Many tests set-what to expect

[Anonymous]

Ian’s having an upper endoscopy, flex sig, and rectal biospy all done at the same time-next Tues, March 7th. Any words of wisdom or what to expect? I know they have to put him under (which frankly is the worst part of it for me)..

Am nervous, but SO glad we’ll be able to rule stuff out. Doctor (whose from Cornell Hospital here in NYC) is so great she even said she’s going to introduce me to the allergy team at Mt. Sinai because they are the best (even though they aren’t with her own hospital). Feel very comfortable with her.

THANK YOU!

Tracy (Ian’s mom 9-26-05)

[Anonymous]

Tracy

Hopefully the tests will provide some answers!

Matthew had an endo done (with biopsies). They actually just sedated him with a diazepam suppository and the whole thing took about 10min. He did not seem to have any side effects and was just out of it for about 1 hour or maybe 2, like really sleepy.

Have no idea what a flex sig is? Or how the other bio`psy is but i am sure he will be OK…

I met with the team at Mt Sinai when we were there. Yes, tehy are supposed to be very good… what they told us when we were hospitalised was that Neocate only until Matthew was 6 months old and then to come and see them at 6 months so that we could work on introducing foods slowly. they also said that they could retest him for allergies then because by that time, some babies show some of their allergies on test, but not to count on it.

[Anonymous]

Tracy – first of all, I’m so glad that Dr. Moon is so great (we will
definitely see her if we need to go back to a GI) and I’ve heard GREAT
things about the Sinai allergy team – when is that happening?

As for the tests, I can’t add much since we haven’t had any done yet.
But I know others here will have much to add and I know you will
finally get some answers and a plan of action in order.

How is Ian feeling today? Is he eating at all? I thought they had decided not to do the rectal biopsy?

[Anonymous]

Well they said since they’re going to be there anyways, why not just do it so we can rule everything out. We said ok (better than having him go through this again). She wants to make Ian as comfy as possible. We are putting a dash (just a dash) of Brown Sugar in the bottles and he’s eating well (thank god!). So looks like taste has become a factor. He’s not doing the bearing down thing too much today, but who the heck knows! Really we’re stumped. I’m so hyper aware that he’s going to have a reaction to the sugar, but I heard white sugar is the kind prone for allergies. Some red marks on face, but I think that was from him scratching himself by accident. Dr. Moon isn’t crazy about the bs but she ok’d it so he’d eat.

They’re not using a suppository, but rather doing it intravenously I think with a needle. I hate it! Suppository sounds better. Plus they keep saying if he has any cold, virus, coughing, they need to know because they won’t put him under. Which of course, I’m like, well he’s still got tiny congestion from last cold-when do you know how much is not ok? Worry, worry, worry.

Tracy

[Anonymous]

Tracy, I know that the idea of putting him under is scary, but I had a flexible sygmoidoscopy done when I was 17 and it was really painful (the first half was fine, but the second part was really uncomfortable). So, it’s probably better that he’ll be under while they are doing it. It doesn’t make the idea of anesthesia any less scary, but at least you know that you helping to avoid any more pain for him. Between the three tests hopefully you’ll be able to get lots of good info. I’m glad that he’s eating a little better today!

[Anonymous]

Tracy, maybe you will finally get some answers from all the testing. What kind of problems has Ian been having? Ryann has always had tummy problems, horrible gas, pushing, grunting, wakes up at night from it. I have been asking for testing but I keep getting the run around. Please post the results when you get them. I know its scary putting them under. When Ryann had her scope done they told me to kiss her before I left the room, I walked right into a wall I was so upset. She did fine and she was only 9 weeks old. I hope that the day comes and goes fast for you all with out any problems. Sarah

[Anonymous]

Thanks everyone-I know your right. He’s been in a great mood but eating is still not exactly comfortable. Peace of mind will hopefully follow. Although, he did start to get a rash from the Brown Sugar (and it really was just a tiny tiny ammt.). Gosh! I really hope he’ll tolerate something someday.

Kim-thanks for the insight. Were you sore afterwards as well? My dh had one as well a few years ago and said it was painful.

Sarah-I will absolutely post results. Ian’s been on Elecare for 3 months now and was doing great the first 2. Then one day, he had a feeding and stopped after a couple of ounces-grunting, wriggling, pushing, passing hard gas. It kept escalating and eventually he stopped eating. BTW-it only happened during and right after feedings not any other time. Happy baby otherwise. Then we had to struggle to get food in him. Oh, and he starting only pooing during feeds and they were explosive and watery(not to mention had gone down to 1 a week). This lasted for a month before I found a GI (women with child btw) who finally took us seriously. Also, Ian hasn’t gained weight in a month. We switched to Alimentum for 2 days (disaster-blood and mucuous in stool, crying, etc) and took him off immediately. However, it did one strange thing for us-he started eating and pooing normally again. Very confusing. Now back on elecare, but bottle refusal (we think taste now) and some discomfort of gas while eating again. We’re all stumped. Hopefully you’ll find someone who will get you some answers! All I can say is persistence helps. Good luck!!

Tracy

[Anonymous]

Tracy, I really don’t remember being sore afterwards. I just remember that towards the end of the test there were several times when I had sharp pains as they moved the probe. I really hope that the tests can help provide some insight for you!

[Anonymous]

Tracy, good luck with all the tests. I will be thinking of you and praying that everything goes well. I really believe that for some refluxers, you need answers to tell what’s really going on. If someone had done this for us then maybe our current situation could have been avoided. As for the flex-sig, I had one done when I was 8 months pregnant. I personally didn’t find it to be painful, and I didn’t take any meds so I was totally awake. If you’re given the anaesthesia then you don’t have to worry- it won’t hurt him at all, and he probably won’t know that it ever happened. I did have some very minor “aching” for the next day, but it was very minor and then it was gone. Good luck to you both. Please keep us posted.

[Anonymous]

Thanks Lori. I really appreciate the good thoughts.

I agree-testing will put some of this to rest I hope.

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