[FundoMoms] Reflux questions--guys I would like your input!

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Hey every one... need your input here, please read the entire post! See the questions this mom has at the bottom! Please let me know what you think Carolyn mom of Cameron... wishing you a Merry Christmas <momme@...> wrote: From: <momme@...>Subject: Re: [FundoMoms] Reflux questionsDate: Mon, 19 Dec 2005 10:58:17 -0700carolina moon <wooleeacre@...>Will is 4 yrs old and had his first Fundo when he was 7 months old. His Fundo is visibly intact it has just never worked right. He coughs at night a lot, but now we're not sure if it's reflux related or not (No reflux on the pH probe when he's laying down).I would not mind if you cross posted the note. I'll take information and advice from anyone who can

help. We are really lost right now. Especially anyone who has been repeat Fundos.Thank youOn Dec 16, 2005, at 12:59 AM, carolina moon wrote:> HI, sarah.. I am a lurker.> I saw your post and wanted to ask how old is will now? I was also > wondering if he coughs at night? The little sputter cough.. Does he > still have the fundo?> Sometimes as they grow they grow out of the fundo, and it gets too > tight. This may be what he is talking about. > I dont have a lot of experience from your point of view, I have a son > that has Achalasia, and his was the inability of swallowed food to > pass into the stomach, so he had an open myotomy and fundo.. (they > cut the lower esophagus muscle and then do a fundo as that muscle can > never close again)> But from that point our experiences are similar.> I would like permission to cross post your note, on our

achalasia > board. Alot of the folks there have had fundo's for 10-20 years... > There are just a couple of kids (moms)there, but it is a very active > group.> Please let me know if it is ok.> Thanks..> Who is your surgeon?> Carolyn in CA>> wrote:>> Hello all,>> I know a lot of us deal with reflux so i wanted to find out if anyone>> had any perspective on this. Will had a Nissen done when he was 7>> months old, it never worked for him. At the time we thought all his>> problems were from the reflux, since then we've figured out that's not>> true. We just had our follow-up with our GI for our most recent round>> of testing, and they are recommending repeating the Nissen. What i>> thought was interesting (and one of the things i need input on) is >> that>> Will only had like one

episode of reflux when he was lying down all of>> it was when he was upright. We were thinking (hoping) that part of>> Will's sleeping issues were related to the reflux and now we're back >> to>> square one on the sleep question.>> SO i guess questions are>> 1. Has anyone had it where there was more reflux when awake than when>> asleep? and what did your Drs make of it (our said it's significant >> but>> didn't say why)?>> 2. For those with Neuro symptoms how have your outcomes been? I know>> there is a higher failure rate with Neuro symptoms and since the first>> didn't work it's a little scary.>> 3. Has anyone been through a repeat Nissen and any hints/tips/concerns>> we should be thinking of since this will be a second one for us?>> ANy other info any one has would be great. We have a couple of weeks>> before we see the

surgeon so i know i'll be doing lots of research>> between now and then. But always like to start with the experts.>>>>>> J>> Colo>> Mom to Will (9/7/2001) Seizures, Migraines, Ataxia, Dysphagia,>> Broncho/laryngeal/tracheal malacia, Asthma/Reactive Airway, Reflux>> (despite Nissen Fundoplication), Delayed gastric emptying, Chronic>> Constipation, Hypotonic Trunk, Hypertonic Extremities, Food allergies>> (unknown to what), PDD-NOS. Suspected Mito/Metabolic issue, 2 negative>> muscle biopsies, really weird labs, Heat Intolerance, Autonomic>> Dysfunction, Behavior disorder, Sleep disorder, Probable Diabetes>> Insipidus, Possible CAPD, 24 hour O2, Increased CO (unknown reason),>> Major weight gain with decreased intake.>>>>>>>>>>