Re: Endless congestion! Suggestions?

[Guest guest]

My (left) lung fills up like that too when I am sick. You seem to be doing all

the right things. Hope you dry up soon!!! xox

L

________________________________

From: Moss <lindajmoss@...>

" " < >

Sent: Wed, September 8, 2010 3:12:36 PM

Subject: Endless congestion! Suggestions?

Thanks for tips julie, you have very good English!

My secretions seem clear now but today they have vastly increased in

quantity. Until today I would do cough assist and pt then be ok for an hour

or two. Today can spend an hour doing cough assist and postural drainage

then 10 mins later the secretions all well up again. It is obviously

exhausting so looking for wise words from people here on how to manage the

situation at home. I started augmentin last Friday and no longer have temp.

Gp thinks it is just matter of waiting for my lungs to settle down but don't

think I have conveyed to him how scary it can feel like drowning sometimes!

Hoping for top tips!

Sent from my phone

On 4 Sep 2010, at 23:50, " " <julie.marlow@...> wrote:

My daughter has had a low temperature too on a couple of occasions after

aspirating badly so that's normal and I think you are correct in taking

Augmentin in precaution considering the secretions are yellow; that's the

first antibiotic they prescribe her before resorting to anything stronger. I

don't know about adding eucalyptus to the Bipap humidifier, we don't have a

humidifier and anyway I honestly believe that eucalyptus steam inhalations

are best, it's 50% the steam and 50% the plant that does the good so maybe

you could try sitting at the table over a pan of steaming water with a towel

over your head and the pan. I've heard people turn up their Bipap settings

but we've never been advised to do it, just told to use it during the day

too, so I don't touch them.

As for the Cough Assist, here where we live, in Spain, the local NHS

authority only approves them for children, not adults, so we were given an

Ambu bag by the hospital and taught to use it with an assisted cough. We do

fine with it, though it's not so automatic, and also it's portable - unlike

the machine - so if we eat out we take it. And one thing about assisted

coughs; don't overdo them because too much coughing puts stress on the lungs

and can produce even more secretions, so don't be too zealous, just do it

regularly and as needed. And drink a lot. People with SMA often don't drink

enough.

One last thing - we consider a Ventolin inhaler of vital importance when

there's congestion! One dose every 4 hours.

Hope all goes well soon.

- .

http://elaticodejulie.spaces.live.com/

http://juliesattic.spaces.live.com/

[Guest guest]

Have you ever taken Prendisone to help your lungs heal quicker? When I have

chest gunk I take antibiotics and sometimes that, too. It's usually a 5 day

course. Can you do breathing treatments? Without Xopenex I'd never get through

sickness. ~a

Endless congestion! Suggestions?

Thanks for tips julie, you have very good English!

My secretions seem clear now but today they have vastly increased in

quantity. Until today I would do cough assist and pt then be ok for an hour

or two. Today can spend an hour doing cough assist and postural drainage

then 10 mins later the secretions all well up again. It is obviously

exhausting so looking for wise words from people here on how to manage the

situation at home. I started augmentin last Friday and no longer have temp.

Gp thinks it is just matter of waiting for my lungs to settle down but don't

think I have conveyed to him how scary it can feel like drowning sometimes!

Hoping for top tips!

Sent from my phone

On 4 Sep 2010, at 23:50, " " <julie.marlow@...> wrote:

My daughter has had a low temperature too on a couple of occasions after

aspirating badly so that's normal and I think you are correct in taking

Augmentin in precaution considering the secretions are yellow; that's the

first antibiotic they prescribe her before resorting to anything stronger. I

don't know about adding eucalyptus to the Bipap humidifier, we don't have a

humidifier and anyway I honestly believe that eucalyptus steam inhalations

are best, it's 50% the steam and 50% the plant that does the good so maybe

you could try sitting at the table over a pan of steaming water with a towel

over your head and the pan. I've heard people turn up their Bipap settings

but we've never been advised to do it, just told to use it during the day

too, so I don't touch them.

As for the Cough Assist, here where we live, in Spain, the local NHS

authority only approves them for children, not adults, so we were given an

Ambu bag by the hospital and taught to use it with an assisted cough. We do

fine with it, though it's not so automatic, and also it's portable - unlike

the machine - so if we eat out we take it. And one thing about assisted

coughs; don't overdo them because too much coughing puts stress on the lungs

and can produce even more secretions, so don't be too zealous, just do it

regularly and as needed. And drink a lot. People with SMA often don't drink

enough.

One last thing - we consider a Ventolin inhaler of vital importance when

there's congestion! One dose every 4 hours.

Hope all goes well soon.

- .

http://elaticodejulie.spaces.live.com/

http://juliesattic.spaces.live.com/

[Guest guest]

, my English is good because I was born and educated in the UK but have

been living here in Spain for so many years now and being bilingual it's

deteriorated and sometimes weird things come out!

Sorry to hear you still have trouble with secretions, but considering that I

think you've been through a small infection that's quite usual. In July my

daughter had a really bad virus and the secretions lasted a long time, almost a

month. It's a good sign you no longer have a temperature and I agree with your

GP in that it's a question of time and the PT routine you are already following.

We've found that when , my daughter, has a sea of mucous she can't sit up

because the gravity makes it slip down and cover her airways and she can't

control it even with the Bipap, which helps a lot. So she lies down, often with

the Bipap - a bummer, obviously because she spends half the day there - and it

tends to calm down more so she can sit up again for a while. Also, people with

SMA breathe better lying down. Here's what Dr. Schroth says:

" SMA results in very weak intercostal muscles and a

relatively stronger diaphragm. When positioned upright,

the functional residual capacity, or the volume at the

end of normal expiration,is increased. The functional

residual capacity in SMA is smallest when in the Tren-

delenburg position. Thus, for SMA types 1 and 2, posi-

tioning flat or in the Trendelenburg position during re-

spiratory compromise will benefit diaphragm function.

In the upright position, the individual who is diaphragm

dependent for breathing is at a mechanical disadvantage. "

I can understand how frustrated you feel. Has this not happened before when you

catch a cold? I think, when you can, you have to look into the reflux question

in case you are still refluxing.

Do you get someone to press down on your diaphragm when you use the CoughAssist

to cough harder?

Also, if you could hitch up something like our home invention for steam vapours,

the steam would enter your lungs much more directly - picture here:

http://cid-ea45327a6d5728ce.photos.live.com/self.aspx/APARATOS/invento^_vahos.JP\

G

And if you really think this is going on too long and if you think the

secretions are increasing, is your GP sure the dosage of Augmentin is correct

and shouldn't be stronger?

My daughter is only small, about 33 kilos, and they give her Augmentin 875/125

when it's a bad cold.

-

http://elaticodejulie.spaces.live.com/

http://juliesattic.spaces.live.com/

>

>

>

> My daughter has had a low temperature too on a couple of occasions after

> aspirating badly so that's normal and I think you are correct in taking

> Augmentin in precaution considering the secretions are yellow; that's the

> first antibiotic they prescribe her before resorting to anything stronger. I

> don't know about adding eucalyptus to the Bipap humidifier, we don't have a

> humidifier and anyway I honestly believe that eucalyptus steam inhalations

> are best, it's 50% the steam and 50% the plant that does the good so maybe

> you could try sitting at the table over a pan of steaming water with a towel

> over your head and the pan. I've heard people turn up their Bipap settings

> but we've never been advised to do it, just told to use it during the day

> too, so I don't touch them.

>

> As for the Cough Assist, here where we live, in Spain, the local NHS

> authority only approves them for children, not adults, so we were given an

> Ambu bag by the hospital and taught to use it with an assisted cough. We do

> fine with it, though it's not so automatic, and also it's portable - unlike

> the machine - so if we eat out we take it. And one thing about assisted

> coughs; don't overdo them because too much coughing puts stress on the lungs

> and can produce even more secretions, so don't be too zealous, just do it

> regularly and as needed. And drink a lot. People with SMA often don't drink

> enough.

>

> One last thing - we consider a Ventolin inhaler of vital importance when

> there's congestion! One dose every 4 hours.

>

> Hope all goes well soon.

>

> - .

> http://elaticodejulie.spaces.live.com/

> http://juliesattic.spaces.live.com/

>

>

>

>

>

[Guest guest]

Thanks lori, and kristina for tips. Will ask gp about meds mentioned

tomorrow.

Still no let up in the oceans of secretions. A big problem it is causing is

affecting my eating. Most times when I get up to eat within 5 mins

secretions block my airway (maybe like you describe ) so I have to

quickie get in bed, lie on side and use cough assist to clear airway.

Luckily once a day I am able to sit up long enough to eat one meal. Hard to

keep up energy on one meal but I don't seem to find a technique to be able

to eat in bed. Anyone else had this problem and found a solution?

Sent from my phone

On 9 Sep 2010, at 19:23, " " <julie.marlow@...> wrote:

, my English is good because I was born and educated in the UK but have

been living here in Spain for so many years now and being bilingual it's

deteriorated and sometimes weird things come out!

