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Apr 6, 2017 Latest post:
Apr 24, 2017
Tristan Geisler is a 14 year old boy with refractory epilepsy. Refractory epilepsy is just the term doctors use to say that medication isn't helping with the seizures. Tristan has been on more than a dozen types of medication and none have stopped his seizures. We've even tried non traditional medicine such as CBD, which doesn't work either. Sometimes Tristan has 6 seizures a day, but sometimes he goes as long as a week without a seizure. The medication helps somewhat but not completely. The medication is also debilitating: Tristan was falling asleep for 1/2 the day in traditional schooling, so now he is home schooled. Over the years Tristan has lost much of the social activity he used to have in school due to his condition and he's lost touch with many friends.
This all began in 2014. At the time Tristan was a healthy 12 year old boy with amazing grades in school and a great network of peers. He was enrolled in Lineville Intermediate School in Howard WI where he enjoyed playing the violin, running on cross country and being active in his boy scout troop. One fateful day in September of 2014 Tristan had his first seizure. He had been feeling ill and wasn't in school, his symptoms included a high fever and tiredness. But urgent care said it was just a flu. He had only been out of school a day when he had that first seizure. We rushed him to the hospital where he was quickly transferred to the pediatric section of St Vincent's hospital in Green Bay.
The first day in the hospital was a living nightmare. Tristan was having a seizure or more an hour and the few times he was awake he was just screaming. Eventually, under direction of the doctors and after a couple days of too many seizures, he underwent a phenobarbital coma which is a medically induced coma meant to protect the brain. His seizures stopped but he was in a coma. After a few days they tried to take him out of the coma but he would keep spiking in seizures, some 40 seizures a day. At this point Tristan had been diagnosed with viral Meningoencephalitis. This is meningitis and encephalitis combined in what is sometimes one deadly combination, but at least it wasn't bacterial- if it had been he would have already been dead.
After a week of no progress and blunders by the medical staff (such as missed doses of medication which caused seizures) we insisted on a transfer to American Family Childrens Hospital in Madison WI. There Tristan would remain in a coma for another 5 weeks. This was a very trying time for the whole family, frankly it was hell on earth. But miraculously through medication and the powers of the ketogenic diet, Tristans seizures became more controlled to the point where he stopped having them in the clinical setting. They saved his life at American Family Children's in Madison. After he was on the road to recovery, one of the doctors came forward and told us how extraordinary it was that Tristan actually survived. The Doctor said Tristan was so close to being gone so many times and she had seen it go that way before. We are truly blessed that American Family Childrens Hospital and God saved him!
Tristan came out of his coma around the 6th week and he couldn't speak, he couldn't eat, he forgot absolutely everything. I remember being absolutely thrilled when he simply said "Dad! Dad!" to me and kept repeating it. That's about all he could say, and of course soon after "Mom". He had to relearn how to speak, he had to relearn how to eat, he had to relearn how to walk. It was a whirlwind of a recovery and felt like we were rehashing things from long ago. It was almost like all 12 years of his life were on fast repeat mode. His favorite movies during recovery was goonies and his favorite show was sponge bob. Eventually we got his laptop back to him and he played minecraft from the hospital! He made good friends with his favorite nurse Matt. Matt was so wonderful to him, he even brought in his guitar once and sang to Tristan. Tristan liked going down to see the dogs in the hospital when they'd bring them. Although he couldn't walk yet, we'd take him down there and he'd get so happy to see the puppies.
Anyway, Tristan was in the hospital out of his coma recovering by sometime around late October. We spent thanksgiving as a family together in the hospital, some folks had donated turkey dinner. Recovery in the hospital was tough but Tristan was a trooper. By Christmas of 2014, after more than three months in the hospital, Tristan was finally ready to come home. He had a AFO on his leg, which meant he had limited mobility making it hard to return to athletics, etc. He returned to his house at school where he had forgotten who all his friends were. This was a difficult time for Tristan.
He finished 6th grade and we moved him to private school thinking smaller class sizes might help, but this too had a host of problems such as no support for his needs. He has been recovering since 2014 but sometimes progress is slow. This year he enrolled at bay view middle school in 8th grade but after some issues caused by the medication we had to dis-enroll him and begin homeschooling. The behavioral issues of the extreme amount of medication he is on combined with the sleepiness don't make for an ideal life for a 14 year old boy.
Last year I started a new job at Insitu, which is a division of Boeing corporation. Prior to being a Boeing employee, my insurance only extended throughout Wisconsin. But via the excellent health insurance provided by Boeing, it has enabled us to leave Wisconsin doctors and try the doctors at the world-class Mayo clinic in Rochester MN. These doctors have suggested a potential cure: Temporal Lobe Resection. If successful, this could mean an eventual ween off the medication and a return to life as normal for Tristan. But it's still brain surgery which has risks, as low as they are.
We ask for your prayers and your thoughts during this time.
Tristan's initial surgery is on April 10th 2017 at Mayo clinic Rochester. His followup surgery, the resection itself will be sometime 3 days to 2 weeks after the initial surgery. Jen, his mom (my wife) will be with him the entire time and meanwhile his brother Nate and myself (Ben, Dad) will be coming and going throughout the process.
I will try to post journey updates as much as possible.
Side note for those wondering how this condition was caused in the first place, to a normal and healthy 12 year old boy:
Sometime near the end of his recovery we found out that his blood work for EBV (the epstein-barr virus) showed he might have had this illness. EBV is also known as mono and has similar symptoms to what Tristan was experiencing and it was going through his school at the time, so this remains a possibility (actually it's the ONLY possibility since Tristan was tested for dozens of causes for Meningoencephalitis, including genetically causing symptoms such as immune issues). But we'll never know for sure if EBV was the cause 100% sure since he could have contacted EBV at a prior date and he also received IVIg treatment earlier in his hospitalization which can cloud the results of the EBV test. In any case, EBV has a VERY low chance of causing Meningoencephalitis, but it does happen. In my opinion as Dad, and the opinion of a couple of this doctors, this is what caused his Meningoencephalitis and the Meningoencephalitis eventually caused the refractory epilepsy condition. His pediatrician is absolutely convinced this is what happened as is one of his neurologists. Some are less convinced... we'll never know for sure.