We love the new Dr. we saw in Vegas this week. Dr. Bangalore was amazing. He spent three hours with us trying to understand every one of Kai's symptoms and making sure we understood everything he was saying. He was even very optimistic about treatment saying that Kai might just need to stay on KEPPRA for a year and then we could wean him off in the hospital and see if anything happened.
Then he looked at the MRI.
He was much more serious after that.
Kai definitely has an abnormal MRI with very strange flairs on his brain that mimic MS, but are in all the wrong spots for MS.
The most confusing thing . . .Kai looks healthy. Not sickly.
Dr. Bangalore wants to do a spinal tap in the next two weeks (as soon as our insurance company gives us the go ahead). He says the spinal fluid is like the brains sewer system and anything that happened in the brain gets dumped into the fluid. It should be able to tell us what is going on. He says our next step would be a PET scan. He also ordered a whole new array of blood work to be done (we actually did it yesterday) in search for a virus that might of caused this problem.
We are happy to postpone the brain tissue biopsy.
We have an appointment for the Mayo clinic in the latter part of January. Thank you to all of you wonderful Arizona people who offered your homes to us. We haven't quite decided what we are going to do. Our insurance doesn't cover the Mayo clinic so life may get interesting.
Kai hasn't been back to work since last Monday. He feels better but he still tires easily.
He can't drive for three months from November 30Th, the date of his last episode. This drives him nuts just as much as being mostly home bound.
Thank you again for the prayers and gifts and phone calls and dinners and other support. We feel so blessed to be surrounded by so many who are willing to give. I know without a doubt there are angels among us.
Glitter Shoot! Child Photogrpher: Mesquite, NV
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I am the proud mama of these two little beauties (who are growing up WAY
faster than I would like them too). This glitter shoot is something I had
been w...
8 comments:
Wow, I hope that this dr. can figure out what's going on with the spinal tap. He sounds like a good dr. I hope that you can get it resolved before having to resort to the brain tissue sampling, especially because your insurance doesn't cover it. You're in our prayers!
Is Josh able to get disability at his school? Or take a leave of absence?
oh my- that is a lot to be taking in during christmas time. please let us know what we can do. we really want to help in whatever way we are able from texas. but if there is anything we can do, let us know.
We are only 90 minutes away. Let me know if you ever need anything. You are always welcome to stay here or leave children with us.
Definitely sounds like you found a great doctor...what a blessing! We will continue to keep you in our prayers...
WHOA!! what sad news to find on your blog!! of course good that the dr.'s are optimistic but sad that your family has to go through this. and especially kai!! you will absolutely be in our prayers. we'll be hoping for the very best and sooner than later.
I want you to knwo how much I appreciate teh updates! It's nice to be informed without worrying about calling at a bad time- so thanks! we're still sending good wishes your way!
amy~ i haven't read your blog in awhile..i'm so sorry to hear about kai..i hope all will be well with him and that you and your family can be at ease with everything..what a difficult thing to be going through at this time of year...our prayers will be with you folks...god bless:)
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