How Lyndsey was Diagnosed, Part I - Headaches

As the Mom of a special needs adult child, it is up to me (and her Dad - but mostly me) to manage her health, remember her medical history, and decide what symptoms need to be checked out by a Dr. and which ones are minor enough to wait them out. This is a HuGe responsibility. The responsibility is also huge with children, whether special needs or typically developing. There are many things to consider: 1) her inability to communicate what she is feeling and the severity of it; 2) I don’t want to raise a ‘whiner’ who cannot deal with the everyday aches and pains of being alive; 3) I don’t like her being given a pill every time she goes to the doctor; and 4) doctor visits, medicine, and diagnostic tests are expensive!  Then there is the 5) Guilt of making the wrong decision; of not acting or not acting soon enough. Every parent can relate to this and understand our position, emotions, and anxiety as we navigated Lyndsey’s diagnosis. Here is her story:


In June, 2017, Lyndsey had headaches every day for about 2 weeks. After about a week, I was able to get her an appointment with our General Practitioner who gave her some medicine, Tramadol 50 mg, which helped. I made a note of the date in my phone Notes App (the Remembering Medical History part). The Dr. said if the headaches did not go away to come back. They did go away and she no longer needed to take medicine. I must say we used the Tramadol sparingly – I always had her try acetaminophen or ibuprofen first, then, if that didn’t work, she would take the Tramadol.


Headaches were forgotten about, until June 2018, exactly 1 year later. It occurred to me it may be a seasonal allergy since it is the same time of year. We took her to a different Dr. in the same practice because our preferred Dr. did not have any appointments. We were about to fly to California to spend a week with Lyndsey’s brother and sister in law and needed to get her looked at ASAP. This Dr. gave her a different opioid - we really hated that but needed to get through the trip. We used it sparingly again.


Lyndsey did OK on the trip – she tried not to mention her headaches too much and the medicine helped when it was really bad.  When we got back, we made an appointment with her regular Dr., who we dearly love, and she sent Lyndsey for a CT scan on August 27, 2018. I will never forget her phone call when she got the results – I was in Walmart, alone. I thought, how special that the Dr. herself is calling, instead of her assistant. Her voice was friendly but serious, and quizzical: surprised by what was in the report. She said that the CT scan showed that Lyndsey has had a stroke at some point in her life.  She asked if we knew this? No, we did not. She was reassuring, there did not appear to be immediate danger, and she would refer Lyndsey to a Neurologist to learn more about this ‘old stroke,’ or “left parietal lobe encephalomalcia from a prior infarct” as it was stated on the CT finding report.


I stood, alone, in Walmart, trying to remember why I was there. I wanted to cry, but not in public. I wanted to call someone, but that would make me cry. I replayed Lyndsey’s 31 years in my mind, looking for a time when she may have had a stroke. Perhaps it happened at birth and is the cause of her developmental delays? Is this why she has been having headaches? I couldn’t wait to get home to look on the Internet for more information about strokes in infants. I prayed, “Lord, what do I do? Show us the way to finding the answers we need to understand and treat Lyndsey’s health.”

Hear my cry, O God;

Give heed to my prayer.

From the end of the earth I call to You when my heart is faint;

Lead me to the rock that is higher than I.

Psalm 61:1-2 NIV