Infantreflux.org | Upper GI and Endoscopy

This topic has 11 replies, 1 voice, and was last updated 15 years, 4 months ago by Anonymous.

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April 28, 2009 at 2:32 pm #62316

Anonymous
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We’ve been round and round with meds for Sam.. zantac, prilosec, prevacid with bufferbabies, prevacid solutabs, and now zegerid. We got the zegerid from the ped GI that we FINALLY got to. Sam is doing better than he ever did on the prevacid but is still not eating well. At least there was some improvement! I’m glad I didn’t listen to our pedi when he said one med is as good as another and won’t make a difference to switch, and also glad I didn’t listen when he said Sam has a behavioral issue and that’s why he won’t eat. Another point for trusting the mommy instinct. The Ped GI is great…immediatly said that we need to make sure nothing else is going on since sam has been on meds for so long with no improvement. <yay! That’s what I’VE been saying!> so we took him in for a gastric emptying scan, swallow, and upper GI. That day was a DISASTER. This kid does not care that he didn’t get to eat for x hours and still refused to take the bottle for the gastric scan. So that was a bust. Took them 45 minutes to get 1 ounce in him… not so useful right? Then we met with the speech pathologist before the swallow study. She observed him breastfeeding (for maybe a minute…he actually was having an ok day) and said that it doesn’t sound or look like he has issues with that and since he won’t take a bottle naturally then the test won’t really provide any useful info. So we didn’t do that test. Then the speech pathologist went to check us in for the upper GI and came back saying that there was no appointment scheduled for that, and she couldn’t get ahold of our dr. so to just go on home. We did. What a wasted day. Turned out that the computer had a glitch and sam DID have an appt for the upper GI and we missed it. So now it is rescheduled for thursday. We have a scope scheduled for monday the 4th. Now that we are getting to all these things, which I have wanted to do since he isn’t improving at all (even on marci doses) I am getting anxious for him. For the upper GI i just know that they will have to put the tube in his nose since there is not a snowballs chance in H*** that he will drink BARIUM from a bottle if he won’t even drink milk from a bottle. Has anyone had to have them do that and how was it? As for the scope, did anyone have any problems with their lo after the procedure? Some people say that the throat can be sore for a day or two afterwards… I’ve read most of the old posts on here and just want to be prepared.

On another note, we have been trying to do some solids (sam is 6 mo) and he is definitely interested and ready, but he gets very agitated after eating a little bit, and also sounds very raspy and coughs a lot. Did anyone else have stuff like this getting started but then it got better? Is it just that he isn’t used to swallowing the foods or would you think that something else is bothering him? I always wonder about his throat and swallowing because he drools SOOO much and always has, plus he always has his hands (both if he can fit them) about as far back in his mouth as possible. I know that we will get some answers, one way or the other, soon. I’m just anxious and want to know if anyone else has had experiences like this…

Sorry for the insanely long posting.

April 28, 2009 at 2:53 pm #62317

Anonymous
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when sylvia had her second upper gi before her fundo, we used a large syring to squirt the barium into her mouth. she screamed bloody murder and my hands were covered in barium. i can’t remember if i was just trying to hold her down or if i was trying to help get the barium in her—but it was a circus either way—but we got the info we needed.

oh yeah, and it was a last minute thing—no preparation beforehand. we were at the surgeons office 3 hours from home and they just sent us over to the hospital to do it.

honestly—this will make me sound horrible, but these kind of things just stike me as funny and i have a hard time keeping from laughing. i knew she wasn’t hurt—only pretty darn mad.

i’ve had the same experience when helping to hold a child down for a few stitches. i had my body lying across elliot while a few others tried to help hold him down. he was screaming, “get off me! get off my legs!!!!!” i was trying not to laugh and the nurse was asking me if i was ok because they could get someone else to do it. i guess she didn’t realize i was trying to keep from laughing at my own child in the ER. i think the doc figured it out because he said, “i think mom’s ok.”

when i told our ped gi that i probably look like such an insensitive mother, he said, “no, you just have a lot of kids.”

sorry you missed your scope. when we took sylvia in for her fundo, we sat in pre-op for 6 hours and then we had to drive home and come back another day. our doc had gone in to help with a cancer surgery and got very involved. we were a little upset at first—but then i realized that this guy is a really dedicated surgeon and that the little girl in surgery needed his hands far more than sylvia did that day. i think her family was pretty greatful, too.

kevieb2009-04-28 15:01:11

April 28, 2009 at 5:29 pm #62322

hellbennt
Keymaster

so glad you found a ped GI that you respect!!

can you please post here: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

this way you will help others. feel free to post negative experiences w/ other drs, too! if you have already posted then thank you!

