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Concerned about Crohn's in son

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Crohn's Disease
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Posted 12/26/2007 9:25 PM (GMT 0)
Hi everyone,

I'm new here but I'm hoping someone can help me.  I have Crohn's disease.  I was diagnosed almost 5 yrs ago.  It's a long story, just like everyone else's I'm sure.  Basically I was pregnant, had URQ pain, vomitting, etc.  Was hospitalized for pre-term labor & when my son was born 10 weeks early, they found a perforation in my small bowel.  It was really bad.  I had peritonitis & the doctors told my husband to say goodbye to me because they didn't think I would make it.  I later had the SBFT & was diagnosed with Crohn's, had a bowel resection, etc.

Anyway, my son is now showing some of the same symptoms I had when I was a kid.  Strange rashes, joint pain, skin tags around his rear and complaining of stomach pain.  His stools are very inconsistant.  Diarrhea one day.  Constipated the next.  He's also had blood in his stool twice.  One was as a baby when he was still in the NICU & the other was when he was about 2 and the doctor did a rectal exam because he was complaining about stomach pain. 

The thing is, now that I look back, I was showing signs of Crohn's as early as 6 when I was hospitalized for joint pain and fevers.  At the time no one could figure out what it was but now all the doctors say it was Crohn's.  I also had all kinds of weird rashes on my legs and went to the doctor all the time complaining of stomach pain, only to be told the rashes and stomach aches were because of my nerves, which is funny (now) because I'm actually a really, really calm person.  Of course, they also now all agree that the mystery rashes (that I still get) are also because of Crohn's. 

I've talked to the doctors before about my concerns but they just tell me that Crohn's doesn't normally show up in kids his age (almost 5).  They pretty much chalk it up to me being a crazy mother.  My fear is that he does have Crohn's and it will go undiagnosed for years until he has a catastrophic event like I did.  I don't want him to go through all of that if I can avoid it.  Of course, I don't want him to go through all of the tests to diagnose it either.  Especially if everything is normal. 

After my son's latest bout of stomach pain, combined with a mystery rash, my husband is getting worried now too.  We are taking him to the doctor tomorrow.  Does anyone have any advice about how to talk to the doctor? 

Thanks for your help!

Writer Mom

 

Posted 12/26/2007 11:27 PM (GMT 0)
I know what you are going through. I have a 10 year old who has been having stomach pain on and off for years. I was diagnosed only a year ago but have had a resection already, and am worried that he could have crohn's. The doctors say its rare in kids and because he isn't skinny they doubt thats it. His ct scan and sbft were normal, done while he was hospitalized for pain and vomiting, but he has an endoscopy scheduled for February. I've had to push to get a referral to a pediatric GI, but now things seem to be getting checked out. He had a bout of pain and bloating last night, its terrible not being able to help him. At 10 he can handle the tests, but if we could have figured this out when he was 5 it would have saved him alot of pain, I think. If our primary doctor wouldn't have referred him, I would have found another doctor who would have. I think if you go in there educated about what tests could be done and let the doctor know that you are ready to take the next step in finding the cause of his symptoms, whatever it might be, he might be willing to take the risks if you are. Good luck, let us know what the doc says.
Posted 12/27/2007 5:01 AM (GMT 0)

Dear writermom,

        Sadly being diagnosed at 5 isn't very uncommon now a days.  We have a few moms in our support group who's children were diagnosed at 18 months and 2 years old.  My son was 7 when he was diagnosed.

  I suggest you have his dr run his labs to see if anything is out of the normal range.  Sed rate, albumin, hemoglibin, hematocrit, etc.  Also ask them to do a stool sample.  You are your only childs advocate!  If you dr resists to run any tests, find one that will!

Best of luck.

Debbie

Posted 12/27/2007 7:51 AM (GMT 0)
Hi to all you other moms of CDers -

In case you haven't already found it, you might want to check out the Dragonpack IBD parents forum at http://www.dragonpack.com/ibdsupport/parents/

My son was diagnosed with Crohn's at 10 after more than 6 months of bloody stools and severe constipation. Because he had an unusual presentation it took a long time to get a diagnosis - he wasn't rail thin, he didn't have diarrhea, he had some belly pain but not much, he wasn't throwing up. But he did have fissures, a skin tag and lots of blood in his stools. Turned out he had a bleeding ulcer in the TI along with extensive ulceration in the jejunum and inflammation with ulceration throughout the colon. He had growth failure going back at least 3 years and I believe he has suffered from Crohn's flares since infancy but no one would listen to me when I said there was something wrong.

The gold standard for a Crohn's diagnosis is a combination of colonoscopy w/biopsies, endoscopy w/biopsies, SBFT and, if no strictures are found, an MRI or CT scan or a capsule endoscopy to fully examine the small intestine. But if it were me, I would ask the doctor run a Prometheus IBD Serology 7 test along with a comprehensive battery of blood tests - CBC, liver panel, kidney panel, H&H, ferritin, ESR and CrP and a battery of stool tests including occult blood test. Even if you have to pay for the Prometheus 7 test, it can be very helpful on many levels. It now carries a much higher accuracy rate for diagnosing IBD than it used to do (92%). If positive, the combination of positive markers may indicate whether your child is at risk for more aggressive disease pattern than would warrant starting with immune-modulating or immune-suppressing meds ASAP.

Besides being thin, most boys with Crohn's have short stature. You might want to check your son's growth curve over the past 2-3 years and see if he has continued to grow at a "normal" rate or not. If not, then be sure to point this out to your doctor. You can figure out your son's growth trajectory at this website https://www.nutropin.com/patient/3_5_4_growth_velocity.jsp

Best wishes and maybe we will see you all over on Dragonpack too.

Patricia (Badger, 12, CD, Humira (clinnical trial), 6-mp, omeprazole, miralax, sertraline, supplements)
Posted 12/27/2007 5:03 PM (GMT 0)
Take your son to a pediatric GI.  Please don't let this slide until he gets worse and it is obvious to the doctor.  I know kids as young as 2 with Crohn's, and it seems those often are kids whose parents have IBD.   My son was diagnosed at 6. He did not present with stomach pain or diarrhea.  He did have weight loss, lethargy, and occassional low grade fevers.  I thank god for a wonderful pediatrician who did not pooh-pooh this as many others do.  When she drew blood, his albumin was low, he was anemic, and she sent me to the pediatric GI.  
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