Hello all and thank you for your prayers! As you may have seen on Facebook, Winter seemed to last forever and Isaac was sick continuously from the day after his birthday in November until April and then he had another cold or two after that! We have finally entered late spring!
Isaac finished his depakote wean last Sunday. Depakote was another anti-seizure medication that he tried, had no effect, or so little as to be very unsure. We had even increased the dose again after labs showed him to be less than sufficient, got to sufficient on labs without a noticeable decrease in seizures and so we took it off! It hurts me and overjoys me to see him smiling and even a couple of chuckles again this week. It hurts because the depakote went on so slowly that the sedation and numbing effect was not as glaringly obvious as some of the other seizure medications have been. Isaac was still have alert periods while on the full dose. But take it off and he’s suddenly engaged. He’s smiling again and we realized we were falling back down to a couple of half smiles a week before weaning. Pharmaceutical anti-seizure medications are so hard on the brain and body. I hate Tay-Sachs and the related seizure disorders these sweet kids suffer.
So Sunday was Isaac’s last dose of depakote, Monday Isaac had his school teacher in the morning and then Isaac was fitted for a gait trainer in the evening. We are hoping for delivery within 2-3 months. It is going to be so amazing to teach Isaac to get around for himself!
Tuesday Isaac had his ankle-foot orthotics (AFOs) adjusted, school teacher, Anat Baniel Instructor Margie who helped relax his spine that has been slowly contorting into scoliosis, chiropractor Dr. Steve who could feel a difference in Isaac’s nervous system (Isaac had less than 4 seizures for the day at that point!)
and than Miss Emma. His newest addition to the team and destined to be a favorite. She did 45 minutes of music therapy with him and during that time she encourage me to sing to him because of the endorphins/serotonin released by a child’s brain in response to his mother’s voice. Isaac thought it was funny and promptly began to smile and then chuckle. Music to my ears!!! I didn’t care that he was laughing at me 😉
We hope that you all are well and promise to update sooner this time. We still have adventures undocumented to share here with you!