RE: Stridor and Inverting

October 13, 2002

When you say inverting do you mean a pulling in of the tissue between the

ribs or below the sternum? This is typically a sign of respiratory

distress. How fast is he breathing when this happens?

Is the stridor worse with feeding? Tube or otherwise?

How do you feel about it? I would trust your instincts.

Since our kids could be considered " sick " every day of their lives, we must

balance what we can deal with at home and what we need help with. Initially

it takes awhile to figure out that balance. You may have a few times you go

in to have him checked and come back home, but that is helping you learn his

signals and when it is a cause for concern, so never feel bad about going in

for a " false alarm " .

Good luck.

Kim

----------

>

>To: CHARGE

>Subject: Stridor and Inverting

>Date: Sat, Oct 12, 2002, 5:11 PM

>

> 's stridor seems to be getting worse the last couple of days and

> he's now inverting on every breath. It makes him cry and seems to

> make it worse. We went to the emergency room last week and by the

> time he got there, he was okay, but still inverting with stridor.

> Sats were 100. Should we put of with this? Anyone experienced with

> this?

>

> Thanks,

> Bo

> 10 weeks CHARGE.

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

October 13, 2002

When you say inverting do you mean a pulling in of the tissue between the

ribs or below the sternum? This is typically a sign of respiratory

distress. How fast is he breathing when this happens?

Is the stridor worse with feeding? Tube or otherwise?

How do you feel about it? I would trust your instincts.

Since our kids could be considered " sick " every day of their lives, we must

balance what we can deal with at home and what we need help with. Initially

it takes awhile to figure out that balance. You may have a few times you go

in to have him checked and come back home, but that is helping you learn his

signals and when it is a cause for concern, so never feel bad about going in

for a " false alarm " .

Good luck.

Kim

----------

>

>To: CHARGE

>Subject: Stridor and Inverting

>Date: Sat, Oct 12, 2002, 5:11 PM

>

> 's stridor seems to be getting worse the last couple of days and

> he's now inverting on every breath. It makes him cry and seems to

> make it worse. We went to the emergency room last week and by the

> time he got there, he was okay, but still inverting with stridor.

> Sats were 100. Should we put of with this? Anyone experienced with

> this?

>

> Thanks,

> Bo

> 10 weeks CHARGE.

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

October 13, 2002

When you say inverting do you mean a pulling in of the tissue between the

ribs or below the sternum? This is typically a sign of respiratory

distress. How fast is he breathing when this happens?

Is the stridor worse with feeding? Tube or otherwise?

How do you feel about it? I would trust your instincts.

Since our kids could be considered " sick " every day of their lives, we must

balance what we can deal with at home and what we need help with. Initially

it takes awhile to figure out that balance. You may have a few times you go

in to have him checked and come back home, but that is helping you learn his

signals and when it is a cause for concern, so never feel bad about going in

for a " false alarm " .

Good luck.

Kim

----------

>

>To: CHARGE

>Subject: Stridor and Inverting

>Date: Sat, Oct 12, 2002, 5:11 PM

>

> 's stridor seems to be getting worse the last couple of days and

> he's now inverting on every breath. It makes him cry and seems to

> make it worse. We went to the emergency room last week and by the

> time he got there, he was okay, but still inverting with stridor.

> Sats were 100. Should we put of with this? Anyone experienced with

> this?

>

> Thanks,

> Bo

> 10 weeks CHARGE.

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

October 13, 2002

come to the chat room......

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

October 13, 2002

come to the chat room......

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

October 13, 2002

I don't have the link anymore and my link from this page won't work. Can you

give it to me?

Re: Re: Stridor and Inverting

come to the chat room......

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

October 13, 2002

I don't have the link anymore and my link from this page won't work. Can you

give it to me?

Re: Re: Stridor and Inverting

come to the chat room......

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

October 13, 2002

I don't have the link anymore and my link from this page won't work. Can you

give it to me?

Re: Re: Stridor and Inverting

come to the chat room......

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

October 13, 2002

He finally fell asleep after honking and wheezing until he was so pale and

week he couldn't do it anymore. We almost took him in, but I knew they would

probably intubate him if it was bad enough. Watching him overnight wouldn't

be bad, but then again. there we are back in the NICU.

By inverting, I mean that the tissue under the sternum sucks in when he

breaths. He's been doing that more and more lately and making more noise at

home. I'm wondering if it's a problem that is going to get to a point where

we have to fix it. I guess it might be a narrowing of the passage from

scarring or something.

I still can't get into the chat room.

