Guest guest Posted October 13, 2002 Report Share Posted 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-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 come to the chat room...... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 come to the chat room...... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 hold on I will send you th elink http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 hold on I will send you th elink http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 hold on I will send you th elink http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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> <html><body> <tt> He finally fell asleep after honking and wheezing until he was so pale and<BR> week he couldn't do it anymore. We almost took him in, but I knew they would<BR> probably intubate him if it was bad enough. Watching him overnight wouldn't<BR> be bad, but then again. there we are back in the NICU.<BR> <BR> By inverting, I mean that the tissue under the sternum sucks in when he<BR> breaths. He's been doing that more and more lately and making more noise at<BR> home. I'm wondering if it's a problem that is going to get to a point where<BR> we have to fix it. I guess it might be a narrowing of the passage from<BR> scarring or something.<BR> <BR> I still can't get into the chat room.<BR> <BR> Stridor and Inverting<BR> & gt;Date: Sat, Oct 12, 2002, 5:11 PM<BR> & gt;<BR> <BR> & gt; 's stridor seems to be getting worse the last couple of days and<BR> & gt; he's now inverting on every breath. It makes him cry and seems to<BR> & gt; make it worse. We went to the emergency room last week and by the<BR> & gt; time he got there, he was okay, but still inverting with stridor.<BR> & gt; Sats were 100. Should we put of with this? Anyone experienced with<BR> & gt; this?<BR> & gt;<BR> & gt; Thanks,<BR> & gt; Bo <BR> & gt; 10 weeks CHARGE.<BR> & gt;<BR> & gt;<BR> & gt;<BR> & gt; Membership of this email support groups does not constitute membership in<BR> & gt; the CHARGE Syndrome Foundation.<BR> & gt; For information about the CHARGE Syndrome<BR> & gt; Foundation or to become a member (and get the newsletter)<BR> & gt; please contact marion@... or visit<BR> & gt; the CHARGE Syndrome Foundation web page<BR> & gt; at <a href= " http://www.chargesyndrome.org " >http://www.chargesyndrome.org</a><BR> & gt; 6th International CHARGE Syndrome Conference, Cleveland, Ohio,<BR> & gt; July 25-27, 2003. Information will be available at our website<BR> & gt; www.chargesyndrome.org or by calling 1-.<BR> & gt;<BR> & gt;<BR> & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 I agree with the nebulizer/albuterol treatments -- After our first wasted ER visit -- when the PA came to see her (not even a Dr!) she started breathing normal again. The next day I called our ped and he got our insurance to buy us the nebulizer. Anytime Jilly gets to having trouble breathing we just give her a treatment and everything opens up. This has saved us from numerous ER visits. Huggins Mom to Jillyan (16 mos) Re: Stridor and Inverting 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 this goes with learning to listen to your childs lung sounds and learning what is normal ........ http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 this goes with learning to listen to your childs lung sounds and learning what is normal ........ http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
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