Update after seeing the GI

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nursejulieanne

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Dec 30, 2012
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So, we saw the GI today. She said definitely not crohns since the fecal test was normal. I know some of you have said that your kiddos were normal on that and still had crohns, but I really don't know what to do if the GI won't consider it.

She did put my daughter on dicyclomine for her stomach pain. I am a little confused as it says it slows down motility, and with her constipation I can't see how that would be a good thing. But the plan is to try this for 2 weeks. If her stomach pain goes away, then we are calling it IBS and continuing to treat the constipation. If the stomach pain continues then she thinks it is the reflux causing the pain and she wants to scope her.

I am a bit concerned about this medication as the pharmacist says it will make her drowsy and I am supposed to give it to her 3 times a day! Does anyone have any experience with this?
 
Sorry not familiar with the meds. I hope it is not IBD for both your sakes but if you get to the point of scopes it would give you an answer, I would push for biopsies at the scope and you would then have an answer either way if it gets to that point
 
Grace had normal everything but scopes!
Push if you feel her dx is not right. A year and a half we had to push for answers!
First look up IBS. Does it fit your kid? If it doesn't ask your doc where it's coming from?
I also hope your kid doesn't have this but you need answers.

Hugs to you and your kid.
 
nursejulieanne said:
She did put my daughter on dicyclomine for her stomach pain. I am a little confused as it says it slows down motility, and with her constipation I can't see how that would be a good thing.
Click to expand...

Before my son's dx, he had chronic d with blood. His first pediatrician thought the blood could be from constipation and wanted us to try a laxative!! We soon had a GI consult…and a new pediatrician!

I hope her symptoms magically disappear and you never have to consider IBD or any other D again!
 
I hope they are right and she does NOT have IBD. With that said, all of Devynn's tests looked normal. It was only the biopsies they took when they did her scopes, that showed UC. ((((hugs)))) I hope she's feeling better real soon.
 
Thank you all. IBS does fit, and I am hoping she is right and it is not IBD. She does have the over active gut and daily pain that can come with IBS. The thing is she has pain that is not associated with bm's also. Here are the diagnostic criteria:

People with IBS tend to have overly sensitive intestines that have muscle spasms in response to food, gas, and sometimes stress. These spasms may cause pain, diarrhea, and constipation.
IBS may be a cause of recurring abdominal pain in children. The diagnosis of IBS is based on having abdominal pain or discomfort plus any two of the following:

The pain is relieved by having a bowel movement.
The onset of pain is associated with a change in the frequency of stools.
The onset of pain is associated with a change in stool consistency.
The symptoms must be present for at least 12 weeks in the preceding 12 months, and there should be no diseases that might cause the symptoms.

Children with IBS may also have headache, nausea, or mucus in the stool. Weight loss may occur if a child eats less to try to avoid pain.

Like I said, it does fit. The doctor just doesn't seem to think that the morning stomach pain fits so well, which is why she is thinking that part may be reflux, but I think it is her stomach. She poops within 30 minutes of getting up every morning, and has stomach pain with this.

Anyway, I appreciate again how welcoming you all have been. You have all been a HUGE help!
 
Devynnsmom said:
I hope they are right and she does NOT have IBD. With that said, all of Devynn's tests looked normal. It was only the biopsies they took when they did her scopes, that showed UC. ((((hugs)))) I hope she's feeling better real soon.
Click to expand...

Were those biopsies from an upper or lower scope?
 
UC affect the colon, ONLY. So it would be lower scopes.
Crohn's can happen anywhere in the GI track. So that would be upper and lower scopes.
 
Here is the problem Ibs fits everyone with Ibd but not the other way around.
The main difference is micro changes seen in the cells which can only be seen in biopsies from a scope.
We had to push since even DS scope looked mostly normal
Only biopsies should it.
If she is doing an upper request a lower at the same time since she will already be out.
 
I don't know, it is all so confusing and frustrating. Is there enough evidence for me to push for a colonoscopy with the egd?
I can tell you that she has had 2 doses of the ibs medication and she was having stomach aches again this morning. The doctor said the medication should work right away. So, I am really not feeling good about this.

But I asked the GI doctor several times if there was anything else we should consider and she said no! I asked again about IBD and she said the fecal tests would have been positive. So, in her mind, the pain is either ibs or reflux. I just don't agree.

This morning she complained of her stomach hurting again, first thing, she had a large stinky BM and then I took her for her occupational therapy appointment. As soon as I told my daughter where we were going, the first thing she said was "mommy what if my tummy hurts? Do they have a bathroom?" A 4 year old should NOT have to worry about this!
Then we were there for 15 minutes when she came to me telling me that her tummy hurt again. We rushed to the bathroom and here comes another stinky bm.

