Breathing problems

[Guest guest]

In a message dated 2/19/01 1:12:05 PM Eastern Standard Time,

texasbluebonnets@... writes:

<< There are alot of virus's going around this year, and we are being told

there's no escaping it, and that it's due to the lack of winter we had LAST

year.

>>

Gads , if that is true we are in for a blinger of a time next

winter!!!!! Guess I better start thinking of these as the good days. LOL

Gail

[Guest guest]

>>Hope everyone else is

spared from these breathing problems.

Gail

<<

Hi Gail,

if it's any consolation our whole family has had it hard this wonter as

well. And as for wishing it would get cold enough to kill of the germs,

well up here in Missouri it's been below zero several times and we still

get sick.

There are alot of virus's going around this year, and we are being told

there's no escaping it, and that it's due to the lack of winter we had LAST

year.

[Guest guest]

Theo... my first thought would be the Amiodarone that you're on...

but you say doc has ruled that out? I'm wondering how he did that...

can you share w/us? ... if you don't already have it, here is a site

where you can read the possible side effects of Amiodarone...

http://my.webmd.com/content/asset/uspdi.202029 ... this seems to be a

more common med of late so I'm sure someone using it will have a

reply shortly... good luck to you.

JES in NJ, USA

God created your face... You create the expression

> This spring I had a bronchial infection, a bug going around that a

lot of

> people had. I had breathing problems. When I was well, they

replaced my icd

> with a new one. Battery worn out. I was great for 2 weeks after

and then the

> breathing problems came back. They are not as severe as they had

beenin the

> past. I do not have to sit up in bed to sleep. My lungs are

clear as a

> bell .. had xrays and cat scans. My doc says he does not believe

it to be a

> virus, nor an allergy, nor my cardiac medication. Tomorrow I see

my

> cardiologist to discuss the breathing with him. It makes me tired,

and I

> sometimes have to sit down or just stand to recover my breath. I

have had my

> icd for 4 years now. Have had breathing problems every now and

then, but

> this time it's lasting about 3 or 4 weeks so far. Any comments? I

am on

> amiodarone, and just 12 mg of antenalol, along with furosemide for

water,

> allopurinol for gout, pravachol for cholesterol and another

cholesterold

> drug. I'll let you know what the cardiologist says tomorrow.

Theo1415

[Guest guest]

Yes I am on amiadrone and it gives me breathing problems also. i am on

singular and flovent and albuterol and it seems to help it. don't let them

fool you it is from the amiadrone.

melissa

[Guest guest]

Yes I am on amiadrone and it gives me breathing problems also. i am on

singular and flovent and albuterol and it seems to help it. don't let them

fool you it is from the amiadrone.

melissa

[Guest guest]

Theo. Have you been checked for CHF? I have a dilated

Cardiomyopathy/ARVD and they have turned into congestive heart

failure (It started with being out of breath). I am on Amiodarone

amoung other drugs. Maybe getting checked for this could help you.

Take care. Tami from Michigan

> This spring I had a bronchial infection, a bug going around that a

lot of

> people had. I had breathing problems. When I was well, they

replaced my icd

> with a new one. Battery worn out. I was great for 2 weeks after

and then the

> breathing problems came back. They are not as severe as they had

beenin the

> past. I do not have to sit up in bed to sleep. My lungs are

clear as a

> bell .. had xrays and cat scans. My doc says he does not believe

it to be a

> virus, nor an allergy, nor my cardiac medication. Tomorrow I see

my

> cardiologist to discuss the breathing with him. It makes me tired,

and I

> sometimes have to sit down or just stand to recover my breath. I

have had my

> icd for 4 years now. Have had breathing problems every now and

then, but

> this time it's lasting about 3 or 4 weeks so far. Any comments? I

am on

> amiodarone, and just 12 mg of antenalol, along with furosemide for

water,

> allopurinol for gout, pravachol for cholesterol and another

cholesterold

> drug. I'll let you know what the cardiologist says tomorrow.

Theo1415

[Guest guest]

,

What did the results of the sleep study show?? Obstructive Sleep Apnea

(OSA)? If so, and she has had her T & As removed, right??? Then, it is

important to find out what is the cause of the obstruction. However, while

it maybe regrowth of adnoids (and an injection of rhinocort will just

shrink it and is pretty easy and effective)... in kids with DS it maybe

some other causes. You should ask your MD if it could be narrowing of the

laryngotracheal area, abnormally small midfacial area, or abnormally large

and floppy soft palate (which can be solved with uvulopalatopharyngoplasty

aka UPP). What about CPAP (a nasal mask with a tube to apply pressure to

allow her the correct amount of air) during the night for sleeping??? A

trach sounds pretty drastic to me! Failure to relieve OSA with T & A surgery

is not unheard of (esp in kids with DS) and can be approached with other

means. Did you seek another opinion??

