After many months, years actually, of being put off by OHSU neurology clinic, we saw the infamous “headache guru” doctor today.
I have to say that after all the anticipation, anxiety and emotion surrounding this event, I am absolutely exhausted at this moment.
The appointment went well. He spent a good amount of time with us. He too, was pretty shocked that we had been on the waiting list since 2011…
Thank you so much to so many of you that have been so supportive through this process and reached out to us
Maddox has Cyclic Vomiting Syndrome. This is a childhood migraine syndrome.
We still have to do a “sleep deprived” EEG, in which we will all be terribly cranky, but at least we do not have to induce an episode and stay in the hospital overnight…
Once we do the EEG, he said he should have all the information he needs to confirm the diagnosis. Which will be good.
The only bummer is that this implies that my baby will most likely suffer from Migraines as a child, teenager, and adult…
At least the puking should stop at some point, I hope!
Even though I am kinda bummed about the impersonal nature of healthcare, I am glad to have seen a doctor who I feel confident really knew what he was looking at with Maddox.
That was our one shot. Our 45 minutes.
He gave me a number to phone to schedule the EEG, and another number to phone to get the results. I don’t expect to ever hear from him or see him again.
That makes me glad in the sense that my son doesn’t have a serious illness, and sad in the way that healthcare has gotten so far away from being about people and relationships between doctor and patient.
The good part is that unconventionally, my pediatrician is so amazing at personalizing his care and developing relationships with his patients that are based on follow-up and personal care and attention.
I guess you can’t have it all…
Or can you?