NOW dr says he may need a g-tube!!??

[chrismclar]

Hi - I haven't posted in a little while. My son Sean is 11 months old. (born 4-13-11) He was trached at 2 months and was dx. at 5 days with pyriform aperture stenosis. He had trouble gaining wt initially since it was so hard to breathe through his nose. he was on an OG tube until he was trached. then he has been bottle fed. he has also had three other surgeries. anyway, he was put on pediasure almost 2 weeks ago. we had a meeting at the long-term care facility he is at. (st. mary's hospital for children in bayside, queens, NY) and the dr. in charge of his unit now says that he should get a g-tube. also -he had a gi series last tues, 3-27 and it shows that his stomach is contracting too slowly.
any advice? i am so nervous. we thought it was hard dealing with the trach but kept thinking, at least he feeds by mouth. BTW - the reason is the dr. is pushing for the g-tube is that he has had such trouble putting on wt. he is 15 lbs 5 oz. and nearly 28 inches and 11 1/2 months.

=====Christine


Sean born 4-13-11 full-term pyriform aperture stenosis, trach 6-14-11, craniosynostosis repair 10-31-11, obstructive hydrocephalus -endoscopic third ventriculoscopy 2-17-12

[SammyJo]

I can't give you much insight on g-tubes, BUT kids with CNPAS tend to be smaller kids/adults. Sam has always stayed on the weight chart, but got down to 2% at one point. I joined a Facebook page for parents with children with a solitary maxillary incisor, which is commonly paired with CNPAS. Many of those children were not trached, but still have growth issues. Only one had a g-tube because she has swallowing problems. There is one child that was previously trached and is very small for his age, only 19 lbs at 2 years. It is very common for extra caloric supplements to be added to formula/milk to aid with weight. I would definitely read the posts on that page (SMCCI-One Tooth Wonders), it might help with weight gain ideas other than feeding tube options. Studies done on CNPAS and SMMCI show that at least 50% of children have smaller stature, some are just petite and some have growth issues due to pituitary gland malformations and hormone deficiencies. The hormones don't come into play until age 2, but it is pretty obvious early on if there are going to be growth issues. Good luck! Would love to know what your Drs. say about growth issues that are paired with the condition. Feel free to PM if you have any other questions. There are a few of our kids born around the same time with CNPAS. Sam just turned 1 March 7th and I know another little girl will be 1 April 23rd. Nice to have other parents with similar experiences!

[principe]

By what Alex is saying above it sounds that you shouldn't rush for a gtube. If such condition involves weight gain issues than it does sound like you just need to increase calorie intake. And if Sean is eating by mouth now that's such a big plus. If you go for a gtube then Sean is not going to have enough practice eating by mouth and he might loose the ability to chew or swallow and it wouldn't be good. Aldo got the flu 10 days ago and stopped eating solids for about 3 or 4 days during his illness and now that he's slowly gaining back his energy and I try feeding him solids he's not chewing them anymore. He's just swallowing the food and starts chocking on it. Just 3 days of not eating those solids made him loose the practice of how to eat by mouth. The gtube might put Sean behind on him eating by mouth as well. The more practice on eating by mouth the better. Try to find all info about his condition and then make your decision. A gtube shouldn't be an option unless he really couldn't eat by mouth.

[kadiera]

Having a g-tube doesn't mean they can't eat orally...in a hospital setting like you're describing, I'd probably only allow it if they wrote orders for continued oral feeds during the day & a catch-up feeding by g-tube at night.

[k181192652319119]

Originally Posted by kadiera

Having a g-tube doesn't mean they can't eat orally...in a hospital setting like you're describing, I'd probably only allow it if they wrote orders for continued oral feeds during the day & a catch-up feeding by g-tube at night.

I agree with kadiera, g-tubes are not the end of the world and if you continue oral feedings during the day and only use the g-tube as a way to supplement the missed food seems like a safe way to help with the weight gain.

[Bodie's Dad]

I aggree that a G-tube should be used as an option but sparingly. We had no choice with Bodie and because of it he takes nothing by mouth.

[Christamae]

If his stomach isn't contracting you would need a GJ or J tube so the food could bypass the stomach & go directly to the jejunum. You can still eat. Just use it to supplement