Gang, remember when I said that they found some extra fatty deposits in Jax’s spine? Everyone thought they were caused by the steroids that Jax is on for his Chronic Lung Disease. Turns out, the level of steroids that Jax takes could not have caused this kind of deposit.
We’ve been referred to a neurologist to help us get to the bottom of all this. (A neurologist is different from a neurosurgeon, apparently.) The appointment is on Saturday. (It’s awesome that they have Saturday appointments at this clinic – then Steve can come without having to take off of work!)
Doctors have recommended an ultrasound of Jax’s liver and spleen to check for more deposits. If deposits are found there, too, it could indicate an underlying endocrine disorder which means his body might not be processing enzymes correctly. I think we will order the ultrasound after the appointment with the neurologist because I think he might become our new primary doctor for all of these issues, but I’m not sure about that yet.
They will also be doing a follow-up MRI scan of Jax’s spine in July when we do the MRI for the brain tumor. This will help us see if the deposits are growing or changing.
Doctors have asked a geneticist if the tumor and the deposits could be related, but I haven’t heard anything back about that yet.
We are, as always, incredibly grateful that we live in an area where we have access to so many highly-skills specialists. We are also grateful that Jax is not showing any symptoms and that we have time to explore all of the options.
But frankly, it’s frustrating to get all of these abnormal test results without any answers.
Here we go again, I guess.
We will take some clues from our happy boy and just try to roll with it…
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An Early Start 
A neurosurgeon only does surgery. There are plenty of nuerological issues that do not require surgery, but do require treatment that a neurologist can coordinate. We needed a neurosurgeon and an oncologist for our daughter’s brain tumor. But for our son, who has a rare genetic condition, we use a neurologist who is a metabolic disorder specialist. Different diagnoses require different specialities.
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Thanks Beth! This is a really great explanation!!
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You found the silver lining once again. The smiles and energy that Jax puts out everyday, makes it better. Even if it’s a moment, it’s a moment to be free from worry. Just keep breathing. You guys are doing an amazing job!
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Jax is the bright light, that’s for sure! Thanks for the positivity, Libby!
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All I am going to say is “God Bless you and your family”! Thank you for All the updates regarding Jax!
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Good luck–I’m sorry you have to deal with yet another issue. In our experience, neurology has been very disappointing (they have little to offer and don’t really care to look too deeply into our daughter’s neuropathies). I hope your experience is very different.
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I’m sorry you have not had a good experience with neuro. I have heard from people on both sides of the fence now – some people rave, some are disappointed. I’m still confused by the difference between neurology and neurosurgery – but I think that neurology is to help diagnose, while neurosurgery is to help correct. I hope you have found another specialist who can help you find some answers!
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