Get your health question answered instantly from our pool of 18000+ doctors from over 80 specialties

138 Doctors Online
Doctor Image
Dr. Andrew Rynne

Family Physician

Exp 50 years

I will be looking into your question and guiding you through the process. Please write your question below.

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

Answered by
Dr. Vaishalee Punj

General & Family Physician

Practicing since :2003

Answered : 1579 Questions

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.
Answered by Dr. Vaishalee Punj 2 days later
Brief Answer:
Feeding can continue

Detailed Answer:
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

The User accepted the expert's answer

Share on
Question is related to
Diseases and Conditions
Medical Topics

Recent questions on  Feeding tube

doctor1 MD

my mother is 87 and has not eaten in 2 weeks drinks 8 oz of gingerale per day she is home with me on hospice. Before she came home her potassium level was low and then she stopped the iv s and blood work and denied the feeding tube How long can her heart survive this. She also has copd her sats are 75-83 she refuses the oxygen she had a fall 3 months ago broke humerous requried surgery then her eating got worse. They did discover through a CT that she had a previous stroke ( the fall I think) and dementia plus PAD

doctor1 MD

Good Morning sir, My mother aged 84 yrs got stroke on last monday (04/12/2017)morning at 7.00am. We admitted in xxx hospital. XXXXXXX .they taken CT scan and impression is Lacunar infarcts in leftlentiform necleus. And repeat CT scan on next day...

doctor1 MD

I have locally advanced pancreatic cancer, I have a feeding tube because I have no appetite and take pain pills. 8 weeks ago I had a pet scan that showed a complete metabolic response which indicated no cancer. I understand imaging test can...

doctor1 MD

At 2 days old my nephew has been placed in the NICU because he has a hole in one lung. He is now on a ventilator and they have also inserted a feeding tube. I thought this usually only occurs in premature babies but he was 39 weeks and weighed 8 lbs and the mother never had any complications. What could cause this and how long is the recovery time?

doctor1 MD

Mother(67) has been eating like a mouse for years and has always been a small framed Woman. She developed some other issues and while getting treatment for those issues, Cancer was discovered in the Ovaries and Omentum. (Greater or lesser was not...

doctor1 MD

My dad has been suffering from having acid reflux and has the hiccups for 3 years. We were informed that he also has a swallowing issue and the lung specialist wanted him to have a feeding tube. He gasps for air at times and causes him to have shortness of breath. Can you tell me what I can do or refer me to a specialist that can help him

doctor1 MD

My brother had his stomach removed almost two years ago. He is a type one diabetic. He cannot keep any weight and currently is on dialysis. Only a small percentage of his liver is functioning. His nutrition level is at a 17 and the doctor told us today that he has fluid around his lungs and heart. Only 10% of his heart is working. They told us that there was nothing more they could do because he has refused a feeding tube....and his body is too fragile for any other treatment or surgery. I m just wondering what is his life expectancy at this point....and what can we do to increase that 10%?