Stridor and Inverting

>Date: Sat, Oct 12, 2002, 5:11 PM

>

> 's stridor seems to be getting worse the last couple of days and

> he's now inverting on every breath. It makes him cry and seems to

> make it worse. We went to the emergency room last week and by the

> time he got there, he was okay, but still inverting with stridor.

> Sats were 100. Should we put of with this? Anyone experienced with

> this?

>

> Thanks,

> Bo

> 10 weeks CHARGE.

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

October 13, 2002

He finally fell asleep after honking and wheezing until he was so pale and

week he couldn't do it anymore. We almost took him in, but I knew they would

probably intubate him if it was bad enough. Watching him overnight wouldn't

be bad, but then again. there we are back in the NICU.

By inverting, I mean that the tissue under the sternum sucks in when he

breaths. He's been doing that more and more lately and making more noise at

home. I'm wondering if it's a problem that is going to get to a point where

we have to fix it. I guess it might be a narrowing of the passage from

scarring or something.

I still can't get into the chat room.

Stridor and Inverting

>Date: Sat, Oct 12, 2002, 5:11 PM

>

> 's stridor seems to be getting worse the last couple of days and

> he's now inverting on every breath. It makes him cry and seems to

> make it worse. We went to the emergency room last week and by the

> time he got there, he was okay, but still inverting with stridor.

> Sats were 100. Should we put of with this? Anyone experienced with

> this?

>

> Thanks,

> Bo

> 10 weeks CHARGE.

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

October 13, 2002

hold on I will send you th elink

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

October 13, 2002

hold on I will send you th elink

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

October 13, 2002

hold on I will send you th elink

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

October 13, 2002

Hope your son is feeling better, our daughter

experienced alot of what you are explaining and is was

diagnosed as asthma and once she had the right

treatment it became under control. She was

particularly bad at night. But now at age 3 she only

usually has one bout of this a year.

Hope this info helps.

--- Bo wrote:

<HR>

<tt>

He finally fell asleep after honking and wheezing

until he was so pale and

week he couldn't do it anymore. We almost took him in,

but I knew they would

probably intubate him if it was bad enough. Watching

him overnight wouldn't

be bad, but then again. there we are back in the

NICU.

By inverting, I mean that the tissue under the sternum

sucks in when he

breaths. He's been doing that more and more lately and

making more noise at

home. I'm wondering if it's a problem that is going to

get to a point where

we have to fix it. I guess it might be a narrowing of

the passage from

scarring or something.

I still can't get into the chat room.

Stridor and Inverting

& gt;Date: Sat, Oct 12, 2002, 5:11 PM

& gt;

& gt; 's stridor seems to be getting worse the last

couple of days and

& gt; he's now inverting on every breath. It makes him

cry and seems to

& gt; make it worse. We went to the emergency room last

week and by the

& gt; time he got there, he was okay, but still

inverting with stridor.

& gt; Sats were 100. Should we put of with this? Anyone

experienced with

& gt; this?

& gt;

& gt; Thanks,

& gt; Bo

& gt; 10 weeks CHARGE.

& gt;

& gt; Membership of this email support groups does not

constitute membership in

& gt; the CHARGE Syndrome Foundation.

& gt; For information about the CHARGE Syndrome

& gt; Foundation or to become a member (and get the

newsletter)

& gt; please contact marion@... or

visit

& gt; the CHARGE Syndrome Foundation web page

& gt; at <a

href= " http://www.chargesyndrome.org " >http://www.chargesyndrome.org</a>

& gt; 6th International CHARGE Syndrome Conference,

Cleveland, Ohio,

& gt; July 25-27, 2003. Information will be available

at our website

& gt; www.chargesyndrome.org or by calling

1-.

& gt;

& gt;

October 13, 2002

YIKES

This child sounds like he is in respiratory distress. I

would not hold off on getting him medical attention. Not getting adequate

ventilation can lead to numerous problems. I was told when Mark was an infant

to watch for the sign on inverted chest it is called retraction and get him

help if I saw this starting. Do you have a home care nurse?

October 13, 2002

Bo,

When Bryce was little (under 2) , he had terrrible breathing. The

striderous breathing was common and so was the inverting ( although we called

it retracting.) We got so we could tell when it was bad enough to go to the

hospital but at first we didn't know. The problem was if you had to take him

to the ER, the ER docs always panicked because his breathing looked so bad.

By the time they were finished with poking and proding, he was REALLY in

respiratory distress and we would end up in the PICU. One thing we did was

have our pediatrician call ahead to the ER and tell them that Bryce's

baseline breathing was horrible so do not panic.

