Re: Pneumonia, aspiration.

[Guest guest]

It's possible if he's aspriating when he's eating that it has caused the pneumonia.When he swallows (esp. liquids) do you hear him " chirp " or does he seem to gulp?

I've not had to deal with this personally.....hang in there.Joan

Joan Guthrie Medlen, MEd, RD

DownSyndromeNutrition.com

twitter: @jmedlen

 

Hi everyone. Welcome to the new people. Sorry I haven't posted lately, just trying to keep up with things @ home.

I wanted to share what we were battling with Dylan. To find out if anyone has gone through anything similar & has any advice.

Dylan will be 17 in May. DS, Autism, Type 1 diabetes, Hashimoto's, Celiac, alopecia, aspirates thin liquids, non-verbal & severe behavioral issues (violent).

He has had pneumonia since December and we can't seem to get rid of it. He's been on antibiotics almost non-stop, and just reacted to the augmenten/amoxicillin mix over the weekend. His pulmonologist wanted the infection disease doctors opinion and he said he had " one more option before they admit him for a bronchoscopy " got him on a 10 day course of xyvox I guess it's $2000+ for the ten day course.

Along the way he had another swallow study which the S & LP told me it's just " scary " how he eats. She has him on a soft diet now....thinking the pneumonia is being caused by food aspiration. She thinks if the coughing doesn't stop with the soft diet we go to pureed foods. Then, well she didn't say it but the pulmonologist threw out the idea of feeding tube, which I don't think I can go there. We already thicken to nectar consistency for liquids.

Of course he's had skin issues with being on the antibiotics - yeast abscesses. He's also been on an anti-fungal in the last month.

I know some of you have battled some crazy stuff with our kiddos - and if anyone has any thoughts or suggestions I really, really would love to hear them.

Thanks

Becky

mom to Dylan....and Tyler, 5 and foster mom to , 18.

[Guest guest]

Hi BeckyMy daughter Amy (8) aspirates off of thin liquids and thick purées. For this reason she does have a g-tube which she got at age 3. She kept having reoccuring pneumonias for years until she had the modified barium swallow test done. We tried to thicken her liquids and watch what she eats but that didn't work so we opted for the tube. Right now, she doesn't eat any solids and I have to be careful on the consistency I make her purred foods. She aspirates silently which means that she doesn't cough or show any signs that she is aspirating so I never know if it's happening. If you have any questions let me know.Ali

Hi everyone. Welcome to the new people. Sorry I haven't posted lately, just trying to keep up with things @ home.

I wanted to share what we were battling with Dylan. To find out if anyone has gone through anything similar & has any advice.

Dylan will be 17 in May. DS, Autism, Type 1 diabetes, Hashimoto's, Celiac, alopecia, aspirates thin liquids, non-verbal & severe behavioral issues (violent).

He has had pneumonia since December and we can't seem to get rid of it. He's been on antibiotics almost non-stop, and just reacted to the augmenten/amoxicillin mix over the weekend. His pulmonologist wanted the infection disease doctors opinion and he said he had "one more option before they admit him for a bronchoscopy" got him on a 10 day course of xyvox I guess it's $2000+ for the ten day course.

Along the way he had another swallow study which the S & LP told me it's just "scary" how he eats. She has him on a soft diet now....thinking the pneumonia is being caused by food aspiration. She thinks if the coughing doesn't stop with the soft diet we go to pureed foods. Then, well she didn't say it but the pulmonologist threw out the idea of feeding tube, which I don't think I can go there. We already thicken to nectar consistency for liquids.

Of course he's had skin issues with being on the antibiotics - yeast abscesses. He's also been on an anti-fungal in the last month.

I know some of you have battled some crazy stuff with our kiddos - and if anyone has any thoughts or suggestions I really, really would love to hear them.

Thanks

Becky

mom to Dylan....and Tyler, 5 and foster mom to , 18.

[Guest guest]

i agree here, it too sounds like aspiration pnuemonia to me. I would be ok with a bronchoscope, as he may have a piece of food item down there, that keeps the infection going and they can get it during that procedure. But if he is a good eater, i too would refuse the feeding tube, seems a little drastic and could cause further and different problems, on top of the ones currently dealing with. one step at a time, and remember to try for second opinions if posible. Hugs! shawna.

http://sewshawna.blogspot.com

To: Sent: Wednesday, March 28, 2012 6:59 PMSubject: Re: Pneumonia, aspiration.