That's just my 2 cents worth!

Cheers!

Sara

--On Monday, December 31, 2001, 8:56 PM -0500 Rusty and Medrano

<rmedrano@...> wrote:

>

> I got a question... several weeks ago we took 8yr(DS),to have a

> sleep study done. The reason why was because she got where she was

> getting up 5-6x a night. I have been totally tired..and alone (DH been

> working alot and when is home not much help). So anyway.... we got the

> results in 4 days after the sleep study. Was told 7-14 days is

> typical...but when the dr called, I knew it was not great news. Well

> they(lung drs) referred us back to the ENT again.. We went today and he

> saw no regrowth of T & A and her nose looked good along with her ears. He

> was very upset with the test results and not a happy camper. I took her

> to the dr today and went in totally BLIND! Not expecting to hear that he

> wanted to take her to the OR and do some exploring in the nose and

> throat,windpipe and voice box to see if there is any obstrution...mabey a

> bit of anoid might have growed back and in the way.. my question.. He

> mention something about injecting her anoid with rinocort??? anyone heard

> of this and what does it do?? the purpose?? He also mention last option

> would be a trach.. so I was in really BIG SHOCKED by the end of her appt.

> Now I am loaded with questions and no answer so thought I would ask

> yall.. mabey SARA??

>

> Also the surgery will take place in the next few months...

>

> On the lighter note.. took Dayton 3yr(DS) too the same ENT at the same

> time.. Hearing checked out great and the chronic sinus infection will

> come and go till he is bigger.. told me I was doing wonderful with him...

> after 2 1/2 months of meds.. he ought to be wonderful..lol

>

> OK.. glad i got some good news.. but need some answer with the other

> now..

>

> Thanks in Advance..

>

> Happy New Year 2002.... WOW

>

> , mom to 8yr(DS) and Dayton 3yr(DS)

>

[Guest guest]

Ok... Sara, Thanks for all the information. I feel somewhat better knowing

more than before.

Not sure if I didn't write it right or not. The DR said the last resort

would be the trach, if nothing else was found. I am assuming when he does

surgery,this will show one of the few things you mention or simply the

regrowth of adnoids and the injection stuff will do the trick.

We discuss the CPAP but she will not allow it on her face or up her nose.

The sleep study showed OSA. I did alot of reading yesterday on it at Dr.Len

site. Oh boy! Did not realized that had alot of the common signs

such as reflux, noisy breathing,swallowing issues,also signs of ADHD. Makes

me feel really bad thinking I had it all under control and Boom! My world

shatters(or least I feel like it).

OH, ya T & A was done at 2 1/2 yrs of age.

Any more info let me know.. I hate being blind.

P.S. What is UPP excatly? Curious now....

thanks,

[Guest guest]

Hi all. I know I never post anymore, but things are nuts here. 4 kids in school, battles with the school over IEP's, me in school(I graduate in May YIPPIE) and I am working now.

But I had to throw in my experience with breathing issues. When was 5weeks old he was diagnosed with obstructive sleep apnea, caused by laryngomalsia (excess epigglottial and aritniod tissue). He had a epiglottialplasy done at 6 weeks old. But due to ongoing tissue growth and scar tissue formation he had continuing problems. He would not tolerate CPAP, we explored many options and went to several docs. However in the end the choice was a trach or risk brain, heart damage or the possibility of obstructing one night and not clearing it and dying. He had a trach placed at around 10 months old. He had it until he was 4 years old. At 4 they were able to do more surgery and since his throat was bigger it could accommodate the extra tissues. I just want to let you know that as awful as it sounds, a trach is something that can be managed. There are speaking valves that allow the child to talk. It was not a fun time in our lives and there were a lot of problems, but in the end it allowed us to keep our son. If it had not been for the trach, I have no doubt wouldn't be here. I just wanted to share that. I hope her problems turn out to be less severe than Bill and she doesn't need the trach, but if she does, I am here to offer support and advise. Cause you do have to learn to be creative with a toddler with a trach.

Mom of triplets (DS), , Alec age 6 and Hunter age 4

[Guest guest]

... so glad to be able to talk to someone who has been through this. I looked and found nothing on epiglottialplasy, what is this actually??