Sorry to hear you still have trouble with secretions, but considering that I

think you've been through a small infection that's quite usual. In July my

daughter had a really bad virus and the secretions lasted a long time,

almost a month. It's a good sign you no longer have a temperature and I

agree with your GP in that it's a question of time and the PT routine you

are already following. We've found that when , my daughter, has a sea

of mucous she can't sit up because the gravity makes it slip down and cover

her airways and she can't control it even with the Bipap, which helps a lot.

So she lies down, often with the Bipap - a bummer, obviously because she

spends half the day there - and it tends to calm down more so she can sit up

again for a while. Also, people with SMA breathe better lying down. Here's

what Dr. Schroth says:

" SMA results in very weak intercostal muscles and a

relatively stronger diaphragm. When positioned upright,

the functional residual capacity, or the volume at the

end of normal expiration,is increased. The functional

residual capacity in SMA is smallest when in the Tren-

delenburg position. Thus, for SMA types 1 and 2, posi-

tioning flat or in the Trendelenburg position during re-

spiratory compromise will benefit diaphragm function.

In the upright position, the individual who is diaphragm

dependent for breathing is at a mechanical disadvantage. "

I can understand how frustrated you feel. Has this not happened before when

you catch a cold? I think, when you can, you have to look into the reflux

question in case you are still refluxing.

Do you get someone to press down on your diaphragm when you use the

CoughAssist to cough harder?

Also, if you could hitch up something like our home invention for steam

vapours, the steam would enter your lungs much more directly - picture here:

http://cid-ea45327a6d5728ce.photos.live.com/self.aspx/APARATOS/invento

^_vahos.JPG

And if you really think this is going on too long and if you think the

secretions are increasing, is your GP sure the dosage of Augmentin is

correct and shouldn't be stronger?

My daughter is only small, about 33 kilos, and they give her Augmentin

875/125 when it's a bad cold.

-

http://elaticodejulie.spaces.live.com/

http://juliesattic.spaces.live.com/

>

>

>

> My daughter has had a low temperature too on a couple of occasions after

> aspirating badly so that's normal and I think you are correct in taking

> Augmentin in precaution considering the secretions are yellow; that's the

> first antibiotic they prescribe her before resorting to anything stronger.

I

> don't know about adding eucalyptus to the Bipap humidifier, we don't have

a

> humidifier and anyway I honestly believe that eucalyptus steam inhalations

> are best, it's 50% the steam and 50% the plant that does the good so maybe

> you could try sitting at the table over a pan of steaming water with a

towel

> over your head and the pan. I've heard people turn up their Bipap settings

> but we've never been advised to do it, just told to use it during the day

> too, so I don't touch them.

>

> As for the Cough Assist, here where we live, in Spain, the local NHS

> authority only approves them for children, not adults, so we were given an

> Ambu bag by the hospital and taught to use it with an assisted cough. We

do

> fine with it, though it's not so automatic, and also it's portable -

unlike

> the machine - so if we eat out we take it. And one thing about assisted

> coughs; don't overdo them because too much coughing puts stress on the

lungs

> and can produce even more secretions, so don't be too zealous, just do it

> regularly and as needed. And drink a lot. People with SMA often don't

drink

> enough.

>

> One last thing - we consider a Ventolin inhaler of vital importance when

> there's congestion! One dose every 4 hours.

>

> Hope all goes well soon.

>

> - .

> http://elaticodejulie.spaces.live.com/

> http://juliesattic.spaces.live.com/

>

>

>

>

>

[Guest guest]

,

Xopenex is like Albuterol and does not affect the HR.

Take Care,

Kimi

Need birthday cards and more?

Visit my Etsy site: _www.craftykfox.etsy.com_

(http://www.craftykfox.etsy.com)

In a message dated 9/9/2010 7:33:56 P.M. Eastern Daylight Time,

lindajmoss@... writes:

Don't think so Alana as it would have to be quite deep suction to reach :-(

I think I might risk a broncho dilator as mentioned by a couple of you

even

though not ideal with heart rate at 120 as mine is now.

Thanks

Sent from my phone

On 9 Sep 2010, at 23:05, althegrrl <alanarutht@...> wrote:

,

Would a suction machine be helpful when you're eating?

Al

> >

> >

> >

> > My daughter has had a low temperature too on a couple of occasions

after

> > aspirating badly so that's normal and I think you are correct in taking

> > Augmentin in precaution considering the secretions are yellow; that's

the

> > first antibiotic they prescribe her before resorting to anything

stronger.

> I

> > don't know about adding eucalyptus to the Bipap humidifier, we don't

have

> a

> > humidifier and anyway I honestly believe that eucalyptus steam

inhalations

> > are best, it's 50% the steam and 50% the plant that does the good so

maybe

> > you could try sitting at the table over a pan of steaming water with a

> towel

> > over your head and the pan. I've heard people turn up their Bipap

settings

> > but we've never been advised to do it, just told to use it during the

day

> > too, so I don't touch them.

> >

> > As for the Cough Assist, here where we live, in Spain, the local NHS

> > authority only approves them for children, not adults, so we were

given

an

> > Ambu bag by the hospital and taught to use it with an assisted cough.

We

> do

> > fine with it, though it's not so automatic, and also it's portable -

> unlike

> > the machine - so if we eat out we take it. And one thing about assisted

> > coughs; don't overdo them because too much coughing puts stress on the

> lungs

> > and can produce even more secretions, so don't be too zealous, just do

it

> > regularly and as needed. And drink a lot. People with SMA often don't

> drink

> > enough.

> >

> > One last thing - we consider a Ventolin inhaler of vital importance

when

> > there's congestion! One dose every 4 hours.

> >

> > Hope all goes well soon.

> >

> > - .

> > http://elaticodejulie.spaces.live.com/

> > http://juliesattic.spaces.live.com/

> >

> >

> >

> >

> > [Non-text portions of this message have been removed]

> >

>

>

>

>

> [Non-text portions of this message have been removed]

>

[Non-text portions of this message have been removed]

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[Guest guest]

,

Would a suction machine be helpful when you're eating?

Al

> >

> >

> >

> > My daughter has had a low temperature too on a couple of occasions after

> > aspirating badly so that's normal and I think you are correct in taking

> > Augmentin in precaution considering the secretions are yellow; that's the

> > first antibiotic they prescribe her before resorting to anything stronger.

> I

> > don't know about adding eucalyptus to the Bipap humidifier, we don't have

> a

> > humidifier and anyway I honestly believe that eucalyptus steam inhalations

> > are best, it's 50% the steam and 50% the plant that does the good so maybe

> > you could try sitting at the table over a pan of steaming water with a

> towel

> > over your head and the pan. I've heard people turn up their Bipap settings

> > but we've never been advised to do it, just told to use it during the day

> > too, so I don't touch them.

> >

> > As for the Cough Assist, here where we live, in Spain, the local NHS

> > authority only approves them for children, not adults, so we were given an

> > Ambu bag by the hospital and taught to use it with an assisted cough. We

> do

> > fine with it, though it's not so automatic, and also it's portable -

> unlike

> > the machine - so if we eat out we take it. And one thing about assisted

> > coughs; don't overdo them because too much coughing puts stress on the

> lungs

> > and can produce even more secretions, so don't be too zealous, just do it

> > regularly and as needed. And drink a lot. People with SMA often don't

> drink

> > enough.

> >

> > One last thing - we consider a Ventolin inhaler of vital importance when

> > there's congestion! One dose every 4 hours.

> >

> > Hope all goes well soon.

> >

> > - .

> > http://elaticodejulie.spaces.live.com/

> > http://juliesattic.spaces.live.com/

> >

> >

> >

> >

> >

[Guest guest]

Don't think so Alana as it would have to be quite deep suction to reach :-(

I think I might risk a broncho dilator as mentioned by a couple of you even

though not ideal with heart rate at 120 as mine is now.

Thanks

Sent from my phone

On 9 Sep 2010, at 23:05, althegrrl <alanarutht@...> wrote:

,

Would a suction machine be helpful when you're eating?

Al

> >

> >

> >

> > My daughter has had a low temperature too on a couple of occasions after

> > aspirating badly so that's normal and I think you are correct in taking

> > Augmentin in precaution considering the secretions are yellow; that's

the

> > first antibiotic they prescribe her before resorting to anything

stronger.

> I

> > don't know about adding eucalyptus to the Bipap humidifier, we don't

have

> a

> > humidifier and anyway I honestly believe that eucalyptus steam

inhalations

> > are best, it's 50% the steam and 50% the plant that does the good so

maybe

> > you could try sitting at the table over a pan of steaming water with a

> towel

> > over your head and the pan. I've heard people turn up their Bipap

settings

> > but we've never been advised to do it, just told to use it during the

day

> > too, so I don't touch them.

