Tuesday, May 14, 2019

Seizure Activity -Repost from my Facebook post Feb 2019

So the good and bad update: We are home!!! That's the good news that I am very thankful for.
PLEASE do not comment to tell me that person x or person b has epilepsy and they are fine. I know all too well what seizures are after experiencing them personally for several years from age 13-24. It was scary enough to personally experience, but to see our child suffer through 3 in a row one lasting over 45 minutes is not something I EVER want to witness again.
So now that disclaimer is out of the way. Bad news: Dacotah's EEG per the neurologist report "his EEG this morning demonstrated a prominent focus of spike activity from the right temporal region. There is slowing in this region as well". Dacotah does in fact now have a diagnosis of epilepsy (specifically focal seizures). No worries as much as the anti-seizure meds should be able to control them. The SLOWING in the right region is our main concern at this time. This can be due to his genetic chromosome deletions, but it can also be that something "structurally is wrong with his right temporal lobe"; the only way to know for sure is to sedate him for an MRI. Which I will follow-up with his PCP to get that scheduled.
*Sidetrack for a funny comment* Dacotah had thrown such a HUGE fit yesterday while we attempted the first EEG, that when the staff asked about just doing the MRI today as well, the Neurologist laughed and said "sedated, else the tech would be watching his feet disappear as he climbs out of the other end of the machine" (sounds about right lol)
Travis and I want to thank everyone for your prayers, your comments, and your well wishes. This weekend has been very trying and hard, but we are thankful that Dacotah is stable and is back to his normal self. I will update again once we know when his MRI is. No matter where life leads it takes a village to work together to get the job done. Love you all. *hugs*

UPDATE MAY 2019 Dacotah did not have a structural issue per his MRI. We Discontinued his seizure medication after he kept throwing up from the two that we attempted. Instead we turned to Osteopathy and so far we have had excellent results. We will continue following up with neurology in the future. 

No comments:

Post a Comment