Re: Cyclic vomiting issues again/Loriann

[Guest guest]

--Hi Loriann

My almost 2 year old DD has a j for feeds and g for venting at all

times. She is on TPN 18 hours a day plus very slow continuous j

feeds. We replace the G tube drainage with pedialyte through the j

or with IV normal saline. My question is this: Does Lucas back up

formula and meds put in his J tube and have them come out the g

tube? If yes, what do you do about it? probably has pseudo

obstruction.

We use IV zofran for vomiting and it is very effective especially if

she's only retching. It works best if we give it beore she gets too

bad. It comes in pills and meltable wafers as well. It's been a

lifesaver here. Has Lucas tried it?

We have the same problem with giving meds too fast or more than 5ml

at a time. Here things will back up into the bag or leak out around

the button. has 2 mickey buttons. We replace both at home

but a couple times the j tube has closed up really fast and we had to

go to the surgeon's office to have the stoma reopened.

initially had a g-j and it kept kinking because of her dysmotility.

Take care

Heidi, Meather's Mom

- In Mito , LMelby1000@a... wrote:

> Darla,

> Lucas' feeding issues started with sudden episodes of repeated

vomiting.

> He is J-tube fed and I will let you know what I think impacts it.

> 1. Sleeping without head elevated at at least 30 degrees. He is a

wiggler

> and thus can even have his head lower than his feet. This happens

for him

> despite being J-tube fed.

> 2. Constipation impacts him immensely. No bowel movememts the day

or two

> before can be seen by increased vomiting.

> 3. We have had fluctuating gastric emptying scans. He has gone

from normal

> to abnormal in a couple years time. It has actually been thought

that Lucas

> has delayed motility and therefore even though the stomach empties

that does

> not mean it can go further.

> 4. If we give too much volume or give him his morning meds too

fast that can

> trigger vomiting episodes at the beginnning of the day. We even

start his

> drip feedings about an hour afterwards and wait at least 30 minutes

after his

> feedings that he received during the night.

> Currently Lucas is J-tube fed and his G-button is vented into a

urinary leg

> bag. The venting on a 14-20 hours a day was just begun this year.

Prior we

> always had an extension available so we could attach a 60 cc

syringe and vent

> whenever he seems to be belching more or starting to reflux.

Sometimes no

> matter what you can't be quick enough. We initially carried a roll

of bounty along

> with us now we will carry a washcloth or bath towel with us. Also,

I have

> seen people taking emesis basins with them. Have they considered J-

tube

> feedings? If she has a Mic-Key button they could make it into a G-

J tube that you

> could feed her via the J-tube at night and prevent stomach volumes

being too

> high. They make G-J buttons that would require radiology to put

in.

> HTH,

> Loriann

> mom to 3 boys- & 12 yrs old and Lucas 8 years old with

suspected

> mitochondrial encephalomyopathy, hypothyroidism secondary to

pituitary

> malfunction, cortical visual impairment, abnormally slow EEG,

ataxic, global

> developmental delay, impaired motility, GERD, J-tube fed since 4

years of age but has

> the sunniest disposition