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TOPIC TITLE: Aspiration Pneumonia
Created On 9/24/05 10:57 PM
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downsyndrome
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9/24/05 10:57 PM
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Our 2.5 year old daughter, who had a TE fistula repaired 3 days after birth, has been experiencing recurrent pneumonias, bronchitis and wheezing over the past 5 months. Several tests have been inconclusive and we are now strongly suspecting aspiration, either when she drinks thin liquids (because she coughs consistently when she swallows thin liquids), or perhaps acid reflux coming from her stomach up.
Does anybody have any experience with this issue? We are under the care of excellent (albeit not always available enough) specialists at Columbia Babies Hospital.
Thanking you kindly,
Sarah S.
 
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chanieF
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9/25/05 12:50 AM
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if not already doing so, then for the latter scenario-i'd see a pediatric gastro and pulmonologist (check for scarring in the lungs from acid). Q to consider-any discolored teeth? as this may lead to evidence for reflux.
 
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downsyndrome
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9/25/05 10:30 AM
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Yes, she is under the care of both and is on a daily dose of Prevacid. She is also on inhaled steroids. We just did a swallow study on her this past Tuesday, with inconclusive results. The recommendation was for an in-depth gastro-study, possibly with a probe in her nose and tummy to monitor all internal activity. We are now waiting for our gastro specialist to return from out of town.
 
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hb
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10/6/05 3:23 PM
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Hi, sorry you're experiencing this... we've been there, both with apiration while swallowing and with reflux.
If the barium swallow is inconclusive you might benefit from a FEEST study, not all hospitals have it but Babies Hosp. does. They do it through ENT. A feest study is a much more acurate swallow study than a barium swallow and they can work with diff. textures to find one that works for him/her.
Many times it's the reflux that causes aspiration, which Prevacid may not be enough... Guess you're on the right track if you're scheduling a PH probe.
You can email to me privately if you want more information. I have some more ideas which have worked for us.
good luck
 
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downsyndrome
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12/7/05 9:47 AM
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My daughter had the FEEST test done two weeks ago; there was a little separation between her vocal cords, but the doctors dismissed it as not important enough to be causing all her problems. She has again had a very bad bout of bronchitis w/wheezing. She was on oral steroids for 22 days (versus the five days which is the standard treatment), on three different inhaled steroids several times per day, and she is still wheezing and 'crackling' in her chest. The G.I. and pulmonologist have scheduled a bronchoscopy and an endoscopy for next Wednesday Im Yirtzeh Hashem. May they be the right messengers to help my little princess who is looking like Humpty Dumpty these days from all the cortisone she's on.
 
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sarahny
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12/27/05 2:28 PM
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Dear Sarah

My 5 year old daughter was also born with TE fistula and had surgery a day after. She also kept getting phnemonias very often, weezing, bronchitis.We tried all diffrent things,until we Baruch Hashem found a great doctor/Pulmonary his name is Dr Melons located at Presybeterian hospital in Manhattan.
We also did many tests including the Barium Swallow,we found that she had aspiration.When she drank liqiud,could be it went down to fast causing her to cough,and she kept weezing,getting bronchits and phnemonias.So the doctor had her drink from straws only,and when she was younger,she could only drink her bottles sitting up not lying down.They usually outgrow this.About the reflux most of these type of kids are born with it.Baruch Hashem my daughter is doing much better.
Feel free to contact me at any time throug email or phone 347 623-9130

GOOD LUCK!
Sarah


-------------------------
s grunfeld

Edited: 12/27/05 at 2:37 PM by sarahny
 
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downsyndrome
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12/27/05 10:28 PM
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Hi Sarah! You should be ge'bentsched! I was just going to start a new thread titled 'TE Fistula', but then I saw your post. Finally, I'm finding somebody whose child had the same 'fun' start in life.
We have become Dr. Bye's patient. He is also on the same team as Dr. Melons at Columbia Babies Hospital. In fact, two weeks ago Wednesday my daughter underwent a bronchoscopy and an endoscopy, by her pulmonologist and gastroenterologist, respectively. They were both in the O.R. and really wanted to figure out what is going on with my little girl. Well, it's not great, but sometimes not such good news is better than living with a mystery. Dr. Bye found that my Chana'la's trachea is so narrow and flattened beneath her surgical repair site, that he described it as a pancake. That explains a lot of her problems - the air is struggling to move up and down her airways. It is surprising that she looks so healthy KA'H, in spite of this. Her oxygen saturation is at 100% B'H, unless she gets really very, very ill. She eats well, is chubby, has good color, and is a beautiful and very bright child KA"H. Dr. Bye told us that there is a surgery to correct this situation, but our daughter is 'not sick enough' to warrant it. He claims she will outgrow this; she needs time and we need to be patient and to try to keep her as healthy as possible. She is also refluxing, aspirating, and we are still going for more testing because she coughs and chokes every time she swallows thin liquids, i.e. water. So, here we have this great looking kid who is taking more medications than a pharmacy shelf can hold, recently took what-was-supposed-to-be-a-five-day-course of oral steroids for 22 days, is now having a terrible setback again and is again on oral steroids in addition to her inhaled steroids, Nystatin - 'cuz the steroids are causing an overgrowth of yeast and when she had her endoscopy the doctor showed us on photos that he took in the O.R. that her esophagus was covered with white candida, reflux meds, stomach inflammation meds, etc.
INterestingly, you write that your daughter was only allowed to drink with a straw and she had to have her bottles sitting up! How different than what we are having! The only time my daughter does not cough is when she drinks her bottle lying down. The doctors are baffled! She does cough when she drinks with a straw. Dr. LEvy, her gastro at Columbia, who is sending us for this detailed FEEST and swallow test told me that sometimes just by shifting a person's head in a certain direction, they can redirect the flow of liquid going down and it sometimes helps avoid all these problems. That is why he is sending us for this test; a group of speech and swallow therapists will be present and hopefully as a team they will be able to come up with something...
Where did your daughter have her repair? Did she have any other medical issues?
I am so glad I have finally found a comrade! Be ge'bentsched!
Sarah
 
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