After the summer of steroids, we tried various other AEDs to no avail. Soren was seizing like crazy. He was holding his breath and turning blue. We had an oxygen tank on hand during his seizures. We were in a very, very bad place.
Then my friend Julie told me about another mom whose son had gotten stem cell injections and the injection had been their miracle. I contacted this mom, Azita, and learned all about Clayton.
Unlike Soren, after Clayton was born, he was developing normally, hitting all his milestones. He was doing really, really well and his parents, Geoge and Azita, had no need for concern. But then, at 6 months, Clayton started seizing. Like us, they tried many AEDs. They would have "honeymoon" periods with each drug where the seizures subsided, but then they always came back.
They tried the Ketogenic Diet, which is similar to Atkins in that it's high in fat and low in carbs. It takes a lot of persistence with measuring and weighing everything the child eats. Again, they had a honeymoon period, but then they lost seizure control.
They then tried the Vagus Nerve Stimulator or VNS. This is a small device, similar to a pacemaker, implanted under the skin near your collarbone. A wire (lead) under the skin connects the device to the vagus nerve in your neck. The doctor programs the device to produce weak electrical signals that travel along the vagus nerve to your brain at regular intervals. These signals help prevent the electrical bursts in the brain that cause seizures. Again, Clayton did not achieve seizure control.
They tried every therapy in the book, but nothing was working and Clayton was only getting worse. He had lost his ability to hold up his head and roll. He had to be fed with a dropper. He hadn't had a natural bowel movement in 9 months. They were out of options.
They heard about a Los Angeles doctor who did fetal stem cells injections in the Dominican Republic for various ailments. Desperate, George and Azita packed up Clayton and went. Within 48 hours of their first injection, Clayton had a natural bowel movement. It was worth the money just with that!
But more amazing things came to follow. He was able to be spoon fed again. His body began to regain strength and control. I met Clayton after his second injection. When I met him, he still wasn't sitting up or rolling over. The next time I saw him, he was on the floor, determined to roll over. And I witnessed him do it. Soon after mastering this, he worked on his army crawl. But then he wanted to move right on to walking. Which, after his 3rd injection, he now does. He can also sit independently and, after his 4th injection, is now putting together the "cause and effect" of toys. Oh, and he's now seizure-free!
After seeing Clayton the first time and hearing his story, we knew we didn't want to wait until we had done more meds, the Keto Diet, and a VNS. We wanted those stem cells to start working as soon as possible. If we had to try more meds and treatments in the mean time, so be it. But, as far as we were concerned, time was a wastin' and we had to go--NOW!
Amy
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