The last 3 years has been so difficult…. We had a 12 year old son that had seizures but he was able to live a normal, happy life until puberty hit…. Then our nightmare hit…seizures went crazy, he started fainting,, and then the huge cognitive issues began. The climbing out the windows at 1 am….and getting lost. Such a long and horrible story…. We have found out so much thanks to Dr. Diana and started the histamine blockers and what a difference it has made for seizure control. BUT the medical world has no clue and then starts fighting every diagnosis we have of POTS and MCAD and tries to take away medicine.
Our nightmare got worse one month ago, when they took away the dye free benedryl and started changing seizure medicine. They had to prove that it was the dye free benedryl that was making my child sleep for 18 hours a day…. Instead, what happen is my son crashed with a blood pressure of 69 over 33 which ICU came to our rescue when they manually pumped him full of fluids to bring him back to us. They ended up doing a spinal tap with sedation and what happened was amazing. My son came out of it talking up a storm and making sense. The medical world said ..... This happens sometimes that they talk out of their heads. Hmm…. My son was making sense for the first time in a while but 3 or 4 hours later Caleb was back to sleep and no longer talking….
I am about ready to go nuts….. it is the hardest thing to lose your son cognitively….. I am praying Dr. Diana our new doctor can call you and get a plan. Caleb’s life depends on it….. Also….I believe Strep is playing a role as this time he had a positive strep test and 3 years he did too. Antibodics will make him hallucinate…..he almost climbed out our upstairs bedroom window… Thanks for listening. Is there other cases like this??