|Sep 18, 2008|
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Question about AspirationQuinn's respiratory has been off for quite some time. I can't get what the ENT said out of my head. He said that she is likely micro aspirating... particularly on her secretions at night. I asked him why he thought that and he said because of what I was describing to him, how she wakes up every morning almost like she is sick but then she is fine by the end of the day with no fever (of course she really has been a bit sick the past two weeks but we are thinking farther back than that even) And how often she has been getting some sort of respiratory gunk. I wonder... this seems to have been coming on at the same time I started to feed her more orally. could it be that? She does have dysphagia, central hypotonia and such. She has history of aspiration pneumonia, but you would think, if she were aspirating, wouldn't she get pneumonia? Should this warrant me to cut back on the oral feeds and start doing more tube feedings? To protect her lungs? Or should I just wait it out and see how she does a little bit longer? I do fear the winter, being that she has already been sick with something respiratory twice in the past month or two. What do ya'll think? -Sarah
|Sep 18, 2008|
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
|Is her Nissen undone??? I would think that would keep the secretions our of her lungs..HHMMMM *thinking*|
There would be no way to tell about that from a MBSS either....
As a side note, have you ever spoken to anyone about doing VitalStim on her to strenghten those muscles to help with swallowing.
(txlinda) Linda at P2P her DS had it and it worked greatly for him. She was very pleased with it. We have asked about it for Jedd but he progressed very quikly to oral foods so thye didn't do any with us.
|Sep 18, 2008|
Mathias Johann - 12/14/05 - GERD, Hypotonia, Sensory Processing Disorder, Dyspraxia; Stopped silently aspirating at 20 months :)
First partial seizure on 7/2; First Endoscopy on 7/16; results: bile reflux gastritis.
New Meds: Zegerid & Carafate
Allergic to dairy
I don't know the answers to most of your questions, but I wanted to say that Mathias silently aspirated for 8 months without us knowing and then continued to do it until he was 22 months old. He never got any kind of respiratory infection from it. So yes, it is possible to aspirate and never have pneumonia. We were able to see from the MBSS that Mathias was aspirating before during and after his swallow. His old ST was also able to confirm it from what she saw and heard. Libby|
|Sep 18, 2008|
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
|Sarah-Aidan woke up that way everyday until he had surgery and he was aspirating so I agree with the ENT it could be micro-aspiration. She still takes pulmicort right? That could be protecting her lungs from pneumonia. Aidan took Flovent until he had surgery in order to protect his lungs from the aspiration. I am not sure if you should back off oral feedings or not? I would ask GI. I am so glad to hear about the other positives in Quinn right now though including the good appts. I don't know if you saw my post below but can Quinn vomit past her fundo? I think Aidan did last night and it is freaking me out!|
|Sep 20, 2008|
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|Did they do any testing to confirm the aspiration. Quinn is just beautiful. I am glad that she has made such progress and is oral feeding. I agree u should ask the GI about it. Thinking a great deal about u. Hoping for the best always.||Check with your