Parents and Caregivers

I have only had one confirmed

Submitted by RLKIII on Mon, 2017-04-10 - 22:32

I have only had one confirmed seizure; it was after a head injury about 18 years ago. Other than that, when my adrenaline gets pumping I get a shooting pain up the back of my neck and I can't move my head or my jaw for a few seconds then it kinda feels like I level out and I return to normal.  My condition is not why I'm up late posting my thoughts and praying for help.Both of my daughter's (1 yr old. & 3.5 yrs old) have what appears to be seizures and we have been to countless doctors to no avail. Their individual incidents last from a few seconds to a couple minutes in legnth but the series of individual incidents can last for an hour at times. They also range in severity from their eyes and head rolling back for a second to their whole bodies being stiff or shaking back and forth. We have tried to track the episodes but there doesnt seem to be any pattern that we have seen; time of day, rest level, food intake, light levels, flashing lights, do not show a pattern or trigger. What is strange about their episodes is that they snap out of them when you talk to them or touch them, they are never tired after the episodes, and they don't even seem to know they have had an episode.  Additionally, they have both been diagnosed with delays in all developmental categories. Our oldest didn't walk untill she was two; she walks fairly good now but can't run or climb stairs without assistance. She only says about 30 - 40 words, and cannot write, draw, button/unbutton clothes, zip/unzip clothes, or tell us what she needs or wants (that last part hurts me and her mom The most). The youngest (13 months old) cannot sit up, crawl, or eat whole food. Both are extremely near sighted. The oldest had corrective eye surgery because she was severely cross eyed and she had tubes put in her ears a few months ago. Our youngest had an upper left pole appendectomy where they removed 60% of her left kidney and an extra uterer when she was 7 months old.We have seen countless doctors from pediatricians  (x 4), neurologists (x 5), geneticists  (x 2), and PT/OT  (x 10). They have been evaluated by experts in everything from Cerebral Palsy to Autism to Down Syndrome. We have been to two military hospitals, Children's Mercy in KCMO, UAB Birmingham AL, Midtown Medical in Columbus GA, and at least one more clinic in Atlanta that I can't remember the name of. My girls have been through numerous EEGs (1hr, 24hr, & 72hr), EKGs, genetic mapping, MRIs of their brains/spines, hormone tests, painful needle in the muscle tests, physical exams, and much more then any child should have to endure.One of the neurologists put our oldest on Kepra to see if it would help but it made the seizures worse. He took her off of it a few months after she started taking it.Their mother and I are both in good health, neither of us have ever used drugs, we don't drink very often, and my wife was very careful with her diet when she was pregnant. She didn't drink any alcohol or caffeine at all. Their is no history of birth defects, disabilities, or anything in either of our families.As a military man, I thought I would never go through anything harder than I did during my numerous combat deployments. However, knowing that my babies are in pain and they need help that I cant give them has shown me that I was wrong. This is the hardest thing I have ever been through.I don't know what else to do...Thank you for your time.RLK III