We are back from yet another trip to Boston. After three appointments, more blood work and labs , still no real plan. :( Matthew's weight was down some 27 1/2 pounds and he was about 36 3/4 inches tall. He has grown a little in height in the last 6 months, but no weight gain and looks even thinner.:( We have two new specialists that will be added to his mix of doctors who already follow his care. He will be seeing a kidney Dr. and an autonomic Dr.. We will also be seeing the CAIR team (intestinal rehab, clinic) . Terry is busy trying to schedule all of his new appointments. We already have to go back in March for his motility Dr. and urologist. It looks like we will be going sometime in April for the other appointments.
Here's a quick rundown of what went on at his last appointments. His mito Dr. thinks that nothing is going to improve with Matthew's GI function unless we try to get Matthew's fluid issues figured out. He can not handle more than 30 oz. of fluid/day without causing problems. He can not tolerate any fat or excess sugar. He is always starving but can only eat a restricted amount of food otherwise none if it gets digested and causes belly pains. His food choices are becoming very limited as more of his "normal" foods are emptying into his ostomy bag undigested.
His metabolic appointment went ok although he is more interested in figuring out exactly if Mito is primary or secondary to a bigger problem. He also wants to do more testing to figure out if Matthew has a Mito depletion. We really like him, but our main priority right now is to get Matthew growing and try to keep his GI system from getting worse or even shutting down all together.
Our last appointment, the one that we usually find useless was... well..."Useless". It was his GI appointment. After talking again for a few hours, he came up with one of his "plans".
1. He wants us to double Matthew's pancreatic enzymes (they don't seem to do anything for him)
2. He's adding another antibiotic for bacteria overgrowth (Rifaximin)
3. He wants Matthew to avoid fructose, polyols, sorbital, xylitol, maltitol etc.
4. Try to give him peanuts( he CAN NOT digest fats . That will really feel good coming out of stoma in hard pieces...)
5. Try peppermint oil, cornstarch, turkey legs and hummus..... (Seriously!!!)
The CAIR program has some very good GI doctors. Hopefully they will have more of a clue than his current Dr. Matthew's nutritional status is horrible. He is skin and bones but no one seems to know what to do. :(
On a brighter note were able to go to the Museum of Science. Matthew was not feeling well the entire day, but he never complained once. He loved the food exhibit and dinosaurs. We missed the one thing he really wanted to see...The butterflies. They filled up shows before we got there, but Terry was able to get four free tickets for next time.
Matthew was also very excited to give Pancakes a new Twin sister from the American Girl Store. He named her Waffles Eithene Butter.
We were also able to visit with Eithene, Jessica and the rest of her family. Matthew loves to draw Eithene pictures and had several new drawings to give to her. He also showed her some of his new songs on his "ipod"(touch screen MP3 player that he thinks is an ipod touch)
He even sang her a few of his favorites including Baby Beluga and Ziggue Zon. We just love her.
Here's a quick rundown of what went on at his last appointments. His mito Dr. thinks that nothing is going to improve with Matthew's GI function unless we try to get Matthew's fluid issues figured out. He can not handle more than 30 oz. of fluid/day without causing problems. He can not tolerate any fat or excess sugar. He is always starving but can only eat a restricted amount of food otherwise none if it gets digested and causes belly pains. His food choices are becoming very limited as more of his "normal" foods are emptying into his ostomy bag undigested.His metabolic appointment went ok although he is more interested in figuring out exactly if Mito is primary or secondary to a bigger problem. He also wants to do more testing to figure out if Matthew has a Mito depletion. We really like him, but our main priority right now is to get Matthew growing and try to keep his GI system from getting worse or even shutting down all together.
Our last appointment, the one that we usually find useless was... well..."Useless". It was his GI appointment. After talking again for a few hours, he came up with one of his "plans".
1. He wants us to double Matthew's pancreatic enzymes (they don't seem to do anything for him)
2. He's adding another antibiotic for bacteria overgrowth (Rifaximin)
3. He wants Matthew to avoid fructose, polyols, sorbital, xylitol, maltitol etc.
4. Try to give him peanuts( he CAN NOT digest fats . That will really feel good coming out of stoma in hard pieces...)
5. Try peppermint oil, cornstarch, turkey legs and hummus..... (Seriously!!!)
The CAIR program has some very good GI doctors. Hopefully they will have more of a clue than his current Dr. Matthew's nutritional status is horrible. He is skin and bones but no one seems to know what to do. :(
On a brighter note were able to go to the Museum of Science. Matthew was not feeling well the entire day, but he never complained once. He loved the food exhibit and dinosaurs. We missed the one thing he really wanted to see...The butterflies. They filled up shows before we got there, but Terry was able to get four free tickets for next time.
Matthew was also very excited to give Pancakes a new Twin sister from the American Girl Store. He named her Waffles Eithene Butter.
We were also able to visit with Eithene, Jessica and the rest of her family. Matthew loves to draw Eithene pictures and had several new drawings to give to her. He also showed her some of his new songs on his "ipod"(touch screen MP3 player that he thinks is an ipod touch) He even sang her a few of his favorites including Baby Beluga and Ziggue Zon. We just love her.
