Posted on May 01 2018
Our little Everett Anthony was born on September 24th, 2017 at 7:43pm at Beatrice Community Hospital. Shortly after he was born he started to have seizures. His doctors at Beatrice watched him closely throughout the night, as he continued to have seizures. They soon had him transported to Bryan West Hospital in Lincoln, NE. He was there for a couple days and during his stay there he had 3 EEG’s, an MRI, and lots of lab work done. His neonatologist, Dr. Ansah, soon realized he was out of his relm. So he transferred him to Children’s Hospital in Omaha, NE where he spent a total of 6 weeks there. He had 2 EEG’s, another MRI, and LOTS of lab work done there. One of his labs came back showing he had high levels of methylmolonic acid in his urine, indicating he could have methylmolonic acidemia (MMA). This is a disorder where his body can’t properly process protein and it builds up a type of amino acid called methylmolonic acid, which can become toxic. His metabolic doctor, Dr. Lutz, wasn’t convinced that he had true MMA, as this should have been caught on his newborn screening and it was not. However; he treated it as he had this disorder. Shortly after starting a very expensive formula for this disorder, his levels began to normalize. So they slowly weaned him off it.
We are currently waiting to see if his levels come back normal after being on regular infant formula for a few weeks. We are also waiting on genetics testing to see what he could have that would be causing him to have seizures. Around Christmas, Everett ended up coming down with a cold, which lowered the threshold of his anti epileptics and caused him to have seizures again. We took him back to Beatrice to be admitted over night to load him with phenobarbital and watch him. Well they did a chest X-ray and found fluid in his lungs, so they sent us back to Children’s. We spent two weeks (over Christmas and New Years) at children’s. They ran multiple tests again and added more anti epileptics to his medication regimen. They were struggling with getting his medications just right so he wouldn’t continue to have seizures. He ended up coming home on January 2nd on 4 anti epileptics and 3 vitamins.
About a month and a half later we found out he is now having infantile spasms (a rare, severe form of epilepsy). We went to children’s mercy in Kansas City, MO and they started him on a couple more meds to help control these and get him more comfortable. He’s much happier than before and starting to show signs of development that he wasn’t doing before. We pray every day that the genetics tests will give us some answers; however, we’ve been told that about 50% of the time you never find out what’s wrong.