Am I making a big deal of nothing? Could she just be over sensitive to her bowels moving? I don't know what to think anymore.
 
No she shouldn't worry about where the bathroom is. Poor baby. Grace never showed anything in her stool and blood. I think the younger they are they tricker it is for doc to dx. I'm not a doc, just a mom.
 
I don't know much about the fecal tests as my son didn't have them done, however, when I asked why not, our GI said they are more indicative of inflammation in the colon and my son's inflammation is mainly in his small bowel (area where the fecal tests are less reliable).

Good luck!
 
I can't fathom how they plan on diagnosing IBS without thorough testing. IBS is a disease of omission...it can only be diagnosed after everything else is ruled out. I had an endoscopy, colonoscopy, guiac stool, abdominal ultrasound, and lactose tolerance test before receiving an IBS diagnosis. I would push for the same for my child.
In the same tone, I am not sure I would be comfortable ruling out Crohns without a scope.
If your doc won't do it I would pursue a second opinion. (((HUGS))) and best of luck!!
 
Yes, the biopsies were from her colonoscopy and endoscopy (upper and lower scopes) everything looked good.. but the biopsies showed the UC.
 
My sarah was dx with ibs six months before her crohn's. At that point in time her only syptoms were severe pain once month and anemia caused by low iron.

Has your daughter has complete bloods including iron, folate and b12?.

Also have you look up the FODMAPS diet, the studies on this diet seem in be show improvement in up 80% of people using it for ibs.
 
I actually just realized this morning that yesterday the doctor said that most parents worry about cancer, but that something would have shown up on her labs if that were the case. I went over her online chart this morning and she did not do any other labs beyond thyroid and celiac. NO cbc or metabolic panel!
She did all of that with my son when we were investigating his reflux. So, her reassurance backfired! She doesn't even realize what labs she did! I emailed her today asking her if she would do those and reminding her of her comment.
 
Okay, so my next question is, if I get a second opinion, and they request the info from the doctor, she will know I am getting a second opinion. Does that mean I can't go back to her? She is at the hospital that my son goes to for all of his issues. I mean if they agree with what she is doing, that is fine, but then do I stick with them or go back to her? Is that a dumb question?
 
you can request all of her records be sent - this is done through the medical records department at most hospitals- there is a records release form on what you want released so it should not be an issue
Most docs do not even know you are going since they have other things to do and medical records can not say anything when you request them ;)

ALso good docs welcome second opinions - ours did- I felt bad but the doc basically said if it gets DS better that is the important thing not who does it.
 
I have IBS and dicyclomine did work immediately for me when I took it. I don't remember if it made me sleepy. It's been a while. My IBS was dx by eliminating Crohn's with scopes. I fluctuate alot between D and constipation, especially when I am stressed. Maybe being stressed about going out and being close to a bathroom brought on more D.

I would certainly get that bloodwork and a 2nd opinion. Dr shouldn't care and will probably be too busy to ever know. If a Dr is upset about a 2nd opinion, that's not right.

Hugs!
 
A doctor should not fear a second opinion and if they do then perhaps they aren't the doc for you. I wonder if the lack of more thorough testing is a little jumping of the gun because of your son? Just a thought.

I agree with all that has been said ...pursue further testing, starting with bloods, until you are satisfied that you have your answer.

Good luck!

Dusty. xxx
 
(((HUGS))) Our doc recommended a second opinion...now our doc works in conjunction with a GI from Boston Childrens, has consulted with his former coworkers at CHOP, and our old Boston doc who is now in Seattle. If your doc doesn't support a second opinion they don't have your childs best interests at heart.
 
jmckinley said:
I have IBS and dicyclomine did work immediately for me when I took it. I don't remember if it made me sleepy. It's been a while. My IBS was dx by eliminating Crohn's with scopes. I fluctuate alot between D and constipation, especially when I am stressed. Maybe being stressed about going out and being close to a bathroom brought on more D.

I would certainly get that bloodwork and a 2nd opinion. Dr shouldn't care and will probably be too busy to ever know. If a Dr is upset about a 2nd opinion, that's not right.

Hugs!
Click to expand...

She has been on it for 3 days now and is still complaining of her stomach hurting like it always does. Especially after she eats and with bowel movements even though the bowel movements are soft. I just don't get it. Obviously the medication isn't working.
 
You're right...sounds like it isn't working. I'd get her back in to the GI if I could or at least ask them to do those labs. I know they said it wasn't IBD, but my son's crohn's acts like this. I hope she feels better soon.
 

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