Posted By Posting
Sep 23, 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+.
Aidan is refluxing again!
I knew this would be a possibility as the Nissen isn't a cure all but I certainly didn't expect to be where we were pre-Nissen just a few months later. Aidan seems to be refluxing all the time now and is coughing and choking on everything and won't touch food at all. I don't know if this is just related to illness as he is sick right now or if there is more going on. I just feel so frustrated and exhausted. I don't want to go down this road again but I know he is still in pain. I am kind of annoyed with the tubes too. I mean what was the point of putting tubes in if he still gets infections that aren't draining and the drops don't help and he still ends up getting antis for. Might as well of not done them. I just feel like we are missing something and I can't put my finger on it? I feel like I am being paranoid because I feel like this is all I think about. I don't really want to put him through a bunch of testing for them to say his Nissen is in tact and everything looks fine. Any ideas?
Sep 23, 2008
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
NPO tubefed continuous elecare 24 hours/day
(((HUGS))) Brent's fundo is intact, and he still refluxes.It started back immediately after the op, he never even went off medication for reflux. But his reflux is lessened some, and his resp complications from reflux are somewhat better as long as he is NPO(he aspirates during swallow). It's very common to still have some reflux, or even be able to vomit occasionally with the fundo. The fact that your child has DGE puts him at higher risk of having continued reflux even after fundo. I see his DGE isnt being treated with meds, maybe thats something to try if it continues. DGE causes reflux, as I am sure you know, so he still is going to feel sick and feel the urge to vomit, thats why generally, fundo isnt reccomended in kids with DGE, it can worsen things. It could definately be from him being sick though, it can cause reflux to worsen, even in a kid with a fundo. If he just started doing it, I would bet it is most likely because he is sick, so keep your fingers crossed. I wouldnt put him through any testing yet, wait and see if it continues after he is well.
Sep 23, 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+.
Well he had DGE as an infant and we did meds for almost a year but he seemed to outgrow his DGE and his GES before surgery was completely normal otherwise I never would have consented to surgery. I don't think it is the DGE but that is always a possibility. Luckily, he isn't really a vomiter. He has always been a silent refluxer so the Nissen was a god-send for a while. And he isn't turning blue and aspirating at least that I know of so it is still worth it. I think I am just having a sleep deprived woe is me kind of day. The exhaustion of dealing with sick kids all the time is getting to me.
Sep 23, 2008
Mom (Danie) to Adam (9-4-03) & Nate (3-7-07) Nate was diagnosed with silent AR at 2 months old. He was on neocate, prevacid 30mg per day and couldn't start solids till he was almost 8 months old. He started cow's milk at 14 months and is currently off all meds!! So far so good :) PIC: Disney trip 2008. Nate didn't know Piglet was there, he didn't like the characters too much.
Oh Mary. I wish I had some knowledge about the nissen but I know nothing about it. I am so sorry he is refluxing so badly right now. This ear tube thing would make me angry as well. I know Adam still got infections but only about 3. I wonder if they can some how drain his ears?? I know with me, the dr stuck this long skinny metal thing in my ear and pulled out all this "gunk". They did the same to Adam after his tubes, since he got 2 infections shortly after. All I know is that your boys go thru so much with the allergies and the AR. I hope you can get some rest today. Wish I lived closer...we could take turns with the kiddos while one of us sleeps :)
Sep 23, 2008
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
I don't have any advice I just wanted to offer HUGS. I can't imagine how frustrating this must be. I hope you can get it figured out for you and for him!
Sep 23, 2008
amber f
I don't have any advice either. I am thinking of you though. Wouldn't it be nice if we all lived on the same block. We could switch off watching each other's kids and the kiddos could all play with each other.
Sep 23, 2008
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
Don't have any advice; just wanted to offer you Hugs and say that i'm thinking of your family often. Love the site!
Sep 23, 2008
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
I'm so sorry. I really hope after the virus clears up things get better. we are thinking of you! ((Hugs))
Sep 24, 2008
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Don't know if I missed this info. on your son, but was he tested (endoscope w/biopsy) for e.e.? Eric was doing a lot of choking while eating/and sometimes drinking, which I thought was very odd. I pushed his GI into another endoscope (the last one about a year ago was ok) & sure enough he had about 36 eos. in his esophagus. We are headed for Phila. Children's Hosp. in Oct. Sorry to hear you are struggling with this. I know it's scary/sad. Ellen
Sep 24, 2008
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Sorry u r having such a hard time. I hope the reflux clears up soon. Have u tried any elimination diets or elemental formulas? What are the known allergens? Meggy might have the start of EGID, She has eosinophils in the stomach and intestines. AT John Hopkins, they seem to think everything is allergy related including her pain. This sure seems a better option than the things I have imagined.

Makes sense. Her symptoms match the Eosinophillic gastroenteritis.

Check with your
doctor first!