/Koti - this is long

[Guest guest]

Dear

What you describe is exactly what we experienced with Hannah just over a month

ago. No answers, but in the end I have the feeling that it was caused by severe

constipation. Its happened on one other occasion. There was no temperature, no

diarrhea, just throwing up everything, including 10ml of water. In hospital for

dehydration and to re-establish feeds (gtube). The only other possiblities were

an ear infection, or something wrong with her gut/feeding tube. Ears did have a

slight redness and some granulation tissue, but it seems to not have been the

reason for such severe vomiting. I even had her BM's tested for parasites, even

though there was no diarrhea. All blood, urine and faecal tests came back within

normal range, so it seems that constipation was the most likely culprit.

Seizures increased dramatically during the illness because no meds would stay

down long enough to be absorbed. They returned to normal levels for Hannah once

the vomiting was stopped.

The doctors used Maxolon (metoclopramide hydrochloride) at first but it did

nothing. In the end she was given Zofran (ondansetron) via her IV and it stopped

the vomiting immediately. It was stopped after a couple of days and we came

home. A day later she began to throw up again and we used the Zofran tabs to

get over the next couple of days, and she gradually became well over the

following week. All up she was vomiting on and off for 15 days, and lost 600g in

the process. She was only 14.5 kg and couldnt really spare the weight, but we

have revised her gtube formula to increase calories and gain some weight.

We have also increased Hannah's reflux meds as a result of this episode. She

takes Maxor (same as Losec/Prilosec - a drug called omeprazole). Hannah also has

overproduction of saliva which causes many problems with swallowing and

breathing. Twice in the last week she has turned blue because of it, and a month

ago I even dialled the ambulance number for the same reason. Because Hannah has

reflux but it reasonably controlled with meds I dont think that it was the cause

of the vomiting spell she had. Constipation however can be so bad that the body

doesnt want to allow any furhter input when there is nowhere for it go. Also,

when badly constipated there is the possibilty of toxins building up and

leaching into the body and that can cause illness in itself. Can you request an

abdominal xray to check her bowels?

Can you do the feeds while you are there with Koti in hospital? Hopefully the

staff would be glad of parent involvement and willingly let you do the feeds. I

do all Hannah's feeds when she is in hosp. and the staff think its great. I even

do her meds now too, and they are rapt, wishing all parents di that. I prefer to

do these things myself because I know Hannah better than they do and can respond

to the little signs that they would miss. Saves a lot of worry on my part too,

and is ultimately better for Hannah (she's been the victim of two major mistakes

made by hosp. staff in the past) I certainly agree with your thoughts that

continuous feeds would be worth trying. If it comes up again then Koti is no

worse off, but if a small amount stays down then she is ahead. I hope they

listen to you.

I KNOW how scary this is, and the memory is very fresh of seeing my little one

even more helpless than usual, and of nobody offering any solution. Hannah is

also prone to difficult behavious when confined to a bed so I was also concerned

to see her laying there without any fight in her at all. And no

smiles.........that was a killer.

Hannah does not have a nissen, because we were not offered one when her Bard

gtube was placed. I didnt even know what they were until some time later. Some

people with a little bit of knowledge have told me that she " should " have one if

she'd had the gtube placed, but I have NEVER wished she had one, and after one

bou of vomiting I am not convinced she needs one. Hannah is fortunate that she

responds well (so far) to reflux meds, as reflux did become a problem after her

gtube placement, but I dont think she needs a nissen yet, although I am prepared

to consider it if and when necessary. Sorry, not much help to you here, but just

throwing in my comments in case they help your thought processes somehow.

Pump feeds I have never done, except I do remember the nurses doing them when

Hannah was in hosp for the gtube to be placed. All that I know is that the pump

is set to deliver the feed at the rate you select, and is a good way of doing

overnight feeds. If you do bolus feeds, you have probably also done gravity

feeds and selected the rate at which the feed drips out of the bottle and into

the stomach. Pump feeds are just a mechanical means of doing that, with more

fine control of the rate. Sorry if this is stating the obvious - I'm not sure

what it is you want to know about the pump.

Please let us know how Koti is doing. We will pray for you both, and for the

doctors who are looking after her to find a cause for her illness. Take care

Love and hugs

(Hannah's mum, Australia)