Also what is laryngomalsia? This is all so new to me.

I would love to have alot of questions and answer and not be slapped by something new you know. I like to know what the doctors are speaking of before they go into long details..unless I got more questions and think I will no matter what.

Ok... hopefully what ever can be fix with out a trach..seeing she is 8yrs old..

Thanks

...

[Guest guest]

When my problems first started there were time when

I thought I might have asthma and even mentioned

that to the doctor and he said no my lungs were fine.

I previously wrote about the spasm attacks I had on

New Year's Day. I had not previously taken Arginine

because I didn't think my spasms were that bad until

then. I started the Arginine on Wednesday at noon.

I had two 500 mg capsules that day, 3 on Thursday,

2 on Friday and had taken one on Saturday. I started

out with the coughing yesterday afternoon and then

reached a point that I could not breath. I felt that

someone was sitting on my chest or squeezing my heart.

I came very close to going to the ER it got so bad. I

went back last night and read again Joops reference to

the possible side effects of Arginine and one of them

was breathing difficulty. IS that what happened to me?

I have no idea, but I will not continue to take Arginine

until I check it out further. That episode was very scary.

I have not heard many here discuss the extreme coughing.

Am I the only one who has this symptom?

Magg

[Guest guest]

JC, Sorry, I guess I did not express myself well. I

don't think the coughing was caused by the Arginine.

I have had the coughing from the beginning of the

time I started the A symptoms. It is the difficulty

in breathing that I think might have been caused by

the Arginine. Of course, it could be something else

entirely, but it was so frightening I will not use the

Arginine again until I know something else was the cause.

The coughing is often followed by spasms, but I do not

cough up anything. It starts and remains constant for

several hours and then subsides.

Magg

[Guest guest]

Magg,

I have time that I cough so hard I cough things up. That has not increased with the Arginine. It has not worsened either.

J.C.

Re: Breathing Problems

When my problems first started there were time whenI thought I might have asthma and even mentioned that to the doctor and he said no my lungs were fine.I previously wrote about the spasm attacks I had onNew Year's Day. I had not previously taken Argininebecause I didn't think my spasms were that bad untilthen. I started the Arginine on Wednesday at noon.I had two 500 mg capsules that day, 3 on Thursday,2 on Friday and had taken one on Saturday. I startedout with the coughing yesterday afternoon and thenreached a point that I could not breath. I felt thatsomeone was sitting on my chest or squeezing my heart.I came very close to going to the ER it got so bad. Iwent back last night and read again Joops reference tothe possible side effects of Arginine and one of them was breathing difficulty. IS that what happened to me?I have no idea, but I will not continue to take Arginineuntil I check it out further. That episode was very scary.I have not heard many here discuss the extreme coughing.Am I the only one who has this symptom?Magg

[Guest guest]

Magg,

I have had the coughing for years and then the spasms. I haven't taken anything but I would almost bet that your breathing problems aren't being caused by what you are taking. Having those terrible spasms I can very well relate to and I hope that you get some relief from them. I don't have to imagine how scary they are, I just had a major one in the supermarket today. It really concerns me that I could have one driving I wish there was something out there that would prevent them from happening but that wouldn't make me feel sleepy or in the case of pain pills make we worry that I might become addicted. My prayers are with you that you find out what is causing your breathing and chest pain problems.

MaggWho@... wrote: JC, Sorry, I guess I did not express myself well. Idon't think the coughing was caused by the Arginine.I have had the coughing from the beginning of the time I started the A symptoms. It is the difficultyin breathing that I think might have been caused bythe Arginine. Of course, it could be something elseentirely, but it was so frightening I will not use theArginine again until I know something else was the cause.The coughing is often followed by spasms, but I do notcough up anything. It starts and remains constant for several hours and then subsides.Magg

[Guest guest]

Magg,

Wow, what an episode! i haven't had any of the coughing. I took

arginine for two straight weeks 3 a day. The only thing I noticed

about it (and maybe it had nothing to do with the arginine at all...)

was that I was pretty hyper and energized. I am now taking it

symptomatically.

[Guest guest]

Hi to the Mirabals

Whatever they want to call it, I also had trouble breathing and ended

up using inhaler for a while. They called mine a (atypical pnemonia)

I ask them what that meant, as I had regular old pnemonia before, and

they said it was not typical pnemonia. OK so much for that. I had

to go through all kinds of breathing treatments while in hospital,

and had to use inhaler after leaving hospital. I guess I weaned

myself off the darn thing, as afterwards when making Dr. visits, they

would ask are you still using inhaler, I would answer first " oh very

little " then finally answering " no " . If I remember right it was

something called combovent or something like that. I believe that

some of us stilligans just get touched a little bit in the lungs by

this old dragon sometimes.