I don’t have much else to add…just wanted to ask you to post and also to say YAY for progress!

hellbennt2009-04-28 17:31:17

April 29, 2009 at 5:43 pm #62330

Anonymous
Inactive

That sounds exactly like Hailey. She also would nurse poorly and just as bad with a bottle. It was impossible to feed her. But when she had her upper GI, I warned the nurse beforehand. Then much to my shock, Hailey sucked the Barium out of this big syringe type thing like it was nothing- she hated my bm, but sucked back the barium! The nurse was smiling at me, and then gave me a “told you so” speech, trying to show me her technique!!….ha!

Anyhow, all you can do is your best. Hopefully he’ll be like Hailey and take it like it was nothing. (and this was a kid who would scream at the mere sight of food)

April 30, 2009 at 4:21 pm #62341

Anonymous
Inactive

Sounds like these two are a match… he wouldn’t take it from the bottle but swallowed enough from the syringe to be good for the test… and all the while with a smile on his face as the barium ran down his cheeks. Hilarious. It bugs me that he always smiles at new people though…they all think I am a liar when I describe what he is like at home!
So the upper GI is done…scope on monday. The radiologist said that everything looked normal to him. Good news I guess…I just want there to be something that can be fixed so that he can be happy and comfortable!

May 2, 2009 at 7:34 am #62367

Anonymous
Inactive

I remember the feeling of wanting it all to be something simple that can be fixed. But really, them not finding anything wrong is the best thing (especially for that test… you don’t want any structural abnormalities!).

“They all think I am a liar when I describe what he is like at home”…

Yes, they either think you’re a liar, or think, “oh, this first time mom doesn’t know how to feed a baby”. In my case, when I’d tell them that I wasn’t a first time mom, it seemed to ruin their theory. Luckily for me (or not?!) Hailey was a hysterical mess at every doctor’s appointment we went to. They did so many unpleasant things to her and she was so anxious and uncomfortable that she developed anxiety of these places. The docs would see her screaming so much, and our ped to this day tells me that I’m his hero for making it through Hailey’s early life!… and that’s coming from someone who’s been around a lot of babies. I still like videotaping things for the doc- especially the behaviour around the feedings. That way they can see what’s happening at home. Good luck.

May 13, 2009 at 3:50 pm #62533

Anonymous
Inactive

We had the scope done last week. Everything went well and sam was a real trooper. Flirting with the nurses while waiting of course. He even took a nap in the hospital crib while we waited. After the scope, they said he would “probably sleep all day!” HA! He was awake for the rest of the day. Didn’t even sleep on the 90 minute car ride home! Crazy kid. Anyway…the dr. said everything looked very good but we just got the biopsy results back today and there is irritation in his esophagus. i asked about a dose increase since there is still some room for that with the zegerid and we have seen some really positive changes since starting that and stopping prevacid. Nurse said she would have to talk to the dr and call me tomorrow because he is already on a “pretty high dose”. He’s on 20mg. I give it 10mg 2x a day so I would like to try 30 mg. We’ll see. It just amazes me that after all those months on 30mg prevacid he still has some damage! I also feel vindicated because our pedi almost had me convinced that it was purely behavioral at this point since he was so highly medicated. Now I know that mommy instinct is best!
We are having more success with solids since starting zegerid so yay for that. He is trying to figure out the sippy cup but doesn’t get that he needs to suck to get it. Still doesn’t nurse very much during the day but lots better than pre zegerid. He doesn’t totally refuse anymore. And the all night nursing marathons continue…argh. I don’t know if there is anything I can do about the night feedings until he feels well enough to eat better during the day. My mom keeps asking if I am going to let him cry yet since he is up SO MANY times at night but I know I’m not ready for that and neither is he. Getting those test results helps my case.
Anyway…just wanted to add this update and see if anyone has any suggestions now that things are improving a little.

