Posted By Posting
Feb 26, 2011
stephensmommy
Mommy to Stephen Michael, 4 months on Dec. 27th
Diagnosed with GERD, currently on Zantac, Miralax, Gripe Water, and Neocate with Rice Cereal
where to go from here....
Hi everyone, Well after a long hiatus from this website thinking things were on the up and up, I'm back. Here is our story before now: http://www.reflux.org/reflux/webdsc01.nsf/vwID/VASV-8C53W3?OpenDocument After the Nissen surgery, things drastically improved. He started drinking 5 oz. at a time in 10-15 mins and actually wanted to eat. It was amazing. I laid in bed crying out of pure joy that he was doing so well. That lasted for about 3-4 wks., then it got bad again where he refused to eat, then it got better again, then bad, then better, and so on. Right now things are bad again. He is refusing to eat, and I can barely get anything down him. As far as I can tell, there is no reflux going on because he is sleeping great, never cries (except fussy with teething), and is totally happy/playful, plus nothing is coming back up after he eats. He still gags alot with the bottle, syringe, anything in his mouth, etc... He is teething but won't put teethers in his mouth. He is totally content with not eating, but I know he is hungry/thirsty b/c he sucks on his tongue in his sleep a LOT. We just started Periactin for both nasal allergies (though we haven't determined the allergy yet) and for appetite stimulant. He gets .5 mL twice a day, 2 mg. solution. Do you think that is enough? He now weighs almost 17 lbs (due to his rare moments of eating great and rice cereal). We are also starting Feeding Therapy next week with an OT/speech therapist, and I am hoping they can help him/me figure out what to do to get him to want to eat/drink from the bottle. I want to eventually try some real solids/baby purees but I am too scared to try anything as he hates things in his mouth, though I've noticed him "trying" a few toys/blankets while teething, getting scared and then pushing it away. It's like he wants to but doesn't. (?) He won't take a bottle AT ALL unless it has rice cereal in it (don't ask me why...maybe b/c he likes the taste better)? It is Beechnut so nothing in it that could bother him allergy-wise. We are still on Neocate and had been thinking about trialing some soy until now. I know he hates the taste of it, but I have tried flavoring packets, Karo syrup, and Pedialyte, and nothing works. He will drink some water/Pedialyte on its own. He is constipated at times (sometimes I have to "help" him poo with a q-tip, but then it comes out soft). I have heard of a Nissen surgery causing dumping syndrome, but can it cause DGE?? I've noticed that there are times he still tries to throw up but of course can't from the Nissen. Anyway, I'm at my wits end with trying to force him to eat. I'm a nervous wreck and dread feeding times. His doctors are great but basically say if he is gaining weight, he is fine. I just don't know what to do next. I'm tired of it all. I DO NOT want to put him on a feeding tube and honestly, b/c I've seen him eat great before, I don't think he needs it. HELP! Any and all advice is appreciated/needed here. ~ Sara
Feb 26, 2011
jeddsmommy
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
I take it you didn't get a G tube with the Nissen?

DO you think he's bloated and can't burp? Just a thought. Alot of times oral intake will plummet with a Nissen.

Not sure about a Nissen Causing DGE but nothings out of the realm of possibilities.

Have you done a swallow study? I ask because you said he will take the bottle IF it has cereal in it.

Feb 27, 2011
stephensmommy
Mommy to Stephen Michael, 4 months on Dec. 27th
Diagnosed with GERD, currently on Zantac, Miralax, Gripe Water, and Neocate with Rice Cereal
Hi Jeddsmommy, We didn't do the G-tube b/c he did so great after the surgery with eating. None of his doctors has even mentioned it since he has gained weight, and his eating is off and on. He actually CAN burp, spit-up a little, and passes gas without pain. He was bloated after the surgery but not badly. We haven't done a swallow study after the surgery, but we did 3 before the surgery and he was fine. Maybe the surgery has affected his ability to swallow? Sometimes he acts like he doesn't want to swallow even when sucking the bottle.
Feb 27, 2011
jeddsmommy
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
Yes swallowing difficulties can occur after having a Nissen done. I would ask for a swallow study and go from there. You never know what it will show.

I know some Momma's who say their hospital will do Nissens with G tube only for these types of issues. That way, you have it if needed and if not, it can be taken out later. No harm done.

Did they talk to you about taking breatks with the Periactin? You can't take it continuously, you have to stay on then go off of it. The rotation all depends on how the child does with the med.

Some kids go 3weeks on, 1week off...others have to have shorter rotations. But you def. want to rotate it on and off.

Mar 03, 2011
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 know I sound like a broken record, but I would watch the allergy situation closely. Most of my son's difficulties were due to allergies/EE. After we got that under control, everything else fell into place. Not to say that has been easy, he is going on 5 & is still on Neocate w/only 2 "safe" foods. There is an older book (I got at our library) that was recommended to me by my son's nutritionist called "Is This Your Child?" by Doris Rapp, MD. She talks about the surgery you mentioned, sinus issues, ear issues, etc. & allergy. It is an eye-opener. I'm sure you don't have time to really read it, but you might want to check out the chapter where she talks about that surgery. Anyway, hope you can figure it out - I know how frustrated I was in the early days, before I really knew exactly what we were dealing with. El
Mar 03, 2011
stephensmommy
Mommy to Stephen Michael, 4 months on Dec. 27th
Diagnosed with GERD, currently on Zantac, Miralax, Gripe Water, and Neocate with Rice Cereal
update
Hey everyone, Stephen stopped eating completely and got BADLY dehydrated. He hasn't eaten for 5 days now at ALL. He thankfully stored up enough fat to where he's only lost 4 oz., but the threat right now is a feeding tube. However, doctors and surgeons are against a feeding tube this soon. The goal right now is to get him into Baylor Hospital's Our Children's House Feeding Program. They checked him and tested him physically for everything. We don't know whats going on. Please pray for us. Thank you! ~ Sara
Mar 05, 2011
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.
Praying. Let us know what happens.
Check with your
doctor first!