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Sep 24, 2009
lovemypies
Kayt 10, Aubrey 5, Justin 2 and Jacob 4 months-Tracheomalacia, reflux, apnea and aspiration on swallowing.
questions about bronchoscopy and lipids...
does anyone know where exactly they do the wash and test for lipids? Is it down in the lungs, or just in the top part? Sorry, I don't lknow names for everything, just trying to sort things out in my head. The pulmonologist is saying he is reflux aspirating, and the gi argues saying there is no evidence of reflux on his scope. I am baffled. Could having laryngeal penetration cause his lipids to be higher without actually aspirating? The gi told me that the place they test is a couple centemeters from where the mouth is... whatever that means?
Sep 24, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
We've never had a bronch but you can do a swallow study to see if aspiration is occurring upon swallowing instead of reflux coming up and into the lungs.

That would be a good idea to do if they are pushing for a Nissen at this point or will be thinking about one after the bronch. JMHO. A nissen will stop reflux from coming up and going into the lungs but it will do nothing to stop an incoordinated swallow from cause liquids to go into the lungs on the way down.

Sep 24, 2009
mommato3
My son had a bronchoscopy done with a lung wash. Aspiration settles in the lower lobes. They washed only one of his lungs and sucked the fluid back up. Yes, the presence of lipids in the lungs means that aspiration has taken place. Kids can penetrate without it going into the lungs as well. That is when they usually cough. My son does this quite often. It can even irritate the bronchials, etc. quite badly. I agree with the swallow study. It will show aspiration of the swallow. Was he on medication when they did the scope, if so just b/c he didn't have damage doesn't mean he doesn't have reflux. You need a ph probe (done off meds) or an impedance probe (done on meds) to see about the reflux. We did an impedance probe on meds. The impedance measures acidic and non acidic reflux and ph probe measures acidic only reflux. It shows how hish it comes how often, etc. Has your child had the bronch done? What is the pulmonoligist saying to you about the lipids? Have they done a swallow study yet or a probe? If not that is the next step I would take. But if lipids were present in the lung wash that is done acutally in the lungs.
Sep 25, 2009
lovemypies
Kayt 10, Aubrey 5, Justin 2 and Jacob 4 months-Tracheomalacia, reflux, apnea and aspiration on swallowing.
He has had 3 swallow tests, the first two showed frank aspiration and the third just 2 weeks ago showed laryngeal penetrations/flashing. He had the bronch last week and his lipid count was 106. He had a ph probe done 3 mo ago after being off zantac for 3 days, they said it was normal.
Sep 25, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
so, it sounds like he is aspirating from above. Just FYI a Nissen (fundo) will not stop aspirations from a swallow. You're options would be to thicken feeds or even go on tube feeds and work on oral motor control while swallowing.

I'm sorry. Can you do a Impendance Probe instead of a PH probe. JMHO but the Impendance is more accurate as it measure both acidic and non acidid reflux.

Sep 25, 2009
mommato3
i agree with Jedds mommy. If the swallow studies showed him aspirating on the swallow then that is prob what is happening. Did they try all three consistencies on his swallow study (thin, nectar, and honey). Some kids don't aspirate the thicker stuff. I would try an impedance probe too though. It is the "gold standard". Yes, the lipid count and bronch is what is actually in his lungs. You can have penetration without aspiration into the lungs though but the bronch shows true aspiration. Have they ever done a CT scan or anything to check for lung damage? What are they trying to get you to do? Are they recommending a nissen? Tube feeds? A nissen won't help aspirating from above. Why does the pulmonologist think it is reflux if he clearly aspirates on his swallow on the swallow study? I would try to get into early intervention. You really need a speech pathalogist (that specializes in feeding-very important) to evaluate thing. I am sorry you are going through this.
Sep 26, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
You can also get an O.T. though early intervention as well. That's what we got for Jedd. You need to make sure that if you get an ST or on OT that either one has the ability to work with feeding aversion/aspiration risk kids. This would be a MUST in your case since aspirations are occurring upon swallowing.

There is also a therapy called Vital Stim the ST or OT needs to be certified to do this therapy but it has had some good results for others I know online.

If you google it you will find all sorts of info about it.

Sep 26, 2009
lovemypies
Kayt 10, Aubrey 5, Justin 2 and Jacob 4 months-Tracheomalacia, reflux, apnea and aspiration on swallowing.
We know that at one time he was aspirating from above, and probablt still does. The reason they are questioning it all is BC his lipid number came out SOO hight that they think it could not possibly be that hight from just once a day nursing and everything else thickened. Now they have me thickening everything and only dry nursing so he doesnt forget how. The plan is to go back to breastfeeding when he passes the swallow test. They did do all 3 consistancies... he is on one packet nectar to 6 oz breastmilk right now. I asked the apnea/pulm nurse about the inpendance probe and she did not know what is was but was going to ask the gi. They called today and said they want to do another bronch 1 month from when I completly stopped nursing him... which will be about 2 weeks from now. I have an apt with early intervention on Thursday. I just dont get it.. to look at him you would NEVER guess he was sick or is sick, he doesnt cough, gag, throw up... nuthin.. he is a fat lil 18 lb 4 month old! I want sooooooo badly just to nurse him like I did my other 3 kids... and just go back to normal around here.. all this pumping sucks.... but I am NOT willing to give him formula... I want this to end soon so we can nurse!!!
Sep 26, 2009
lovemypies
Kayt 10, Aubrey 5, Justin 2 and Jacob 4 months-Tracheomalacia, reflux, apnea and aspiration on swallowing.
oh, and the only ct he had was at 6 days old, when this all startd... and it was normal.. but it was just a head ct. His bronch did not show any damage.. just the lipids.
Sep 26, 2009
mommato3
I am so sorry you are having to go through this. I have three kids myself, two of which were perfectly healthy nursing little babes. It was very hard not to be able to nurse this one. He was also born with a recessed jaw and high arched palate that along with low muscle tone he was unable to extract milk from even a bottle much less the breast. Pumping was hard and is not the same. Big hugs to you. My son's bronch showed minimal aspiration. His swallow studies looked pretty good but we were told to thicken the same as you one nectar to 6 oz. He did have some delayed swallow I think the diagnosis said dysphangia of the pharageal phase of the swallow. I am not sure. Since his bronch though he has had several choking episodes some on his reflux ( It is obvious. You hear him reflux and then he chokes) and some with food in his mouth. We have had several rounds of antibiotics (Azythromycin) and breathing treatment. Now by looking at my son you would think there were no problems. He is a cutie pie. He may be a little skinny b/c he is so tall. He does have a cough some. Our first GI wanted to a nissen our second opinion GI wants to wait it out until he is at least 2 as long as we don't have any pneumonias. It can be pretty tricky figuring out if it is coming from above or below or both. The tests are just a "snap shot of a time". Not all hospitals do impedance probes. It is new technology but very well worth finding someone who does. My son had his impedance done at Cincinatti Children's hospital. It was done on Prevacid and showed 202 episodes of reflux only 2 or 3 episodes were acidic. 98 of the episodes were full esophagul episodes which meant that it came all the way back up his throat. But you see the PH probe even done off meds would only pick up nonacidic. Some kiddos can have even off meds lots of nonacidic reflux. I too have heard good things about Vital Stim. Keep us updated.
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