Tate was born January 16th 2004, at Southwest Health Center in Platteville WI. He was 6lbs 7oz and 19" long. He was six weeks premature; therefore he was taken to St. Mary's Madison to the NICU where he spent 3 weeks. He was treated for jaundice under the biliruben lamps for four days. He was permitted to leave the hospital after consuming 90cc (or millimeters) of formula.
He was finally released in February, however about a week later he was taken to the emergency room for a low body temperature of 90.5 degrees Fahrenheit. He was life flighted to St. Mary’s Madison and again spent 4 days in the NICU. The doctors tested him for an infection with no clear diagnosis so he was released again. He went home and was prospering well.
On April 11, 2004 he started having mild seizures. He was taken to the emergency room in Platteville, where he was stabilized and life flighted to St. Mary's Pediatrics. He had an EEG and an MRI done to show if the seizures had stopped or if there was brain damage. The seizures stopped due to the Phenobarbital that he was given and the MRI showed no brain damage. He was released about 5 days later. His temperature continued to go up and down. He was stable for a month and a half.
On May 30th 2004, Tate began having seizures again. His medication was increased and changed without improvement in his symptoms. We decided to take him to the emergency room in Platteville again and was once again was life flighted to St. Mary's Madison where he was put in the Pediatric Intensive Care Unit. Once my mom and I arrived things were not looking good for Tate. His Lactate Acid was very high without promise that it could be lowered. It was a very scary night for they told me that he might pass during the night. It was suggested we seek care somewhere else.
We made the decision to have him taken to Children’s Hospital of Wisconsin, in Milwaukee. He was placed in the PICU and stabilized. He was put on a constant EEG to monitor his seizure activity. The seizures continued on without clinical signs of him seizing. He was put into a coma for about 4 days to stop the seizures. Even with the coma the seizures failed to stop. He was brought back out the coma and put onto a different seizure medication called Topomax. The Topomax and Phenobarbital together helped improve his symptoms. In order to get his lactic acid to a normal level he was placed on a ketogenic diet.
His diet consisted of Pregestimil, Microlips, Beneprotein and Biotin. He started to thrive very well. He had a feeding tube put in on June 21, 2004 due to his poor gag reflex. He had a Barium Swallow Study done with results of aspiration, which are liquids going into the lungs instead of the stomach. This would put him at risk for choking and pneumonia. He now receives continous feeds during the day and night.
He was finally diagnosed with Menkes Disease in January 2005. He shows the classic signs of this disease such as brittle hair, seizures and hypotonia (poor muscle control) and bladder diverticula’s. He currently doctors in Dubuque Iowa, while also visiting physicians in Milwaukee, for gastroenterology, pulmonary, genetics and neurology. I was notified recently that I am a carrier of this disease, meaning I have a 50% chance on passing it onto another child.
He has 9 teeth and has become more active. He will start early childhood in the fall. He had another G-tube placed at the beginning of the summer, which is going very well. He also has been placed on a shaker vest to break up the secretions in his lungs. He gets the treatment twice a day which he loves because he coos, laughs and kicks his legs. Overall, he is doing very well.
Posted: August, 2007 (New pictures added in 2011)