I have been living with anxiety off and on over the past year and a half. I am not an "anxious" person, aside from the occasional butterflies in my stomach when I speak to a crowd. And I don't know that anyone that sees me on a regular basis would believe me if I told them that I've got some pretty extreme anxiety right now. This is the keeps-you-from-sleeping, feels-like-you're-hanging-on-by-a thread, body-is-aching-from-being-tense type of anxiety. It has been slowly building and comes and goes, but has pretty much culminated into the perfect storm over the past few weeks. My mind does not really ever rest. As a mother of a young child with undiagnosed medical and developmental complications, I can't stop searching for information in hopes of improving my son's situation, to the point of obsession. This has absolutely nothing to do with anything in my life, other than the helplessness I feel about our lack of medical progress over the past year and a half. It is a pretty awful downward spiral of a place to be.
We are 4 months into our wait for Whole Exome Sequencing genetic test results. The Whole Exome Sequencing is basically the mac daddy of genetic testing - it looks at over 20,000 genes within the human genome, where 85% of mutations known to cause diseases reside. I would be slightly less anxious had Cigna not denied the claim, on the premise that it is not medically necessary (separate rant...) I was told by a very unhappy and pretty uncertain-sounding woman from the genetics lab a few months back that as far as she knew, they were still moving forward with the analysis despite the insurance denial. The original anticipated wait time was 3-4 months, so I have been rather obsessively checking my email hoping to receive some type of news about the results or coverage. My fear is that we are losing months and months of time, under the assumption that the test is moving forward, when in fact is isn't.
We are also recently receiving piece-meal lab results ordered from a new biomedical doctor that saw Curren about 3 weeks ago. Some of the results indicate the possibility of specific abnormal metabolic conditions, which I of coarse googled and shouldn't have, as these specific abnormal metabolic conditions sometimes result in premature death. I know that the remainder of the outstanding lab results were reported to the doctor last Thursday (I called Quest) and so now I am rationalizing in my head the various reasons why the doctor hasn't given us the results yet. This, too, is adding to my anxiety.
And back in July, we had two EEG tests performed, both with abnormal results. Unfortunately Nemours did not give me much information about the results or what they might mean, so I have turned to Dr Google after requesting the written copies of the reports, which describes potential epileptogenic activity, possibility of underlying structural or metabolic abnormality, suggested lowered seizure threshold in left occipital, field spreading into right occipital and left posterior temporal area, careful clinical correlation is recommended, etc. I was hoping last week to gain more insight as to what these reports may mean at our routine follow up with one of Curren's Neourologists who's niche is epilepsy ("Epilepsy Center" is in the practice's name), but unfortunately he didn't offer anything remotely helpful. I have been anxious about what this doctor may say about the EEG reports for weeks now, and him providing no insight has added to my anxiety.
After getting nowhere with the local Neurologist, I called Nemours to schedule another appointment with Neurology so I can talk directly to the doctors who analyzed the EEGs and discuss the things in the reports that were never conveyed to me. It has been 5 days now since I left my message to request an appointment (at which point they reminded me that we weren't due for another appointment until January) and I have nothing. I emailed them asking to expedite the schedule request due to my concerns about my son's recent regressions and I have nothing. This is adding to my anxiety.
As we start to hone in on possible causes of my son's difficulties, I wonder if we really should be pushing so hard for these answers. What if it's not something I want to hear? What if this journey consumes me and I lose sight of the present? I wouldn't be able to live with myself if there were interventions that could make a difference and I didn't push hard enough to find them, but what if the road to get there honestly compromises our quality of life?
My current experience is applicable to all parents, and all life situations. Don't let your fear of the unknown rob you of your joy of the present. Enjoy each beautiful moment of life that you are blessed with, and savor those moments. Soak your babies up and don't let your fears shadow their triumphs.
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I am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life.