/ some answers \

Anona’s doctor appointment went well. Her neurological exam was perfect. The doctor said he thinks she’s getting atypical migraines. We kind of need her to have more of these headaches for us to be able to get a better assessment. So for now we are starting a headache diary and we will continue to monitor.

He also said based on a physical exam he thinks she likely has EDS and is glad she is set to see a geneticist in November. He also wants her to be evaluated for ADHD (neither of these things are surprising to us).

At this point honestly, I’m just grateful he does not think it’s anything more concerning. Of course I don’t want my kid to have migraines. But honestly migraines, EDS, and ADHD feel like things that are manageable. Something like a brain tumor on the other hand would put me over the edge. I work on a brain injury unit. I see the worst case scenario all the time. People who were seemingly fine, had a bad headache one day, went to get checked out, only to find out they have glioblastoma. It’s hard not to go to the worst case scenario sometimes.

So for now, though it means more doctors appointments, I’m grateful. I’m also grateful whenever physicians know anything about EDS. We still don’t know what we don’t know regarding Anona’s health (and mine). So any movement towards getting more information and answers for Anona has me thankful.

Thanks to all those asking about her. It means so much to me to know how deeply she is cared for 🖤

#ehlersdanlossyndrome #EDS #zebrastrong #POTS #MCAS #mastcellactivationsyndrome #dysautonomia #chronicillness #spoonies #alopecia #alopeciauniversalis #thespooniesisterhood #kidsandchronicillness #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpainawareness #chronicpain #migraines #ADHD

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