> >

> > As for the Cough Assist, here where we live, in Spain, the local NHS

> > authority only approves them for children, not adults, so we were given

an

> > Ambu bag by the hospital and taught to use it with an assisted cough. We

> do

> > fine with it, though it's not so automatic, and also it's portable -

> unlike

> > the machine - so if we eat out we take it. And one thing about assisted

> > coughs; don't overdo them because too much coughing puts stress on the

> lungs

> > and can produce even more secretions, so don't be too zealous, just do

it

> > regularly and as needed. And drink a lot. People with SMA often don't

> drink

> > enough.

> >

> > One last thing - we consider a Ventolin inhaler of vital importance when

> > there's congestion! One dose every 4 hours.

> >

> > Hope all goes well soon.

> >

> > - .

> > http://elaticodejulie.spaces.live.com/

> > http://juliesattic.spaces.live.com/

> >

> >

> >

> >

> >

[Guest guest]

Thanks kimi. Unfortunately it seems we don't have xopenex in England will

look into albuterol.

Sent from my phone

On 10 Sep 2010, at 01:00, " Ksmile96@... " <Ksmile96@...> wrote:

,

Xopenex is like Albuterol and does not affect the HR.

Take Care,

Kimi

Need birthday cards and more?

Visit my Etsy site: _www.craftykfox.etsy.com_

(http://www.craftykfox.etsy.com)

In a message dated 9/9/2010 7:33:56 P.M. Eastern Daylight Time,

lindajmoss@... <lindajmoss%40gmail.com> writes:

Don't think so Alana as it would have to be quite deep suction to reach :-(

I think I might risk a broncho dilator as mentioned by a couple of you

even

though not ideal with heart rate at 120 as mine is now.

Thanks

Sent from my phone

On 9 Sep 2010, at 23:05, althegrrl

<alanarutht@...<alanarutht%40gmail.com>>

wrote:

,

Would a suction machine be helpful when you're eating?

Al

> >

> >

> >

> > My daughter has had a low temperature too on a couple of occasions

after

> > aspirating badly so that's normal and I think you are correct in taking

> > Augmentin in precaution considering the secretions are yellow; that's

the

> > first antibiotic they prescribe her before resorting to anything

stronger.

> I

> > don't know about adding eucalyptus to the Bipap humidifier, we don't

have

> a

> > humidifier and anyway I honestly believe that eucalyptus steam

inhalations

> > are best, it's 50% the steam and 50% the plant that does the good so

maybe

> > you could try sitting at the table over a pan of steaming water with a

> towel

> > over your head and the pan. I've heard people turn up their Bipap

settings

> > but we've never been advised to do it, just told to use it during the

day

> > too, so I don't touch them.

> >

> > As for the Cough Assist, here where we live, in Spain, the local NHS

> > authority only approves them for children, not adults, so we were

given

an

> > Ambu bag by the hospital and taught to use it with an assisted cough.

We

> do

> > fine with it, though it's not so automatic, and also it's portable -

> unlike

> > the machine - so if we eat out we take it. And one thing about assisted

> > coughs; don't overdo them because too much coughing puts stress on the

> lungs

> > and can produce even more secretions, so don't be too zealous, just do

it

> > regularly and as needed. And drink a lot. People with SMA often don't

> drink

> > enough.

> >

> > One last thing - we consider a Ventolin inhaler of vital importance

when

> > there's congestion! One dose every 4 hours.

> >

> > Hope all goes well soon.

> >

> > - .

> > http://elaticodejulie.spaces.live.com/

> > http://juliesattic.spaces.live.com/

> >

> >

> >

> >

> >

[Guest guest]

I have secretions like that after pneumonia, it usually takes about

two or so weeks for it to go away. After the infection is gone I do

everything I can to thin the secretions out and moving around until my

lungs catch on that they can stop the fountains of mucus. For me it's

usually breathing treatments every to hours, followed by chest pt in

postural drainage. Sometimes I'll just hang out in postural drainage if

it's really bad. I also increase fluids too. Since albuterol bothers

you, you can try doing a treatment with just Saline. It might help to

thin everything out.

For eating, when I'm that sick I have to eat/be fed laying down. Like

you, I just get junkie if I eat sitting up but laying down, not a

problem. . . . go figure!

Hope you feel better!

& Ivy- service dog extraordinaire

www.k94life.org

On 9/9/2010 3:44 PM, Moss wrote:

> Thanks lori, and kristina for tips. Will ask gp about meds mentioned

> tomorrow.

> Still no let up in the oceans of secretions. A big problem it is causing is

> affecting my eating. Most times when I get up to eat within 5 mins

> secretions block my airway (maybe like you describe ) so I have to

> quickie get in bed, lie on side and use cough assist to clear airway.

> Luckily once a day I am able to sit up long enough to eat one meal. Hard to

> keep up energy on one meal but I don't seem to find a technique to be able

> to eat in bed. Anyone else had this problem and found a solution?

>

>

> Sent from my phone

>

>

> On 9 Sep 2010, at 19:23, " " <julie.marlow@...> wrote:

>

>

>

> , my English is good because I was born and educated in the UK but have

> been living here in Spain for so many years now and being bilingual it's

> deteriorated and sometimes weird things come out!

>

> Sorry to hear you still have trouble with secretions, but considering that I

> think you've been through a small infection that's quite usual. In July my

> daughter had a really bad virus and the secretions lasted a long time,

> almost a month. It's a good sign you no longer have a temperature and I

> agree with your GP in that it's a question of time and the PT routine you

> are already following. We've found that when , my daughter, has a sea

> of mucous she can't sit up because the gravity makes it slip down and cover

> her airways and she can't control it even with the Bipap, which helps a lot.

> So she lies down, often with the Bipap - a bummer, obviously because she

> spends half the day there - and it tends to calm down more so she can sit up

> again for a while. Also, people with SMA breathe better lying down. Here's

> what Dr. Schroth says:

>

> " SMA results in very weak intercostal muscles and a

> relatively stronger diaphragm. When positioned upright,

> the functional residual capacity, or the volume at the

> end of normal expiration,is increased. The functional

> residual capacity in SMA is smallest when in the Tren-

> delenburg position. Thus, for SMA types 1 and 2, posi-

> tioning flat or in the Trendelenburg position during re-

> spiratory compromise will benefit diaphragm function.

> In the upright position, the individual who is diaphragm

> dependent for breathing is at a mechanical disadvantage. "

>

> I can understand how frustrated you feel. Has this not happened before when

> you catch a cold? I think, when you can, you have to look into the reflux

> question in case you are still refluxing.

>

> Do you get someone to press down on your diaphragm when you use the

> CoughAssist to cough harder?

>

> Also, if you could hitch up something like our home invention for steam

> vapours, the steam would enter your lungs much more directly - picture here:

>

> http://cid-ea45327a6d5728ce.photos.live.com/self.aspx/APARATOS/invento

> ^_vahos.JPG

>

> And if you really think this is going on too long and if you think the

> secretions are increasing, is your GP sure the dosage of Augmentin is

> correct and shouldn't be stronger?

> My daughter is only small, about 33 kilos, and they give her Augmentin

> 875/125 when it's a bad cold.

>

> -

> http://elaticodejulie.spaces.live.com/

> http://juliesattic.spaces.live.com/

>

>

>>

>>

>>

>> My daughter has had a low temperature too on a couple of occasions after

>> aspirating badly so that's normal and I think you are correct in taking

>> Augmentin in precaution considering the secretions are yellow; that's the

>> first antibiotic they prescribe her before resorting to anything stronger.

> I

>> don't know about adding eucalyptus to the Bipap humidifier, we don't have

> a

>> humidifier and anyway I honestly believe that eucalyptus steam inhalations

>> are best, it's 50% the steam and 50% the plant that does the good so maybe

>> you could try sitting at the table over a pan of steaming water with a

> towel

>> over your head and the pan. I've heard people turn up their Bipap settings

>> but we've never been advised to do it, just told to use it during the day

>> too, so I don't touch them.

>>

>> As for the Cough Assist, here where we live, in Spain, the local NHS

>> authority only approves them for children, not adults, so we were given an

>> Ambu bag by the hospital and taught to use it with an assisted cough. We

> do

>> fine with it, though it's not so automatic, and also it's portable -

> unlike

>> the machine - so if we eat out we take it. And one thing about assisted

>> coughs; don't overdo them because too much coughing puts stress on the

> lungs

>> and can produce even more secretions, so don't be too zealous, just do it

>> regularly and as needed. And drink a lot. People with SMA often don't

> drink

>> enough.

>>

>> One last thing - we consider a Ventolin inhaler of vital importance when

>> there's congestion! One dose every 4 hours.

>>

>> Hope all goes well soon.

>>

>> - .

>> http://elaticodejulie.spaces.live.com/

>> http://juliesattic.spaces.live.com/

>>

>>

>>

>>

>>

[Guest guest]

Are you able to drink out of a straw while lying down? Perhaps some high-calorie

drinks like Ensure or Boost or chicken broth? ~a

Re: Re: Endless congestion! Suggestions?

Thanks lori, and kristina for tips. Will ask gp about meds mentioned

tomorrow.