May 13, 2009 at 5:56 pm #62537

hellbennt
Keymaster

yay! for some progress!

try a straw cup- I find it’s easer for them to ‘get’

also, the type of first sippy cup I used is like this one- here’s the lid

http://www.organicallyhatched.com/Snack_Trap_Sippy_Lid_p/snacktss.htm

recommended by my lactation consultant- AND the bonus is you can get the snack trap lid with these & snack traps rule, LOL!

http://www.organicallyhatched.com/baby_food_accessories_that_are_BPA_free_s/51.htm

NOT saying to buy from this site, but giving an example…

so who is this dr you recommend?

as for the meds & the NURSE…I would go to the DOCTOR &

FAX FAX FAX the dr

dont wait for a call…

start off w/ a THANK YOU

keep it short & sweet

stick to the facts (no feelings and no rambling emotions)

state current meds, doses, symptoms

make request- flat out- short & sweet

THANK AGAIN

follow up by calling office to say fax was sent

call again later to discuss requests in fax, ie: have you called in the increased prescription yet? THANK YOU

sample fax: https://www.infantreflux.org/forum/forum_posts.asp?TID=10633&PID=90325#90325

About faxing the doctor (& more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2841&TPN=1

May 13, 2009 at 7:29 pm #62538

Anonymous
Inactive

I would have posted the dr. on the board but he is retiring in 2 months 🙁 Sorry! He is at Duke Childrens Hospital in Durham NC though. The whole dept. seemed really nice.
Thanks for the cup tip. He wants the cup so badly but can’t get anything out and when I take out the spill proof valve he just pours it all over himself. Too funny.

Just talked to the nurse…said that dr. said 20mg of zegerid is plenty for his weight… I thought these drugs were NOT weight sensitive. It’s a matter of symptom relief. Zantac, etc. ARE weight sensitive. Anyway. So they have suggested carafate (again). We used it while on prevacid and it did not help- at all. So we’ll try it again…maybe it will be more useful this time since the zegerid is helping more. I’ll give it a little more time before I bug the dr. again.

livalil3192009-05-14 12:42:23

June 5, 2009 at 10:17 am #62773

Anonymous
Inactive

Well…most of the progress that was made is gone. I faxed the dr. to ask for a zegerid increase and he said no again. He increased the carafate… hmm. It’s so hard to get all these meds in with the timing issues. He also wants to try again for the gastric emptying scan. Last time it was a failure bc sam would not drink the bottle…i reminded them of that and they said we can just try the syringe right off the bat. Hopefully he’ll take enough. It’s a long drive to duke childrens for this stuff. Is there anything besides DGE that the gastric empyting scan can show??? I guess the dr. is thinking that may be why sam has such low intake. Personally I think it’s the pain, but I guess if it were DGE and his tummy always had something in it then the reflux would be worse too. So we’ll see.

June 5, 2009 at 12:31 pm #62774

Anonymous
Inactive

how is sam’s weight? thinking back, it seems like alot of babies that have had scopes have still had a little bit of irritation in their esophagus, even on meds. i am wondering if the docs expect to see this with a child with reflux? sylvia’s esohpagus was getting ulcerated, even on meds, so she was in a different ball game. i know that when i had my scope done i was surprised when they told me that the biopsy results showed severe reflux esophagitis—–because i didn’t think my symptoms were THAT bad. i have a lot of trouble swallowing certains foods sometimes—-then, after i have eaten, i sometimes have trouble keeping it down. it doesn’t hurt, but it is an uncomfortale feeling.

the ped gi and i once discussed the fact that sometimes reflux doesn’t hurt, but it doesn’t feel right. he said they wonder if this could be the cause of some of the fussing of reflux babies—not pain, but a sensation that doesn’t feel right. after all, the only way they have to tell us when something is wrong is by fussing.

carafate can be great—-i have even given it to sylvia in the middle of a feed—which is not proper timing at all—and it still helped her to settle down and eat. someone else on the board said they did the same thing.

June 5, 2009 at 2:33 pm #62776

Anonymous
Inactive

I agree with what you are saying…the dr. did say that the irritation was “consistant with reflux” so it sounds like it was expected. I also think that the “something isn’t right” feeling is probably a big part of sam’s issues bc he has food coming back up while he is still eating.
His weight is really good… he’s always been a big boy. The weight gain has slowed a LOT ( more than the normal slowdown with age) but still isn’t enough to be seriously worried. It’s just so frustrating bc he is cranky ALL the time and I always wonder is it that he’s hungry or is something hurting, because he won’t eat much ever. I do think that things are better now than they were say 2 months ago…so I am ever hopeful that he will grow out of this sooner rather than later. Aren’t we all? Thanks for your input…
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