NeuroTalk Support Groups - If the EEG was not enough a swallow study on Halloween of all days

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- - If the EEG was not enough a swallow study on Halloween of all days (https://www.neurotalk.org/children-s-health/1134-eeg-swallow-study-halloween-days.html)

Quote:

Originally Posted by Kamie (Post 9503)

I just have this underlying fear that they will find her refulx has not gotten any better and refer her for a g-tube or something.

She coughs and chokes on food at times and I would hate for something like that to happen and them to make this dire decision about it.

In my opinion, the LAST thing she needs is a gtube. I am going to press them for other ways to help her with textures instead of going that route.

I just can't stand the thought of Zoe on a gtube.

The swallow test will look for aspiration ( going down the wrong tube) and whether she can protect her airway. Reflux may show but again they are looking if she can protect her airway when she refluxes, not for reflux itself.
They will also check how she handles different thickness' of liquid/food. Its been many years since Alex has had a gtube but the swallow test showed he was ok with thicken fluids and solid food but not ok on thin fluids. He was about 15 months old at the time. A pH probe also showed he had severe reflux ( reflux never showed on the swallow or any UGI Xrays) They decided to do the fundo to prevent food from coming back up. They did the gtube till he could learn to swallow thin liquids safely. The 3rd thing to watch for is delayed gastric emptying...a fundo is not a good thing with delayed gastric emptying.
Joanne

As JoaD said, airway protection is one of the things they look for - which could be exactly what Zoe is doing when she coughs/chokes on food (as it is difficult to tell the difference between coughing and choking - some people go a little blue when coughing on food).

I cough on liquids a lot (food a little) when I'm due Botox (still cough on liquids sometimes even after), but my speech therapists have come to the conclusion that it's 'safe' coughing (even if it does go up my nose...) because I haven't come down with aspiration pneumonia (they did want to do two barium swallows, but the NHS said the usual 'not enough money').

At least the barium swallow/videofluouroscopy should give you some definitive answers re: texture/quantity/speed (as my g-tube is due to lack of quantity of liquid due to coughing on it).

The other thing is that if they feel any type of tube is needed, you should be able to discuss what type of tube with the doctor (in my younger children's hospital days, I knew a lot of kids with CF using NG-tubes who took them out each morning and their parents put them back in for over night).

They also might try different positions for swallowing as well as different textures - it really depends what they're looking for (as positioning can make a difference too).

Good luck,
Swift