Still no let up in the oceans of secretions. A big problem it is causing is

affecting my eating. Most times when I get up to eat within 5 mins

secretions block my airway (maybe like you describe ) so I have to

quickie get in bed, lie on side and use cough assist to clear airway.

Luckily once a day I am able to sit up long enough to eat one meal. Hard to

keep up energy on one meal but I don't seem to find a technique to be able

to eat in bed. Anyone else had this problem and found a solution?

Sent from my phone

On 9 Sep 2010, at 19:23, " " <julie.marlow@...> wrote:

, my English is good because I was born and educated in the UK but have

been living here in Spain for so many years now and being bilingual it's

deteriorated and sometimes weird things come out!

Sorry to hear you still have trouble with secretions, but considering that I

think you've been through a small infection that's quite usual. In July my

daughter had a really bad virus and the secretions lasted a long time,

almost a month. It's a good sign you no longer have a temperature and I

agree with your GP in that it's a question of time and the PT routine you

are already following. We've found that when , my daughter, has a sea

of mucous she can't sit up because the gravity makes it slip down and cover

her airways and she can't control it even with the Bipap, which helps a lot.

So she lies down, often with the Bipap - a bummer, obviously because she

spends half the day there - and it tends to calm down more so she can sit up

again for a while. Also, people with SMA breathe better lying down. Here's

what Dr. Schroth says:

" SMA results in very weak intercostal muscles and a

relatively stronger diaphragm. When positioned upright,

the functional residual capacity, or the volume at the

end of normal expiration,is increased. The functional

residual capacity in SMA is smallest when in the Tren-

delenburg position. Thus, for SMA types 1 and 2, posi-

tioning flat or in the Trendelenburg position during re-

spiratory compromise will benefit diaphragm function.

In the upright position, the individual who is diaphragm

dependent for breathing is at a mechanical disadvantage. "

I can understand how frustrated you feel. Has this not happened before when

you catch a cold? I think, when you can, you have to look into the reflux

question in case you are still refluxing.

Do you get someone to press down on your diaphragm when you use the

CoughAssist to cough harder?

Also, if you could hitch up something like our home invention for steam

vapours, the steam would enter your lungs much more directly - picture here:

http://cid-ea45327a6d5728ce.photos.live.com/self.aspx/APARATOS/invento

^_vahos.JPG

And if you really think this is going on too long and if you think the

secretions are increasing, is your GP sure the dosage of Augmentin is

correct and shouldn't be stronger?

My daughter is only small, about 33 kilos, and they give her Augmentin

875/125 when it's a bad cold.

-

http://elaticodejulie.spaces.live.com/

http://juliesattic.spaces.live.com/

>

>

>

> My daughter has had a low temperature too on a couple of occasions after

> aspirating badly so that's normal and I think you are correct in taking

> Augmentin in precaution considering the secretions are yellow; that's the

> first antibiotic they prescribe her before resorting to anything stronger.

I

> don't know about adding eucalyptus to the Bipap humidifier, we don't have

a

> humidifier and anyway I honestly believe that eucalyptus steam inhalations

> are best, it's 50% the steam and 50% the plant that does the good so maybe

> you could try sitting at the table over a pan of steaming water with a

towel

> over your head and the pan. I've heard people turn up their Bipap settings

> but we've never been advised to do it, just told to use it during the day

> too, so I don't touch them.

>

> As for the Cough Assist, here where we live, in Spain, the local NHS

> authority only approves them for children, not adults, so we were given an

> Ambu bag by the hospital and taught to use it with an assisted cough. We

do

> fine with it, though it's not so automatic, and also it's portable -

unlike

> the machine - so if we eat out we take it. And one thing about assisted

> coughs; don't overdo them because too much coughing puts stress on the

lungs

> and can produce even more secretions, so don't be too zealous, just do it

> regularly and as needed. And drink a lot. People with SMA often don't

drink

> enough.

>

> One last thing - we consider a Ventolin inhaler of vital importance when

> there's congestion! One dose every 4 hours.

>

> Hope all goes well soon.

>

> - .

> http://elaticodejulie.spaces.live.com/

> http://juliesattic.spaces.live.com/

>

>

>

>

>

[Guest guest]

Thanks for this . How often do you do pt when like this? I am trying

to figure out a good way to drain as my bed doesn't tip me head down and too

hard for my PAs to get me lying on a wedge cushion. So got board under

mattress to try and use the leg raising function to get me tipped. Is there

a specific degree of tip? Maybe I'm not tipping enough.

Sent from my phone

On 10 Sep 2010, at 01:51, Lorey <milkynet@...> wrote:

I have secretions like that after pneumonia, it usually takes about

two or so weeks for it to go away. After the infection is gone I do

everything I can to thin the secretions out and moving around until my

lungs catch on that they can stop the fountains of mucus. For me it's

usually breathing treatments every to hours, followed by chest pt in

postural drainage. Sometimes I'll just hang out in postural drainage if

it's really bad. I also increase fluids too. Since albuterol bothers

you, you can try doing a treatment with just Saline. It might help to

thin everything out.

For eating, when I'm that sick I have to eat/be fed laying down. Like

you, I just get junkie if I eat sitting up but laying down, not a

problem. . . . go figure!

Hope you feel better!

& Ivy- service dog extraordinaire

www.k94life.org

On 9/9/2010 3:44 PM, Moss wrote:

> Thanks lori, and kristina for tips. Will ask gp about meds mentioned

> tomorrow.

> Still no let up in the oceans of secretions. A big problem it is causing

is

> affecting my eating. Most times when I get up to eat within 5 mins

> secretions block my airway (maybe like you describe ) so I have to

> quickie get in bed, lie on side and use cough assist to clear airway.

> Luckily once a day I am able to sit up long enough to eat one meal. Hard

to

> keep up energy on one meal but I don't seem to find a technique to be able

> to eat in bed. Anyone else had this problem and found a solution?

>

>

> Sent from my phone

>

>

> On 9 Sep 2010, at 19:23,

" " <julie.marlow@...<julie.marlow%40ymail.com>>

wrote:

>

>

>

> , my English is good because I was born and educated in the UK but

have

> been living here in Spain for so many years now and being bilingual it's

> deteriorated and sometimes weird things come out!

>

> Sorry to hear you still have trouble with secretions, but considering that

I

> think you've been through a small infection that's quite usual. In July my

> daughter had a really bad virus and the secretions lasted a long time,

> almost a month. It's a good sign you no longer have a temperature and I

> agree with your GP in that it's a question of time and the PT routine you

> are already following. We've found that when , my daughter, has a sea

> of mucous she can't sit up because the gravity makes it slip down and

cover

> her airways and she can't control it even with the Bipap, which helps a

lot.

> So she lies down, often with the Bipap - a bummer, obviously because she

> spends half the day there - and it tends to calm down more so she can sit

up

> again for a while. Also, people with SMA breathe better lying down. Here's

> what Dr. Schroth says:

>

> " SMA results in very weak intercostal muscles and a

> relatively stronger diaphragm. When positioned upright,

> the functional residual capacity, or the volume at the

> end of normal expiration,is increased. The functional

> residual capacity in SMA is smallest when in the Tren-

> delenburg position. Thus, for SMA types 1 and 2, posi-

> tioning flat or in the Trendelenburg position during re-

> spiratory compromise will benefit diaphragm function.

> In the upright position, the individual who is diaphragm

> dependent for breathing is at a mechanical disadvantage. "

>

> I can understand how frustrated you feel. Has this not happened before

when

> you catch a cold? I think, when you can, you have to look into the reflux

> question in case you are still refluxing.

>

> Do you get someone to press down on your diaphragm when you use the

> CoughAssist to cough harder?

>

> Also, if you could hitch up something like our home invention for steam

> vapours, the steam would enter your lungs much more directly - picture

here:

>

> http://cid-ea45327a6d5728ce.photos.live.com/self.aspx/APARATOS/invento

> ^_vahos.JPG

>

> And if you really think this is going on too long and if you think the

> secretions are increasing, is your GP sure the dosage of Augmentin is

> correct and shouldn't be stronger?

> My daughter is only small, about 33 kilos, and they give her Augmentin

> 875/125 when it's a bad cold.

>

> -

> http://elaticodejulie.spaces.live.com/

> http://juliesattic.spaces.live.com/

>

>

>>

>>

>>

>> My daughter has had a low temperature too on a couple of occasions after

>> aspirating badly so that's normal and I think you are correct in taking

>> Augmentin in precaution considering the secretions are yellow; that's the

>> first antibiotic they prescribe her before resorting to anything

stronger.

> I

>> don't know about adding eucalyptus to the Bipap humidifier, we don't have

> a

>> humidifier and anyway I honestly believe that eucalyptus steam

inhalations

>> are best, it's 50% the steam and 50% the plant that does the good so

maybe

>> you could try sitting at the table over a pan of steaming water with a

> towel

>> over your head and the pan. I've heard people turn up their Bipap

settings

>> but we've never been advised to do it, just told to use it during the day

>> too, so I don't touch them.

