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New GI

A

awmom

Yesterday we saw my son's new GI since we were not comfortable with the last New GI, and it was a good visit!! The initial part of the visit was with the PA who had taken the time to read his medical record!! She addressed all of our concerns, mainly his inability to eat a reasonable amount of food without feeling exhausted and uncomfortable, my concern about his continued rise of WBC counts, his weight and bone status. The MD came in, asked him questions, did a physical, and came up with a plan.
-promethius test to check for antibodies to remi (finally!)
-gastric emptying scan (it was your idea first!!!)
-xifaxan for bacterial overgrowth (not sure about this one)
-scope in December
-adjust remi and add methotrexate if no antibodies
-talk to a nutritionist
-see endocrinologist down the line

N really liked the team, and I felt for the first time that someone was looking at the whole picture and not just analyzing one small bit of his symptoms (for which they always said it was IBS and nothing to be done....maybe it is, but maybe not!) and that N could follow up with him without me being there. The best part is that N feels hopeful and even though he realizes that there may be no solution to his problem, he at least came out with the feeling that they are trying to help and are willing to look at several different angles. They also seem to be very accessible and want to see him in two months (VS six months).

I have to give thanks to all of you who have given so much support and information for us to ask the needed questions and understand the answers, and to keep asking and hoping.
 
pdx

pdx

I'm so happy to hear this! The list of things to be done sounds good, and I really hope that the testing leads to a new and improved treatment plan for your son.
 
Maya142

Maya142

Moderator
Staff member
I'm SO glad they came up with a real plan!! :dusty::dusty:That's truly wonderful! I hope they can figure out what's going on with N and get him feeling better soon!

I think someone on here just had a kiddo with was treated for bacterial overgrowth. I can't remember who, but hopefully they will chime in.
 
C

crohnsinct

Well-known member
Carolinalaska she is the one with the bacterial overgrowth child. Hopefully she sees this page.

This is just fantastic news! IBS is a disease of exclusion. Glad someone is finally trying to exclude things!

Sounds like a keeper and just having N feel better emotionally about what is going on will go a long way!

Keep us posted!
 
CarolinAlaska

CarolinAlaska

Holding It Together
So glad your visit went well. It makes all the difference when you feel heard/listened to. Jae was treated for SIBO recently after the doc did a Lactulose breath test. The verdict is still out whether it did any good.
 
A

awmom

Thanks to all. I think we are both relieved and hoping for the best.
Carol, did J feel ANY difference after taking the Flagyl? What are the symptoms the doctor attributed to SIBO? They are not planning on doing a lactulose test on N. They just want to treat. I do hope they find something that gets J feeling her best!
 
my little penguin

my little penguin

Moderator
Staff member
DS did two rounds of flagyl for undetermined abdominal pain
Both times he got some relief but was not "better"
Looking back he probably got some relief due to the fact flagyl made him not want to eat much so he drank more shakes ( which is basically what he is doing now )
Sometimes the fix isn't what you expect .
 
A

awmom

Thanks MLP. I'm also not entirely convinced about the antibiotic. First they are going to do the gastric emptying test and if that is negative, then they would try the xifaxan. N says he wants to try it. Like DS, N felt better on the flagyl, but in the end it did not make him well. Surprisingly, N has cut down on his peptamen (was drinking about 5/day) and is now mainly eating meals which he cooks. He has been able to maintain his weight. I wish he would continue to drink them as a supplement to his meals, so he could gain a little weight, but he says he simply can't. So, one day at a time at this point. At least he feels encouraged that there might be a solution.
 
CarolinAlaska

CarolinAlaska

Holding It Together
awmom said:
Thanks to all. I think we are both relieved and hoping for the best.
Carol, did J feel ANY difference after taking the Flagyl? What are the symptoms the doctor attributed to SIBO? They are not planning on doing a lactulose test on N. They just want to treat. I do hope they find something that gets J feeling her best!
Click to expand...
No, not really, except relief to not have to take it any longer. I think it was starting to change her taste of food.

SIBO can cause abdominal pain, bloating, diarrhea, constipation - essentially any IBS type symptoms.
 
A

awmom

Thanks Carol. I'm sad it didn't do anything for J, but glad she is done!!! One thing the new GI did tell N was that his symptoms may be indicative of the way his GI is going to function from now on....in other words, that they may not be able to help him (it's better than when his other GI told him when he was 16, that people with crohn's felt like crap [his exact word] and that he needed to get used to it. I hope that is not the case, but I did appreciate the gentleness and concern with which they expressed it, and their willingness to try and test for different probable causes.
 
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