Dan

> Greetings All,

>

> Well, it's official. Vivian no longer has bronchitis. According

to the

> folks at Bethesda Medical late yesterday evening, Vivian has

asthma. She

> takes " flovent " 4 times per day, and " serevent " when her breathing

becomes

> very restrictive. They did a brochoscopy and found a polyp which

they

> removed immediately. She had a colonoscopy done about 1 month ago

to figure

> what was going on with her digestive tract. The doctor stated the

meds shes

> on must be the cause of her problems with loose stool. Stay

tuned........

>

> Thanks,

>

> Bob & Vivian Mirabal

>

>

[Guest guest]

Hi to the Mirabals

Whatever they want to call it, I also had trouble breathing and ended

up using inhaler for a while. They called mine a (atypical pnemonia)

I ask them what that meant, as I had regular old pnemonia before, and

they said it was not typical pnemonia. OK so much for that. I had

to go through all kinds of breathing treatments while in hospital,

and had to use inhaler after leaving hospital. I guess I weaned

myself off the darn thing, as afterwards when making Dr. visits, they

would ask are you still using inhaler, I would answer first " oh very

little " then finally answering " no " . If I remember right it was

something called combovent or something like that. I believe that

some of us stilligans just get touched a little bit in the lungs by

this old dragon sometimes.

Dan

> Greetings All,

>

> Well, it's official. Vivian no longer has bronchitis. According

to the

> folks at Bethesda Medical late yesterday evening, Vivian has

asthma. She

> takes " flovent " 4 times per day, and " serevent " when her breathing

becomes

> very restrictive. They did a brochoscopy and found a polyp which

they

> removed immediately. She had a colonoscopy done about 1 month ago

to figure

> what was going on with her digestive tract. The doctor stated the

meds shes

> on must be the cause of her problems with loose stool. Stay

tuned........

>

> Thanks,

>

> Bob & Vivian Mirabal

>

>

[Guest guest]

Hi Vivian,

First off lets talk directly to you before that ol'husband of yours gets a

swelled head for all of us thinking he is so great. { we want him to keep

being so wonderful !! By the way, do you rent him out for tutorials? I've

got this guy I'd like him to meet...} I read that you have recently started

on FLOVENT . It has been a life saver for my son. He has acute asthma and

was using the nebulizer machine 4 times a day. His new doc started him on

Flovent a year ago in July. He rarely uses his inhaler, less than once a

month and uses his machine only when sick,{ he had two ear infections last

year and that seems to trigger his asthma { ????}} at any rate, his quality

of life has improved so much using his Flovent we are amazed. He has only

been on steroids twice this year, { dang, we could have been the prednisone

family!} and has just bee n almost a normal kid. Please, I do caution you

though , that even if you haven't used a regular inhaler in awhile because

the flovent is helping, do not stop carrying it!!! Flovent will not help

you in a breathing crisis and it is so easy to get cocky and think you can

leave the other inhaler at home.

Welcome. sorry you are here, sorry we are here, thrilled everyone is here,

you know..... If you ever need a wise guy with a warped sense of humor,

drop me a line. I am here in good ol'Massachusetts lookin fer someone to

bug.

[Guest guest]

Hi Vivian,

First off lets talk directly to you before that ol'husband of yours gets a

swelled head for all of us thinking he is so great. { we want him to keep

being so wonderful !! By the way, do you rent him out for tutorials? I've

got this guy I'd like him to meet...} I read that you have recently started

on FLOVENT . It has been a life saver for my son. He has acute asthma and

was using the nebulizer machine 4 times a day. His new doc started him on

Flovent a year ago in July. He rarely uses his inhaler, less than once a

month and uses his machine only when sick,{ he had two ear infections last

year and that seems to trigger his asthma { ????}} at any rate, his quality

of life has improved so much using his Flovent we are amazed. He has only

been on steroids twice this year, { dang, we could have been the prednisone

family!} and has just bee n almost a normal kid. Please, I do caution you

though , that even if you haven't used a regular inhaler in awhile because

the flovent is helping, do not stop carrying it!!! Flovent will not help

you in a breathing crisis and it is so easy to get cocky and think you can

leave the other inhaler at home.

