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Help Please 14 year old daughter heart issues and now crohn's???

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Crohn's Disease
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Posted 12/27/2012 4:46 AM (GMT 0)
Hi there, I am the mom of a beautiful 14 year old girl who, unfortunately, has had a lot of medical issues. She is a twin and was born early with a heart defect. She has since had open heart surgery to correct her heart defects, but then developed some arrythmias as a result of her open heart surgery.

Recently, she has had some stomach pain as well as low heart rate ( bradycardia's). Originally, some of the doc's thought maybe the slow heart rates were causing the stomach pain. She has had a lot of gas, belching,nausea, mid-stomach pain. She has also lost quite a bit of weight.

A little backround on me...I have had crohn's disease for 12 years. It's slightly active, I'm doing well, and have been on no meds for this. I basically follow a gluten free diet, and take probiotics. I am a double asca positive. The doc's thought I had a pretty severe case due to my serology. Thankfully, I am doing very well.

Due to my daughter's symptoms and my crohn's history I decided to take her to a pediatric IBD expert. This doc did not think she had any symptoms at all of crohns and chalked it up to IBS or reflux. She prescribed some Zantac and Previcid which did not work. Being the neurotic mom I am, I decided to push the issue and push for some more tests. We set up an appointment for an endoscopy and colonoscopy. Due to my daughter's low heart rate the doc was not comfortable doing the colonoscopy ( she also said her symptoms were mostly upper and colonoscopy would not show anything). She had endoscopy which showed mild gastritis. Finally a diagnosis.

My daughter proceeded to take meds for gastritis, but they did not work. Her symptoms (upper abdomen pain, belching and nausea) were not subsiding. I asked the Doc for an MRI of the stomach and intestines. The doctor didn't think it was necessary and that anything would show up. A couple of months later I demanded the MRI even though the Doc was reluctant.

We got the results of the MRI back today and to my suprise, it came back as mild, active crohn's in the ileum! This is shocking as she doesn't have the typical symptoms of crohn's. I feel as though I'm pretty well versed in this disease since I have researched so much about it and have lived with it for 12 years. The IBD specialist is equally as shocked since my daughter doesn't fit the profile. All blood work is normal and she is quite tall for her age. She wants to do a colonoscopy to get tissue samples. My question is, can an MRI diagnosis crohn's? The MRI showed inflammation and dialation in the terminal ileum. Sorry for such a long post. I'm just in shock and hoping someone can shed some light. Thank you so much for reading this.
Posted 12/27/2012 5:33 AM (GMT 0)
Hi twinsrock,

Sorry to hear about the issues your daughter has been suffering from.
An MRI has the capability to detect pathologic bowel segments with high sensitivity and specificity. This technique plays an important role in diagnosing complications such as fistulas, abscesses and accurately assess inflammatory bowel changes. Along with the lack of ionizing radiation.

Here's information I found in regards to the use of an MRI and Crohn's disease.
"The use of magnetic resonance imaging for Crohn's disease sufferers has now been quite well established, both in research and literature. A specific, non-invasive imaging technique, called MR Enterography, yields high contrast images of intestinal inflammation, abscesses and fistulas in the small bowel. It utilizes dynamic image acquisition following the administration of intravenous contrast to provide information about the time course of bowel wall enhancement. This serial imaging of bowel wall enhancement over time may help to distinguish active disease from inactive disease. Such dynamic imaging is not routinely performed with CT (computed tomography) because of the radiation exposure associated with serial image acquisition. As a result, MR enterography has been shown to be superior to CT for differentiating between acute and chronic inflammation in areas of the diseased bowel, which is critical for deciding on medical vs. surgical treatment. Recent studies comparing CT enterography and MR enterography have demonstrated that both techniques are excellent at detecting features associated with Crohn’s disease and that the differences in sensitivity and specificity between the two techniques were not statistically significant."

Link-
radiographics.rsna.org/content/30/2/367.full

A Colonoscopy and getting a biopsy would be ideal. These are the tests that should be performed-
A physical examination by a GI, checking for tenderness or any inflammatory masses present at the lower right quadrant of the abdomen.
Also the GI should do a complete blood count test. This is to possibly reveal if Crohn's is present, Anemia, White blood cell levels, Differential, Platelet count and an ESR (Erythrocyte sedimentation rate). Also Stool tests. Then further testing to be included, Radiologic and Endoscopic Testing. Such as a CT, Ultrasound, MRI and Endoscopy.
I'm glad that you pursued getting an MRI and have been proactive to help your daughter get the tests done.
I hope this helps and wish you daughter all the best.
Posted 12/27/2012 6:44 AM (GMT 0)
Thank you very much for your thoughtful reply. Yes, we will do the colonoscopy with biopsy. She has had a GI exam, no tenderness or mass at the right quadrant. All blood tests were also within normal range including Prometheus test. She had the fecal cal protectant which was also normal. The endoscopy showed mild gastritis, no crohn's present. The GI doc is baffled and thought the chances of finding crohns was less than 1% since all other tests are negative.
Posted 12/27/2012 2:40 PM (GMT 0)
twinsrock, what meds did you try for her gastritis? I ask because my daughter was also treated for gastritis around age 10-11. It took us three different ppis before we found one that really gave her relief. She stayed on that ppi (Dexilant) for about a year. I think the onset of gastritis coincided with the onset of puberty for her, and now that she is past menarche she feels a lot better. She still has episodes of reflux, but nothing as bad as when she was 10.

