Posted By Posting
Jul 21, 2008
nicholas'smom
Baby with GERD and laryngomalacia
Hi all. I am new to this site. I have a 3 month old boy, Nicholas, who has GERD and moderate laryngomalacia (Sandifer's syndrome) We have been going through a barage of testing. Bronchoscopy, swallow test, etc. We are seeing a GI sepecialist tomorrow. We put him in a tucker sling this past week. My biggest concern at the moment is that they did a lavage during the bronchoscopy that showed he is aspirating some of his food. As he didn't aspirate during the swallow test, they feel he is aspirating when he refluxes. this means that if his prevacid is not working well enough, he could be getting acid into his lungs. I know they could do a PH probe to check acidity but at such a young age and already having gone under once, I am not anxious to repeat this and was wondering how else they can make sure he has adequate medication. Also, just looking for anyone else who may be in or has been in similar situation for some moral support and advice. Any recommendations welcomed. Thanks
Jul 21, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hi there. I don't really know much about these tests and what you are asking, but I did want to say 'Welcome' and send hugs to your little man. You will get some wonderful advice here. The moms have been my saving grace!
Jul 21, 2008
blueleopard
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.
I just wanted to say "hi" and even though I don't have any more advice about the testing, I did want to warn you that a milk allergy problem can sometimes cause or accompany GERD. If Mom or Dad of the baby or relatives on either side have asthma, allergies (even seasonal) or eczema it may increase this particular risk. We (and our son) went through about 17 mths. of hell before we figured it out. And, soy formula was no better. Neocate was the only thing that worked, in our case. Hope to see updates. Ellen
Jul 21, 2008
mom2coy
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.
Hi and Welcome. I'm surprised he's had that testing without seeing a GI first. you must have a very good Pedi. How is the tucker sling? Mine slept on me for 16 weeks and still does when he's teething or sick-which worsen his reflux. Otherwise he' s a tummy sleeper-far too active for the sling. so i hope it does wonders for you. many will have other suggestiosn as well.

As far as aspirating Jedd's mommy will probably have some more advice on this. Just my two cents but our GI-whom I love-said that the studies on "acid" in babies is inconclusive. that being said if he is taking some anti-acid med. appropriate to weight then it should be controlling the acid. has he had ALTEs? any pnuemonia? aspiration is a problem period-not just the acid. the acid is a concern for the esophagus..where do u live?
Jul 22, 2008
ceramom
Sarah
mom to Mila 2-20-2007
and Robby 4-22-2004
Mila is on Peptamen JR 30 cal by NG tube. Open Heart Surgery 2/08/08. Captopril, Zantac, Losec, Lasix.
The PH probe doesn't need him to go under. In fact, at 3 months, he'd scream a bit and then ignore it for the most part. My daughter has an NG tube for the last 6 months and its just become part of our life. I'm sorry he's aspirating on reflux. You might enquire about a medication to get the food out of his stomach faster so that he refluxes less.
Jul 22, 2008
emmakins
Wendy
daughter Emma born 7/25/07
i can relate to some of this. emma has/had laryngomalacia (she also has/had tracheomalcia). we had a bronchoscopy and swallow test at 3 months as well. we were directed to a pulmonologist rather than a GI because the malacias made her have severe stridor when she would breathe. we started with prevacid which did nothing for emma and switched to nexium and bethanecol (to help move things out of her stomach quicker). this worked for us and we never had aspirating problems.

did anything show up on the broncoscopy like a swollen airway or any breathing problems? if so i would recommend seeing a pulmonologist in addition to a GI -sometimes they can be more proactive - at least that is what we were told.

Jul 22, 2008
mollybeth
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
This sounds so much like Cooper. He has lm too. He is now 7mo and it has significantly improved. We see a pulmo too. He is wonderful and we have actually never seen a GI only GI nurses. He had his bronch at 5w old and they placed the probe at that time. It was not to bad, I'll post some pics. He was also on IVs b/c of the bronch and such. They found milk in his lungs during the lavage as well. We had a swallow study, which was normal, confirming the aspiration on the way up. It took forever for us to get our meds adjusted. We were on 10 doses a day at one point. He was one sick little boy. We finally took him off everything but prevacid b/c his liver stopped functioning correctly. It was not a big help at first. The things that made the biggest difference for us were changing the diet drastically and time, He also sees a chiro and we have had great results with that. I am so sorry you are struggling. Hugs to you!
Jul 22, 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
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Hi and Welcome! I agree with mom2Coy. the medication will help with the acidity and the way you can tell if it is working is if he is not in as much pain. But it will not help with the refluxing. So in other words, on just prevacid, he is inclined to still aspirate in his lungs. However a motility med (such as Reglan), like the others suggested, might help. It will help to move things along faster so that way he is less likely to aspirate his stomach contents. Or you can also add rice cereal to his bottles to help weigh the formula down a bit. we have dealt with aspiration issues as well. I am almost certain that she was aspirating from below as well because she has not had pneumonia since she had the surgery to correct it. (I think anyways, but my dates have been sort of off for the past year, it's a bit hard to remember everything) I hope that Cooper's mom comes on here soon. Her son had GERD with tracheomalacia. He had a very difficult start with it all but as far as I know, he is now doing well. I hope we were able to help. GERD is so trying, but add tracheomalacia and aspiration into the mix and there's another set of problems!!!! I'm so sorry that you and your son are having to go through all of this. Stick around and let us know how he is doing and what the GI doctor says. -Sarah
Jul 22, 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
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He he! Looks like cooper's mom posted at the same time I did.
Check with your
doctor first!