It's possible if he's aspriating when he's eating that it has caused the pneumonia.

When he swallows (esp. liquids) do you hear him "chirp" or does he seem to gulp?

I've not had to deal with this personally.....hang in there.Joan

Joan Guthrie Medlen, MEd, RDDownSyndromeNutrition.comtwitter: @jmedlen

Hi everyone. Welcome to the new people. Sorry I haven't posted lately, just trying to keep up with things @ home.I wanted to share what we were battling with Dylan. To find out if anyone has gone through anything similar & has any advice.Dylan will be 17 in May. DS, Autism, Type 1 diabetes, Hashimoto's, Celiac, alopecia, aspirates thin liquids, non-verbal & severe behavioral issues (violent).He has had pneumonia since December and we can't seem to get rid of it. He's been on antibiotics almost non-stop, and just reacted to the augmenten/amoxicillin mix over the weekend. His pulmonologist wanted the infection disease doctors opinion and he said he had "one more option before they admit him for a bronchoscopy" got him on a 10 day course of xyvox I guess it's $2000+ for the ten day course. Along the way he had another swallow study which the S & LP told me it's just "scary" how he eats. She has him on a soft

diet now....thinking the pneumonia is being caused by food aspiration. She thinks if the coughing doesn't stop with the soft diet we go to pureed foods. Then, well she didn't say it but the pulmonologist threw out the idea of feeding tube, which I don't think I can go there. We already thicken to nectar consistency for liquids.Of course he's had skin issues with being on the antibiotics - yeast abscesses. He's also been on an anti-fungal in the last month.I know some of you have battled some crazy stuff with our kiddos - and if anyone has any thoughts or suggestions I really, really would love to hear them.ThanksBeckymom to Dylan....and Tyler, 5 and foster mom to , 18.

[Guest guest]

Hi Ali,

Dylan, for the most part, doesn't make any sounds when he eats. He keep trying

to encourage him to cough, because after seeing the swallow study everything is

just sitting in the back of his through. When he eats he starts shaking really

bad too, so I don't exactly know what that's all about, but it seems odd that

it's always during meal time.

The feeding tube idea has been tossed out there by one dr., but we are nor

referred to and ENT from the GI & pulmonologist for a scope to see whats going

on. They mentioned like 3-4 different things they are looking for.

Had this happened when he was three or smaller I think he'd have just grown with

the feeding tube and been used to it - but I don't know how on earth I'll live

through this if that's what it comes too. He doesn't understand any of this and

is extremely behaviorally challenging. So I'm keeping my fingers crossed for

some miracle to happen.

Becky

>

> > Hi everyone. Welcome to the new people. Sorry I haven't posted lately, just

trying to keep up with things @ home.

> >

> > I wanted to share what we were battling with Dylan. To find out if anyone

has gone through anything similar & has any advice.

> >

> > Dylan will be 17 in May. DS, Autism, Type 1 diabetes, Hashimoto's, Celiac,

alopecia, aspirates thin liquids, non-verbal & severe behavioral issues

(violent).

> >

> > He has had pneumonia since December and we can't seem to get rid of it. He's

been on antibiotics almost non-stop, and just reacted to the

augmenten/amoxicillin mix over the weekend. His pulmonologist wanted the

infection disease doctors opinion and he said he had " one more option before

they admit him for a bronchoscopy " got him on a 10 day course of xyvox I guess

it's $2000+ for the ten day course.

> >

> > Along the way he had another swallow study which the S & LP told me it's just

" scary " how he eats. She has him on a soft diet now....thinking the pneumonia is

being caused by food aspiration. She thinks if the coughing doesn't stop with

the soft diet we go to pureed foods. Then, well she didn't say it but the

pulmonologist threw out the idea of feeding tube, which I don't think I can go

there. We already thicken to nectar consistency for liquids.

> >

> > Of course he's had skin issues with being on the antibiotics - yeast

abscesses. He's also been on an anti-fungal in the last month.

> >

> > I know some of you have battled some crazy stuff with our kiddos - and if

anyone has any thoughts or suggestions I really, really would love to hear them.

> >

> > Thanks

> >

> > Becky

> > mom to Dylan....and Tyler, 5 and foster mom to , 18.

> >

> >

>