Posted By Posting
Jul 28, 2010
kavyamom
New - Need info about upper GI, Endoscopy
Hi, I have been lurking and reading posts for sometime now. Kavya, my toddler (19 months) is scheduled to have an upper GI and endoscopy for her reflux issues. She is extremely scared of strangers and of course doctors as well and will scream and cry even when they enter the room and so really not sure how she is going to handle these tests. I wanted to get some details about these tests: Endoscopy - what does conscious sedation mean? Will they sedate before the IV is put in? How do you handle the fasting all night (Kavya has Nutramigen at 4 or 5am in the morn and breakfast at 8am)? How do they feel after the procedure/after the sedation? She is allergic or has an intolerance to most foods and so right after the procedure what can she have? She can have nutramigen, yogurt, coconut water, prune juice...would any of these help or be allowed? If they give her a popsicle with flavors it will be a disaster to her stomach. How long do you end up spending in the hospital? Questions about Upper GI series: Is the barium mixed with formula you take? Or is it a solution all by itself? Can I give the barium in a sitting position to her (i.e. on my lap) and then put her on the flat table? Or does the barium have to be given while she is lying on the table (knowing her she will not take it like this especially since she will already be screaming because of unfamiliar people and environment). Do they ask for the barium to be given at various intervals during the test? Kavya is extremely fussy with drinking and so that is why I am asking all these questions. And tube down the throat as last resort sounds awful. Doc said fast all night (not even water), radiology dept said nothing 4 to 6 hours. Getting different info. Has anyone given milk in the middle of the night so they are not starving in the morning? How long does it take? Also, if there is a small bowel follow through, how long does it take? Thanks! Just so nervous about everything and Kavya is already so traumatized with all the doc visits, blood draws, etc. and these tests are just going to make it worse. Compared to other babies/toddlers (even with reflux), I find her to be very sensitive about her body, space, etc. Thank you.
Jul 28, 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
Upper GI first:

The barium can be mixed with just about anything from formula to applesauce to eggs. Jedd had his done with formula, we gave him 3 ounces through his feeding tube. They like the child to take it relatively quickly as the body can start to digest it. I think I had to give it to him in about 10 mins....I was very worried about puking as his pump normally ran for 30 mins for a bolus that size. He kept it down though.

I gave him the formula as he sat on my lap in their department. Then when we were done, we whisked him over to the table to lay him down. I was very worried about puking again, but they used a TV video to keep him entertained....I'm pretty sure that if you are at a childrens hospital, they should have one there and videos as well.

Nothing is given after that first amount of food. Jedd laid on the table for about 20 to 30 mins (it's been a long time..LOL) and then we were allowed to walk around the hospital for about an hour, then he had to get scanned for an additional 5-10 mins. NO food is allowed during the test at all, even during the time they allow you to leave their department.

Even though it sounds awful, if you need to use a tube to get the right amount into her, it will be quick and done fast and they can yank it as soon as they are done. But, this is coming from someone who did tube feeds for a long time.

We were told to fast from Midnight and he could have clear liquids up to 4 hours prior. We left him empty though. Did not want to risk a vomit......as far as being hungry, I really can't answer that because Jedd had a pretty severe oral aversion and was VERY happy to be allowed to NOT eat.... :(

Now on to the EDG (endoscopy):

Again, NO liquids past midnight and clears up to 4 hours prior I'm pretty sure. They should give you an instruction sheet as to your hospitals protocols.

You will arrive early to the O.R. waiting room, they will do full vitals and ask you all sorts of questions. The GI should come out to talk to you as well as the nurse and the anesthesiologist.

They were super careful with Jedd because he had just has his heart surgery about a month prior, so some precautions taken for him, may not be what happens for you.

With her age and anxiety over DRs and such, I would most def. ask for some versed. We used that on Jedd's last O.R. trip as he had has many of them and we were worried that he would scream, cry, kick and do whatever it took to get away from them.

They gave him a good size dose, trying to get him really drowsy....it made him act drunk...pretty funny actually. He went with them REALLY willingly, they carried him, he could NOT walk...LOL NO issues at all, best decision we made that day for sure.

They do the twilight sedation with gas and it's just enough to make them really really drowsy. Jedd's I.V was placed after he was out, I'm pretty sure they knocked him all the way out, again, he was more of a risk and they wanted to watch him really closely, they also needed to run ABX for him because of the patch on his heart. This meant out PACU stay was longer before we could go home.

It's a really fast procedure, will take all of 15-20 mins to complete. Go straight to the O.R. waiting room and sign in because you will not have time to go and get coffee or anything.