>>

>> As for the Cough Assist, here where we live, in Spain, the local NHS

>> authority only approves them for children, not adults, so we were given

an

>> Ambu bag by the hospital and taught to use it with an assisted cough. We

> do

>> fine with it, though it's not so automatic, and also it's portable -

> unlike

>> the machine - so if we eat out we take it. And one thing about assisted

>> coughs; don't overdo them because too much coughing puts stress on the

> lungs

>> and can produce even more secretions, so don't be too zealous, just do it

>> regularly and as needed. And drink a lot. People with SMA often don't

> drink

>> enough.

>>

>> One last thing - we consider a Ventolin inhaler of vital importance when

>> there's congestion! One dose every 4 hours.

>>

>> Hope all goes well soon.

>>

>> - .

>> http://elaticodejulie.spaces.live.com/

>> http://juliesattic.spaces.live.com/

>>

>>

>>

>>

>>

[Guest guest]

Yes can manage with straw if I take it slow and the liquid is very smooth,

no bits. Will ask gp about boost etc. One thing I am struggling with is

getting a technique to drink/eat when got bipap on, which is most of the

time at moment unless I am using cough assist. I normally just use it for

sleeping with, using nasal pillows. So looking for tips on how to not let

air be pushes in me whilst swallowing. I guess I really need to change

settings so only I trigger breath but that is easier said than do at mo!

Thanks!

Sent from my phone

On 10 Sep 2010, at 05:36, " a B. " <kristina45231@...> wrote:

Are you able to drink out of a straw while lying down? Perhaps some

high-calorie

drinks like Ensure or Boost or chicken broth? ~a

Re: Re: Endless congestion! Suggestions?

Thanks lori, and kristina for tips. Will ask gp about meds mentioned

tomorrow.

Still no let up in the oceans of secretions. A big problem it is causing is

affecting my eating. Most times when I get up to eat within 5 mins

secretions block my airway (maybe like you describe ) so I have to

quickie get in bed, lie on side and use cough assist to clear airway.

Luckily once a day I am able to sit up long enough to eat one meal. Hard to

keep up energy on one meal but I don't seem to find a technique to be able

to eat in bed. Anyone else had this problem and found a solution?

Sent from my phone

On 9 Sep 2010, at 19:23, " "

<julie.marlow@...<julie.marlow%40ymail.com>>

wrote:

, my English is good because I was born and educated in the UK but have

been living here in Spain for so many years now and being bilingual it's

deteriorated and sometimes weird things come out!

Sorry to hear you still have trouble with secretions, but considering that I

think you've been through a small infection that's quite usual. In July my

daughter had a really bad virus and the secretions lasted a long time,

almost a month. It's a good sign you no longer have a temperature and I

agree with your GP in that it's a question of time and the PT routine you

are already following. We've found that when , my daughter, has a sea

of mucous she can't sit up because the gravity makes it slip down and cover

her airways and she can't control it even with the Bipap, which helps a lot.

So she lies down, often with the Bipap - a bummer, obviously because she

spends half the day there - and it tends to calm down more so she can sit up

again for a while. Also, people with SMA breathe better lying down. Here's

what Dr. Schroth says:

" SMA results in very weak intercostal muscles and a

relatively stronger diaphragm. When positioned upright,

the functional residual capacity, or the volume at the

end of normal expiration,is increased. The functional

residual capacity in SMA is smallest when in the Tren-

delenburg position. Thus, for SMA types 1 and 2, posi-

tioning flat or in the Trendelenburg position during re-

spiratory compromise will benefit diaphragm function.

In the upright position, the individual who is diaphragm

dependent for breathing is at a mechanical disadvantage. "

I can understand how frustrated you feel. Has this not happened before when

you catch a cold? I think, when you can, you have to look into the reflux

question in case you are still refluxing.

Do you get someone to press down on your diaphragm when you use the

CoughAssist to cough harder?

Also, if you could hitch up something like our home invention for steam

vapours, the steam would enter your lungs much more directly - picture here:

http://cid-ea45327a6d5728ce.photos.live.com/self.aspx/APARATOS/invento

^_vahos.JPG

And if you really think this is going on too long and if you think the

secretions are increasing, is your GP sure the dosage of Augmentin is

correct and shouldn't be stronger?

My daughter is only small, about 33 kilos, and they give her Augmentin

875/125 when it's a bad cold.

-

http://elaticodejulie.spaces.live.com/

http://juliesattic.spaces.live.com/

>

>

>

> My daughter has had a low temperature too on a couple of occasions after

> aspirating badly so that's normal and I think you are correct in taking

> Augmentin in precaution considering the secretions are yellow; that's the

> first antibiotic they prescribe her before resorting to anything stronger.

I

> don't know about adding eucalyptus to the Bipap humidifier, we don't have

a

> humidifier and anyway I honestly believe that eucalyptus steam inhalations

> are best, it's 50% the steam and 50% the plant that does the good so maybe

> you could try sitting at the table over a pan of steaming water with a

towel

> over your head and the pan. I've heard people turn up their Bipap settings

> but we've never been advised to do it, just told to use it during the day

> too, so I don't touch them.

>

> As for the Cough Assist, here where we live, in Spain, the local NHS

> authority only approves them for children, not adults, so we were given an

> Ambu bag by the hospital and taught to use it with an assisted cough. We

do

> fine with it, though it's not so automatic, and also it's portable -

unlike

> the machine - so if we eat out we take it. And one thing about assisted

> coughs; don't overdo them because too much coughing puts stress on the

lungs

> and can produce even more secretions, so don't be too zealous, just do it

> regularly and as needed. And drink a lot. People with SMA often don't

drink

> enough.

>

> One last thing - we consider a Ventolin inhaler of vital importance when

> there's congestion! One dose every 4 hours.

>

> Hope all goes well soon.

>

> - .

> http://elaticodejulie.spaces.live.com/

> http://juliesattic.spaces.live.com/

>

>

>

>

>

[Guest guest]

,

When my son Brett is really sick and Bi-Pap dependent, he eats in bed with his

Bi-Pap on. We elevate the head to about 30 degrees and put a small hand towel

rolled up under his neck- this allows him to be able to eat and drink without

having the secretions issues caused by sitting up. He cannot eat at all sitting

up in his chair if he is having a rough time.

Our " sick routine " is every 4 hours:

4 sets of 5 cough assist (40/40 Pressures)

IPV with Xopenex for 10 minutes (alternating with Bi-Pap breaks if he needs it)-

We use Xoponex for 2 treatments and Saline for the other treatments

4 sets of 5 cough assist (40/40 Pressures)

Postural drainage for 20 minutes- we use a wedge underneath the mattress

**Optional**If he is really bad, we do the nebulizer inline with the Bi-Pap

while he is doing postural drainage and use Pulmozyme for one treatment and

saline for the other treatments to help loosen stuff up

**Also if he is really bad, we add in Pulmicort twice a day through the

nebulizer

The other main things are extra water to thin out the secretions, he has a

Mic-Key button, so we give extra water flushes every 2 hours. Hope some of this

helps, hope you feel better soon!

Kristal- Mom to Brett- SMA II- 10 years old

Visit Brett @ www.our-sma-angels.com/brett

OR www.caringbridge.org/visit/brettwilson

Re: Re: Endless congestion! Suggestions?

Thanks lori, and kristina for tips. Will ask gp about meds mentioned

tomorrow.

Still no let up in the oceans of secretions. A big problem it is causing is

affecting my eating. Most times when I get up to eat within 5 mins

secretions block my airway (maybe like you describe ) so I have to

quickie get in bed, lie on side and use cough assist to clear airway.

Luckily once a day I am able to sit up long enough to eat one meal. Hard to

keep up energy on one meal but I don't seem to find a technique to be able

to eat in bed. Anyone else had this problem and found a solution?

Sent from my phone

On 9 Sep 2010, at 19:23, " " <julie.marlow@...> wrote:

, my English is good because I was born and educated in the UK but have

been living here in Spain for so many years now and being bilingual it's

deteriorated and sometimes weird things come out!

Sorry to hear you still have trouble with secretions, but considering that I

think you've been through a small infection that's quite usual. In July my

daughter had a really bad virus and the secretions lasted a long time,

almost a month. It's a good sign you no longer have a temperature and I

agree with your GP in that it's a question of time and the PT routine you

are already following. We've found that when , my daughter, has a sea

of mucous she can't sit up because the gravity makes it slip down and cover

her airways and she can't control it even with the Bipap, which helps a lot.

So she lies down, often with the Bipap - a bummer, obviously because she

spends half the day there - and it tends to calm down more so she can sit up

again for a while. Also, people with SMA breathe better lying down. Here's

what Dr. Schroth says:

" SMA results in very weak intercostal muscles and a

relatively stronger diaphragm. When positioned upright,

the functional residual capacity, or the volume at the

end of normal expiration,is increased. The functional

residual capacity in SMA is smallest when in the Tren-

delenburg position. Thus, for SMA types 1 and 2, posi-

tioning flat or in the Trendelenburg position during re-

spiratory compromise will benefit diaphragm function.