Bryce had a combination of respiratory problems but the one that got

overlooked for 2 1/2 years was his tonsils. The docs disagreed about taking

them out because he had already been through soooo much. But when they

fianlly did, they were so large that they realized that they had been a big

factor in his respiratory distress. He catapulted after that from a baby who

labored for every breath to a pretty healthy one. Anyone, one more thing to

look into.

Laryngal and tracheal malasia are also common CHARGE problems that

afffect breathing and they just have to grow out of that. The other issue for

Bryce was reflux which is also common with CHARGE. That can be surgically

corrected with a nissan but it is a major surgery and you don't want to rush

into that. But it helped Bryce's breathing a lot and I wish we had done thta

sooner too.

The early years are so hard. Hang in there. It gets so much better after the

sick years.

Deedee, Mom to Bryce, now a good breather

October 13, 2002

Bo,

Also Nebulizer treatments with Albuterol helped as well. You are not a

failure for taking your son to the emergency room! These kids are so

complicated they throw most of the docs for a loop.

Deedee

October 13, 2002

,

My son Mark had a TEF repair also. One of the reasons that I

responded to you because I can remember this happening to us also when Mark

was small. It can be caused from aspiration pneumonia's which my Mark had

several very severe ones. I am thinking of you please keep me posted on how

things are going for you.

October 13, 2002

Hi - this is , 's mom. We do have a home nurse but I have not

been able to get a hold of her this morning. I called 's doctor about 15

minutes ago, and if we don't get a call back in the next 30 minutes, I guess

it's time for the ER again. We just hesitate to do it since he has had noisy

breathing ever since he had the TEF repair and trying to determine when the

retracting started has become impossible for my husband and I.all the last

few days are a blur. I hate to bring him into the hospital, it feels like a

failure on our part. But obviously we need to do what's best for . He is

resting quietly (except for the breathing!) so I am going to wait a half

hour and then go.better safe than sorry they say.

Your message kind of jolted me back into reality this morning, thanks.

Re: Stridor and Inverting

YIKES

This child sounds like he is in respiratory distress. I

would not hold off on getting him medical attention. Not getting adequate

ventilation can lead to numerous problems. I was told when Mark was an

infant

to watch for the sign on inverted chest it is called retraction and get him

help if I saw this starting. Do you have a home care nurse?

October 13, 2002

Hi Bo and -

I am hoping that by the time you are reading this that you are safe and

happy and that is breathing comfortably.

I just wanted to chime in with everyone else about the possible causes-

's respiratory system was his Achilles heel for the first four years of

his life. In the end - all the contributing factors were:

(1) Stricturing of the tracheal scar tissue post TEF/EA repair, which even

with a tracheotomy would cause him to go completely blue depending on his

head position

(2) Aspiration and aspiration pneumonia from poor swallowing coordination

and esophageal stricturing post TEF/EA repair

(3) Reflux, which in addition to all the GI distress also silently

aspirated these acidic stomach contents, which then mimicked asthma. His

reflux didn't even seem like 'reflux' at first - more like an open carafe.

All I had to do was tilt his head lower than his torso and his stomach

contents would come running out his nose - and we saw the same thing you

mentioned - if the bolus was let to gravity feed too quickly, it would erupt

out his mouth-

We also did the same thing did - whenever was exhausting himself

with breathing (retracting), we would let the oxygen blow by until his

breathing could relax, and would leave it on that level while he slept.

We went through alot of months of upper respiratory infections, sometimes

back to back - alot of mucolyctics, expectorants, decongestants, nebulizer

treatments, oxygen, suctioning, percussive chest therapy and antibiotics.

He was only hospitalized one time for pneumonia when he was three. It was

the scariest thing - admitting him. I felt like I had somehow failed. It

was the nicest five days of that year. We were in the hospital simply to

get better - not to discover anything new, and there was no rollercoaster -

just oxygen, IV antibiotics, and alot of pediatric professionals

complimenting us on 's care and development. It was only then that I

realized how the NICU experience had a tremendous level of trauma to

it.......

We are all rooting for your family here -

take good care,

best always,

Yuka

October 13, 2002

I have to add another thing about the hospital and these kids ...I don't

know about anyone else but I bet others have had this problem

to.....You get so sick and tired of being there being scared (I almost

throw up every time I hear any thing that sounds like the pulse ox that

are in the picu we go to) you get so tired of it you get so you refuse

to accept the fact your child needs to go I have been know to get very

angry with some of the home care nurses (when say we are working on stay

#3 in less then a month)luckily my nurses know I don't mean it they have

never been wrong (well just once) and just tell me I have no choice

The rule at our house is when n doubt ship him out we have only been

sent home from the ER once............

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

October 13, 2002