to send our way, we could use it and are, as always, grateful for your support.