I am eager for the day I can post here and say that Tim is all better… that there are no more unexplainable episodes of tremors, or seizures, or whatever we’re supposed to call them. Today is not that day, but I pray it comes soon.
Doctor after doctor is unable to give us any real answer about what is happening. They recognize it is happening, and some honestly say they don’t know what it is, and some can say what they know it isn’t. But none have been able to say “eureka” and help us choose a course of treatment that will help. Some have done harm with their guessing, or with their presumptions.
Last week we saw two new doctors. The first, a third neurologist, was thorough in his examination, listened well, watched the video we’d taken of the episodes (even inviting 2 colleagues to review it as well), and was remarkably kind and honest in saying he didn’t know what was going on.
The second, a rheumatologist, reviewed Tim’s file of test results, asked him some questions, and told us what we already knew about some specific autoimmune disorders – that Tim isn’t suffering from them. His bloodwork has never indicated that he had the ailments she mentioned, but when she observed his very natural disappointment at yet another “no solution” response, she lectured us about how glad we should be to have ruled out some very bad illnesses. Then, she turned to me and asked in total seriousness why I was withholding “the one treatment that could help my son.” I was dumbfounded, and she took my pause as the opportunity to go on, telling me that we’ve had a lot of tests, seen a lot of doctors, and that our only option was to conclude that Tim needs psychiatric treatment to resolve his tremors.
Nevermind that he’s been evaluated in person by a child psychiatrist, and his case has been reviewed by another via presentation by his primary doctor. Neither of their opinions matched the other doctors with out answers’ opinion. In fact, the pyschiatrists both said, it is far more rare for a psychogenic disorder to be present and last this long than it is for this to be a number of rare diseases or even some rare genetic disorders.
The visit with the rheumatologist was crushing for Tim. It made his primary doctor frustrated, and she is pursuing our taking him to Boston for evaluation. He’s now quite wary of further doctor visits, understandably so. But he wants to know the source of his suffering, he wants the pain to end. He wants to do what 17 year olds do – search for a college, be with his friends, have a full life like he had until a year ago.
We work hard not to give in to discouragement – though there is much about which to feel discouraged – and to keep in mind that God knows what’s going on in the most minute detail, and remember that he is in control. We do trust him completely, though we’re not ‘happy’ to be suffering in so many ways. His suffering is not light, walking with him in it is not easy for me or the rest of our family.
We continue to pray for Tim’s complete healing, for God’s direction as to his care and treatment. I pray that God will guard Tim’s heart, to keep pulling him closer, to give him eyes to see what God is doing.