In the upright position, the individual who is diaphragm

dependent for breathing is at a mechanical disadvantage. "

I can understand how frustrated you feel. Has this not happened before when

you catch a cold? I think, when you can, you have to look into the reflux

question in case you are still refluxing.

Do you get someone to press down on your diaphragm when you use the

CoughAssist to cough harder?

Also, if you could hitch up something like our home invention for steam

vapours, the steam would enter your lungs much more directly - picture here:

http://cid-ea45327a6d5728ce.photos.live.com/self.aspx/APARATOS/invento

^_vahos.JPG

And if you really think this is going on too long and if you think the

secretions are increasing, is your GP sure the dosage of Augmentin is

correct and shouldn't be stronger?

My daughter is only small, about 33 kilos, and they give her Augmentin

875/125 when it's a bad cold.

-

http://elaticodejulie.spaces.live.com/

http://juliesattic.spaces.live.com/

>

>

>

> My daughter has had a low temperature too on a couple of occasions after

> aspirating badly so that's normal and I think you are correct in taking

> Augmentin in precaution considering the secretions are yellow; that's the

> first antibiotic they prescribe her before resorting to anything stronger.

I

> don't know about adding eucalyptus to the Bipap humidifier, we don't have

a

> humidifier and anyway I honestly believe that eucalyptus steam inhalations

> are best, it's 50% the steam and 50% the plant that does the good so maybe

> you could try sitting at the table over a pan of steaming water with a

towel

> over your head and the pan. I've heard people turn up their Bipap settings

> but we've never been advised to do it, just told to use it during the day

> too, so I don't touch them.

>

> As for the Cough Assist, here where we live, in Spain, the local NHS

> authority only approves them for children, not adults, so we were given an

> Ambu bag by the hospital and taught to use it with an assisted cough. We

do

> fine with it, though it's not so automatic, and also it's portable -

unlike

> the machine - so if we eat out we take it. And one thing about assisted

> coughs; don't overdo them because too much coughing puts stress on the

lungs

> and can produce even more secretions, so don't be too zealous, just do it

> regularly and as needed. And drink a lot. People with SMA often don't

drink

> enough.

>

> One last thing - we consider a Ventolin inhaler of vital importance when

> there's congestion! One dose every 4 hours.

>

> Hope all goes well soon.

>

> - .

> http://elaticodejulie.spaces.live.com/

> http://juliesattic.spaces.live.com/

>

>

>

>

>

[Guest guest]

I do pt after treatments, so like every two hours. I use the

trendelenburg feature on my bed, which my dad guesses is 30 degrees.

Maybe pillows would be easier to use to prop you " upside down " ?

& Ivy- service dog extraordinaire

www.k94life.org

On 9/10/2010 2:41 AM, Moss wrote:

> Thanks for this . How often do you do pt when like this? I am trying

> to figure out a good way to drain as my bed doesn't tip me head down and too

> hard for my PAs to get me lying on a wedge cushion. So got board under

> mattress to try and use the leg raising function to get me tipped. Is there

> a specific degree of tip? Maybe I'm not tipping enough.

>

>

> Sent from my phone

>

>

> On 10 Sep 2010, at 01:51, Lorey<milkynet@...> wrote:

>

>

>

> I have secretions like that after pneumonia, it usually takes about

> two or so weeks for it to go away. After the infection is gone I do

> everything I can to thin the secretions out and moving around until my

> lungs catch on that they can stop the fountains of mucus. For me it's

> usually breathing treatments every to hours, followed by chest pt in

> postural drainage. Sometimes I'll just hang out in postural drainage if

> it's really bad. I also increase fluids too. Since albuterol bothers

> you, you can try doing a treatment with just Saline. It might help to

> thin everything out.

> For eating, when I'm that sick I have to eat/be fed laying down. Like

> you, I just get junkie if I eat sitting up but laying down, not a

> problem. . . . go figure!

> Hope you feel better!

>

> & Ivy- service dog extraordinaire

>

> www.k94life.org

>

> On 9/9/2010 3:44 PM, Moss wrote:

>> Thanks lori, and kristina for tips. Will ask gp about meds mentioned

>> tomorrow.

>> Still no let up in the oceans of secretions. A big problem it is causing

> is

>> affecting my eating. Most times when I get up to eat within 5 mins

>> secretions block my airway (maybe like you describe ) so I have to

>> quickie get in bed, lie on side and use cough assist to clear airway.

>> Luckily once a day I am able to sit up long enough to eat one meal. Hard

> to

>> keep up energy on one meal but I don't seem to find a technique to be able

>> to eat in bed. Anyone else had this problem and found a solution?

>>

>>

>> Sent from my phone

>>

>>

>> On 9 Sep 2010, at 19:23,

" " <julie.marlow@...<julie.marlow%40ymail.com>>

> wrote:

>>

>>

>> , my English is good because I was born and educated in the UK but

> have

>> been living here in Spain for so many years now and being bilingual it's

>> deteriorated and sometimes weird things come out!

>>

>> Sorry to hear you still have trouble with secretions, but considering that

> I

>> think you've been through a small infection that's quite usual. In July my

>> daughter had a really bad virus and the secretions lasted a long time,

>> almost a month. It's a good sign you no longer have a temperature and I

>> agree with your GP in that it's a question of time and the PT routine you

>> are already following. We've found that when , my daughter, has a sea

>> of mucous she can't sit up because the gravity makes it slip down and

> cover

>> her airways and she can't control it even with the Bipap, which helps a

> lot.

>> So she lies down, often with the Bipap - a bummer, obviously because she

>> spends half the day there - and it tends to calm down more so she can sit

> up

>> again for a while. Also, people with SMA breathe better lying down. Here's

>> what Dr. Schroth says:

>>

>> " SMA results in very weak intercostal muscles and a

>> relatively stronger diaphragm. When positioned upright,

>> the functional residual capacity, or the volume at the

>> end of normal expiration,is increased. The functional

>> residual capacity in SMA is smallest when in the Tren-

>> delenburg position. Thus, for SMA types 1 and 2, posi-

>> tioning flat or in the Trendelenburg position during re-

>> spiratory compromise will benefit diaphragm function.

>> In the upright position, the individual who is diaphragm

>> dependent for breathing is at a mechanical disadvantage. "

>>

>> I can understand how frustrated you feel. Has this not happened before

> when

>> you catch a cold? I think, when you can, you have to look into the reflux

>> question in case you are still refluxing.

>>

>> Do you get someone to press down on your diaphragm when you use the

>> CoughAssist to cough harder?

>>

>> Also, if you could hitch up something like our home invention for steam

>> vapours, the steam would enter your lungs much more directly - picture

> here:

>> http://cid-ea45327a6d5728ce.photos.live.com/self.aspx/APARATOS/invento

>> ^_vahos.JPG

>>

>> And if you really think this is going on too long and if you think the

>> secretions are increasing, is your GP sure the dosage of Augmentin is

>> correct and shouldn't be stronger?

>> My daughter is only small, about 33 kilos, and they give her Augmentin

>> 875/125 when it's a bad cold.

>>

>> -

>> http://elaticodejulie.spaces.live.com/

>> http://juliesattic.spaces.live.com/

>>

>>

>>>

>>>

>>>

>>> My daughter has had a low temperature too on a couple of occasions after

>>> aspirating badly so that's normal and I think you are correct in taking

>>> Augmentin in precaution considering the secretions are yellow; that's the

>>> first antibiotic they prescribe her before resorting to anything

> stronger.

>> I

>>> don't know about adding eucalyptus to the Bipap humidifier, we don't have

>> a

>>> humidifier and anyway I honestly believe that eucalyptus steam

> inhalations

>>> are best, it's 50% the steam and 50% the plant that does the good so

> maybe

>>> you could try sitting at the table over a pan of steaming water with a

>> towel

>>> over your head and the pan. I've heard people turn up their Bipap

> settings

>>> but we've never been advised to do it, just told to use it during the day

>>> too, so I don't touch them.

>>>

>>> As for the Cough Assist, here where we live, in Spain, the local NHS

>>> authority only approves them for children, not adults, so we were given

> an

>>> Ambu bag by the hospital and taught to use it with an assisted cough. We

>> do

>>> fine with it, though it's not so automatic, and also it's portable -

>> unlike

>>> the machine - so if we eat out we take it. And one thing about assisted

>>> coughs; don't overdo them because too much coughing puts stress on the

>> lungs

>>> and can produce even more secretions, so don't be too zealous, just do it

>>> regularly and as needed. And drink a lot. People with SMA often don't

>> drink

>>> enough.

>>>

>>> One last thing - we consider a Ventolin inhaler of vital importance when

>>> there's congestion! One dose every 4 hours.

>>>

>>> Hope all goes well soon.

>>>

>>> - .