Welcome. sorry you are here, sorry we are here, thrilled everyone is here,

you know..... If you ever need a wise guy with a warped sense of humor,

drop me a line. I am here in good ol'Massachusetts lookin fer someone to

bug.

[Guest guest]

Dear Bob and Vivian,

I am so glad Vivian is doing better. Unfortunately a lot of the meds cause

stool problems. I have generally had the opposite problem. Thanks for

keeping us updated.

jatw@...

[Guest guest]

Dear Bob and Vivian,

I am so glad Vivian is doing better. Unfortunately a lot of the meds cause

stool problems. I have generally had the opposite problem. Thanks for

keeping us updated.

jatw@...

[Guest guest]

Missy,

I'll give you my thoughts on this based upon what we experienced with

Jordan. According to Dr. Bach, the night sweats are a part of SMA.

Jordan always had a sweating problem at night, but we could never figure

out what it was. He also did not sleep well at night most of the time,

and was up frequently. Since he cannot roll himself over in bed to

reposition we were up several times each night with him. The frequent

awakenings meant that he did not often go into the REM stage, and I'm

guessing that when he did he probably had an apnea episode that woke him

up. We never did many sleep studies to verify that, but it was pretty

evident, especially since we recently noticed that his pulse ox would

drop at times during the night. This went on for probably 4-5 years,

got progressively worse, and we finally resolved ourselves to the fact

that he needed some BiPAP breathing assistance at night. Jordan was

very much against it, wanted nothing to do with it, so we compromised

with him by agreeing to use it only when he had a cold or something that

caused him to really need it. 3 months ago we got him a BiPAP, and he

used it most nights over the course of the first couple weeks he had it

to get use to it. Now doesn't want to sleep without it. He sleeps a

lot better, wakes up less frequently, is much more rested in the

morning, no longer has morning headaches, and no longer has night

sweats. He's figured out on his own that he needs the breathing support

at night. I guess what I'm saying is that he wasn't getting the

necessary oxygen because our respiratory function slows down at night.

Already compromised breathing is more impacted by the reduced

respiratory function at night.

Jordan is 15 now, but I wish we had pursued a BiPAP machine several

years ago because it would have helped him...But, we really tried to

avoid it since we didn't want him to need another piece of equipment.

Hind site is always 20-20. I'm not saying Ian needs a BiPAP machine,

but if I were to guess I would say the heavy breathing and night sweats

are related to lack of oxygen.

Jay

Breathing problems

Ian is having a slight problem breathing at night. Its a heavier

breathing and he sweats some at night. Also he is having difficulty

in pt or at home if he gets to active. He sees the pulm in the

first part of feb., but if anyone has any ideas what may being going

on I would appreciate your ideas.

He is not getting a good sleep at night either, and believe me was

miserable this morning!!! I just would like to know what might be

going on before I get there. If its anything bad then it might help

the heartache some to know in adavance what we are dealing with

maybe. Thank you

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[Guest guest]

In a message dated 1/20/2005 8:40:31 AM Eastern Standard Time,

ianpaul2@... writes:

Ian is having a slight problem breathing at night. Its a heavier

breathing and he sweats some at night. Also he is having difficulty

in pt or at home if he gets to active. He sees the pulm in the

first part of feb., but if anyone has any ideas what may being going

on I would appreciate your ideas.

He is not getting a good sleep at night either, and believe me was

miserable this morning!!! I just would like to know what might be

going on before I get there. If its anything bad then it might help

the heartache some to know in adavance what we are dealing with

maybe.

You might want to consider talking to the pulmo about having Ian use a BiPap,

especially at night. Typically for SMAers, breathing becomes more labored at

night due to the body being in a resting state, causing the individual to work

harder at breathing without ever realizing it. As a result, exhaustion is a

big factor throughout the day, which can impact many areas of life.

I, a few years ago, just felt really run down. My docs did an overnight

pulse-ox study, and eventually a sleep study. I have since been using BiPap

overnight, and my sleep and health have been soooooo much better.

Amy M. Marquez (Ames)

McHenry, Illinois

[Guest guest]

Missy,

Iam prolly need some sort of ventilation at night. I was having high CO2

levels when I slept b/c I couldnt expell the gas aduquately. Maybe a sleep

study

is needed.

Kimi

[Guest guest]

Missy,

There are machines like BIPAP, CPAP, vents, etc. Most are thru masks you

wear and air is forced in. it takes some time to get used to, but its poss. i

was on bipap at nights since i was little. now i'm trached and vented but that

was b/c of major sickness and surgery in college. getting a PFT and sleep

study can help drs adequately ventilate him.

Kimi