I have been unable to update this blog in some time. A lot has happened in my family's life since my last post. In November my son was diagnosed with a form of Epilepsy and was put onto anti seizure meds in December. That adjustment in itself has been a roller coaster.
We also moved into a new home, in a new town about an hour away with my Mom. We now live in a multi-generational home and it has been such a great burden off our backs to have some help!
Abe however continues to struggle. The first month on his meds seems like a godsend but now just 90 days later we are back to no sleeping, absence seizures and behavioral issues that suggest that something is really hurting or bothering him.
We even had to page our Neurologist on a beautiful Saturday afternoon to ask for advice on how to best help him and him being the wonderful man he is - took our phone call when he was at home with his own family. So for now, we have upped his medicine to a stronger dose as the bloodwork revealed it was still sub therapeutic and he had some low areas on some tests as well including his ATP and his red blood cells. We go back next week to retest the blood. I'm praying that the blood work is just a matter of a nutrition issue with his food since he is such a picky eater due to his SPD but we are finally starting Feeding Therapy this week as well! I couldn't be more excited about that. It's been a very long wait to get in.
At this very moment - we are waiting to hear back from our Neurologist as we finally had the ability to connect him with Dr. Shahinian at the Skull Base Institute in Los Angeles. Although he is unable to do Pediatric Surgeries at his current hospital, I feel that at this point he is the best point of reference for our Neurologist and for my son to get the care he needs since he has been following him since 2013. Truth be told - thinking of my son having to have brain surgery is absolutely terrifying and I would love for that to be a choice that he makes for himself when the time comes. I am unsure if that is going to be an option for him at all but our Neurologist feels that we NEED A PLAN in case something emergent arose and we needed help.
A few other options have opened up for second opinions but right now - he has so much going on the mere thought of starting over with a new Neurosurgeon is overwhelming but I do know a few moms submitting their child's files to Barrow Neurological Institute so I'm excited to see what assistance they may be to help the children and toddlers suffering from these lesions.
Abram just woke up from his not-napping at all really... so I have to run... but wanted to update what was going on. :)
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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