>>> http://elaticodejulie.spaces.live.com/

>>> http://juliesattic.spaces.live.com/

>>>

>>>

>>>

>>>

>>>

[Guest guest]

a I got my gp to write a prescription for prendisone like you

suggested. He says to start them if it all got too much over the weekend. If

I do start how soon do you generally notice them working?

Anyone had any bad experience with prendisone?

Cheers

Sent from my phone

On 9 Sep 2010, at 05:18, " a B. " <kristina45231@...> wrote:

Have you ever taken Prendisone to help your lungs heal quicker? When I have

chest gunk I take antibiotics and sometimes that, too. It's usually a 5 day

course. Can you do breathing treatments? Without Xopenex I'd never get

through

sickness. ~a

Endless congestion! Suggestions?

Thanks for tips julie, you have very good English!

My secretions seem clear now but today they have vastly increased in

quantity. Until today I would do cough assist and pt then be ok for an hour

or two. Today can spend an hour doing cough assist and postural drainage

then 10 mins later the secretions all well up again. It is obviously

exhausting so looking for wise words from people here on how to manage the

situation at home. I started augmentin last Friday and no longer have temp.

Gp thinks it is just matter of waiting for my lungs to settle down but don't

think I have conveyed to him how scary it can feel like drowning sometimes!

Hoping for top tips!

Sent from my phone

On 4 Sep 2010, at 23:50, " "

<julie.marlow@...<julie.marlow%40ymail.com>>

wrote:

My daughter has had a low temperature too on a couple of occasions after

aspirating badly so that's normal and I think you are correct in taking

Augmentin in precaution considering the secretions are yellow; that's the

first antibiotic they prescribe her before resorting to anything stronger. I

don't know about adding eucalyptus to the Bipap humidifier, we don't have a

humidifier and anyway I honestly believe that eucalyptus steam inhalations

are best, it's 50% the steam and 50% the plant that does the good so maybe

you could try sitting at the table over a pan of steaming water with a towel

over your head and the pan. I've heard people turn up their Bipap settings

but we've never been advised to do it, just told to use it during the day

too, so I don't touch them.

As for the Cough Assist, here where we live, in Spain, the local NHS

authority only approves them for children, not adults, so we were given an

Ambu bag by the hospital and taught to use it with an assisted cough. We do

fine with it, though it's not so automatic, and also it's portable - unlike

the machine - so if we eat out we take it. And one thing about assisted

coughs; don't overdo them because too much coughing puts stress on the lungs

and can produce even more secretions, so don't be too zealous, just do it

regularly and as needed. And drink a lot. People with SMA often don't drink

enough.

One last thing - we consider a Ventolin inhaler of vital importance when

there's congestion! One dose every 4 hours.

Hope all goes well soon.

- .

http://elaticodejulie.spaces.live.com/

http://juliesattic.spaces.live.com/

[Guest guest]

Thanks will research getting a bed like that when better and able to google

again! Think it would be quite tricky for my PAs to get me positioned over

pillows. Will persevere with board under mattress. Thanks for letting me

know the angle to aim for!

Sent from my phone

On 10 Sep 2010, at 21:39, Lorey <milkynet@...> wrote:

I do pt after treatments, so like every two hours. I use the

trendelenburg feature on my bed, which my dad guesses is 30 degrees.

Maybe pillows would be easier to use to prop you " upside down " ?

& Ivy- service dog extraordinaire

www.k94life.org

On 9/10/2010 2:41 AM, Moss wrote:

> Thanks for this . How often do you do pt when like this? I am

trying

> to figure out a good way to drain as my bed doesn't tip me head down and

too

> hard for my PAs to get me lying on a wedge cushion. So got board under

> mattress to try and use the leg raising function to get me tipped. Is

there

> a specific degree of tip? Maybe I'm not tipping enough.

>

>

> Sent from my phone

>

>

> On 10 Sep 2010, at 01:51,

Lorey<milkynet@...<milkynet%40verizon.net>>

wrote:

>

>

>

> I have secretions like that after pneumonia, it usually takes about

> two or so weeks for it to go away. After the infection is gone I do

> everything I can to thin the secretions out and moving around until my

> lungs catch on that they can stop the fountains of mucus. For me it's

> usually breathing treatments every to hours, followed by chest pt in

> postural drainage. Sometimes I'll just hang out in postural drainage if

> it's really bad. I also increase fluids too. Since albuterol bothers

> you, you can try doing a treatment with just Saline. It might help to

> thin everything out.

> For eating, when I'm that sick I have to eat/be fed laying down. Like

> you, I just get junkie if I eat sitting up but laying down, not a

> problem. . . . go figure!

> Hope you feel better!

>

> & Ivy- service dog extraordinaire

>

> www.k94life.org

>

> On 9/9/2010 3:44 PM, Moss wrote:

>> Thanks lori, and kristina for tips. Will ask gp about meds

mentioned

>> tomorrow.

>> Still no let up in the oceans of secretions. A big problem it is causing

> is

>> affecting my eating. Most times when I get up to eat within 5 mins

>> secretions block my airway (maybe like you describe ) so I have to

>> quickie get in bed, lie on side and use cough assist to clear airway.

>> Luckily once a day I am able to sit up long enough to eat one meal. Hard

> to

>> keep up energy on one meal but I don't seem to find a technique to be

able

>> to eat in bed. Anyone else had this problem and found a solution?

>>

>>

>> Sent from my phone

>>

>>

>> On 9 Sep 2010, at 19:23,

" " <julie.marlow@...<julie.marlow%40ymail.com>

<julie.marlow%40ymail.com>>

> wrote:

>>

>>

>> , my English is good because I was born and educated in the UK but

> have

>> been living here in Spain for so many years now and being bilingual it's

>> deteriorated and sometimes weird things come out!

>>

>> Sorry to hear you still have trouble with secretions, but considering

that

> I

>> think you've been through a small infection that's quite usual. In July

my

>> daughter had a really bad virus and the secretions lasted a long time,

>> almost a month. It's a good sign you no longer have a temperature and I

>> agree with your GP in that it's a question of time and the PT routine you

>> are already following. We've found that when , my daughter, has a

sea

>> of mucous she can't sit up because the gravity makes it slip down and

> cover

>> her airways and she can't control it even with the Bipap, which helps a

> lot.

>> So she lies down, often with the Bipap - a bummer, obviously because she

>> spends half the day there - and it tends to calm down more so she can sit

> up

>> again for a while. Also, people with SMA breathe better lying down.

Here's

>> what Dr. Schroth says:

>>

>> " SMA results in very weak intercostal muscles and a

>> relatively stronger diaphragm. When positioned upright,

>> the functional residual capacity, or the volume at the

>> end of normal expiration,is increased. The functional

>> residual capacity in SMA is smallest when in the Tren-

>> delenburg position. Thus, for SMA types 1 and 2, posi-

>> tioning flat or in the Trendelenburg position during re-

>> spiratory compromise will benefit diaphragm function.

>> In the upright position, the individual who is diaphragm

>> dependent for breathing is at a mechanical disadvantage. "

>>

>> I can understand how frustrated you feel. Has this not happened before

> when

>> you catch a cold? I think, when you can, you have to look into the reflux

>> question in case you are still refluxing.

>>

>> Do you get someone to press down on your diaphragm when you use the

>> CoughAssist to cough harder?

>>

>> Also, if you could hitch up something like our home invention for steam

>> vapours, the steam would enter your lungs much more directly - picture

> here:

>> http://cid-ea45327a6d5728ce.photos.live.com/self.aspx/APARATOS/invento

>> ^_vahos.JPG

>>

>> And if you really think this is going on too long and if you think the

>> secretions are increasing, is your GP sure the dosage of Augmentin is

>> correct and shouldn't be stronger?

>> My daughter is only small, about 33 kilos, and they give her Augmentin

>> 875/125 when it's a bad cold.

>>

>> -

>> http://elaticodejulie.spaces.live.com/

>> http://juliesattic.spaces.live.com/

>>

>>

>>>

>>>

>>>

>>> My daughter has had a low temperature too on a couple of occasions after

>>> aspirating badly so that's normal and I think you are correct in taking

>>> Augmentin in precaution considering the secretions are yellow; that's

the

>>> first antibiotic they prescribe her before resorting to anything

> stronger.

>> I

>>> don't know about adding eucalyptus to the Bipap humidifier, we don't

have

>> a

>>> humidifier and anyway I honestly believe that eucalyptus steam

> inhalations

>>> are best, it's 50% the steam and 50% the plant that does the good so

> maybe

>>> you could try sitting at the table over a pan of steaming water with a

>> towel

>>> over your head and the pan. I've heard people turn up their Bipap

> settings

>>> but we've never been advised to do it, just told to use it during the

day

>>> too, so I don't touch them.

