We just got home, but you can read PART ONE HERE, things may make a little more sense and it should answer any questions we can answer.
There is absolutely no reason for palpilledema that could be found. Nathan’s spinal MRI was normal, which is great.
His pressures during the spinal tap were normal so neurologist #2 is calling it psuedopalpilledema. He thinks it was a fluke. All is well. Just work on the strabismus. I would love to agree but my gut and Charlie’s guy just can’t get on board.
We are wondering if the first spinal tap and all the fluid the ER doctor removed brought the pressure down? He left before we thought to ask.
More unanswered questions.
We need to go back to the ophthalmologist so we can start working on the strabismus that seems to be getting worse everyday. I’m assuming she will check the optic nerves again.
It’s definitely effecting his vision and balance. He is occasionally walking into doorframes and his feet seem to turn behind him and he wobbles when he walks.
We have zero explanation for the bruising. His clotting lab came back normal. We will keep a close eye on him to see if he continues to bruise easily. We also have no idea WHY his reflex tests are not normal.
We will see neurologist #1 again in one month and he recommended a follow-up MRI in six months. We definitely like #1 better. He’s younger and seems more eager to dig into his case. He is on the same page we are (as is almost every other doctor and nurse we saw) that there is something we are missing.
It may not be something big, bad and scary but it’s something.
It is definitely something, that is obvious. If both eyes are seeing well and looking in different places, he will get confused or disoriented. This does not explain bruising. And why is strabismus increasing? I am assuming his eye doc has done a thorough, dilated exam and checked thoroughly for latent hyperopia. Blessings and prayers.
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She did an exam then dialated his eyes but stopped the exam when she noticed the swelling. She was more concerned with getting the MRI asap then finishing the exam. We will go back to finish it.
Yes, priorities. The optic nerve was definitely her top priority at that point.
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Keeping our fingers crossed for Nathan and hoping the rest of you are holding up okay. Bronwyn has strabismus and ambliopia. She’s had one surgery for correction and that’s all they intend on doing until she’s grown so they can determine what, if anything else, needs correcting. So we know what’s it’s like for THAT at least. Hoping they find out what’s causing all the other stuff with Nathan. It sounds like you’ve found at least one good neurologist so that’s a big relief – to find a doc that will work with you. Let me know if you need anything. We’ve moved but we’re still not that far away from you. 🙂
If it’s JUST strabismus that will be great. I’m not worried about that. It’s the swollen optic nerve that is the concern.
I am so glad that you’re home. I am praying for health and for answers. Trust your gut.
HUGS
Traci
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XOXO thank you
have they done a brain CT or MRI of the brain? My first thought was hydrocephalus….but what would cause hydrocephalus to develop in a healthy child if there is no head injury or he wasn’t born with it?
Yes. They did an MRI on the brain and the entire spine
Just catching up on blogreading and see you have been going through this. Poor Nathan…and I can only imagine how frustrating it is not to have all the answers. Prayers for you guys and for the doctors.
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I so hope you get your answers soon. I can’t imagine how hard the waiting and uncertainty must be! Stay strong and I’ll definitely be checking for updates. All the best to you!
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Not having answers when there’s something wrong with your kid is awful! I hope you get some soon, and that it is an easily correctible condition.
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