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Sep 7, 2018
Hi, my name is Mighty Matthew and I'm 13 years old. I have been diagnosed with Mito disease complex l and lll and CIPO(chronic intestinal pseudo obstruction). Please sign my guestbook.
Bradley age 22(6-1-1996)
Steven age 19(12-22-1998)
Matthew's interests:,Superheros, monkeys, tree kangaroos, fairies, Pokémon,Minecraft, spy gear, books and gem stones
Happy Mail POBox 2777 Plattsburgh, NY 12901
My name is Terry and my wife is Lisa. Matthew is the youngest of our three sons. Matthew was born at 37 weeks weighing 7 lbs 3 1/2 oz and 20 inches long. He was perfectly normal at birth. Matthew was a happy baby and hardly ever cried. He grew fine until about six months of age. He weighed 20 pounds at his six month check up and was meeting all of his milestones .
At his one year old checkup, his pediatrician noticed that he had plateaued on his growth chart. Matthew weighed 19 pounds. Matthew had stopped growing. Matthew stopped gaining weight and has severe abdominal bloating and constipation. This was the first sign of something being wrong with Matthew. Matthew also did not walk until he was 19 1/2 months old. Even now, he prefers to sit. (2006) Matthew gets abdominal bloating every day and the bloating goes away when he sleeps. Matthew eats on average 1,000 - 1,200 calories per day. He has had no vomiting or diarrhea which would suggest some form of a malabsortion syndrome. He sleeps a lot and is not very active. He likes to sit on the couch and watch TV, look at books, and do puzzles etc. He is now on vitamin supplementation and receives physical therapy, and occupational therapy. Matthew has had extensive medical testing to find out what is wrong with him.
He was admitted to the hospital four different times in 2006 to find out what is wrong with him. Two of them were at Fletcher Allen Health Care in Burlington, Vermont and two were at Children's Hospital Boston in Boston, Massachusetts. So far, most of Matthew's testing has come back negative. He has had three colonoscopies, x-rays, a MRI of his head, a CT scan of his abdomen, rectal, colonic, and duodenal motility testing and many other diagnostic and blood tests. He has been ruled out for Celiac disease, Chrohn's disease, Colitis(3 normal colonoscopies). He has been tested for Cystic Fibrosis(with 3 normal sweat tests and CF Ambry genetic testing) and that was negative. He is currently being followed by Dr. John Watkins at Children's Hospital who is coordinating Matthew's care with the other specialists. Matthew's hospitalization in December 2006 found that he has some urinary problems. They found that he has urinary reflux, enlarged bladder, and megaureters. Matthew has since been cleared of the urinary reflux as of December 2007. Matthew has poor muscle tone and very low muscle mass. His cognitive skills are at age level and above average in several areas. The doctors are reassured that what ever nourishment he is able to process is keeping his brain functioning normally. Matthew has a voracious appetite and gets more than enough calories from the food he eats. His doctors tell us that Matthew should be growing with the amount of food he eats.
He was admitted in April 07 for a central line placement to have IV nutrition. He was unable to tolerate the IV feedings. He swelled overnight with the first treatment gaining over three pounds. He spent the whole next day urinating the extra fluid out. They attempted a smaller amount of nutrition but he still wasn't able to tolerate even 3 oz before he got sick. The central line was removed because the risk of something happening to it outweighed the benefits. He saw an opthamologist for his eyes. She determined that Matthew has iris transillumination. It means that his irises are too thin and allow too much light throught them. He has to wear special glasses to protect him from the light. They do think that Matthew has a type of Mitochondrial disease but they don't know what type. He had blood work drawn for the entire Mitochondrial disease panel, but this was all negative. We were told if this didn't show anything Matthew would probably need a muscle and nerve biopsy. We traveled to Atlanta, GA in January 2008 to have Matthew's muscle biopsy done. It takes up to three months to get the results back. Matthew has also developed some problems with his sugars. He had an episode where his blood sugar was 295 and we now have been testing his sugars 2 - 3 times per day. The Doctors in Boston feel he is not diabetic but this a new symptom of his underlying and unknown condition. He had a Peg tube placed on September 4th 2007 to help with the abdominal distention. It seems to be helping a little bit.
In January 2008,Matthew went to Atlanta to have a fresh muscle and skin biopsy done. We just received the results this week. Matthew has been diagnosed with Mitochondrial disease complex l and lll. He has also been diagnosed with CIPO(chronic intestional pseudo obstruction). We will have to follow up with his doctors in Boston every three months.