Three Little Engines: More Meds

Thursday, May 26, 2016

More Meds

I've been put on two new meds to help with my thyroid (same med my boys are/have been on) and the anemia that I've had for about 3yrs now. Odd that not one Dr ever tried fixing my anemia. I realize diet can typically help... but hello!... new Celiac Disease!!! I'll go back in 3weeks to see if there's any improvement. If not, we'll do the ultrasound of my thyroid.

Both boys have seizure med increases. If they don't help, I'll pull them back to the previous doses. Hopefully it helps. Not because I want them on more, but because I want help for them.

And Damon has come down with a virus... they always end up sick when we go to PCMC. It's actually where they got the viruses and infections that killed Aidan. I sanitize and wash their hands, so it's not for lack of cleanliness. Anyway, I'm praying it's a basic one he and Jace can fight off.

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Okay, here's the thing:

For those who don't know already...

My oldest, Aidan, was diagnosed with a severe form of Epilepsy called Lennox-Gastaut Syndrome that is not treatable by the time he was 5yrs old. Then Jacen, with mild Cerebral Palsy w/seizure disorder, and Damon with Epilepsy. Later, after extensive testing, specialists said we are dealing with an untreatable neuro-degenerative genetic disorder that all three boys have. Genome sequencing results are still pending for mitochondrial forms that all testing and history points directly to. Heartbreakingly, Aidan passed away September 14, 2014.

All 3 have had varying degrees of developmental delays and regressions, but the same symptoms and in the same cycle. They are just at different stages of the disorder. The genome testing will hopefully provide an answer to the specific genetic markers causing all this so we can maybe, just maybe, make them a little more comfortable as they pass away. Jacen and Damon have now been diagnosed with LGS as well. And Jace is on Hospice. This is my journal.