We are still struggling to get a diagnosis for my son. His episodes as we call them are now occuring more frequently and the doctors in our area are at a loss.
We have been referred to an undiagnosed clinic and have appointments sent for a geneticist and a second neurologist.
As much as it is difficult for me to write this I need somewhere to vent. Two days ago when we went to pick up my older son from preschool my youngest had a severe episode. One like never before and for a second I thought he had died because he was so lifeless and grey.
The doctors at my local hospital ran a few tests but he was once again stable and perfectly fine. The children's hospital nearby basically told them to tell us not to bother bringing him down to them as they have ran all the tests they could and there is nothing they can do for us.
I want to scream, cry, punch something, all of it. My once perfectly healthy 2 year old has something serious going on and these doctors seems to not give a shit. We are at our wits end and if we don't get answers soon or get accepted into the undiagnosed clinic then we are debating on taking a trip out to Boston where we can hopefully get some answers.
I am terrified this shit is going to kill my son and one day his heart will stop beating because this is so taxing on his little body.
If anyone here know anyone who works in the medical field and could possibly help us please reach out. We need answers and we needed them months ago. Drs here are terrible and schedule us months out without a care that these occur nearly daily at this point. I want to continue writing but my mind is so focused on my son and trying to find a diagnosis with or without a doctor.
Thank you for supporting my book and being patient with Drago's story. ❤️