>>>

>>> As for the Cough Assist, here where we live, in Spain, the local NHS

>>> authority only approves them for children, not adults, so we were given

> an

>>> Ambu bag by the hospital and taught to use it with an assisted cough. We

>> do

>>> fine with it, though it's not so automatic, and also it's portable -

>> unlike

>>> the machine - so if we eat out we take it. And one thing about assisted

>>> coughs; don't overdo them because too much coughing puts stress on the

>> lungs

>>> and can produce even more secretions, so don't be too zealous, just do

it

>>> regularly and as needed. And drink a lot. People with SMA often don't

>> drink

>>> enough.

>>>

>>> One last thing - we consider a Ventolin inhaler of vital importance when

>>> there's congestion! One dose every 4 hours.

>>>

>>> Hope all goes well soon.

>>>

>>> - .

>>> http://elaticodejulie.spaces.live.com/

>>> http://juliesattic.spaces.live.com/

>>>

>>>

>>>

>>>

>>>

[Guest guest]

I noticed it helping within a day or so. I haven't had any adverse effects from

it. ~a

Endless congestion! Suggestions?

Thanks for tips julie, you have very good English!

My secretions seem clear now but today they have vastly increased in

quantity. Until today I would do cough assist and pt then be ok for an hour

or two. Today can spend an hour doing cough assist and postural drainage

then 10 mins later the secretions all well up again. It is obviously

exhausting so looking for wise words from people here on how to manage the

situation at home. I started augmentin last Friday and no longer have temp.

Gp thinks it is just matter of waiting for my lungs to settle down but don't

think I have conveyed to him how scary it can feel like drowning sometimes!

Hoping for top tips!

Sent from my phone

On 4 Sep 2010, at 23:50, " "

<julie.marlow@...<julie.marlow%40ymail.com>>

wrote:

My daughter has had a low temperature too on a couple of occasions after

aspirating badly so that's normal and I think you are correct in taking

Augmentin in precaution considering the secretions are yellow; that's the

first antibiotic they prescribe her before resorting to anything stronger. I

don't know about adding eucalyptus to the Bipap humidifier, we don't have a

humidifier and anyway I honestly believe that eucalyptus steam inhalations

are best, it's 50% the steam and 50% the plant that does the good so maybe

you could try sitting at the table over a pan of steaming water with a towel

over your head and the pan. I've heard people turn up their Bipap settings

but we've never been advised to do it, just told to use it during the day

too, so I don't touch them.

As for the Cough Assist, here where we live, in Spain, the local NHS

authority only approves them for children, not adults, so we were given an

Ambu bag by the hospital and taught to use it with an assisted cough. We do

fine with it, though it's not so automatic, and also it's portable - unlike

the machine - so if we eat out we take it. And one thing about assisted

coughs; don't overdo them because too much coughing puts stress on the lungs

and can produce even more secretions, so don't be too zealous, just do it

regularly and as needed. And drink a lot. People with SMA often don't drink

enough.

One last thing - we consider a Ventolin inhaler of vital importance when

there's congestion! One dose every 4 hours.

Hope all goes well soon.

- .

http://elaticodejulie.spaces.live.com/

http://juliesattic.spaces.live.com/

[Guest guest]

Many thanks kristal for taking the time to detail your routines. Bit worried

it sounds like I am using the cough assist lot more than you do, sometimes

every 30 mins. Is bretts bipap set to only give a breath when he triggers

it? Mine does a breath regardless and so I find it tricky to time a swallow

to avoid the breath in.

Sent from my phone

On 10 Sep 2010, at 17:22, " Kristal " <kkoehler47@...> wrote:

,

When my son Brett is really sick and Bi-Pap dependent, he eats in bed with

his Bi-Pap on. We elevate the head to about 30 degrees and put a small hand

towel rolled up under his neck- this allows him to be able to eat and drink

without having the secretions issues caused by sitting up. He cannot eat at

all sitting up in his chair if he is having a rough time.

Our " sick routine " is every 4 hours:

4 sets of 5 cough assist (40/40 Pressures)

IPV with Xopenex for 10 minutes (alternating with Bi-Pap breaks if he needs

it)- We use Xoponex for 2 treatments and Saline for the other treatments

4 sets of 5 cough assist (40/40 Pressures)

Postural drainage for 20 minutes- we use a wedge underneath the mattress

**Optional**If he is really bad, we do the nebulizer inline with the Bi-Pap

while he is doing postural drainage and use Pulmozyme for one treatment and

saline for the other treatments to help loosen stuff up

**Also if he is really bad, we add in Pulmicort twice a day through the

nebulizer

The other main things are extra water to thin out the secretions, he has a

Mic-Key button, so we give extra water flushes every 2 hours. Hope some of

this helps, hope you feel better soon!

Kristal- Mom to Brett- SMA II- 10 years old

Visit Brett @ www.our-sma-angels.com/brett

OR www.caringbridge.org/visit/brettwilson

Re: Re: Endless congestion! Suggestions?

Thanks lori, and kristina for tips. Will ask gp about meds mentioned

tomorrow.

Still no let up in the oceans of secretions. A big problem it is causing is

affecting my eating. Most times when I get up to eat within 5 mins

secretions block my airway (maybe like you describe ) so I have to

quickie get in bed, lie on side and use cough assist to clear airway.

Luckily once a day I am able to sit up long enough to eat one meal. Hard to

keep up energy on one meal but I don't seem to find a technique to be able

to eat in bed. Anyone else had this problem and found a solution?

Sent from my phone

On 9 Sep 2010, at 19:23, " "

<julie.marlow@...<julie.marlow%40ymail.com>>

wrote:

, my English is good because I was born and educated in the UK but have

been living here in Spain for so many years now and being bilingual it's

deteriorated and sometimes weird things come out!

Sorry to hear you still have trouble with secretions, but considering that I

think you've been through a small infection that's quite usual. In July my

daughter had a really bad virus and the secretions lasted a long time,

almost a month. It's a good sign you no longer have a temperature and I

agree with your GP in that it's a question of time and the PT routine you

are already following. We've found that when , my daughter, has a sea

of mucous she can't sit up because the gravity makes it slip down and cover

her airways and she can't control it even with the Bipap, which helps a lot.

So she lies down, often with the Bipap - a bummer, obviously because she

spends half the day there - and it tends to calm down more so she can sit up

again for a while. Also, people with SMA breathe better lying down. Here's

what Dr. Schroth says:

" SMA results in very weak intercostal muscles and a

relatively stronger diaphragm. When positioned upright,

the functional residual capacity, or the volume at the

end of normal expiration,is increased. The functional

residual capacity in SMA is smallest when in the Tren-

delenburg position. Thus, for SMA types 1 and 2, posi-

tioning flat or in the Trendelenburg position during re-

spiratory compromise will benefit diaphragm function.

In the upright position, the individual who is diaphragm

dependent for breathing is at a mechanical disadvantage. "

I can understand how frustrated you feel. Has this not happened before when

you catch a cold? I think, when you can, you have to look into the reflux

question in case you are still refluxing.

Do you get someone to press down on your diaphragm when you use the

CoughAssist to cough harder?

Also, if you could hitch up something like our home invention for steam

vapours, the steam would enter your lungs much more directly - picture here:

http://cid-ea45327a6d5728ce.photos.live.com/self.aspx/APARATOS/invento

^_vahos.JPG

And if you really think this is going on too long and if you think the

secretions are increasing, is your GP sure the dosage of Augmentin is

correct and shouldn't be stronger?

My daughter is only small, about 33 kilos, and they give her Augmentin

875/125 when it's a bad cold.

-

http://elaticodejulie.spaces.live.com/

http://juliesattic.spaces.live.com/

>

>

>

> My daughter has had a low temperature too on a couple of occasions after

> aspirating badly so that's normal and I think you are correct in taking

> Augmentin in precaution considering the secretions are yellow; that's the

> first antibiotic they prescribe her before resorting to anything stronger.

I

> don't know about adding eucalyptus to the Bipap humidifier, we don't have

a

> humidifier and anyway I honestly believe that eucalyptus steam inhalations

> are best, it's 50% the steam and 50% the plant that does the good so maybe

> you could try sitting at the table over a pan of steaming water with a

towel

> over your head and the pan. I've heard people turn up their Bipap settings

> but we've never been advised to do it, just told to use it during the day

> too, so I don't touch them.

>

> As for the Cough Assist, here where we live, in Spain, the local NHS

> authority only approves them for children, not adults, so we were given an

> Ambu bag by the hospital and taught to use it with an assisted cough. We

do

> fine with it, though it's not so automatic, and also it's portable -

unlike

> the machine - so if we eat out we take it. And one thing about assisted

> coughs; don't overdo them because too much coughing puts stress on the

lungs

> and can produce even more secretions, so don't be too zealous, just do it

> regularly and as needed. And drink a lot. People with SMA often don't

drink

> enough.

>

> One last thing - we consider a Ventolin inhaler of vital importance when

> there's congestion! One dose every 4 hours.

>

> Hope all goes well soon.

>

> - .

> http://elaticodejulie.spaces.live.com/

> http://juliesattic.spaces.live.com/

>

>

>

>

>