If the EEG was not enough a swallow study on Halloween of all days
 

October = EWWWWWWW For us.

Thankfully a swallow study isn't typically so horrible and she has something fun to look forward to after it. That's the upside. I do hope she comes through it with some solid answers and help to fix the issues.

Lucinda
p.s. glad Nathaniel is doing so much better!!!!!!

I feel for you. We've got a swallow study next week as well. I am not look forward to it at all. I'm also really concerned that they'll have issues w/ him eating orally. He's been gagging and vomiting so much lately.

Take care,
Laura

can you give me any tips for what to expect for a swallow study?

Hey Kamie! I work in radiology and do swallow studies from time to time (not so much now that I'm on nights, but did quite a few all the same). I work at a regular hospital, so we didn;t see to many kids. Adults and infants mostly, but I'm sure it will be the same type of thing. You are NPO (nothing by mouth) all night to make sure they will eat the next day. W/ infants, they give them a baby bottle of barium (a thick liquid that shows up on live x-ray) and they usually gulp it down cuz they are so hungry! The dr watches it pass through to see if there is any abnormalities, reflux, etc...With older patients, a therapist will feed them different textures, pudding, barium again, a pill to see how they do with this. Still watching for abnormalities. It's a pretty quick exam, if this is what it is!! Hope this helps!

my memory is a blur on this one. I only remember he didn't want to change into the hospital gown. He drank something, he was put on a tilt table too I believe. I think he vomited but was basically fine. it was okay really.

he was about 4 I think. maybe i'll look it up later.

he has minimal reflux according to the study.

lucinda

I'm not really for sure what to expect next week, but I can let you know.

I know I'm supposed to take Andrew while he's hungry, but I won't take him starving because then I know he'll be too mad to eat. I expect him to be pretty upset anyway so I'm not for sure how he'll do. I was reassured by the PA though that the ST who does the study is very used to being puked and spit on. LOL

There will be a radioligist and a speech therapist there. And we will be trying different textures, anything they can add barium to. So I will be taking Pediasure, yogurt, applesauce, etc. I would think they have some there but I'm taking my own just in case.

I'll let you know how it goes.

Laura

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.

I don't think they'll suggest a g-tube because of gagging or coughing, unless they think that she is aspirating (and yes, I have that same fear). The coughing may be a good thing because it means she is able to clear her airway.

I was totally freaked out when Andrew got his g-tube. It's not so bad now. He got his when he was 3 1/2 due to failure to thrive. I just couldn't get the weight on him and then when he got a could he would stop eating. That was the changing point, when he lost 3 lbs in a week which he couldn't afford to lose.

(((hugs)))

Laura

As long as I'm spending the morning posting about the evils of food... Tom's eating has improved since going gluten-free. He no longer gags on food he doesn't like, and he doesn't make himself throw it up, either. We've been able to get him to eat a wider variety of foods since going gluten-free.

I keep thinking Nathaniel is (was?) on a hypoallergenic formula and Zoe has problems with dairy also? Something else for you to get rid of... er... try? I know, not the "fun" answer.

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