| "Need information regarding digestion problems and Moebius" |
| (June 10, 2000) A mother writes: "I would like to know if any one has any information about digestion problems and Moebius. My daughter was put on propulsid because of her low muscle tone. Her esophagus and intestines work to slowly and the Propulsid helped her stomach empty more efficiently. Now they are taking Propulsid of the market and they want her to use Metoclopramide. It tastes terrible and makes her sleepy. Is there a more natural way to help empty her stomach more efficiently. Do other people with Moebius use Propulisid or Metoclopramide?" If you have any helpful information, please email -[email protected] |
| (August 14, 2000) The following is from a family whose teen-age child has Moebius. If any of these experiences sound familiar, or if you'd like to get in touch with another teenager (17 year old) please email me - [email protected]t (My child) is doing quite well - he has 6, 7 and 12 nerves involved with left club foot and minor skeletal deformities in fingers, he is hearing and visually impaired.... Recently (my child) became sick (April) - for over a month he was undiagnosed until end of May, appparently his esophogus has weakened and the valve between the stomach and the esophogus does not stay closed after he eats and bile, acid and recurgitated food refluxes back up, we have only seen one specialist (gastro) who knows nothing about moebius, states that another nerve may be invovled (the 10th, vagus) I have asked for a second opinion and we are also being referred to a neurologists in London, Ontario. (My child) is on a very strict diet, bland, high protein, and is on several meds to control the amount of acid being produced and before meals one that strengthens the esophogus. - goes with the flow and has a very positive attitude, he rarely gets down. He is in grade 12 at a french language school and works full time (second summer) as a bilingual interpretor at a historical site nearby. He also has his drivers licence!!!! |
| "Hi Sandy! I have a 9 month old with Moebius and I want all the information I can get. Please put me on your mailing list! Have you covered any information about children refusing to eat possibly due to swallowing difficulties?? Thanks so much, Donna Kremer [email protected]" |