anyone with a child with extreme short gut syndrome

my granddaughter is taking care of her 2 month old baby with extreme short gut syndrome and would like to talk to someone in the same position.  he will need a small intestine transplant and maybe liver within the next year

[CalGal]

You might want to check this out: http://eleanorbrogan.blogspot.com/

[Beda]

I spent  two months training in the Small Bowel and Multivisceral Transplantation at Indiana University, they are amazing!!

Another good new is that they have the shorter waiting time list of the country.

The transplant usually occur in less than one month of the evaluation.

Good Luck,

Beda
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[mmajean40]

I am the adopted mother of 2 children with short-gut syndrome, both preemies and am about to adopt another child with the same issue.  So far none have had transplants - two would be candidates, but children seem to overcome some of the issues associated with malabsorption.  My son came home at 5 mos old 22 hours a day on g-tube feeding - weaned off within 4 months.  My daughter, adopted at 3, is just now at almost 10 years old being weaned off tube feedings (1/3 of large bowel removed).  It can be a slow process.  I'm looking for direction myself.....it's just between me weighing them as I wean them to oral feeding........jean henry, daytion, ohio

[mmajean40]

I am the adopted mother of 2 children with short-gut syndrome, both preemies and am about to adopt another child with the same issue.  So far none have had transplants - two would be candidates, but children seem to overcome some of the issues associated with malabsorption.  My son came home at 5 mos old 22 hours a day on g-tube feeding - weaned off within 4 months.  My daughter, adopted at 3, is just now at almost 10 years old being weaned off tube feedings (1/3 of large bowel removed).  It can be a slow process.  I'm looking for direction myself.....it's just between me weighing them as I wean them to oral feeding........jean henry, daytion, ohio