Posted By Posting
Nov 02, 2010
dcd
Freaking Out about Scope, Please Share your Experiences.
Kylie is much improved on the Neocate but still has disturbed sleep, some choking/gagging/coughing with bottles, and lower than normal intake. I think switching to Neocate was a big piece of the puzzle but that we're still missing something.

I'm not so concerned about the acid in her reflux b/c she's on a fairly high dose of Prevacid via Buffer Babies. But I'm concerned about possible breathing or other GI problems. I feel like we need to rule some things in or out, figure out once and for all what is bothering her, and regain control of our lives.

We are going to see a pediatric pulmonologist and I just got off the phone with the GI. I described her lingering symptoms and they want to do a (EGD) scope. I am freaking out. On one hand I feel like I have to do this if I want answers, but the thought of them putting an IV in her arm makes me sick to my stomach. I feel like it's going to be very traumatic. I am also worried about the risks of sedation and potential damage to her insides from the scope. I know these risks are relatively small, but I'm scared.

Please share your honest experiences with the scope. I need to know what to expect, and I want to make sure this is worth it. She is only 8.5 months old. :(

Nov 02, 2010
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
My son was a little older, almost 15 months...but it wasn't NEARLY as bad as I had dreamt the night before! We were called in...got him undressed and he was most certainly NOT happy. They didn't put him out in front of me (and I dont think there's any reason for ANY mother to see that). Anyway, took about 45 minutes...tehy called me in as he woke up and he was PISSED...kinda calmed him down...he drank some water and we left...within the hour he was FINE...no sore throat,no issues at all. I hope you get some answers!
Nov 02, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
My son hasn't had a scope, but has had numerous invasive procedures over the past 3 1/2 years. I know how hard it is to feel unsure if you're doing the right thing -- I will tell you that my own experience was one of frequently putting procedures off and fretting about them, until it became impossible to deny that they needed to be done, and they were almost always not quite as bad as I thought they would be. Being a parent, and having to make difficult decisions like these was one of the things I was most unprepared for I think...

I made a personal choice to remain with my son through every procedure and prep for every procedure. It was really hard sometimes, both the holding him/being there, and also fighting to get them to allow it, but for me it was worth it for the feeling I had that he needed to know that I was always there no matter how difficult things were. I think part of that came from our NICU experience, from having him whisked away from me and not being able to be there -- maybe I have some lingering guilt and grief about it. Anyway, I'm rambling now...I just mention it because I think it is important to follow your own heart and intuition, both about having the procedures done and about how you handle the prep/procedure itself/recovery.

Nov 02, 2010
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
Here's what we went through, relatively easy procedure.

We checked into the surgery center and they did complete vitals. Jedd was a tad more complicated as his EDG was his first time going under after his open heart surgery and he was only about 8 weeks post op. They all freaked out, they kept us longer placed an IV and ran ABX for his heart patch just in case.

They will all talk to you before the procedure, the GI, Nurses and anesthesiologist. They will answer all your questions and make sure you are comfortable.

We have a "kiss and cry" area, we are not allowed to go back with our children at our kid's hospital. So, we had to let Jedd go, he was 8 months old.

We use gas here to knock them out and then they place the probe/camera down the throat and take photos and biopsies.

It all took less than 15 mins. We had enough time to check into the surgery waiting room and sit down and they called us really fast. The GI came out to talk to us and then I was called back to the PACU (Post Anesthesia Care Unit) to see Jedd.

Don't be alarmed if when you get back there your child is screaming, there's lots of noise, lots of strange people and strange sounds and they just came out of being under. It's a pretty scary place. They will get you pretty fast, it's in their best interest to get the child as calm as possible as quickly as possible!!! LOL

All in all, a very fast and easy procedure and it can give you lots and lots of info.

Keep in mind that clear photos and clearness seen with the naked eye *can* be wrong. You have to wait for the slides to be read in order to be all clear.

We were kept in the PACU for longer than normal as Jedd's ABX had to run and they wanted to keep an extra close eye on him because of his recent heart surgery. We were also given their "best" anesthesiologist since they were worried about complications. Our cardi surgery office has their own anesthesiologist, so we could not use him.

Good Luck, you will be Nervous no matter how simple the procedure, that's completely normal!!!

Nov 03, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
The scope was easy, the barium swallow test was not. I too was scared, but I had come to a place that I needed to know what was going. Not knowing was worse than the thought of the gas. The nurse came in and played with him, and then took him down the hall. I was told that they gave him a little laughing gas and then did the IV to sedate him. The scope was done in 15 minutes. He was super pissed when he woke up. Not because he was hurting but because he was coming out of sedation. We did the barioum swallow test 45 minutes later. That plan sucked. He refused to take the barrium in a bottle because he never drank away and certainly was not going to do so while being pinned down. Got to the poing that I have them put it in a huge syringe and I shot it in his mouth between screams. My mom had to leave the room she was so upset. Keep in mind that she was a hard core, white uniform and hat wearing old school nurse and had 11 kids so she was tough as nails. None the less she had to leave the room. She was not happy about what we were doing to him. But again, we HAD to do it. It was time to figure out what was wrong with him. As a mother you have to do the right thing.... even if it is the hard thing. Its your job.
Nov 03, 2010
kenneyhl
My son Levi is 13 weeks old. We figured out he has reflux @ 2 weeks. We have tried 4 different formuls (Currently Neocate) and he is taking Pepcid, Prevacid, Mylanta, Grip Water
Levi was 13 weeks old when he had his scope. We had to stop formula at 12:30am the night before and NPO at 4:30am. We checked in at 7am to the childrens hospital. They registered us then to us to the pre/post op area. We were given a little area, like a cubical. It had chairs and a bed and all the monitors and stuff. The G.i. doc came and talked to us then the Anasthesiolgist came over. Because he was under a year, they said they dont knock him out. They give him a shot in the thigh and made him drink some sour crap, no i.v. required! They said it would take 45 minutes for the drugs to kick in but my boy was out cold in 20. He was hooked up to a heart monitor and a Pulse Ox reader was taped to his foot. I carried him into the surgical "suite" and laid him on his side. Said good bye and went to the surgical waiting area. He was done in about 25 minutes. The doc came to the waiting area and told me that his stomach and esophagus were irritated and inflamed but wanted to wait for the biopsy results before we changed anything(they took 6 biopsys) Then we went back to the pre/post op area where he was asleep on a gurney. I climbed up onto the gurney to cuddle with him, About a half hour later, we were told to wake him up. He was really hard to wake up and required oxygen but finally woke up after about 45 minutes of trying to get him up. They gave him some apple pedialite to make sure he could swallow correctly and sent us on our way!
Check with your
doctor first!