Reflux?

[Whitney]

I was wondering if any of you have ever had a discussion with the doctors about Laryngopharyngeal reflux (differs from gastroesophageal reflux). Aidan's gagging is coming back and has been pretty bad for about the last month. At a recent allergist appt, the doc mentioned gustatory rhinitis as he witnessed Aidan's gagging and retching response to his tube feed. Aidan's nose runs and he gets real phlegmy sounding too. Over the years, Aidan has been "worked up" for GERD and we were told he did not have GERD. He has never vomited despite all his gagging. He did not have any s/s of esophagitis either. There were other reasons we were told he did not have GERD. In light of the recurrence of his symptoms, I have made another appt with a differ GI doc and started reading last night about gustatory rhinitis. I found info about nonallergic rhinitis and stumbled upon Laryngopharyngeal reflux. Some of the symptoms sound very similar to Aidan (hypersalivation, chronic cough, hoarseness, choking sensation-gagging perhaps). These symptoms can be explained despite his lack of s/s for GERD specifically. Finally, Aidan's swallow study in June showed he had abnormal glottic/epiglottic function, but he did protect his airway. I am curious if this has any relation to potential long-term reflux exposure affecting the tissues. Who knows. Finally, we are less than satisfied with the "I don't know" explanation for all of Aidan's esophageal polyps. This new GI doc specializes in polyps and I am wanting some real answers. I want our ENT to do a laryngoscopy on Aidan too to check for signs of Laryngopharyngeal reflux... I guess this is part update and part curiosity to see if any of you have ever discussed this with your docs and what experiences you may have with it....
The irritating thing is Aidan has been “treated” as much as I am aware of. We have tried lots of meds and he has had 3 nissen surgeries. We will not consent to another nissen (over my dead body)!!!!!

[Mom2TwinsPlus1]

I am probably not much help, but my friend had LPRD as a result of her chemo, it made it VERY difficult for her to eat anything at all. They ended up putting on her on some high doses of acid reducers and contemplated surgery to try to correct the upper muscle in the esphogaus but the acid reducers helped so they avoided surgery. She passed away in 2005 so I am not able to ask her what type of surgery or meds she was on specifically but I will give a shout out to her daughter

[lovemymak]

Wow Whitney! I was just about to ask if he had a nissen, but 3 times??? Wowsers! Keturah has had hers done twice, and I have always thought that all the gagging, wretching, and saliva were due to the nissen itself. Is Aidan's current nissen still intact? Does Aidan eat by mouth as well as tube feeds? If he does, is there a difference in how he reacts to tube feeds vs oral feeds? If he nissen is still intact, and he's doing tube feeds, then is it possible to have LPRD? Is it possible to have LPRD without GERD? From the sounds of it, the difference is that the LPRD goes higher in the esophagus and to the back of the throat. I hope the new GI Dr. will be able to help you get this figured out. I know how horrible that can be for both baby and mommy trying to help.

[WeAdoptKids]

I am of not help, just praying for a turn aound here fast for him. This is so hard when we know something is wrong, but powerless to stop it or fix it.

Keep us posted,
Roberta

[alizesmom]

No help from me either but sending hugs and prayers your way. Karen

[JWorthington]

Whitney - I'd never heard of that, but it sounds similar to what Sam does too. He coughs and gags, produces loads of saliva (which he then aspirates). I hope you can get some answers from the new doc. Let us know how it goes.

Love Juliex

[aydens mom]

My son retched on & off for 3 yrs (nissen at 3 mo.)hed retch for 3 mo straight & it would suddenly slow then stop,but for no longer than 1 1/2 mo.Zero signs of reflux,no explination.As soon as we would feed him through the GT he would instanly fill up with secretions,start coughing,talke deep breaths,glassy eyes & start retching,If he didnt lay completely still during a feed he would retch.It would get so bad we could only feed him 45 ccs every 1 1/2 hrs,pump at night(50 ccs hr) & he could not move for at least 30 min. after his 45 cc bolus.He was on Elecare formula(not milk or soy based,it is predigested amino-acid based so his tummy didnt have to work hard)The retching led to him getting a paraesophageal hirner(a third of him stomach is now in his chest)if the retching continues it will slip up further & eventualy suffocate him.So our surgons thought was to pull it out of his chest & unwrap his fundo(in hopes it was the fundo causing the retching).We scheduled the sugery,but if the retching doesnt stop after the surgery,it will just push through again or we could try a j-tube & continues feeds,but ayden is way to active for this.So before the surgery we took him to cincinnati for a 7th opinion(yes,i mean 7!!!)They gave me a recipe for a pureed food diet through the GT(at this time ayden was retching 20x per day)he never had real food before & within 3 days he was completely off formula & his pump at night & he has not retched in almost 6 mo. now!!!He eats 4 6oz feeds per day through the GT,he has even been sick & it still hasent returned! & we were able to cancle his surgery.Our life no longer revolves around him eating anymore,he has his life back,& i truly believe this diet saved his life.Him having a trach has never been the hard part for me,it WAS always the retching.I know how fustrating & heart wrentching it is watching your child go through this PM me if there is anything i can help you with! & do not give up untill you have answers!!!