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Dr. Andrew Rynne

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Is it OK to continue feeding by tube for someone with menkes disease

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Dr. Vaishalee Punj

General & Family Physician

Practicing since :2003

Answered : 1579 Questions

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Posted on Wed, 13 Aug 2014 in General Health
Question: Dr. Narasi, I have an 18 year old grandson who has Menkes Disease. His ability to chew and swallow is declining and it was recommended by Doctors OHSU in XXXXXXX Oregon to place a feeding tube to supplement nutrition with Jevity. He had the tube (sewn in, due to possible breathing difficulties during local anestesia. He had this done last Wednesday. He was sent home with Miralax and Dioctyl Sodium. He is to take a packet of Miralax once a day and the other twice a day. He started on the stool softners Saturday night when it looked like he may be constipated. He has still not had a bowel movement. His mother has not started the feeding due to the soreness of his incision. He is taking food and liquid by mouth. She is giving the stool softners and water through the tube. We have been trying to reach the hospital all day (it is two hour drive). He doesn't have a specific doctor so a nurse is supposed to be calling but has not. We are very concerned and don't know if there is something we can do until they call. We don't know if we can start the feeding or if that is too much in his stomach. He gets 4 8oz. cans of jevity over a 10 hour period with a pump.
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Answered by Dr. Vaishalee Punj 2 days later
Brief Answer:
Feeding can continue

Detailed Answer:
Hi
Thanks for your query.

I am a general physician and have experience working with a gastroenterolgist. I will try my best to help you within my expertise.

In my experience, you will need to continue the feeds. You will need to find an alternative for constipation. Since he is already taking two laxatives orally. We can give him rectal suppositories that will help him pass stools. These are easily available over-the-counter.

Hope it helps.

Dr Vaishalee
Above answer was peer-reviewed by : Dr. Ashwin Bhandari
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