I'm sorry your daughter is struggling with these issues, but you are a great mom and I am confident you will figure this out.
Posted 12/27/2012 5:46 PM (GMT 0)
kazbern, thank you very much. Yes, she has been on prilosec, prevacid, and protonics. None of which worked. This came on right after she got her period too. The most concerning thing at this point is the most recent MRI which showed crohn's. Eventhough I have crohn's myself, I am still in disbelief. Like I said earlier, she doesn't seem to have typical crohn's symptoms ( but then neither do I, but at least I have the lower right abdominal pain). Her symptoms seem more like gastritis, so this new crohn's diagnosis is a hard one to swallow. We should know more after the colonoscopy.

You sound like you are doing really well without a lot of meds. That is great! I am gluten free also, and I swear it makes a difference for me..
Posted 12/27/2012 5:52 PM (GMT 0)
I am not sure I'd buy a Crohn's diagnosis via MRI. I think Datawraith is right in recommending a biopsy to be sure. I wouldn't choose to medication this condition without a confirming scope.

I was diagnosed at age 39, but struggled for many years with bowel issues. So I was worried, too, when my daughter started complaining of stomach aches. There is a significant family history of reflux on both sides, though, so a diagnosis of GERD wasn't a huge surprise. However, my daughter occasionally has blood in her stool. I would not be shocked if she ultimately gets a Crohn's diagnosis, but until she has more issues I am not going to have her scoped. I was relieved that she felt better after a few days on Dexilant and we continue to deal with her stomach complaints as if they are GERD.

So I guess my advice to you is to focus on the upper GI stuff. You listed just a few of the available reflux meds; I would go back to the DR and ask for a prescription ppi like nexium or dexilant or zantac. It often takes trying several different ppis to find the one that works for you.
Posted 12/28/2012 12:19 AM (GMT 0)
The advice you've been given here is very good. I'd just like to add one more thing to possibly check for. Have the GI check for gluten sensitivity. It might sound like a longshot, but I woudn't rule out Celiac Disease as of yet.
Posted 12/28/2012 4:39 AM (GMT 0)
Kazbern, hopefully neither of our daughters' has or will develop crohn's. I am praying that the MRI was over read and it is not crohn's after all. She has a colonoscopy scheduled for next friday so we should have a more firm diagnosis then.

We have tried nexium and zantac. Neither of them worked. She was diagnosed with mild gastritis via endoscopy three months ago. Since the meds did not work and she started gettting worse, we began to look into other diagnosis's, hence the MRI showing crohn's. Does your daughter take PPI's everyday? If she doesn't take the meds, does she notice more symtoms right away?

73monte, yes they have done a blood test for celiac. Are some patients diagnosed with celiac even with a normal celiac blood panel? I will make sure to ask about checking for that when she is scoped.
Posted 12/28/2012 3:55 PM (GMT 0)
They probably did a biopsy during her endoscopy to look for celiac.

I was tested by blood and biopsy and do not have celiac, and I am still gluten intolerant.

I hope the scope goes well next week!
Posted 12/28/2012 9:34 PM (GMT 0)

twinsrock said...
She has a colonoscopy scheduled for next friday so we should have a more firm diagnosis then.

Wishing for the best for your daughter twinsrock. As for yours as well kazbern, I hope for both of your sakes, neither of your daughters are diagnosed with Crohn's disease.
Posted 12/28/2012 11:18 PM (GMT 0)
Datawraith, thank you for your feedback and wells wishes. I will let everyone know what we find out after the colonoscopy is finished....
Posted 12/29/2012 12:40 AM (GMT 0)

twinsrock said...
Datawraith, thank you for your feedback and wells wishes. I will let everyone know what we find out after the colonoscopy is finished....

You're most welcome twinsrock. I didn't hop back into the conversation because kazbern had been helping you out and she's wonderful. Yes, please let us know the results of the Colonoscopy.
Posted 12/31/2012 3:34 PM (GMT 0)
The MRI was the final way we knew what truly was going on with my daughter (age 12). When she was hospitalized in September she was so inflamed from top to bottom including her pancreas & kidneys it was hard to fully diagnose. She had a colonoscopy & endoscopy with biopsy. The scopes showed Crohn's, the pathology showed UC. She was diagnosed with indeterminate colitis as the tests seem to point in different directions.

Last month she went for an MRI and between the test & the inflammation settling somewhat, she finally was diagnosed with Crohn's. I agree it is important to go through all the tests, but it was the MRI that made us finally have the name of what this really is. I hope you get the answers you need.
Posted 1/3/2013 7:00 AM (GMT 0)
SupportiveMom-Thank you for your reply. What were your daughter's symptoms? My daughter has pain almost immediately after eating with nausea and upper mid abdominal pain. No lower abdominal or right sided abdominal pain.
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