Invasive Procedures

[Anonymous]

Hi all,

I posted in the Boo Hoo I Need You section about how Gabby is having a hard time again after three weeks of doing absolutely wonderful. I put a call into the GI and they agreed to up her meds (hooray) to 22.5 mg, just like the Marci-Kids recommendation on one condition. I need to schedule her for testing. They want to scope her throat and go from bottom up too. I was just wondering how many people have gotten this kind of testing and how it helped their little one’s treatment. I don’t want to do this unless it’s going to help in her treatment.

[Anonymous]

from my understanding it doesnt do anything for treatment if she is already on the right med and marci kids dose,,,,,it will just show how severe her reflux is etc

[Anonymous]

I read your other post, too and it certainly seems that she needs the higher dose. Can you ask the doctor to maybe allow you to use try the higher dose for two weeks before doing any further testing? Tell him you will keep him posted. If she improves then there may be no need to subject her to the test, so why not try the higher dose first?That’s probaby what I would do, but I honestly don’t know a whole lot about the test or exactly what they are looking for……hopefully others whove been through this can give you better advice.

Sorry things are so hard right now.

[Anonymous]

I would say they’re looking for abnormalities in the digestive track. Hyatial hernia, pyloric stenosis and such. They also may take biopsies to see if there are allergy issues or celiac disease.

I agree about trying the upped dose first and if there’s still issues then do the procedure.

Have you thought about going ahead and scheduling just to satisfy them and then cancelling in a week if things look good. I know, it’s sneaky. And you risk the doc not renewing your perscription, but you could just say that she was doing sooo wonderful, you didn’t feel the need for further testing.

[Anonymous]

How long of a wait is it for the test? For us the scope was actually valuable b/c it was able to tell us that there wasn’t any damage anymore, there wasn’t EE, no visible structural issues and that everything looked good. Others have found damage and have had to try other doses of meds or other treatments. Hailey had hers done at 16 months- we asked to have it done at 6 months (when we strongly suspected damage) and had to wait all that time.

My thoughts would be to ask your doc if you can book for a month down the road. That would be long enough to know if the higher dose was working, and maybe you wouldn’t need it at that point.

For us, I was so scared of testing but it was definitely a good thing in the end. Gave me answers and peace of mind, and wasn’t that bad overall.

Good luck.

[Anonymous]

the testing can make all the difference in the world in her treatment—-or it can assure you that the treatment you are using is working and nothing else is going on.

my daughter was on prevacid and carafate and she still was getting an ulcerated esophagus. i had no idea how bad her reflux really was until she had a scope and a ph probe.

i just had a scope done myself and did not realize how bad my own reflux really was until i heard the biopsy results. if your daughter isn’t improving after a few weeks on a higher dose—-i’d definitely have the testing done.

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