Keean has struggled with absorbing nutrients, has damaged villi, doesn't respond to immunizations and can't tolerate more than 38ml's and hour or he throws up. He does not act hungry and could go without eating for an entire day. He also has chronic diarrhea. Keean would not eat enough to gain weight on his own and associates food with pain so he had a feeding tube placed in September. At first he just had formula pumped into his J tube, but eventually was able to tolerate all his feeds through his G tube.
-Lack of response to immunizations
-lower muscle tone (can sit up and bare weight on his legs but will not pull himself up or sit in a crawling position for long). Less strength in his arms than legs.
Keean has been tested for numerous diagnosis. Some include: Cystic Fibrosis, Microvillus INclusion, Auto Immune Enteropathy, Maple Syrup Urine disease, kidney disease, thyroid disease, immune deficienccies and has had an MRI to see if there was any visible cause of low muscle tone. He has had numerous endoscopies where biopsy of his small intestine have been taken, but NOTHING has shown any sign of ANyTHING. We have been to a geneticist and have had genetic testing and have donated many ounces of his blood looking for answers.
Keean has a feeding tube so he intakes enough calories to gain weight and is on previcid for reflux. Because there is not yet a diagnoses, he is not being treated for any other symptoms.
Midwest Immunology Clinic, Children's Hospital and Clinics --Minneapolis and St. Paul, Neurology clinic, St. Paul Gastroenterology, Genetic clinic of St.Paul. I have also found different online support groups through facebook.
Keean was born full term weighing 6lbs 12oz and was 20 inches long. When still at the hospital after birth he threw up, but that was considered "normal" and we were sent home after 2 days. Keean lost 2 ounces before we were discharged (again considered normal).BUT when we went to our first check up he had lost another 2 ounces. That started our journey of weekly weight checks. He slowly became more irritable and was switched to nutramigen because they diagnosed him with a protein allergy. He was tested for pyloric stensosis, had an xray and ultra sound of his stomach and of his heart and an upper GI. The only thing that came of those tests was they noted his stomach was "slow to empty" and he had severe reflux. Keean continued to struggle gaining weight and was puking numerous times daily. He wouldn't eat enough to gain weight and if he ate 2 ounces he'd throw up 3. At 2 months old we were admitted to Children's Hospital where they ran several tests (all of which came back negative). We had to force him to eat every 4 hours and pray he would keep it down. While at the hospital he came down with the enterovirus and started malabsorbing sugar. He was placed on a carb free formula and put on TPN because he was losing weight quickly At 3.5 months Keean only weighed in at 9lbs. 8oz. which is less than 3lbs since his birth. While at children's he had an NJ tube placed to help him get enough nutrients and because it was down his throat made him gag and puke constantly so I insisted on a permanent feeding tube (GJ). This was placed in September and when he was able to gain weight off a very high amount of calories of just formula and no TPN we were able to take out his TPN line and go home. Keean continues to doctor because he has chronic diarrhea, damaged villi, a weak immune system and low muscle tone. He has not been responding to his immunizations and will bare weigh on his legs, but won't put weight on his arms or pull himself into a standing or crawling position. He will be 10 months old on April 2 and weighs 17lbs 5oz and has not gained weight in over a month. He has been puking more again and last week was malabsorbing sugar again. We are patiently waiting for answers or looking for some direction due to all sorts of negative tests.
Contributed by MOM Ashley Hanson