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Ethan's levels are still rising and no answers yet...
We stopped in at the doctor's office today (we were at the Starbucks next door) to ask about our date for the brain ultrasound we are still waiting on and the doctor heard we were there and brought us in to his office (I swear, he is the most amazing doctor I have ever worked with, both in terms of bedside manner and in competency and thoroughness. I'm a bit mad he's a pediatrician because I'd love for him to be our family doctor!). He said that part of Ethan's super special blood test last week (the isoenzyme test which would identify which part of his body this mineral was leaking from) was back, and it showed that his level of alkaline phosphatase was now at 7100. It was 4081. The highest it should be is 500.
Unfortunately, the main part of the test- the analysis of where it is coming from- wasn't finished, and he cautioned that it may take a while yet to get the results.
He's still stumped. He again told us that it's very likely we'll have to go to Children's for a bone scan, assuming that this test comes back and identifies his bones as the source for this substance (and the doctor seems to think that this is likely). He did say it was possible that, depending on the results, the doctors at Children's may just choose to monitor the situation for six months and see what happens, since he doesn't seem to have any real symptoms of any of the serious diseases they're looking for. He also said that they might do every single test over again to make sure we haven't had any false negatives anywhere.
So no answers yet. But it looks like things are getting worse.
He "prescribed" a much higher dose of Advil than is generally recommended, given to Ethan every six hours 'round the clock to see if it is a pain issue that is preventing him from sleeping (he assured us that even this high dose was still safe). He said that if it is a pain problem, by the third day on this regimen we should see an improvement. So we'll start tonight.
Re: Ethan's levels are still rising and no answers yet...
Wow... glad to hear that this Dr is staying so good and so open minded about everything.
Wouldn't that be something if the Advil helped. I hate thinking that Ethan is in pain but at least it would give them another symptom to help figure out what is going on.
I thought the same. I had a cousin with terrible back pain. She just didn't know it until a doctor sent her to a chiropractor for an assessment and they fixed it. Once she knew what a pain-free back felt like she realized she had been living in pain.
Of course I also hope he has no pain. But then that doesn't help you figure out what it is?
This must be so stressful. I hope you get some answers soon.
**giant hugs**
That doctor is amazing. I am so glad he is there to help you and Ethan.
Thanks for keeping us posted, I have been thinking about you!
Keeping you guys in my thoughts. I really hope for some positive answers soon.
Take Care (hugs)