They should come and get you pretty quickly when she is done and bring you to the PACU.....don't be upset is she is screaming and really upset by the time you get there. It can be very scary to wake up and not find Mom there to comfort them. As soon as she is stable, which is pretty fast, they will get you. they want kids to be as calm as possible so it's in their best interest to get you.

The GI will take pictures to show you and will take tissue samples for further testing. The photos can show visible damage but the tissues samples will tell the true tale.

In the PACU you they will give you clears liquids to have her drink, like Pedialtye and such. They don't want to give any "milk like" drinks as the GI tract will be functioning much slower due to sedation. They may allow the prune juice, but again, you should get a list from the hospital and they should provide something for you to give her from the nurses.

We stayed extra long as we had to have the ABX run so we were there in the PACU for about 4 hours at least. They really wanted to observe him longer.

Let us know if you have any other questions.

Jul 29, 2010
kavyamom
Thank you so much, Jessica! Really appreciate the quick response as well as all the detailed info. What do you generally learn from the endoscopy and Upper GI? From what I have been reading the upper gi doesn't seem to be that useful. How is the recovery after the endo (any constipation from the sedation or other issues?). Kavya has had silent reflux from birth and is currently taking 2.2 ml of zantac twice a day (her weight is 23 lbs). We tried Prevacid, Prilosec, and Nexium and none of those suited her so we are stuck with zantac. After a lot of record keeping, I found 13 foods/drinks that she can have and with those her reflux is manageable with the zantac. However, anything new that we try beyond those 13 foods, her reflux will get really bad and she will start waking up every 1/2 to 1 hour at night. That is why the GI wants to do these tests to see what is going on. We are also going to see an allergist since she does have a milk allergy (confirmed via blood test as well) and has GI intolerances to pretty much all foods other than the 13.
Jul 29, 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
did you suspend the Prilosec and Prevaciad, that may be why they didn't work.....they have to be made right or they are ineffective. We have ONE pharmacy in town that makes them correctly. Also, I think Prevacaid has trace amounts of milk in it.....

Since it looks like you are having some pretty bad allergies happening an EDG is a REALLY good idea.....they will tests those slides to see if she has something called EE. It's where the body see food as the "enemy"....hard to explain. But it causes lots of GERD issues even though EE is not GERD. It can cause tummy issues like vomiting and bloating and all sorts of stuff.

The EDG will also tell you if there is any damage and will let help the GI decided how to proceed in the care of a child with GERD.

Jedd's GI tract didn't make too much of a blip from his EDG. The sedation is pretty light and even though they knocked him out for it, it was for a very short amount of time. We did clear liquids overnight, he was on tube feeds, and then went slow the next day. He did fine though, you just have to take it easy.

An UGI is one of the first tests I like to tell parents to get done. It will tell of all the anatomy of the GI Tract is "formed" correctly.

A Allthough, some parents like to say they got their DX for GERD through an UGI. that is not what an UGI is for. It's main reason for being done is to see if there are any structural anomilies of the GI tract like atresias (holes) or twisted or malformed intestines, if they do a follow through.

I won't tell you the hell we went through with Jedd's when his was done....it was horrid to say the least, BUT, I had a completely NON oral child who was 100% tube fed and we HAD to get him to drink some of the formula....it was not a pretty sight. By the time he was done he was covered in the solution from head to toe and I was in tears.

If you think you may have a hard time with her, bring backup....any one you think can help keep you and her calm. they had to "force feed" Jedd in order to get some swallow pictures.

If you are still seeing GERD signs I really think you should try to get on a PPI....you can go to the Marci-Kids site and order some caracream in order to suspend your own med and that way you can make sure it is safe and effective for your child.

But, it may be she has EE or something like it.....I would wait to change anything until after you have these two tests done and the results are in. It's best to stay in a holding pattern until then, then you can make a new game plan.

Jul 30, 2010
kavyamom
Jessica, yeah that is what I am planning to do...just wait and see what these tests reveal. The GI did mention that they will test for EE. Regarding the PPIs, we used the prevacid solutabs (dissolved in water at home) and gave it to her for 2 weeks. She was screaming all night for the 2 weeks and got so sick from the complete lack of sleep. The GI and of course we also decided to stop it. She was worse on the medicine than before the medicine but we were told to try for 2 weeks so we did. Prilosec was the compounded form and she seemed to have similar pain like the prevacid (we only tried for 2 days) and so we stopped that too. We also tried Nexium and that didn't suit her (the ingredients have citric acid which I think she is allergic to). So, we just resorted to zantac but as you know this doesn't help much. We really went through hell the first year. Now, she is a little better.
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